Pudendal and Other Nerve Damage – Posterior Femoral Cutaneous, Ileoinguinal and Obturator in the Transvaginal Mesh Patient

Mar 20th, 2013 | By | Category: Medical News
Pudendal nerve, YouTube

Pudendal nerve, YouTube

March 19, 2013 ~ The author of this article cannot be identified because she is involved in mesh-injury litigation. She is a registered nurse. Thank you for authoring this article.

The transvaginal mesh (TVM) patient with pudendal nerve damage (PND) and/or other nerve damage may have some or many of these symptoms. The more symptoms reported, the more likely the diagnosis of PND or other nerve damage.

        Symptoms reported by the patient will depend on the nerve involved, location of injury on the nerve, and severity of the injury. Other mesh-related complications, such as vaginal and other tissue erosion or mesh in the urethral or bladder wall for example, may complicate the clinical picture even further.   Symptoms may be considered “mesh-related” if they were not present before the TVM surgery and started at some point after it.

       Symptoms may be present immediately after TVM surgery or may not appear for months or even years later. Pain and other symptoms of nerve injury by mesh can be much more severe than outward signs of other mesh complications indicate. Because of this, the patient’s complaints should be taken very seriously and mesh removal should be strongly considered by experienced and capable surgeons.

      Mesh removal should be considered even if other signs of complications, such as erosion (or extrusion) and infection, are not apparent by cystoscopy, vaginal exam, or diagnostic testing. The patient should be listened to and evaluated closely for pelvic nerve damage, even if referral to another specialist is needed for safe removal. If TVM is the cause of the pain and other symptoms, the sooner it is removed, the higher the chance for complete recovery.Pudendal nerve from youtube 300

     Below are questions to consider: Ask the patient Do you have:

Activity/General:

– Increased groin or pelvic pain with SITTING? Do you have to sit on one side of the buttocks or other?

– Perineal or pubic pain that MAY be relieved when sitting on a toilet seat? (probably due to being able to “relax” urinary muscle tightness without fear of wetting oneself).

– May be confusing because of possible increased pain/pressure with elimination in general- due to increased pressure of a full bladder or stool in the rectum on the injured nerve. In this case, pain, especially of the inner thigh(s) and inner aspect of the buttocks, may increase from sitting on a toilet seat due to the increased pressure on the nerve itself.

– Perineal pain when sitting that is eased by sitting on a cushion?

– Increased pain when lying on the affected side or both sides, and is pain decreased by staying off side(s)?

– Difficulty driving due to increased groin or thigh pain when leg(s) are extended?

– A “foreign body” sensation, usually by the anterior pubic bone, but also the inner thigh or inner aspect of the buttocks cheek? (Sensation can range from a “heavy fishing weight” to a pebble to an ice pick. Many times pain radiates out from this area).

– An area in the groin or inner thigh that feels as if it is “pinched” or feel like it has a “clamp” on it, or have much “pressure” there?

– An “achy” pubic bone pain or suprapubic pain that feels like one has been “kicked in the crotch by a horse”? (Many transvaginal mesh patients have described this painful sensation as “ECP” or “excruciating crotch pain”).

– Chronic or intermittent perineal or inner thigh/leg numbness and tingling?

– Very weak and achy inner thighs and pelvis? May be equal or worse on one side than the other.

– Much difficulty going from sitting to standing?

– Increased pain of the thigh crease when leg is bent?

– Increased groin and inner thigh soreness, pain, weakness, and fatigue with prolonged walking, to the point where many times you feel like you cannot continue or even need to use a wheelchair?

– Pelvic pain and weakness that increases as the day goes on? May be better in the morning than in the afternoon.

– Increased pelvic and inner thigh pain when trying to climb stairs?

– Sudden pelvic “jolts” and “twinges” which “grab” you, usually worse during and after activity but may also occur at rest.

– A feeling of walking “unbalanced”? Maybe sometimes walking with a wide gait, stumble frequently, falling or close to falling at times?

– Pain that usually worsens with activity and, many times, worsens AFTER the activity or even the next day?

– Much inner thigh and generalized “tightness and pressure”?

– Increased sensitivity to wearing underwear or anything “snug”?

– Have increased pain when legs are together? Opening and stretching out inner thigh area helps to relieve tightness and pain. May sleep with a pillow between legs (if able to sleep on side).

– New-onset increased muscular aches, pains, and spasms, especially of the pelvis, flank, low back, and hips? Psoas muscle (extends upward on both sides of the abdomen from where it attaches in the low groin) may be involved. Makes one feel as if she cannot stand up straight.

– Sacroiliac instability since TVM surgery, possibly diagnosed by a physical therapist?

– A very uncomfortable, hard to describe, irritated-feeling perineum or pelvis similar to what it might feel like if one had a “splinter” on their “funny bone”?
pudendal nerve 4Elimination Symptoms:

- Symptoms of urgency and frequency that seem to be more related to pain than with fear of being incontinent?

– Urgency that is painful?

– Relief of, not only pain, but urgency and frequency, when taking pain medication?

– Increased pain with bowel elimination, since mesh, and unrelated to other causes such as IBS?

– Dysuria (pain with or immediately after urinating)?

– Hesitancy or a weak, fluctuating stream? (May have increased pain and/or urethral spasms with voiding)

– A feeling of needing to void, even if you know your bladder is empty? Does your bladder feel empty to you even if you still have a strong urge to urinate?

– The feeling of having a urinary tract infection (UTI), with or without burning, but urinalysis usually does not show infection?

– Urinary urgency and frequency that may be severe?

– Urinary urgency and frequency that seems to be related to the increased pressure of a full bladder on other structures, not pain or pressure from the bladder itself?

– New-onset pain when urinating or immediately after and/or pain with bowel movements that does not resolve after the usual postoperative period?

– Increased sensitivity when you “wipe” after using the toilet? Do you feel you sometimes need to “pat” instead?

– Frequent urinary tract infections- much worse than before mesh surgery?

Sex:

– Dyspareunia? (Pain with sex) May be only on one side or in one particular area or spot.

– Pain that increases with just engorgement? (without even being touched)? Or do you have too much clitoral area pain to even think about sex?

– A burning or “raw” feeling in your groin or vagina?

– Pain with orgasm? (doubt most women will bring this up on their own).

– Decreased or altered sensation with relations?

– Noticeably increased inner thigh and/or perineal pain the day after engaging in intercourse?

– An area or side of the vaginal wall that feels like it is “paralyzed” or like nothing is tightening when you try to kegel?

– New onset intimacy issues since mesh surgery?
Emotional/Psychosocial/Other:pudendal nerve 2

- The feeling you are a different person since surgery, never really “snapping back” like you thought you would, always complaining of pelvic pain and not feeling well?

– Trouble coping at work or social situations due to pain and symptoms since surgery?

– Frequent complaints of other physical symptoms since surgery such as nausea (pelvic, urinary pain), headaches (insomnia, stress from symptoms), extreme fatigue (pain, insomnia, stress), “flu-like” feeling?

– Weight loss (pain and symptoms) or Weight gain (inability to exercise)?

– Difficulty sleeping and staying asleep due to generalized pelvic, groin, or upper leg pain, positional pain, and/or severe urinary symptoms?

– Difficulty functioning during the day due to insomnia from new onset pain and symptoms developed since mesh surgery?

– Difficulty exercising due to new onset pain and symptoms?

– Difficulty spending time with family and friends doing activities you usually enjoy due to new onset pain and symptoms?

– Difficulty with interpersonal relationships due to new onset pain and  symptoms?

– Exaggerated feelings of depression or extreme anxiety due to new onset pain  and symptoms?

 

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222 Comments to “Pudendal and Other Nerve Damage – Posterior Femoral Cutaneous, Ileoinguinal and Obturator in the Transvaginal Mesh Patient”

  1. Anonymous says:

    Truly have no idea how I manage to find this website!! I can’t stop crying! It is all about me in this artical. I am in France, I am so lonely and next week I will have my 5th surgery in just over 3 years. Wish I could find some one to help me. Before surgery I play tennis, ski etc and I was fun to be with. Now I am invalid grup 2 waiting for time when the Prolift ends my life.
    Please, can you pass my very big ‘Thank You’ to lady who wrote this.
    I don’t know how to find help!

    • Jane Akre says:

      I am so sorry this is happening to you. Unfortunately you are not alone, but that may also offer you some comfort. I will see if the author will connect with you. I’ve not heard of removal doctors in France so anyone can jump in here please! Ironically, much of the Prolift research was done in France for Ethicon (Johnson & Johnson), Michel Cosson and Bernard Jacquetin.

    • Linda says:

      I don’t know you personally but I am your sister living in the same hell you are living in with the horrible mesh inside me. I only have the desire to reach out to comfort you and let you know you are not alone. In the nights when I lay in bed and think I can’t take the pain anymore I see a shadow out of the side of my eye and know that I am not suffering alone. If you ever see that shadow, talk to him, he will help you through the night all you have to do is ask. He was with me when I went thru the withdrawals of morphine Some awful nights but I was not alone.

      Please feel the care and love I am sending you

      • betty says:

        I know the feeling very well. It sucks to be us all. I have lost so much over this that no matter what happens I will never be the same women I was before surgery. I no longer can play with my grandkids or walk my 2 dogs around the block let alone walk them anywhere. :(:( And sex what is that!!!! I haven’t felt a man in over 3yrs.

      • Carly says:

        Linda, you are not taking nothing for the pain now? I’m still take two different kind of Morphine for the pain. There is so many times I just want to end all this pain….I take pain meds and still in pain. I do have Prudential Nerve damage and had surgery on the left side and I still have damage on the right side. My Dr told me it could take up to 5 yrs to get any better and if I am not better in 5 yrs then that is how I will have to live. I’m in bed a lot cause I can’t sit,stand or walk long at all…maybe 15mins. My heart aches for anyone that is going though this. Love to all! !

    • Jessie says:

      I know EXACTLY how you are feeling. I am crying right now reading this. I am SO sad.

    • linda says:

      Hi anonymous. I know a lady in France who found a doctor there who removed it all including anchors. Her is a children’s urologist and I will try to get her information before too long. I will be away for more than 2 weeks at UCLA and will work to try to find her. I have spoken to her over the phone but it has been awhile. Give me time and I will try to get her to contact you.

    • danyelle says:

      WOW. 20-years ago I had the Marlex mesh inserted to reconstruct the abdominal wall following removal of the abdominal rectus muscle and desmoid tumor that was attached. Seven years later I started having MANY of these problems, it was written off as IBS. Within a year I was in a car accident and it complicated diagnosis. Despite not being to explain the severity of the pain nor the inability to participate fully in my life and that of my children (as a single mother with 3 kids under 18 and NO help @ home)– I became totally disabled in 2001. Since that time the nerve pain has only steadily increased……
      I had seen the TVM lawsuit ads for the past two years and one day I simply wondered if there was any connection to my mesh…. Indeed, 12years after being deemed totally disabled I have finally found the answers to why. I have 25 of the symptoms listed above. Thank you for such a thorough job of explaining. For the first time in more than a decade I have HOPE that we can finally begin to address the problem, my fear is that because it has gone on for so long, the damage may be irreparable. Prays for all of those suffering and all those who support them!

      • Linda Wilson says:

        I surfer right along with you … I have had mine for 7 years now, and I’m just now trying to find the best doctor to remove it. But now after all of this time, It doesn’t even show up on a contrast C.T. I know that Doctor Raz, 9 I could be spelling his name wrong ) in California is the # 1 BEST TO REMOVE IT…. My husband is Army retired and my incs. with them is sending me to FL. to see a specialist there. But as of today I let my voice be heard to a few people with my incs. company that It was not going to work out in seeing this doctor in Jacksonville FL…. I really think that my mesh is just laying around inside of my stomach in such small pieces…. Going every where… Ir you read my first post on here you will be able to read what I had to prolapse on me, and the product that was put into me. Hanging in there with all of you… Linda W

        • Sarah says:

          Hi there, I had the tvt-o put in August 12th 2013. It started eroding immediately into my vaginal wall. I did not trust the dr who put it in to begin with because I had to all but throw a temper tantrum in his office to be able to see him after having over 2 months in the most excruciating physical and mental pain of my life. I emailed dr Veronikis in St. Louis Missouri on a Monday am. He called me back a few hours later. I had a Pre-op / consult appt the next day and on Wednesday I was getting my tvt-o removed. I know that this was highly unusual for things to work out this way but dr V understands that we are in pain. Before the mesh removal when they were preparing me the nurses and staff told me that dr V often gets the toughest of the tough patients that even the doctors at UCLA refer to him. Let me tell you I had the absolute best of care by dr V and he confirmed my tvt wasn’t even placed in me right to begin with. You can find his email on the tvt-no web sight . I was doughtful that the actual surgeon would call me himself, but he did, and here I am 3 weeks post removal and am already doing better than I have in months. Just trying to help. I understand the hopelessness and desperation of knowing you have something inside of you that is ruining your life. Dr Veronikis can help you!!!!

          • kim says:

            Hi, Sarah how are U today , my name is kim and I am so desperate – I look at this site like every 2 to 2 1/2 months apart due to getting to depressed. today i read your’s and a lady named laura . I had a consult with dr. raz in callif. but cancelled yesterday due to wouldn’t be able to handle the travel have only travel 5 1/2 hrs. on 2x’s pain med and needed 3 day’s just to be able to sit and walk again only to have to due the trip back home in 4day’s latter. so callif would be unbelievably un possible, now St louse is crosser I believe – and I do believe I could be knocked out for the journey I’ve been told-haven’t been to Dr. to verify that yet but will call today to ask for appointment to see if dr. can knock me out that long of a travel to get to this dr. U talk about I live up state NY- I have infection’s like the worst pain in my life. I would love to talk to U I could call u if you were up to it. thanks Kim

      • Theresa says:

        Does it matter what kind of mesh was used in a person after surgery or is it all surgical mesh that has become a problem? How did you find out for certain if they used mesh and what kind?
        I had a complete abdominal hysterectomy 18 years ago. I got a copy of my medical report of the surgery and pathology. Nowhere was mesh listed.
        Thank you and take care,
        Theresa

        • Jane Akre says:

          Theresa- likely 18 years ago…. 1996, mesh was NOT used on you. It came into popularity in 96-97 with the ProteGen and in 98 with the TVT and TVT-0. You should have your medical records… all of them, nurses notes, records that went to insurer….That applies to everyone! But it is good to ask. Most people were not told. How’s that for informed consent?

    • Lee Tee says:

      Many of us have the same problems with the mesh implants, I am in Florida. I was unable to find any doctors to remove all of the mesh, and some were very untrustworthy. I am going to UCLA Dr. Raz in December , who removes all of the mesh. You can read about it @ teapapers.com/bladdersling……I got the information from this website from Linda’s blog. Many people from other countries are going there to get it ALL out. This does not guarantee that all of your symptoms will be gone, but getting it all out to me is the most important thing in my life so that I do not get any more damage. I pray we may all be healed and I hope this helps some of you.

      • Jane Akre says:

        Congratulations Lee! Dr. Raz has helped many people from around the world. I really do not understand why he has the skills he has, but you are on a good path. Please get back and let us know how you do!!

    • Renata says:

      Dear my friends

      I feel all your pains. I have been going through the same problems. Prudendal Neuralgia is hard to diagnose. Many times doctors mistake it with pelvic floor dysfunction and treat you for that. I searched as much as I could about my symthoms online and diagnosed myself and found a doctor Neurosurgeon in Santa Monica who will be treating me. He recommended nerve blocking injections and possible surgery if necessary. The doctor name is Dr Filler. He invented an MRN – M R neurograpy system that actually proves and the images shows your nerve. I recommend you find help from a neurosurgeon because symthoms are getting worse not better by time. Also stress will flares up mine usually. Maintaining with regular chiro and acupuncture, massages and even colonics what’s gets me through the days. I am wishing you all the recoveries. I have been through a lot with this also.

    • KeepingFaith says:

      My heart goes out to all of you, I may not feel the pain that PNE sufferers are facing, but my fiance who I love so much is suffering from PNE. He is from France and looking to have a hospital where he can be given surgery. We stayed together for a few months and I know and saw the pain he was going through, but now we are temporarily apart, but everyday on video call, he had a consultation yesterday, but came back feeling depressed as the doctor gave him no hope and how it breaks my heart that today, he told me he wants to end his life. Please can anyone here please tell me a competent doctor that he can go to and give him hope, a surgery if need be. Please let me know. Thank you

    • jessica says:

      I too cannot stop the tears. Dec 2013 was my 4th sugery on my lady parts in 4.5 yrs. Thank you so very much for writing all the many different symptoms down. There are many days that I truly believe I am either crazy or just not strong enough to beat this. This article eliminates this on going fear. Bless you and printing this one out for sure!

      • Mik says:

        How do you find the doctors that will help or do surgeries, I have mesh damage, nerve pain, everything for 3 years now, had mesh removal 11/2012, got better until I increased my activity after four months after the mesh removal, now I’m in terrible pain, and the anchors are still in there, everyone says its to dangerous to remove them, yet they push on the nerves and everything else down there, terrible pain, burning, stabbing in my legs.
        how to find the right doctors to help me?????

        • Jane Akre says:

          MIK please visit the Facebook page ( front page click on the Facebook logo) to see which doctors people are discussing… thank you! where are you located? that might help. please go to the best docs!

          • Mik says:

            Oregon, I need a nerve Dr. someone that can remove or kill the nerve in my groin and vaginal area

          • Carly says:

            My Dr is in Maryland…….I had surgery on my Prudental Nerve on June 2013 it was an entrapment……still have lots of pain still on pain meds. My Dr told me it could take up to 5 yrs before I get better if I get better. 66% chance to get better. I think there is a Dr in AZ that does the Nerve….that would be the only two Dr I know that do it. Good Luck. I hope some of this info can help you.

        • Rose Abandola says:

          I have read so many postings and it is truly said. I have suffered from so much nerve damage in my back, hip and knee just shortly after have the implant and didn’t relate to possible erosion of the mesh, but, now I am seeing that it is a strong possibility. If anyone can tell me how I can go about finding out what the condition of the mesh is in at this time, it would be appreciated. My urologist is being absolutely no help. Thanks, Rose

          • Jane Akre says:

            Rose- I’m not a doctor but you will need your medical records,, all of them including nurses notes and insurance billing records, You need to know what kind of mesh you have. Do you have access to translabial ultrasound or transvaginal ultrasound. My understanding from experts is that is how you ‘see” the mesh… not with an MRI. Most docs do not have this so they go in blind. Others who have had imaging_ please chime in here… Experts also say you do NOT want a partial removal because fragments can be left behind making it more difficult to find those fragments. And who wants repeated surgeries? The harsh reality is you will probably have to travel to the few docs who are doing removals….~ ja

          • Carly says:

            Rose, I have prudental nerve damage and had surgery June of last year. I went to a pelvic Dr that found my and he sent me to have a MRN just like a MRI except the MRN scan the nerves only. I still live with a lot of pain and still on pain meds and need to use a cane when I walk. Still can’t sit, stand, walk for more then 20 mins……I have not driven my car in 2yrs. I live in MD if you would like some info about the DR that did my. Also my MRN show an entrapment, I hate living my life like this just holding on to hope that I will get better from surgery my Dr said it could take up to 5 yrs. God Bless Everyone!!!!

        • Lisa says:

          Carly, I just found this website and saw your post from June. I am also in Maryland and think I have PND. I have been to numerous doctors and no one seems to be able to help me. I would really appreciate if I could get your doctor’s information! You can email me at: licolbert@gmail.com.

          Thank you!
          Lisa

    • Rose Abandola says:

      I too have no idea how I came to this website, but, am truly grateful I did. The anonymous person has told my story of my life since early 2011 just about a year after having the vaginal mesh sling put in place. I am now on a mission to find out more about all the possible effects with this procedure and how I can possibly have it corrected if there is even a treatment available. If anyone can make a suggestion it would be so greatly appreciated and as I find out information I will post. Thanks Rose

    • Laura Thayer says:

      I was wondering if anyone has pursued the mesh litigation claims and what the results are? I just want enough to pay all existing medical expenses and be able to pursue further medical treatments which may provide HOPE. Hope is a big key to anyone who has had the mesh placed, without hope you are alone and have nothing. Pain is enough to put anyone over the edge if they are going through it for any length of time.

      • Jane Akre says:

        Laura- Use the Search bar and go to Linda Gross, and Linda Batiste, and Scott – all trials that have jury verdicts in their favor. Carolyn Lewis had a directed verdict- in other words- the trial was stopped and Wanda Queen got a confidential settlement. All jury wins are on appeal. Any win is on appeal. Settlements are underway but there are no big windfalls there- barely enough to pay for one surgery…. ~ ja

    • Betty says:

      ME TOO ;( :(

    • Angie says:

      I am having same experience! Doctors trying to fit my pain into their box and not believing it could be the mesh!

    • Sandy says:

      This is my LIFE described. Less then 2 months I was back in my surgeons office, I went back 3 times. He pushed me aside told me I am mental. I hate mornings only knowing another day of pain and despair. I had both put into me. My Dr. never once told me or my Husband what could go wrong. I have no life, I spend at least 6 hrs a day on the toilet,the pain can’t be described. My surgeon no longer wants me as his patient. I finally found one that maybe able to remove this garbage. I am in pain 24/7 in a wheelchair,use a walker, I fall often. Praise God I have a wonderful Husband. I’ve gained 65lbs plus so tired. I will get retribution for the both of us. Can this mesh be detected by any test,NO!!! Forgive me for rattling on and on.the longest I was on the toilet was 11 hrs, how sad that we all were scared by this. I thank you for sharing with us all.

      • Jane Akre says:

        Sandy- Please tell us/ me where you are. You need medical help and perhaps there are others who know of some in your area. Your doctor is cruel. Please do not have a partial removal from someone who is not an expert. Thank you. ~ ja Write me at janeakre@meshnewsdesk.com

  2. Jane Akre says:

    I found the email of Michel Cosson in France who helped develop Ethicon’s Prolift. It was entered as evidence at a recent trial in New Jersey. I have no idea if it is a current email. ~ J. Akre

    Michel Cosson m-cosson@chru-lille.fr

    • linda says:

      The lady in France that I just spoke of went to every doctor there with questions in hand and none could remove the anchors. They are usually the problem with long term neuropathy. That is why she took a chance on a doctor who could not promise to help her but he decided to give her the best care possible and he did.

  3. tvtinfo says:

    One of the large studies of mesh removal was carried out in France. This is a study looking at TVT sling removal rather than Prolift but perhaps the doctors might still be able to help.

    Click here for the abstract: http://www.ncbi.nlm.nih.gov/pubmed/20462686

    The authors were M Rouprêt V Misraï, C Vaessen, F Cour, A Haertig, E Chartier-Kastler.

    Have you thought about setting up a discussion forum eg on Facebook? There are probably lots more of you out there also suffering in France.

    • Jane Akre says:

      Excellent idea- will do!!!

      • Linda Wilson says:

        Jane I want to think you ever so much for talking to me on the phone. You were so nice and so concern with my health. I’m going to stand tall and put up a darn good fight to get my live back on track and try to live a less painful one at that. I want so much to really get involved in this cause. And if the good Lord above will have me to help put my strength into it I will help in any way. Thanks again, you are such a strong woman to stand up and fight for all of use. God look down on you and bless you for it all… Linda

      • Catrina says:

        Hi Jane,

        I was so grateful to find this site. Please…do you know anyone in Austin or Houston TX? This has almost ruined my relationships with my family members. They might think I have gone mental on them…and I have to a degree. I can’t make new friends, stay in my house, can’t sit for more than 2 hours, now I stand to do my computer research, can’t take pain meds; because I have a neurogenic bladder…can not give urine samples, so I suffer and take steroid injections. The two urologist I have seen said “no way, we can remove it”.

        I am sending everything I find to my daughter to help her understand what has happened to her mom. “She keeps saying…I want my mom back”…She will never have me back, due to the physiological nerve damage and mental anguish.

        God Bless You,
        Catrina

        • Jane Akre says:

          Catrina… I’m so sorry. You should have your daughter read the essay by Aaron Horton who watches her mother injured by mesh ..Here it is
          http://meshmedicaldevicenewsdesk.com/patient-profiles/when-family-members-suffer-watching-a-loved-one-hurt-by-transvaginal-mesh/
          People forget that mesh impacts the entire family and it’s very painful to not know what to do and listen to doctors who may be less than sympathetic. Sort of the gift that keeps on giving. Sherry just made a comment on “Get the Mesh Out” and she is from Austin….BTW Aaron is near Houston and so is Linda Kilpatrick, whose profile is here too. Let me know what your daughter thinks about all this!! Warm regards~ ja

        • Tami says:

          I am also in Houston. Reading this article again after a sleepless night of leg/feet cramps and saw your comment . If you need someone to talk to or any help at all, let me know . I understand the loneliness that comes with this and the friendships I have developed here have been invaluable.

          • Betty says:

            So True if i hadnt found this site I probely would be alot worse fore wear and I’m tired of being the wearer of this mesh, anymore:( But till we can do it safely I will wait, I want to walk around on my own even with nero problems then a wheelchair for damage on nerves from another surgerie.

  4. Lana Keeton says:

    Please contact me. I have been communicating with a mesh injured woman in France since 2009 or 2010. Have Jane give you my e-mail address and I will put you in contact with her. So sorry you are so injured. Best, Lana Keeton

  5. Sean says:

    I’m a 45yr old man who pudendal nerve pain which was nicely controlled by a low dose pregabalin. I was advised to have a nerve block administered 4wks ago. Since then the pain has been dreadful with no reduction since. My painkiller has risen by 300% with no effect. I’m told I’m intolerant to the steroid of the injectate. To be honest I’m starting to lose hope. Having the nerve block was the worst decision I’ve ever made…and I’ve made a few in my life. :0(

    • Carly says:

      Sean, I’m sorry to hear you have predential Nerve Damage. I had surgery June of last year…2014 I had an entrapment…..and I’m still in lots of pain and take pain meds which barely help. I too had nerve blocks with no help….just don’t know what else to do. Since I had my mesh put in 5 years again I no longer have a life. I’m in bed 50% of the time because I can’t move. God Bless to all

  6. Take a look at the blog of a Gyn. in the Netherlands, he is specialist in removal and :Do No Harm! to the patiënts.
    http://www.pelvicreconstruction.blogspot.be/
    @women in france. i’m from Belgium, and there is a gynaecologist: Dr. Beco who is specialist in pudendal nerve chrirurgie.
    He has his practice in the French part of our country watch the video on youtube:http://www.youtube.com/watch?v=nfZCYSeWbcE
    The Netherlands and Belgium count +500 suferers from pelvic mesh!!!
    Sorry, i speak only Dutch, i can not write perfect Englisch, but i understand everything you write.
    We are the Netherlands speaking sisters, who lives daily in pain…

  7. @Lana keeton.a question: our cosumerorganisation (test-achat) send me a mail:
    I was just get a question of our Walloon spokesman.

    He was contacted by the RTBF television.(Belgium)

    She plans a broadcast about implants, well hey!

    And they are looking for witnesses.

    You still had contact with a french woman, no?

    She (Would not) want to testify?

  8. Suffering from Pudendal Neuralgia says:

    There’s also pudendalhope.info that lists European doctors that treat Pudendal Neuropathy and/or Entrapment. I think there’s a French Doctor named Eric Bautrant.

    You are not alone! Don’t give up. Also another site from the physical therapy perspective: pelvicpainrehab.com. Go to the “blog” section and look up the article: Is it pudendal neuralgia or is it pelvic nerve entrapment.

    • Jane Akre says:

      I would love to hear more about his… Anyone?

      • Kathy D says:

        I had a vaginal mesh implant in France in 2009 just before our family returned to Brisbane Australia and I have been having problems for about 3 years now. The last 4 months has been with debilitating pain but thanks to the Australian facebook page POP Surgical Mesh Muster I have managed to track down a specialist in Brisbane who has experience with women who have complications from mesh and in removal of mesh. I saw him today and I now have hope that I will get my life back before it is too late.

        My heart goes out to all of you who have suffered so much and for so long and I thank you all for speaking out. Please continue to do so. I cannot join the class legal action in Australia as the procedure was done in France. Does anyone know if french women are raising the issues about vaginal mesh and if there are any specialist lawyers representing women who wish to pursue a legal action?

        • gloria says:

          Hi Kathy, I am in Victoria Australia. I am just wishing you good luck if you go ahead and have the mesh out. I just want to warn you that it may not be the answer to your prayers as it wasn’t for me. I had a rectocele repair done with mesh in 2008, i had pain the instant i woke up and it continued to get worse. Last year when i found out about the class action i joined it and found a surgeon in Sydney who had done mesh removals successfuly. I was booked in and travelled to Sydney for my surgery on the 5th December 2012 and when i woke up i was in the most severe pain i can remember having. After the first few days when my catheter was removed i discovered my previously perfectly working bladder no longer worked, at all!!!! I am now nearly 6 months down the track and my bladder has started to work a little,but i am still having to self cath every time i void, and i am still in agony, 3 times the level of pain i was in before the surgery. No one can explain either the bladder or pain issues and no one has any answers for me. I am seriously considering suicide as my life is no long worth living, I can sit and lie down with some relief from pain but i cannot stand or walk at all without excruciating, burning, raw pain. I was a very active person before all this and now i am just a very depressed unhappy invalid. Just ask lots of questions before you have the surgery and good luck.

          • kerry says:

            Hi gloria
            I am from Australia to can you tell me who the sydney DR was as I am currently looking for someone to fix me up to dont want to get caught out, so sorry to hear your story oh so familiar

          • Carly says:

            HI GLORIA,

            IT SOUNDS LIKE YOU MAY HAVE PREDENTIAL NERVE DAMAGE..IT IS THE WORST PAIN OF MY LIFE…..I HAVE IT AND IT AFFECT MY SITTING, STANDING AND WALKING. I ALSO GROIN PAIN ON THE RIGHT SIDE AND DOWN MY LEG. ALSO MY LEGS HAVE BEEN GIVING OUT ON ME AND I HAVE TAKEN 2 FALLS. YOU MAY WANT TO LOOK INTO THE NERVE.

            CARLY

          • LIsa says:

            I’m in Queensland Australia. I had the prolift inserted 6yrs ago. 6yrs ago life stopped. I had a particial removal 2yrs ago and have severe infections since, bleeding from bowel causing chronic anaemia ,migraines daily. I cannot stand for more than 10 mins maximum. My original surgeon was one of the main educators internationally who taught how to insert the prolift for Johnson & Johnson and some bigwig in gynae group. Now he will not touch my case at all and has wiped his hands after seeing I’m in a mobility scooter by 40. I have found one surgeon in Brisbane who can remove most of the mesh. He is doing a 4D scan beg. Next month to see if bowel can be saved. He can do surgery within 3mths of consult.There is also one surgeon apparently in Sydney that the lawyers handling our very slow paced useless class action refer you to and he apparently spoke at the gathering in Melbourne. I know of one other woman in Noosa who is in a bad state from prolift also. I have also spoken to Dr V in St Louis USA who is trying to get a reduced rate at the hospital for overseas patients. What he will do surgically in comparison to the “surgeons” here is a godsend. I understand money is not easy to get together anymore for surgery for anyone. As this mesh has cost me everything in life. All gone. But my wish is to live and get to St Louis.i have found not only are the lawyers not helpful here or supportive unlike original law firm that started Maurice Blackburn, but there is little help or support in Australia as not many GPs know of the mesh damage let alone the public. Sympathy or understanding of life with mesh in Australia is non existent.

          • Jane Akre says:

            I’m so sorry Lisa… I truly hope there is an expert doctor in AU so you don’t have to travel so far. That reminds me- Perhaps the airlines can be brought into this to offer discount reasonable fares recognizing this medical dilemma so many find themselves in. I know Quantas.. what other airlines serve AU? Thank you~ ja

      • Getting Better says:

        I have Prudendal Neuralgia/ Emtrapment…the pain is the worst pain I’ve ever had in my life. I could not sit.stand or walk for more then 10 mins. I found a wonderful Dr in Md, and after having nerve blocks that did nothing my Dr did surgery. I do take pain meds but as time is going on I am started to feel better. My Dr told me it could take up to 5 years to get better and there is a 66% chance that I will get better but it is a chance I need to take. I had surgery in June 2013. Anyone has any questions please feel free to ask.

        • Ann says:

          Hi I was reading your e-mail and if you don’t mind I would like some more information on the nerve operation you had and how you got there as I had a mesh removel last August and I will be going to pain mangement this week for some posible future injections, I am in lots of pain daily and have tryied everything, next week I am going back to PT but I feel as if it is the nerves the Dr. thinks it is the muscle wall. I live in Boston and any kind of suggestion or help you have would really be appreciated.
          Thank You
          Ann Frady

          • Carly says:

            Ann, I had Prudential Nerve Damage (Entrapment) and had surgery June of last year (2013). If you have any question please fell free to call me 410-446-8454 Or anyone else that may have question. Carly

      • Carly says:

        Jane, my Dr that did my surgery on my Prudential Nerve entrapment is in Baltimore Md if anyone is looking for this kind of Dr. just saying

        • Jane Akre says:

          And how did that work for you?

          • Carly says:

            Hi Jane, I’m doing a little better……I can sit or stand sometime for an hour or so. All in all I’m still in bad shape. Still on pain meds still need a cane and still cannot drive my car….it has been over 2 years. I still have days that I cry because of the pain. I HAVE NOT BEEN IN A GOOD PLACE LATELY AND I NEEDED TO CALL CRISIS CENTER. I HAVE ALSO BEEN THERE WHERE SOMETIME I FEEL I CAN NO LONGER CAN LIVE WITH THE PAIN. THIS IS SO SAD WITH SO MANY WOMEN HURTING AND SCREAMING OUT FOR HELP AND NO ONE KNOWS WHERE OR WHAT TO DO. HAS ANYONE ELSE HAD SURGERY FOR THE NERVE WITH NOT MUCH HELP AND TRY SOMETHING DIFFERENT….PLEASE LET ME KNOW!! CARLY

        • Laurie says:

          Hi Carly,
          I live in South Carolina and believe I have pudendal nerve damage from TOT sling surgery. Pain began after having TOT sling surgery in January 2014. I believe my surgeon is afraid of a lawsuit. I just want to STOP the pain. Can you please tell me who your doctor in MD is as I believe I will have to travel away from the small circle of doctors in my area to get help.
          Thanks,
          Laurie

          • Jane Akre says:

            Carly- I’m wondering if you had full informed consent since you had your surgery recently. Were you told this was a permanent device that may not be able to be removed if there were problems? In its entirety? That you may suffer nerve damage, dyspareunia, chronic pain and infection? Were you given pamphlets and brochures and shown a video? Do you have any surgeons with expertise you can consult with? I look forward to your answers and i”m sorry….~ ja

          • Carly says:

            Laurie, please feel free to call me at 410-446-8454 Carly

          • Carly says:

            Hi Jane,

            The answers to your questions……..the answer to all but the last on is NO NOTHING!! I think you are asking me if I have a Dr now with the expertise for the Mesh, yes I do her name is Dr Germain and she has been sooo helpful. She is a URO-GYN. Any other questions feel free to ask.

          • Jane Akre says:

            Sure where is she? Does she deal with mesh complications.?

          • Carly says:

            Jane- Yes Dr Germain deals with the mesh complications she was able to get the rest out of me. She also wrote a letter to my lawyer about the damage to my Pudential Nerve…….and filled out ALL paper work for disability. She does what she can to help her patience’s. Jane she does not have anything to do with the Pudential Nerve…..she does know the Dr who did my. any other question feel free…..or call…410-446-8454

          • Carly says:

            Sorry Jane, Dr Germain information

            Dr Michelle Germain
            Chief Division of Uro-gyn and Director , Women”s Health Services
            410-443-444-4330
            Good Samaritan Hospital
            Baltimore Maryland

    • Tee says:

      Hello my Sisters in this Mesh,

      I had my violation in 2010 by a arrogant and fast, young Urologist. He never warned me of any past complaints or that he was placing a non-tested, permanent bomb in me. Had he, I would have refused, the very reason he did not comply with the rules. Same goes for the Manufacturer, Coloplast. The Gyn’s advice to the Urologist the morning of the simultaneous surgery, that the sling looked too tight. However, the greenhorn surgeon just laughed and left the room

      I was suppose to be out of the hospital within 24 hours, I was in there for five very terrible days. I was so sick from the medications and the doctors were treating me like it was some joke or that I was a trouble maker. Wrong all accounts. I just trusted my doctors and they let me down bad.

      I had random yet severe sharp pains shoot through my pelvic and left and right groins, it was if someone had a Voodoo doll and each time I sat too long or stood long enough to do the dishes, they would stab the doll in the pelvic area and I would cry out. This only progressed and got real bad. The infections started about six months after my TOT SUI Sling was silently implanted by the Urologist. One year and two months later I had extrusion from my vagina of a clamp but no local doctor would admit that or even help me for a long time after I showed up at the ER at least 15 times over the last three years and, each time, I was diagnosed with Vaginitis and sent home with meds and a good luck wave.

      This is when I started getting busy researching and I found Lana and Jane’s stories and cried myself too sleep, partly due to the stress of it all and partly because I found hope and could empathize with them on every level. I began too see my stories in just about every SUI sling story on the internet. So many victims of greed and fear. I also found Dr. Milkos and Moore and sent Dr. Moore an email with my records. He contacted me the very next day and suggested that I needed to have the sling removed. He said he could tell it was too tight by my story. I went to Atlanta and had the removal in 2012, thanks too Legal Funding. I had no insurance and the entity that was paying for my original surgery bailed on me. I was desperate for relief. I could not even get pain medications unless I had an infection. I still can’t get pain medication other than Motrin 800’s. They do not work and I have since developed intestinal issues from them.

      Long story short, impossible. So, I had the sling removed and was back home in two days. The surgeon explained to me and my husband that the surgeon that implanted me was obviously not experienced and rushed through the implant. He had installed it so tight that it broke and they had to leave a clamp embedded into my right pelvic bone because they stated it was more dangerous to remove it than to leave it but that it could dislodge and cause organ damage and/or serious infections. He was so right. I just got off my 4th round of antibiotics and I am about to have a repair surgery with the original Gyn because he is the only one that will even consider it without mesh.

      Two months or so after my removal surgery, I had relief from the left groin pain but started having right groin pain and hip and right thigh and knee pain as well. I have reoccurring vaginal infections and all former symptoms have returned and a few new ones as well. I have had rusty colored, constant drip/discharge since the first surgery. It clears up for a few days and then returns. I just got off a month long treatment of antibiotics and will see the GYN at the end of the month to discuss my current symptoms and how to fix them. I hope! Still I hope.

      Please ladies, do not give into this nightmare. Do not give up on yourself or your loved ones. There is a light at the end of this mesh tunnel. I can see it. Hang in there, do what you can to baby your body, research everything you can, call Dr. Milkos and Moore. They taught the very surgeons how to install the implants which did not relax me at all. I was so scared to let them do the removal because of who they were. I had no choice. Thank God, they did a good job (I guess so) I am still alive but all pain has shifted to my right side and I almost got a divorce. We separated for two months because of my constant crying in pain and lack of desire to have sex anymore because I could not hardly walk the next day. Which brings me, finally, to my questions.

      On 6-2013, I insisted on seeing an Orthopedic doctor. I figured I would try anything because my right knee swelled up and my right hip, groin, inner thigh and right lower back and buttocks began to cause me very bad pain. If I sit too long it hurts and if I stand long enough too do the dishes it hurts, still. This time, I did not mentioned the mesh. They sent me for an MRI of the right hip and right knee. I was found to have a tear in my meniscus in my right knee and some cartilidge damage as well as a huge rip in my labum in my right hip around the ball joint. I have not injured myself, where did these rips come from. I did not have any issues that I have now except SUI, POP, Cystocele, Rectocele, severe flooding during sex. I had just gotten married so I decided to go see the Urologist to get these issues addressed. Instead, I got damaged for life. I almost lost my very sweet and supportive husband, I have chronic pain and infections still.

      I am paranoid of doctors and surgeons now regarding their intentions. I used too be too trusting, obviously. Now, I ask so many questions, they blow me off or misdiagnose me. I am afraid that I have the Pudendal Neuralgia and not just tears in my right hip and knees and the MRI should have picked up on the clamp lodged into my right pelvic bone, one would think so anyway. I feel like they are just calling it that to avoid the real truth about my injuries. This is a close nit medical society. They all stick together around here.

      I will make sure I get my PN checked out. They should be able to determine exactly when the tears/rips took place due to all my MRI’s, CAT scans, Ultrasounds. Two every six months on average. If they compared them all, I would like to know if this is related. They will not admit it if it were because they do not want to get involved and step on anyone’s toes. What do you all think? Am I being mis-informed again? Can hip tear in labium feel just like PN? I will be sure to get that answered and another biased opinion. Do not hate the local medical society, its not their fault entirely. They were not properly warned or trained. That was not as important as collecting the money. I do hold my surgeon equally accountable due to his lack of compassion and willingness to help me find out what when wrong. I even hired a local attorney who obviously, is a family member or friend of the Urologist because all they did was ignore me and waste my Statute of Limitations and then dropped my case for medical malpractice.

      More research hours spent but I finally found a law firm too take my case back in 2012. They are the lead steering committee attys. I am trying too trust in them but it is always in the back of my mind that they are wasting my SOL as well. Its a small medical world and they all know each other. The Urologist is young and new so he was rude and he feared the worst because he did a bad thing to my life. Practically, ruined it. I do believe, had the manufactures disclosed all the complaints, trained the surgeons better and took this more seriously, this could have been avoided. Let the manufacturer make the Justice there. They have the most money too keep it in the system until justice as prevailed.

      I await my next surgery, then two more back to back surgeries, total then of five surgeries for issues that just were not an issues before mesh. I am such a desire to be as active as I was before all this but I cannot do a quarter of what could before. I am a go getter so this has taken its toll on me as well as my family. We just want justice and to settle asap. Right? God bless each and every sufferer of mesh, help them too heal and be strong. Depend on God not the surgeons and you’ll be just fine. Amen

      I would appreciate your thoughts on the Pudendal issue and the new diagnoses of hip and knee tears. How did that happen? Any suggestions? Thank you for not being afraid too help others by telling your experience. I look forward to the day we all get fixed and due diligence is processed and served. Of course, I hope, I will be fixed too, especially by the years end.

      Now, I am concerned about the Tolling Agreement issue. I was told my atty a few months ago, I think it was April maybe, that I was to be entered into a TA with my manufacturer. I had no clue what he was talking about but I like the ideal of the SOL being unavailable too me and not being robbed from me and my husband.

      What will happen to the cases that run out when they get done on or before the deadline dates for the SOL? My attorney has not mentioned the “form” Mr. Bell’s website provided from the MDL court. He seems as though he is not too concerned about my case. I feel betrayed by the entire local medical community now. That is not a good place to be. What if the tears are related to the clamp left in my right pelvic bone and they are covering that fact up? This is not a far fetched idea now is it? I will get the films and compare them with the three others I have had since 2011. MRI with contrast should have shown where the clamp is located, shouldn’t it?

      My husband can’t seem to land a job, I am barely hanging onto my last semester so I can graduate. We are trying too make our marriage work regardless now. This, I am so grateful for. I am giving the benefit of the doubt too my attorney and I pray, especially since my firm are some of the leaders of the MDLs. In the beginning, I admit, I was on heavy pain meds and very angry at the medial society. I have too much time on my hands and, I bugged them with questions and emails to the point they almost dropped my case. Since then, I stopped bothering them and prayed for trust to remain in me. If they are wasting my time, I won’t be able to do anything. I already am up to debt by $50,000 in surgeries and medical bills I must repay. that’s not all, I got a advance to pay for the removal surgery, I sure hope that will be an out-of-pocket expense the defendant must cover, does that sound reasonable? I think the manufacturer should help with those fees, yes?

      Husband, significant others, families, children, Grandchildren, friends, co-workers and , especially the local medical communities, please be supportive to the end. Do not give up on them. They did not want this no more than you do. Pray everyday for all of us. As long as we have breathe in our bodies, we have hope. God Bless each and everyone of you. Hope my story helped you have path to new found hope as Lana’s and Jane’s stories did for me in the beginning. I learned allot from their experience. Pass it on! Best wishes for a full recovery.

      • Carly says:

        TEE,

        I READ YOUR EMAIL AND IT SOUNDS JUST LIKE ME WITCH I HAVE PRUDENTIAL NERVE DAMAGE (ENTRAPMENT) AND IT IS THE WORST PAIN I HAVE EVER HAD. I WOULD LOOK INTO THAT TEE AND SEE IF IT IS SOMETHING IN THAT DIRECTION. GOOD LUCK

  9. Betty says:

    I recently met a woman who has pudendal neuralgia (or entrapment) who did not have mesh, she took the warning seriously. However the Dr. still used the trocars to install the porcine sling. Of course she was told that she was in the less than 1% category. At least she doesn’t have mesh eating through her, but her neuralgia pain is very real. Life altering. When will our medical profession wake up????

  10. P. Styers says:

    I realize I’m not alone in my misery! My heart goes out to all of you. I’ve been suffering with this extreme intense pain after rectocel surgery plus other prolapses on my right side. I’ve had one surgery for partial removal of the mesh that had attaches itself to a tigger point nerve. That was over a yr. ago. Including the 1st surgery until now, I have never been w/out this gripping, burning, raw dibiliating miserable life changing pain!!!
    I’ve been seeking help in various ways. The Gyn’s and Urologists tell me extremely dangerous it is to go looking for mesh and I very possible end up with a colostomy. I participate twice a week with a Specialty Floor Therapist. And, shortly I will be seeing a General Surgeon for his evaluation re: the pudental nerve.
    Something has got to give!!!!! Doctors could remove the mesh under the eyes of a MRI or internal or external sonogram or a tomography. COULDN’T THEY?!?!?! Instead of us constantly running into the these dead end appointments. We need HELP w/this monster pain. Is there any surgeon capable to give us back our lives that lives on the East Coast????? Any suggestions would greatly appreciated!!

    • Barbara Ballantine says:

      I am so thankful to read your letter because your situation is the closest to describing what i am dealing with day to dsy for about 18 mos or more. Its vetting worse and I can barely stand the pain. I am hardpressed to get anyone to understand how severe this is.they cant underdtand it. Im typing on my phone so I will close ..but hopefully we can chat or email for moral support.
      Thank you again

      Barbara
      Oregon USA

    • Laura Jordan says:

      Contact Dr. Robert Moore in Atlanta GA. He’s the doctor that can give you your life back. He will consult with you on the phone or via email. He’s not like most doctors, pleasantly!

      • Jane Akre says:

        Readers should know that Miklos and Moore are still using mesh to the last of our knowledge. so essentially they put it in and take it out… I’m not sure how completely though. Please be aware that most mesh removal experts say a partial explant can leave you in worse shape and make a full removal more difficult later. Thank you Laura!

      • kim says:

        Hi, my name is kim – and I now believe I have a bad infection that it is not just picked up by a urine test – I no it’s effected my pudenda nerves- for I[‘ve started nerve block’s for those nerves – I no I have infection’s – so the urologist give’s me macrobid 50mg take as needed I told him I have to take macrobid even if I lift something. so said to take it for that as well because that’s have week I am – I’ve had urine test done – but now I feel strongly that it’s an infection around the area’s of site’s what kind of antibiotic’s where you given so I can tell my urologist what to take I’ve type in infection symptoms but and they are all me. how do I tell my dr . that yes it not a bladder infection even tho it feel’s like a bad one and it not a kidney infection either . I can’t even move to get out of bed i’ve just wrote to this dr. U spoke about waiting maybe he could talk to one of my dr.’s and give them test that I need and the right antibiotic’s that would relive some of this pain – I’m writing as fast as my pain will alow me to and as fast as I can to get off my buttock’s for this is the worst of my pain sitting at this min. thanks for you comment’s

      • kim says:

        hi LAURA ; IT’S ME AGAIN KIM COULD WE EMAIL OR MAYBE TALK ON THE PHONE I COULD CALL U I REALLY NEED HELP HERE WAS GOING TO GO TO DR. S RAZ IN CALIFORNIA BUT CAN’T MAKE THAT LONG OF A RIDE I ONLY MADE IT 5 1/2 HRS . SO FAR BY CAR ON 2 EXTRA DOSE OF PAIN MED’S THEN TOOK ME 3DAY’S TO RECOUPE BUT MY OLDEST BROTHER WAS VERY ILL SO HAD TO MAKE TRIP. WHICH WAS HARDER ON HIM TO SEE ME IN THIS MUCH PAIN THEN IT WAS HIS OWN,
        MY EMAIL ADDRESS IS kimkimduckie@aol.com thanks or anyone one else who could help me with the right antibiotic’s to take for bad infection my uro ologist and gyn give me bladder and kidney med’s it’s going to drive me totally crazy one of these day’s plus do see psychiatrist 2x’t a month as well they all tell me to take care of myself

  11. Kathy says:

    This is exactly what I have, everyday, all day and all night. It is so life altering as our groin area is involved in every movement we make. I have moments when I try so hard to seem ok , like try and bend down to smell a flower at the grocery and then wonder if I get stand back up. Or after a long car ride and I can not find the strength in my pelvic area to get out of the car. The horrid pulling and tugging make me feel like I could go crazy.
    The weakness, tugging, pulling are all constant reminders that I am not ok.

  12. Michelle says:

    I had Pelvitex mesh surgery in April 2006. The mesh lined the entire posterior wall of the vagina from bladder to rectum. I had many post-op complications, urinary retention, infection and two months post-op found the first erosion. I had too many trigger point injections to count, oral steroids, antibiotics, physical therapy. My first partial mesh excision was 10/2006, attempt at “total” mesh removal 1/2007 and another mesh excision 1/2013. I have seen 6 different Uro/Gyns. I will never be able to have all the mesh removed as it has adhered to the rectum and removal will probably result in a permanent colostomy. Every BM feels like I’m passing ground glass. This last surgery I developed scar tissue that has occluded the entire back of the vagina. The physical therapist has been working at trying to break up the scar tissue and I have bleeding after every therapy session. I’m a nurse and cannot work a full day on my feet because of the pain and pressure. I have pain in my buttock that radiates down my leg, groin pain, labial pinching and horrific groin spasms that double me over. I haven’t slept a full night in I don’t know how long and I have not had one minute without pain in the last seven years. Reading and hearing about other women’s mesh complications I realize that my life could be so much worse but there are many days it’s hard to keep a postive outlook.

  13. I have been diagnosed with a rare infection called ACIDOVORANS has anyone heard of this infection.

    I had mesh removal February 2013 and it is since then that this has been discovered.

  14. Denise says:

    I understand the pain and feelings of isolation, I has surgery to
    Remove an ovary and now I am left with extreme pain along with urinary and
    Bowel retention. I have to self cath and use enemas to have a bm. The dr that performed the surgery
    Would not return any calls when signs of problems occured. The surgery was 3 hours longer than scheduled, I still
    Don’t know what happened as he won’t release my records even to my new dr or
    tell me anything. No one really understands unless they feel this type of pain. I am afraid I will lose my marriage
    Because I cannot be intimate with the hypersensitivity in my V and
    The shooting pains in my low back and abdomen. I just want some help to
    Try and repair the damage this incompetent dr did to me. My heart goes out to all of you for I understand
    Your loneliness and pain.

  15. Lori B says:

    I went to several doctors to find out why I was having pain and what was causing my pain. The last specialist I saw was a urogynecologist, even then she didn’t think the pain I was having was due to the mesh. That doctor did a revision, but I was still in a lot of pain. She seemed reluctant to perform the mesh removal surgery and I was not comfortable with that. So I found another doctor that was about 7 hours away from me, he remove most of the mesh, that was last Tuesday.

    I wish I had this article so I could hand it to the doctors. This article described what I was going through better than I was able to explain.

    • lynn says:

      Hi Lori B, How are you doing now after your mesh removal? Are you glad you did it? How long was your mesh in? Where did you go to get it out?

      • Lori B says:

        My mesh was put in March 2010. I had the first revision by Dr. Peacock in New Orleans, she released the banding. I was still in pain. I had the second revision/removal surgery by Dr. Miklos in Atlanta. On June 6 Dr. Miklos took out most of the mesh. I was still having pain so I went in for a third surgery on August 6. Apparently Dr. Miklos missed something on the initial surgery report about a tvt/tot sling. Dr. Miklos went in and said he was able to get all of the mesh out. I am still having a considerable amount of pain in my groin. I went back for my 6 week check up and another Dr. in the office suggested physical therapy. I really don’t know what to do.

  16. Gill Hayward says:

    Hello everyone, my story is not going to encourage any of you but I still think needs to be told. Information shared will support us, hopefully, in this nightmare.
    A very brief history. TVT inserted Dec 2004. Immediate excrutiating pain in left buttock, repeat infections, burning pain urinating, could not sit for long, problems wearing anything but tracksuit problems. May 2005, tape eroded through vaginal wall and I paid £2000! to a surgeon to remove the eroded part of the tape, thinking this would be the end of my problems. Ha Ha ! how wrong was I. I continued with very painful sitting, but the infections and stinging urinating did wear off over the next few years. The sitting became more painful. I went back to the surgeon out of desperation as I was so depressed and clung to any hope of a painfree life.
    Had many discussions with him over the next few years as I was so terrified of further surgery. By agreement I had a complete tape removal done in April 2011. It took about 6 months to get over the op and get back to some sort of normality, but the sitting pain continued and steadily returned worse than before. I was now very depressed and withdrawn. My surgeon said I should go to a pain clinic. I finally made an appointment through my GP and saw a pain clinic consultant in April 2013. He explained to me how the pudendal nerve worked, wear it travelled etc and it really sounded like this was probably the cause of my sitting pain and I could have hugged him just to get some relief. He said, in front of my husband, that a pudendal nerve block would either help, or not,but there was no risk of making matters worse. The injection would be done under xray to make sure it went to exactly the right spot. Only on the basis of him saying, it would not make anything worse if it did not help, I agreed to have the injection. I was put on a waiting list for about 2-3 months. At the beginning of April I received a phone call to say that had a cancellation and would I like to come in in 3 days time. I agreed. I was petrified but also clinging onto the hope that it would work and set me free from pain since 2004. When I got there, I was told that my pain consultant was not in that day but his colleague, who was equally professional and had been with the hospital for 20 years, would do the injection.. He came to see me and he was very kind and explained the process again. Again saying that the only possible risk was one of hitting a small blood vessel which may cause a bruise. The injection would either help or you would just stay as you are. I went ahead (another disastrous decision). Immediately I had dreadful pain in left buttock and I told him straight away – he said it would go in a day or 2. I went home and could not lay down on that side and I was taking paracetamol and nurofen to no avail. I went to my gP who told me to double up my nortryptiline to 50mg (I have been taking 25mg for the last 5 years!) he gave me codeine and told me to go straight back to the pain clinic. He phoned them up and they told me to come in. I did. He was very sympathetic but said I had had a bad reaction! By then I had pins and needles and pain in both buttocks, weak legs (very frightening), low back ache and – yes, even more painful sitting. That was on April 9th 2013. He told me to give it time, take pain killers as necessary and come back for my review! My review is July 3rd 2013. My sitting pain is still dreadful, particularly on the left side. I have pain from the buttocks down to my knees and I cannot bear the pressure of sitting for longer than 30 mins without having to get up and walk around. I am dosed up on diclofenic, paracetamol and nortryptylene. I will go back to the pain clinic for my review but I am NEVER having another procedure unless it is life saving! I have so many commitments in my life to my family and grandchildren and I feel so cheated out of my retirement years ahead of me. I retired Nov 2012. My family and friends listen but have heard it all so many times they glaze over! I have had some terrific support from friends I have made on a couple of mesh weblinks – thank you to those who know me. Thank goodness we found each other. If you are offered a pudenal nerve block – research, research, research. Bless you all, Gill

    • Jane Akre says:

      Gill-

      Your story is heartbreaking. I’m so sorry. I would wonder if they got the tape out AND the anchors? jane a.

  17. Lisa says:

    Gill, this is horrible nightmare for you, I am so sorry.
    Request all your operation notes and office visit notes.
    I would bet a million dollars that the doctor did a partial and mesh is still in you.

    My story is on this website. Google

    Medical mesh desk lisa pashenee

    I had 9 bladder infections in 13 months, and almost died.

    UCLA jn Los Angeles, CA, Dr. Larissa Rodriguez, saved my life last August.
    They did a full removal, and I am completely healed. There are 2 other doctos there also, Dr. Raz and Dr. Kim.
    (310) 794-0206 new patients

    Why go so far away? Because no other doctors can do a full removal, they do mesh everyday, all day, with no complaints.

    Mesh was meant to be permanent. The doctors are not trained to take it out.
    If they even attempt to, they just snip out a small piece.

    Here is my doctor’s email, if you want to email her your operation notes, and ask her opinion.

    LRodriguez@mednet.ucla.edu

    The pain you are experiencing causes nerve damage and will get worse. Some women are better with residual weakness, one lady I talked to, the leg pain totally went away. Time is of the essence.

  18. Melissa says:

    Jane – Thank you for this article. I am in tears and finally have realized that many of my physical complaints may be related to my TVM. I had the TVM surgery in December 2009. I love my doctor, a urogynecologist. I tolerated the procedure well at first. About a month after the surgery, I had bright red blood from my urethra and severe pain. I saw her immediately and was started on antibiotics. During my follow up appointment, some 8 weeks after surgery, she said my vagina was healing as expected and told me not to resume sexual activity for at least another 6 weeks. I was 44 when I had this surgery. She expected my vaginal tissue to heal much better than it was. She did blood work to check my hormones and I was still ovulating; no signs of menopause.

    I was infection free and my bladder seemed to be okay for the first year or so. But then while on vacation my husband said that my vagina felt like an SOS pad / a steel wool pad. Sex had been painful since the surgery, but I attributed that to my vagina not healing well. I also had the ECP (excruciating crotch pain) my pain also radiates to the rectum. The pain gets so intense that I feel like I could vomit. I did not attribute the ECP to anything until I read this article tonight.

    I immediately reported this steel wool pad sensation and the painful sex to my doctor and she put me on hormonal suppositories to improve my vaginal wall. A few months went by and I still had pain with sex and bleeding. She did a vaginal exam and pulled out some of the mesh. At that point she suggest surgery to remove the mesh that was eroding through my vagina. Thankfully, it had not eroded through my bladder or any other organs.

    I had partial removal of the mesh in August 2011. Ever since I have continued with painful sex. I avoid it as much as possible. But I am happily married to a wonderful man who is very patient. I continue with the ECP, it can stop me dead in my tracks. I’ve asked my GI & GYN doctor about it and neither of them know what is causing it. The only remedy is to lay on my side with an ice pack in my crotch. The other day I was at my daughter’s new house and had to stop, get a baggie of ice and insert it in to my panties. This is ridiculous.

    Cut to tonight…After reading the article I have found yet another symptom that may be related to the TVM. I have been going to physical therapy for back / hip pain. I’ve been on narcotics, steroids and muscle relaxers. Nothing really works. The physical therapist says it is an issue with my sacroiliac joint. Now I wonder if this, too, is from the TVM.

    I am currently being represented by a law group and look forward to the litigation in WV. I have the Sparc TVM, American Medical Systems. I thank you for this article and the people that put this website / newsletter together. You have given me a resource and some hope.

  19. mmm says:

    Melissa,
    Many of us have been where you are now. We have connected the dots and it is an ugly picture. Please listen to these women about getting the mesh out in Los Angeles with Dr.’s Raz, Kim and Rodriguez. There are so many stories of women worldwide who thought they could manage with some other doctor only to find out they did not get all of the mesh out. There is such a wait in LA with Dr. Raz and his partners. I can tell you they are all worth the wait. I cried during my consultation with Dr. Raz because I finally felt validated. He asked me questions no other doctor had asked and knew immediately how to remedy my pain. My surgery to remove all of the mesh is in September.
    It is mind boggling that we continue to experience these horrific medical conditions and no one seems to care. Thankfully, Jane and women on this website provide support every single day. I hope and pray you get some relief from this mesh mess. Take good care.

  20. Judy Zurlo says:

    I have just finished reading everyones emails. I don’t have words except to
    add me too!
    I’m so sorry for everyone . I know how you feel too.

  21. kathy says:

    I wonder if we all have Post Traumatic Stress Disorder from all of the trauma and fear and violation we have been sentenced to. It all seems too much to bare at times for most of us. I miss my old self before mesh.

    • Mary Pat says:

      Kathy,
      PTSD is very real. The trauma of mesh can cause PTSD in mesh victims and also in their loved ones. Living in a torture chamber (a body with mesh in it) and having to endure surgeries and endless medical procedures/treatments can certainly cause the fight or flight response. PTSD is basically being locked into “fight or flight”. I can’t even drive by a hospital without feeling the PTSD kick in. To get help for PTSD, find a good behavioral therapist highly skilled in EMDR. EMDR is effective for treating PTSD. Don’t be afraid to seek help. MESH victims need all the help they can get! Loved ones can develop PTSD (get locked into fight or flight) from standing by helplessly as they watch their mesh victim being rolled off to surgery, not knowing if they will live through it, and also from watching their loved ones suffer day in and day out. It’s pretty tragic. Soldiers develop PTSD from war. We have it from our pharmaceutical companies!

      (Here’s a though: Just imagine what might happen if all of the husbands/siginificant others of mesh victims got to meet with the mesh makers on a battle field.)

  22. kristinr says:

    HI. IM ALSO A VICTIM OF THE MESH IMPLANT. MINE WAS PLACED IN FEBRUARY 2011. MY PROBLEMS STARTED IN MAY 2011. I STARTED HAVING LEFT SIDED BUTTOX AND HIP PAIN. ITS ALWAYS BEEN DISMISSED BY MY PRIMARY AS BEING MY BACK. WELL I STARTED TO FEEL A PULLING IN MY PELVIC AREA BY MY GROIN AREA WHICH STOPS ME IN MY TRACKS. I HAD A MAJOR ARGUMENT WITH MY PRIMARY TRYING TO MAKE HIM LISTEN TO ME AND MY CONCERN FOR MYSELF. EVENTUALLY I STARTED TO WALK WITH A LYMPH MY MUSCLES IN MY LEGS HURT ME MY BUTT FEELS LIKE IM BEING POKED BY A KNIFE AS WELL AS MY PELVIC REGION. . I ENDED UP IN THE HOSPITAL February 19 2013.MY BUTT FELT LIKE KNIVES WERE CUTTING ME. MY RIGHT GROIN AREA HURT SO BAD. I WAS TESTED AT THE HOSPITAL. I ENDED UP IN THE HOSPITAL FOR A WEEK. I HAD A COLONOSCOPY WHICH SHOWS SIGMOIDITIS PLUS A TORTOUS COLON PLUS PROCTITIS. FROM WHAT THEY CANT TELL ME. I HAD TO GET ANTIBIOTICS AROUND THE CLOCK AND PAIN MEDICATION. AS THE ANTIBIOTICS WENT IN AND I ASSUME STARTED TO WORK MY SKIN SURROUNDING MY BUTTOX AND INNER THIGH ITCJED ME AND BURNED SO NAD. GASTRO DOCTOR SAID AN ABCESS THAT WASNT SHOWING COULD BE THE CAUSE BUT HE COULDNT NE SURE. IM OUT NOW AND STILL SUFFERING. IM IN PHYSICAL THERAPY NOW AND HAVE A FOLLOW UP WITH MY GASTRO TOMORROW. OH AND NOW I HAVE TEN UP COMING APPOINTMENTS WITH DIFFERENT DOCTORS. MY BLOOD TEST SHOWS LOTS OF WBCS AND SO DID MY COLONOSCOPY. NOT GOOD. TIRED ALL THE TIME. IM SO LOST. 42.Thats my age

    • Lori B says:

      How did your physical therapy go for your groin pain? I have groin pain on my left side, I also went for a colonoscopy about a year ago and they had a hard time getting through due to adhesions on the outside of the colon, basically closing it off. The Dr put me on a very expensive medication which did not help.

      • Kristine says:

        Dear Lori B. The physical therapy did not help me. I’m now seeing a pain specialist who is doing his best to help me. He gives me pain medication , which hardly works. I had a steroid injection into the sacroiliac joint. I had slight relief for two days. I’m truly suffering and cannot sleep well. I walk most of the day to keep myself. From sitting its so painful to sit down but hurts to stand as well due to the cramping in my legs and numbness in my foot. Im going in for another injection on March 3 2014. This one will be a little different. The medication and location of injection will change. If it does not help me. I will not have any more injections. My neurologist did a referral to a Neuro surgeon. It takes months to get into him. I had testing done at Arrowhead Regional Medical Center. It has been one joke after another . I saw the Gyn clinic and they sent me to the uro Gyn and the day I went the surgeon I was supposed to see had pulled a 53 hour shift so I had all kinds of tests done and was told they want me to see the urology surgery center . Then come back to see the surgeon I was supposed to see. I was told when I left the uro Gyn clinic my referral would be stat .. urgent. That’s been since Dec 9 2013. I had to call and bug them and call my insurance and they told me no one ever submitted for my referral. I basically was put aside by a nurse who did not do her job I would come to find out. I finally got a letter from Arrowhead that said call arrowhead to schedule and I did and I get this crap from a nurse. We just got your referral our urologist has to review your records they are only in on Mon wed Fri. U will get a letter with an appointment by mail. I’m dying of pain and infections and this is what I am going through. So much more to say but I’m so tired. Stay strong and when a doctor won’t listen to you call the department of managed health care and call your insurance they have people who will investigate and help speed things up. God bless all my fellow sisters.

  23. Bejah says:

    Hello brave fellow warriors, I was implanted with Ethicon mesh (POP) in 2011. Pain escalating ever since. ?

    BTW rather than putting an ice pak in one’s panties (I feel so for the woman who shared that but had to laugh), cool plain yogurt helps! Diluted plain Listerine also helps me…don’t know why…just pat, pat, pat with a cotton ball.

    We must tell all of our friends and the women in our families about this so they are warned because the medical community will generally not protect them and it seems the FDA will not either. Why didn’t the doctor call me to come in right away to be checked or have it removed? I never heard from the doctor nor did the doctor answer my emails.

    I found enlarged photos of several of the meshes in an academic paper and looking at them it occurred to me that they looked like the wire fencing around a prison…that seems an apt analogy…we are in prison…prisoners of war who must now free themselves.

    What the enemy expects us to do is whine and complain and cry and talk about our circumstances…and it is healthy and informative for us to do that, but we must do much more and we are capable of that. They think we are emotional females and no one will ever take us seriously because we are not capable of organizing, and we are prone to emotional excess, etc. It is the old Victorian argement about women that is responsible for so much discrimination and brutality. I guess that has not changed much.

    What we must do is organize…the enemy would not like that at all. We need grassroots organizing….meet in living rooms in every city and have double chocolate brownies and lots of red wine! We could do all kinds of things…boycott certain products, and doctors, create a black list of physicians, make t-shirts and bumper stickers, picket the homes and places of business of mesh manufacturers CEO’s (A good way to get on the evening news), do mass mailings, fundraising, speeches at Women’s Clubs, etc.

    So, “Hello there Ethicon lawyers…I know you are monitoring this website and guess what, I am coming for you and my armaments are locked and loaded”.

    What is the old saying….”don’t get mad, get even?”

    • Betty says:

      I use ice also. It does help. I’d laugh too, if I didn’t have this razor blade feeling in my crotch. Ice has never been a go to for me. Actually the ice was recommended by a PT @ Dr. Hibner’s office in AZ. She makes them up in condoms with a 50/50% alcohol mixture. Then wrap them in a washcloth. (I use paper towel). The ideas you gave may help, but I think if it’s more of surface pain. Ice lasts longer and goes deeper. The alcohol keeps the ice from becoming hard. Do not freeze them to a really cold temp less than 32F – alcohol has a lower freezing point, so it could burn you if too cold. Diluted Listerine would have a medicinal effect along with cool yogurt, and help the vagina keep some natural flora that fights infection. I take probiotics for that. Cool yogurt would heat up much faster than the ice does.
      I am working on something to give to my primary care – she has become anti-mesh and welcomes the information. I also plan on taking it to other Dr.’s, one of which said to me that mesh has revolutionized the industry and that I was the poster child for what can go wrong. Hardly. I would also like a t-shirt that says something like “cannot sit because of a bladder sling, ask me about it”. I agree we have to figure out a way to get the message out. Yes it does seem like the medical industry is approaching us as “whiners”, however it is without merit. We’re in such severe pain that we can’t do anything but cry at points. My clitoral pain goes through the roof and I don’t care about anything but stopping the pain! Of course, I don’t live there 24/7-but it is frequent. It would be nice if we could get organized, but we are talking about severely injured women. Also, the population although unacceptably large is not huge in comparison to the population. I think the “enemy” is also counting on that. So far they’ve been able to keep major media away from reporting this. We are fighting a huge money making machine. I applaud your attitude and hope you can help the organization process. Keep up the good fight!!

  24. Linda Wilson says:

    I’m new on here, but I also am a mesh victim….I had the Total Prolift kit put in me back in 2007.. Now That I look back way back when I realize that I had so many pains and problems even right after the operation. But not until they started talking about all of on tv.. ( Lawyers ) I had no clue about any of it. Now since Feb. I now have a re -prolapse with my womb that has dropped down into my vagina.. ( It was suppose to be in the mesh bag along with my bladder.. I also had a rectum prolapse and my vagina with it. Now I’m in so much pain with my hips, mostly with my right one. Pain shooting in my lower back and all around my lower stomach. Now for about 2 or 3 months I have trouble with both of my legs and feet that will go slightly numb.. ( more with the right one) I do have a ? to ask all of you to put some light on if you can… I started catching my urine to look at it closely and to my surprise I have found so many little white pieces of crap in it almost every time I pee…. I have showed it to a couple of doctors, and they said that they have no ideal what it could be. Please comment on this if you have seen this or had it happen to you. I’m so glad to meet all of you and I pray that I will become part of your family.

    • Karin says:

      I am also noticing the white pieces of weirdness in my urine. Currently experiencing my third mesh erosion and wonder if it is tiny pieces of mesh? Or what? I dunno.

      But it is very weird.

      I am just sitting here reading this article and the all the comment in TEARS because so many of the symptoms listed here are symptoms I developed POST-IMPLANTS and many of them I know to be mesh related, but even more of them I had no idea. And where does that leave us? Will any doctor BELIEVE that our fibro, or our back pain, or those sharp shooting pains in hips, groin, or wherever we may have it… our fatigue, well.. ALL OF IT… will any doctor believe they are mesh related and be able to DO something about it. I know my implanting physician still strongly supports the mesh. to this DAY! Even after all the thousands of injured women and the FDA warnings. He blew off my complaints and made me feel like a fool and a hypochondriac. As did the orthopedic surgeon I went to see for the lower back and hip pain. Sure he did MRI’s but they showed only mild disk disease that he said could not account for the back pain and found no reason for any hip pain. I saw my primary who led me to a rheumatologist, I have seen orthos, neurologists, and a pain/fibromyalgia specialist. Fibromyalgia was the diagnosis. Because it can encompasses everything without a definitive test. But if it were truly fibro, would lyrica not work for me? And why would the pain improve some after mesh removal surgeries if fibro were truly the cause. And how does that explain the mesh erosions, the infections, the bladder spasms, the incontinence and pain and issues with both peeing and pooping. Before mesh, I was healthy, strong and happy. Post-mesh… I am a total mess. I have lost my job and a thriving career due to it. My source of income. Then my home of 17 years. My abilitiy to do so much of the things I love to do. I have lost relationships because of having to cancel due to pain or fatigue from being up half the night in pain. Thank Goodness I have an understanding husband who can deal with my leaking through a pad and waking up both covered in urine or feces. Who understand that sex is no longer an option for us. that stands by me and helps me through all of this. Because there are so many friends and family members who just don’t get it and honestly believe I may be “making it all up”. Oh if only that were true. No, this is VERY real. And my lovely husband does get it. Because he knew me before so well and knows so well what this has done to me because he sees it every day for the last six years. It is hard on him, too. I feel so bad he has had to suffer because of this as well. But so grateful to have his steady support at my side. Because I certainly am not getting it from others. It is very lonely being a victim of this mesh, isn’t it? Sites such as this are a godsend, because only another mesh victim can even possibly begin to understand what this has done to us. And sharing our stories makes us cry, but also… makes us feel not so alone and helps us understand. Love and blessings to ALL. God watch over us please. Help us all heal. Help us deal with this. Help us be strong.

  25. Zoey Thompson says:

    Hello ladies,

    You are not alone! I had the implants July 22, 2013. Already in severe pain, diagnosed two days ago with nerve entrapment and put on neurontin. Have severe pubic pain, anywhere from feeling like menstrual cramps, to burning, and then the sharp stabbing pains either in my clitoris, urethra, or inside my vagina that make me scream out. Dr’s so far do not care, except for the rock stars of removals which I cannot afford to see. God is with us, I pray for us all. Keep fighting! Dont give up!

  26. Zoey Thompson says:

    Linda Wilson, the stuff in your urine is the mesh eroding into your body. Please PLEASE get ahold of Dr, Raz a UCLA or Dr. Veronkolis in St. Luois and get it out!

    http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=4843 dr raz

    http://vaginalsurgeryandurogynecologyinstitute.com/what-we-do/mesh-complications dr v

    • Karin says:

      But what can we do if we cannot find a place to stay while recovering and for preop and postop appointments. I desperately want to get to CA to see the experts. But have not alot of money. Medical bills already wiping me out. Is there any financial assistance for women like us? A Ronald McDonald house or something similar in the area?

      • Sarah says:

        Hi there I am 3 weeks post op mesh removal from dr Veronikis is St. Louis . My husband and I were there for my surgery during the World Series this year and the ladies at dr V’s office helped to set us up at the Haven House. It’s close to Mercy where dr V does the removals. It cost us $50 per night for a room with a tv. I was only there one night but my husband was there the next night while I was in the hospital recovering. The staff was great, they even had home made meals, a place to do laundry, a kitchen…everyone who stays at the Haven House is having some kind of medical thing done either to them or to family, they have rules about no unsupervised children and that sort of thing. It was a stressful time of having to have another surgery and being scared to death and gave us a place to stay, food, hospitality, and understanding. We also didn’t have to worry about the nightly hotel rates in St. Louis let alone during the World Series when the cardinals were home for those 3 games. Dr Verkonikis and his staff and everyone at Mercy hospital were wonderful. And I mean everyone, even the nurses who came in at the end of their night shift who any place else would be grumpy. Trust me I have been in and out of the hospital several times in my life and circumstances aside this was the best hospital experience and surgeon experience EVER!!!! It’s not just the patient they worry about to, my husband was treated very well and was kept very informed even when my mesh removal surgery ran almost 3 hours longer than anticipated. Sherri is Dr Veronikis’s staff member that helped me set everything up she is wonderful and I thank God every day these people came into my life. I just hope that I can be a normal woman again someday, pain free. But I am on the way. Ps. I had severe pain that went down my left leg and as soon as I woke up in recovery after removal of mesh I could tell I had surgery pain but my leg pain was GONE!

        • Karin says:

          Hi! I am scheduled for mesh excision in five days in St Louis with Dr V. I am terrfied but also very excited about the possibility of what relief from pain and symptoms this surgery may bring. have not yet met him, but Dr is so caring and knowledgeble and has a proven track record of successful mesh explants. How are you doing now that the mesh is gone?

          • Karen says:

            Hi Sarah, Any update? I notice there are two Dr. V’s in St. Louis, Dionysius and Irini….which one did you see?

  27. Betty says:

    Definitely get in to see Dr. Raz. It is now a six month wait for surgery and you have to go for a separate consult. He used to do it in one trip but the insurance companies have changed the way this can be done. The particles you describe are indeed mesh coming out and it is in your bladder. I’ve had 3 surgeries with Dr. Raz and have gone from wheelchair to being able to walk and do some small things. I’m so sorry you’re going through this. Of course you’re a part of the family. I believe at TVT-NO they have help for flights – angel flights – (someone correct me if I’ve got this wrong) if you cannot afford to fly out. I have been told by Dr. Raz’ secretary that his whole practice is now mesh removal.

  28. Mary Pat says:

    Zoey,

    I am so sorry for you. I don’t know where you live, but there is a doctor in Seattle WA, Dr. Una Lee, who trained under Dr. Raz at UCLA. She can remove mesh. She is at Virginia Mason Urology. Call 1-206-577-9921 to speak with the Urology department.

  29. Tm says:

    I had Aris TOT sling implanted 2010, removed 2012, still having reoccurring UTI’s severe discharge with very strong and wierd odor. I have SUI, Rectocele returned and had to have appendectomy two months after removal. Now I have a huge rip in my right hip, I have been told by three doctors that the labrum hip rip could be related to tissue breakdown from inflamation and infections. Has anyone else had rips or other similar issues?

    I went to Dr. Milkos & Moore in Atlanta, Georgia, they removed all but the right anchor in my right pelvic bone. I am about to have my third surgery in September, I will have diagnostic labproscopy and a traditional bladder and urethia lift using my own tissues. This was what I believed would have been done the first time. I was never warned or informed of an implant.

    Dr. Moore removed most of the mesh but found it had broken in half. He felt that removing the anchor would be too dangerous. I was home in two days. I feel better but not fixed or over the issues yet. I still have infection and pain in my right hip. I have also been diagnosed with a rip in my right knee, when all is said and done, I will have had six surgeries including the hip and knee. I had no issues with my hip, knees or appendix before mesh. Doctors verbally will say they are all related but not one would put in writing. Sad.

    I will keep every one of you in my prayers, please get it removed by a professional.

    God Bless and Keep you! Justice for all!

  30. Betty says:

    I just had a fiber of mesh come out through my abdomen. The area had been hurting for months and I couldn’t figure out what was causing it. Then I felt a sharp poke, had my husband look at it and he got the tweezers and pulled out a small mesh fiber. Unbelievable!! I have a 1/2″ area that is raw and sore where it came out from. I also have more mesh that has to be removed. Please, if you have a problem get the mesh out in one piece. Cutting the mesh causes it to pull apart and is so much harder to find. I do not understand how Dr.’s are still being instructed to use estrogen cream, to only remove the part that is causing issues, and believe that our scar tissue will hold it in place. This has been shown to be false for so many years now, but it is still the standard most Dr.’s are using. I have been maimed and mutilated. It blows the mind how a 1/2 hour outpatient procedure can result in such devastation. The fact that the FDA has not stepped in and put a halt to this, at least until they can figure out what is really “safe” is just not acceptable. God help us all!

  31. Mary Pat says:

    Betty, I also had a piece come through the abdominal wall. It hurts, doesn’t it? You are the only other person that I have seen who also experienced that. We can see that our bodies are trying to “spit the mesh out”. My doctor said that cutting the mesh frees up tiny particles that can migrate through the tissue. He also told me that my body was “trying to spit the mesh out”. Compare it to a sliver in your hand. Your body does try to spit out the sliver. It gets red and sore and infected if you don’t remove it.

    After 3 mesh removal surgeries, the alien mesh is still wreaking havoc in my body. I wonder if anyone actually gets all of their mesh out? Unfortunately, for me, the mesh has done a lot of permanent damage. The mesh has caused structural damage to my nerves, muscles, facia and skeleton. I wish I could say that getting the mesh removal surgery made things better. It helps, but the permanent damage caused by the mesh is really hard to live with. When I found out I had mesh and realized that it wasn’t good for me, I told myself that I would not be a mesh victim. I was determined to be a mesh survivor. I believed that I could somehow rise above it. I did not want to identify with the other mesh victims. I believed that I could get the mesh out and put it all behind me and get on with my life. I was focused on recovery, telling myself that I was just passing through a very dark period of my life and there would be hope and light on the other side. What a heartbreaking journey that has been! I feel so defeated. Sadly, I have realized that I am a mesh victim. I can’t make the permanent damage go away. Mesh has robbed me of so much. Admitting that truth is both humiliating and more painful than words can express. I am not an alcoholic and I’ve never been to an AA meeting, but I think I know how a person must feel the first time they go to a meeting and stand up and introduce themselves as an alcoholic. I wonder if there are other mesh victims that have struggled with facing the reality of our lives and our future as much as I have? I wonder if there are other mesh victims who feel guilty because they can’t rise above it or make it go away? It is so disabling. You can’t fix the damage, you can’t run from it and you can’t pretend like it isn’t there. It really does affect your life on every side and every relationship.

    In all this pain and sorrow, I have to say, my only solace is the courage, determination, insight, encouragement and hope that the other mesh victims and, of course, Jane, have offer. Sometimes I feel so alone in this misery. You ladies give me comfort and companionship. Thank you.

    • Karen Arnold says:

      I have to reply to your post. This is exactly how I feel I want to give up.. I have worked so hard and now it domenates my whole life. I have went through two removal surgeries and I am still in great pain. I am a teacher and counselor…

      • Jane Akre says:

        Karen- I’m so sorry… do you currently have competent medical care and insurance to perhaps cover a full removal. I’ve yet to hear a good story about a partial removal… please get back… thank you~ja

  32. Hi,
    All of this is so disturbing. I too have a mesh implant (7 years ago). A few years ago I started having hip/groin pains. I tried everything, acupuncture, massage, Pilates, physical therapy. Exercise just made it worse. Now that I’m seeing the symptoms that are so similar – inner groin pain, deep internal buttock pain, pain touching the top part of the pelvis – all these unexplained by the medical community. When I mention the sling they did a gyno exam and found nothing wrong – I’m lucky that my sling hasn’t caused any pain with sex or urinating, but I’m convinced it has something to do with this neuro-muscular problem.

    My question is about mesh removal. I would love to hear from others that have had mesh removal. It sounds like sometimes it leads to more problems. So I’m weighing the pros and cons of removal. Does the nerve ever repair itself? It feels like a ticking time bomb now that I’ve read your stories. Even if your in a place that is manageable (and it is amazing what we bring ourselves to manage), is it better to remove the mesh, take new risks? Or is it better to manage the pain and avoid what could be even more trouble? Thank you all for sharing.

  33. I just found a doctor in st. louis who seems to be specializing in mesh removal. Since this is three hours from me I’m very excited – thought I would share: http://vaginalsurgeryandurogynecologyinstitute.com/what-we-do/mesh-complications

    • Jane Akre says:

      Clearly this is an ad for Dr. Veronikis… thank you in that some people have gone to him. Anyone want to comment on their outcomes?

      • Karin says:

        Hi Jane. I am scheduled for total mesh excision in five days with Dr Veronikis. I have two implants…. Gynecare TVT sling and transvaginal total prolift kit (also Gynecare). Complications from these slings are way too numerous to go into detail but to make it short I have neuromuscular pain and disfunction, severe low back and leff hip pain, fibromyalgia post implants, incontinence and retention, prolapse recurrence, urinary and bowel pain, spasms and disfunction, severe fatique, vaginal and pelvic pain, three erosions to date and two partial removal surgeries,problems with balance and coordination, depression and anxiety and more. All post implants
        And very painful and disabling. I have great faith in Dr Veronikis. He said he wants to see me “pain free”. After six years I dont know if this is possible or just how many of these issues will improvemor
        Go away post explant, but am very hopeful. I will let you know the outcome! Surgery is 12/20/13.

  34. Cindy says:

    Ive been in terrible pain with spasms in the back of my thighs & buttocks for over a year. I had the mesh implanted into my body in 2007. Up til today when i found this & other websites i thot i had injured my back & was experiencing the most horrible & alien sciatica in the world. Ive been to M.D.s & 2 chiropractors begging for relief. I cant sleep, eat or do anything else expect take Aleve, ibuprophen, aspirin etc. To try to relieve this excruciating pain!! Tomorrow, im going to camp out in the ob-gyn office that dd this to me and tell everyone of their patients to NEVER SAY YES TO MESH until they see me, admit their guilt & DO something about it.!!

  35. Karin says:

    I woke up postop Gynecare Prolift & TVT Sling implant with severe and intense pain in my left hip unrelieved by the morphine I got for the surgery. No pain in surgical area, but hip excruciating. Was finally given intravenous anti-inflammatory medication. Never thought this could be related to mesh surgery or assumed doctor would have said something as he knew of the pain. That was six years ago and to this day I still get sharp shooting pains in the left hip periodically when walking. Stops me dead in my tracks and makes me scream out. Cannot move until pain subsides. Also have the same pain intermittently when walking in my lower rectum/pelvic bone area. Could this POSSIBLY be nerve damage from surgery or mesh related? Is there any cure or treatment for this?

    • Betty says:

      Hi Karin,

      I’m not 100% sure on this – as it applies to you, but I have had severe hip pain that you are describing. I had 2 years of the mesh working well, and then it shrank – . . . So many things later. My PT is the one who figured out what caused the hip pain – it was being referred from the vaginal wall. Much of the pain with mesh is referred pain. The muscles are all inter-related. I recently found out that the piriformis sits either on top of/ below of to the side of the sciatic nerve. So the piriformis can cause our sciatic nerve to act up – the symptoms make it seem so totally unrelated, but they are not. I also have the same pubic bone/rectal pain. It is getting more consistent. The mesh can totally affect these areas. The mesh is being put through (blindly) our pelvic muscles. Spasms are caused when the muscle cannot bear “the load” it’s carrying. The muscle is trying to make up for another muscle that isn’t doing it’s job. I’ve been diagnosed with pudendal/obturator nerve damage and have been told that “that is impossible – the mesh doesn’t go anywhere near there” by quite a few Dr.’s. Muscles and nerves are inter-related and work together. When one is off, it sets off the others. It occurred to me the other day (maybe I’m crazy – correct me if I’m wrong somebody) that when we do exercises the leaders are constantly referring to the “core”. This is what the Dr.’s are messing with, our core. If our core isn’t strong then the other muscles/nerves are affected. FYI: Mesh has been pried out of several womens pubic bones. I don’t know of a great cure, except getting the mesh out, all in one piece. It is a brutal surgery and may not help you as much as others who are dealing with the severe bladder/vaginal pain. A lidocaine patch on your hip, and pubic bone area may help the pain, but it is a bandaid and not taking care of the cause of the cause of the issue. Lidocaine patches have helped me in these areas. If your pain gets worse, or starts going to other areas then I’d seek out Dr. Raz. I am not a Dr. and these are just opinions based on experience. I hope you feel better. Hope this helps, blessings

      • Betty says:

        Karin,

        Are you the same person who posted earlier? If so, I didn’t get that you’re already suffering the pains of mesh – you need to go to Dr. Raz as soon as you can. I was under the impression that the symptoms you related in that post were the ones you were dealing with. Blessings

        • Karin says:

          Hi Betty. Yes I am beginning to understand that this is mesh related. On 12/20/13 total mesh excision of both implants is scheduled. I am anxious to see which symptoms will improve, which will disappear and which may end up being permanent. This mesh has been in me over six years and Dr tells me the partial excisions may have made it harder to remove all mesh. But he knows his stuff and hundred of women report excellent outcomes so we shall see! Thank you!

  36. Susan says:

    This information and all your comments has given me what I need to change my life plans. I am not the independent,  active person I was before TVM. I received the TVM in 2008 and had my first removal surgery a month ago. Not only haven’t I seen any improvement, but my situation is growing worse much more quickly. I’m single and live thousands of miles from family and close friends. I literally cannot take care of myself, my home or my poor cat properly. I haven’t even breathed outdoor air in months and find myself sitting in a chair all day, every day. Trying to get appropriate medical help has become an exhausting battle. I can’t work anymore and I see no one. I’m not sure what to do about my future. The thought of giving up my home and living with others is depressing. And all the money in the world isn’t going to give me back my life either. There is nothing that can make this situation better. Reading the comments here has given me some comfort in knowing that there are others who truly understand what is happening to me.  I just wish the pain and creepy sensations would stop.

    • Jane Akre says:

      Susan- please jump onto the Facebook page and seek some medical help beyond what you have received. You might have experienced a partial removal, which many say do not work and can make you worse. please do not give up! Stay in touch. Would you like to talk to patient advocates, women who have gone through it and found some remedy… Please stay in touch… thank you… ja

  37. Kristine says:

    Hello, I am checking back in to report that I have had 2 further infections from this mesh implant. I finally started physical therapy . my therapist totally understands the pain that I am going through, he said that a lot of my pain is probably caused by the mesh. I am on a constant round of antibiotics. I now have a strep b vaginal infection.
    I have constant pain in my buttox and lower thigh behind my butt and I cannot sit down for long periods of time, I seem to have to lean towards the right when I am sitting or I feel like I am being stabbed . hip pain that radiates all the way down my leg into my foot. The pulling jabbing pain in my pelvic region is a night mare especially when I am out in public and have to scream out in pain, I feel like something is trying to come through my groin area and I also had my urethral spincter muscle fixed and the mesh was placed holding it in place and it burns me and pokes me in that area. no joke . I feel like as if something is poking me. I have an appointment in December with a Specialist to discuss having my mesh removed.
    The suffering is no joke and I would say it has pretty much destroyed my life.
    I feel a sense of sadness and no hope. I cry constantly and wish that I would never have had this mesh implanted into my body. I have even thought about suicide which is not something I take lightly, seeing that my Grandfather did that to himself.
    I only hang on because of my children and my grandson. I only wish to have my life back a pain free life filled with happiness.
    I am just so very tired.
    Has any one else had vaginal infections from this mesh and what type.??
    I have seen a Neurologist and had testing done and I do have nerve damage.
    any feed back from anyone would be helpful about their infections.
    Thanks you and god bless all Victims of this horrible night mare.

    • Jane Akre says:

      Kristine- Please seek out competent medical help before December. You are suffering. Can you please ask for help on the Facebook page? I’m sure you will get replies from others who have been where you are. Where are you located? Do you have a competent doctor? Do you have a lawyer? You sound like you need direction and a plan. Please let me know if you are willing to have me share your email with patient advocates? they will want to know if you have your medical records and insurance? They are mesh injured, not associated with any law firm or doctor. They’ve just been there themselves. Give me your okay and answer those questions.. I”m willing to help do what I can…. thank you for writing and I’m sorry. ~ ja

  38. Karen Farmer says:

    Hello,
    m name is Karen,

    I just typed in complications from mesh surgery and it brought me here! I can’t stop crying! I have had three mesh surgeries and am in so much pain I am on the erge of giving up….I just came from another sugeon who told me that leg ,back or groin pain have nothing to do with mesh surgery! I have all of the symptoms above….severe leg, groin, butock,low back pain…when I change postions,sitting, stading etc it feels like the urethra is being squeeed and I leak urine. I am asingle woman but no longer have intercourse as it is oo painful and also leak urine. The psycological aspect of allofthis is overwhelming! I suffer from fibromylgia so as soon as the doctors here this, thy just tell me its the fibro….myultra sound done in november of last year ( wait times are crazy) stated : 2005 TVT-O, 2010 – replaced with TVT; failed , 2010 – retropubic TVT post repar rectocele:
    findings: technically challenging exam due to multiple surgeries and presence of multisite mesh
    – mesh is identified retrourethral with wings to retropubic locations. mesh is extremely mobile movng with valsalva into the loer perineum, posterior mesh also noted
    -urogenitl hiatus deformed, gaping on the right
    -urogenital hiaus enlarges with valsalva with multicomprtment prolapse including recocele development
    -stress the bladder neck descend 1.5 cm, bladder neck remains fixed, lighly oen…mid and distal urethra have oval onfiuration 3x8mm at rest….mid/distal urethra asume horizontal position with valsalva, mesh moving with
    urethra, suggeting comonent dehiscene….
    -jus distl to bladder neck , suspect mesh extrusion through uretra
    -cystcele does not develop with stress.
    I asked the doctor to explain his and he just saidI should consider nerve blcks for my fibro pain, as he couldn’t feel anythin wrong with the mesh!

    I am so lost and confused! I too have put my name in for lass action and am wonderin if his affcts a docor’s decision to help or not?
    I don’tknow what to do or how to get
    help!
    p.s. I live in Canada

    • Jane Akre says:

      Hi Karen- One would hope that a doctor is dedicated to a patient, not fearful of litigation. Please get the help necessary and make a plan for medical care. Depending on you live, some women have petitioned their Province to have a full mesh removal at UCLA with Dr. Shlomo Raz. Others go to Dr. Veronikis in St. Louis. If you go to this website and put Canada in the search bar, you will find the stories filed on Canadian women. I am hoping they read your message here and reach out to you. Please stay in touch and let me know if I can help connect you to others. Also- do you know of the Facebook pages that go along with Mesh News Desk? There are two as well as a Legal advice column. Again, please stay in touch and let us know how we can help! ~ ja

  39. wen says:

    Does anybody know a surgeon in Oregon that will remove the ancors or kill the nerves to the vagina?? I am getting so sick of seeing doctors that won’t help. is there any groups of women that live in OR that talk about this crap, and the pain, dealing with it everyday, after day, their has to be more help for us out there

    • Jane Akre says:

      Absolutely agree there should be more help. Visit our Facebook page to ask the question about surgeons in your area. The problem, as we often repeat here, is there are very few surgeons who will even attempt a full removal especially of anchors. Many attempt a partial removal which has proven catastrophic for many women. So while every corner gynecologist seems to have been able to put mesh in, it was intended to be permanent and to find a competent doctor who will not put you in worse shape is likely going to require you to travel. I’m sorry to be the bearer of that news but you really need to advocate for yourself and find the most competent medical help. Please visit the FB page and you will see many women discussing their doctors… thank you!

  40. Karen Arnold says:

    Thank you for your research. I am going through these and have had two removal sling surgeries at this time. I can hardly stand to do anything. I am a school teacher and counselor and the pain domentaes my every function. I was told that the pain would get better with removal but it hasn’t and my life is on hold. I have an attorney however I have recieved no help or relief. What is your face book page… I cant stand this much longer…

  41. heather eurek says:

    Ok. This is exactly 100% what I have but no mesh! I’m not sure how my surgeon suspenswd my bladder but my life feels ruined!. This article doesn’t mention why the nerves and muscles get this way? Is it a ligament the mesh or whatever is hooked to? Please tell us why.

    • Sherry J says:

      Heather, I didn’t Have the mesh either, and the above symptoms describe me to a T! It’s as if I wrote the article word for word – spooky.

      I insisted on “no mesh” for my surgery, and went to THE top surgeon for my procedures, so why is this happening? Luck of the draw I guess. I think I have a black cloud hanging over my head. This has been a pain in the ass from the word go (no pun intended). Just about anything that could go wrong has gone wrong, as far as side effects. I kept my chin up though, thinking “this too shall pass,” with one more side effect after another, until I found out about pudenal nerve damage. From what I understand, it usually doesn’t pass?

      My crotch has consumed my life for over a year and now I’m in financial debt to pay for all this newfound pain. I’m starting to get depressed, but I’m not giving up hope yet. I’ll try PT with lots of hope that it will work! .. I told my husband I am ready to have the darn thing sewed shut so I can get on with my life. Problem is, even that wouldn’t cure thus pain.

      Has anyone found a cure for pudenal nerve problems in Physical therapy? Especially with no mesh.

      • Jane Akre says:

        Sherry- you didn’t say what your surgery was for. Have you looked at your operative records as well as insurance claims and nurses notes. Just make sure you know what was done during your procedure. I’m sure your doctor is great, but many women had no idea for years that they received a permanent implant…I’m sorry for your pain. Check the FB page and post a question, you will get lots of answers…~ ja

      • Carly says:

        You would need surgery, that is the only way to try and fix it. There is a 66% change it will work however it could take up to 5 years before you get better and at year 5 if you are not better then that is how your life will. I had my surgery June last year and I feel a little better but the pain is still BAD!! What state do you live??

  42. Patricia says:

    I’m all over this page. What should I do? My primary care is a part of the same huge practice as the urogynecologist that did my original tvm surgery. I have to control the sobbing right now, because I have to go back to work. I drive a school bus and the pain when I sit for hours is almost too much to take, but I have to. And I so tired from being woken up at night by pain. I could go on and on.

    • Jane Akre says:

      Patricia- I’m so sorry… I’ll pass you onto a few patient advocates. You probably need your medical records and the help of a competent doctor because that is no way to live. I don’t have to tell you that….thank you for writing….~ ja please stay in touch…

      • Patricia says:

        One big problem I have is being in this by myself. My husband isn’t sympathetic. I think he just gets irritated when things don’t get done, being in pain so much of the times leaves me fatigued. The only urogynecologists I can find within 25 miles are part of the same big practice. I assume that’s the specialist who would need to take this out. I also worry about surgery causing me to miss work. I don’t have sick time and I worry about the money I won’t be earning.

    • Carly says:

      Patricia, I am living the same nightmare that you are. I have Prudential Nerve Damage and it sounds like the same thing you are dealing with….can’t sit, stand or walk for long at all…maybe 15/20 mins. I did have surgery on that Nerve June of last year, my Dr told me it could take up to 5 years for me to get better and however I am at year 5 that will be my quality of life……I’m on pain meds because the pain is so bad I can’t stand it, my son did make me a cushion that is 2″ thick and shape like the letter U and it really does help me…I can sit about 2 hours on a good day. If you would like to talk call me…410-446-8454 if no answer please leave me a message because I do sleep a lot due to my pain meds. I also deal with other pain from the mesh but the Nerve is the worst…I cry so much cause of the pain…..I hope what I wrote help you some. Carly

  43. Bejah Notrettu says:

    Dear Patricia, It is very sad that your husband is not supportive. Perhaps he should re-read his marriage vows. Many men are like this sadly. If he gets “irritated when things don’t get done” tell him to help out by doing them himself but that is not helping you…I just find men like that intolerable. You deserve care and support from him that you are not getting. It sounds like he does not deserve you. But on to practical matters…I would avoid the medical group within 25 miles that you mentioned. Go to the best medical center you can in the closet big city. I am hoping your healthcare will cover this. Search for physicians online, check their background and experience, training…as if you were interviewing them for a job becuse you are. Maybe if you tell us where you are others could offer helpful suggestions. Do not go to some rinkey-dink gynecologist and there are a lot of them. If your husband will not go with you or does not approve of your choice of physican just leave him at home. The bottom line is that you need to get this material out of your body. Missing work, and losing that income are important but NOT as important as getting this out of you. I do not know what the recovery time is and it probably depends a lot on what was done so try to find out so you can plan. You will just have to manage and it is not for a long time. If your employer is a jerk and will let you go then maybe there is a better job that will be available when you are looking and feeling better. Think positive and do what you need to do to make yourself healed then work out the rest of it. Be strong and do not let your husband bully you. It is an equal partnership and it is your body, If you let him bully you then you will create a monster. If you have a support system call on them to help you. People love to be asked but people do not know you need help unless you ask or they may fear interferring unless called on. Call on people in this community to advise you. There is a lot of experience and knowledge here. We look forward to learning about your journey. Let us know how you are as you go through the process and ask questions, ask for help, be courageous and put your health before the money you will not be earning…you can earn more when you are feeling better afterward. The pain does cause great fatigue and dear, you are just going to have to manage it as best you can. Try to make sure you have a toolkit of ways to combat pain and use it. A good compassionate pain management doctor is a great ally. Try to find one in your area. You may need an anti-Depressant for awhile as well. You can do this and if necessary you can do it without your husband. If he drags you down then just do it without him. Take care of YOU.

  44. Bejah Notrettu says:

    Patricia, I still ride my horse despite the coxyxx pain, the Vulvodynia (Vulva on fire and not in a good way) and what I did was cut and spray glue (Go to art store) pieces of mattress pad padding (The pointy spongy stuff) and I made a bum holder with a special insert in the middle (It is sort of like those little pudding cup seats for newborn babies) and it helps a lot. Why don’t you try creating something like that for your bus driving hours? Can you plug in a heating pad…for the bus seat…would that help? Or maybe you could stuff your pants with wonderbread (Just kidding). Be creative, make something yourself to help. Forget about how it looks, All that mattters is how it feels.

  45. Eileen says:

    Position Statement from Assoc of Urogyn (AUG) posted 1/7/14. The AUG has effectively said that all the men and women maimed from mesh are crazy!
    http://files.augs.org/download/1258.2535?AWSAccessKeyId=AKIAJBU23EXMIYKEP2SQ&Expires=1389499151&Signature=3D4QuGCb5Ne1kLfDCtsNQCj4RtA%3D

    • Jane Akre says:

      Thank you Eileen!! Much appreciated.

    • Jane Akre says:

      That doesn’t open- Try the AUGS mid-urethral sling new policy statement January 2014 here:

      http://www.augs.org/p/bl/et/blogid=16&blogaid=192

    • Mary pat says:

      It is important to note, AUGS did not say mesh injured people are crazy. That is just your interpretation. I am not defending AUGs, I am defending mesh injured people. We are not crazy and everyone who is mesh injured knows their erosion and pain and damage from mesh is REAL. Sadly, AUGs simply refused to acknowledge that mesh injured people exist. The mere fact that AUGS denies our very existence shows the world how corrupt and biased AUGs is. Instead of making mesh injured people look bad, AUGs has shown the world how bad they are!

  46. Pat Murphy says:

    I had mesh implanted in January 2007. I have been in pain since I woke up from the surgery. I was told it would go away with time. It didn’t. Every doctor that I saw told me it was my age my being a woman and I should just expect this and live with it. I had to get a lawyer before I could convince a urologist to remove the eroding mesh, which he said I could live with the pain and infections, it was no big deal. After that surgery I was still in pain. He told me to just shut up and live with it. I found another surgeon she removed a small amount of the mesh that was between my vagina and my colon. This eased the pain when I lay on my sides. But I started having more trouble walking pain in my thighs tingling and numbness in my feet. I am very blessed that I work for a company that has allowed me to work from home(no easy task for them they had to write a new computer program). Sitting hurts, walking hurts. The more I move the more I hurt. The my last surgeon will no longer talk to me. I am hoping my new general physician will be able to help find a pain management doctor. I live in NC. Most of the doctors here don’t think women are in pain or can feel pain only men have real issues. I saw one urogynecologist
    that was working for the company that I was suing. She promised me that her treatment for my case would be excruciatingly painful. I found another surgeon that did at least release the tension of one of my meshes. I have a total of three. Still in a lot of pain. I am also blessed with an understanding husband, but even his patience is wearing thin. I can’t remember when I last had a good nights sleep. I am moody and cranky and I hurt 24/7. I can’t visit my grandkids because I can’t make the long trip to PA. Is there anything I can do so I can walk better and sit longer? I wish the doctors would read your article and stop telling it couldn’t possibly be the mesh causing my problems.

    • Jane Akre says:

      Pat- Sounds like you need some better medical care. Most experts agree that partial removal potentially does more harm than good. If you’d like I can pass your email to patient advocates or please visit the Facebook page where women discuss options they’ve had success with… I’m sorry this has happened to you..~ja

      • Pat Murphy says:

        please pass my email to any one who can help. Re-education of doctors is going to be necessary. The Dis information being given out by the mesh companies and there supporters is hard to over come.

      • Pat Murphy says:

        Do you know if pain management would help? I have tried everything else so I thought might as well try this.

    • Carly says:

      Get your Pudential Nerve checked……..I have PN so much pain to sit ,stand and walk. You need to get a MRN done. Carly

  47. Mary pat says:

    I wonder how much the pharma companies paid AUGS to promote their slings???? So much corruption and disregard for the suffering they cause!!! Evil to tbe core. Every mesh injured person knows they are lieing. The fact that AUGs didn’t even mention the adverse events and side effects makes their position look like a one sales promotion for pharma companies. They are trying to sound so intelligent yet they look so biased, one-sided, heartless towards mesh injured people…. AUGs has shown theur true colors to the world. Pretty ugly.

  48. Mary pat says:

    Meant to say one-sided sales promotion

  49. Lisa says:

    I had tvt-o procedure done back in 2010. I have had pain in my inner thigh, and right under my left buttock, I have seen the Dr that did the procedure and she said that its not related, I have been looking on the internet to find out what is wrong, I couldn’t find anything until I came across this, I have alot of the symptoms, dies anyone know where I can get this removed.

  50. Annonomus says:

    What are the TVM TOT SUI victims to do when they have absolutely no money, no health insurance, no family support? Any pro bono help with all costs available to us unfortunate ones or are we too just die? Please help with any info you have on getting the rest of the mesh out of me that was left, its killing me. Thank you!

  51. L A B says:

    Looking for cost saving suggestions for UCLA Trying not to take pain meds as they mess with processing. Hoping to avoid any more clearing/weeding of my b&b before my initial consult. Guess those are fibers in my urine. Wondering how bad it really is as after almost 7 years and two gnarly partials my threshold is built up to mutant.

  52. Elizabeth Mendez says:

    Can someone please help. I feel so alone. I cry and feel sick everyday. I feel my legs going out on me. I cant if lay on either side of my hips. I practically feel I am dieing slowely. I dont know what doctor to go see. I am in texas(Rio Grande valley) there aren’t very many surgeons. The doctor who place the sling right away transferred me to another doctor. Dr Ruiz recommended surgery again, but I did feel very confident that he could help. I had several office visits with him and he didnt show compassion towards my pain. When he mentioned he could help through surgery I than asked him, how soon or when would you like to perform surgery. His reply was whenever you are ready.just get with nurse, n he left the room. I cried and ask God to help me. My family doctor has been caring ghost or me. However he has referred me back to Dr Ruiz because he can no longer prescribe antibiotics to me. I would like to speak to anyone of you.I guess I am looking for comfort and for someone to understand me. My family sometimes dont believe how horrible I feel. They are supportive but dont understand my uncapability. Email address is liz.r.mendez67@gmail.com and telephone #956-535-0420.I know if I speak to one of you it would surely give me peace of mind. Please all of you hang in there and may God be with you all the days of your here on earth. I love you all!

    • Jane Akre says:

      Elizabeth— can i forward your email onto some patient advocates? do you have your medical papers and know what type of mesh you have, I’m assuming you have it or you would not be writing but I don’t believe you are specific in your note above. Do you have insurance? Medicare, Medicaid? Can you travel? Your family needs to understand what you are going through and there are many family members who are hit with the same realities who also do not know what to do or how to help…. Please answer my questions so we can help… or you can write privately janeakre@meshnewsdesk.com if you feel more comfortable. thank you..

      • linda beales says:

        is it legal for a primary care doctor to put in you medical record that you are a drug addict because you take pain meds for the mesh complications but have worked so hard for 26 years to stay sober from your drug of choice which is alcohol with no elapses?

  53. Elizabeth Mendez says:

    Meant to say Dr Ruiz didnt and family doctor has been caring for me. Dont know where ghost came from

  54. Thanks,for written this,,I have suffer 9years with this problem,,seen Drs..and noone will help me,,until now that my Urology Dr.. Did a cystoscopy,,,I hope more people read this and get help,,is the must miserable,,painful situation…nine years of my life being so miserable and limited to live a normal life..

    • Jane Akre says:

      Nellie- Please let us know where you live, if you have insurance AND your medical records.. you should not suffer like this alone….~ ja

      • I Live Leominster,Mass..I have for medical insura its Fallo Mass Health,,, after the Surgery on Feb,,23,,2005 I start feeling uncomfortable,,,a Lot of sencesivities in my abdomen,,and pelvic area I startated telling my gyn,,but never had and answer,,until now that the mesh, is blocking my urith and not being able to pass urine,,so the Urology Dr..did a cistoscopy and the mesh is inside my bladder,,,and some other places,,but my new gyn is going to do surgery first my bladder,the slowly the test,,,Thannks God a Dr.capable

  55. I Live in Leominster Mass..my insurance is Fallon Mass Health , finally found a new gyn to help me,,his going to do my bladder first,and then the rest,,,the mesh is blocking my urethra,,and have a catheter on cuz I can’t pass my urine,….by next week should have …..Thanks for your concer…

    • Judith says:

      Hi Nellie,
      My name is Judy and I live in your area. Would you mind me asking the drs. name to help you with your repair? I am looking for a dr. in MA that can help. It seems every dr. I find tells me the answer is to put in an additional mesh. I have tvt-o and it has been “released” but is now eroded again (trust me both me and my husband know!). but Dr’s won’t acknowledge it. even after MRI. I’ve been going through this since ’07!
      Best wishes to you with your new doctor. I hope it finds you some relief.

  56. Chastity says:

    I just got home today from California. I originally was going to see Dr. Raz but had to get in quicker due to pain. I got to see Dr. Kim, I live in Huntsville ,Al. She is awesome, I got the best care I have ever gotten in 4 1/2 years of my mesh experience. Her assist. Found my mesh within seconds of examination, I don’t don’t know how many doctors I have seen that has ” looked” at me and said I cannot find anything nothing is wrong. I have done research on my own about doctors and mesh in my opinion there is NO one better than the specialists at UCLA. I spent hours reading Linda Kilpatrick ‘s blog I am pretty sure she doesn’t even know me. But she has no idea how many people she has helped. (Including myself) from what I understand and my personal situation I had a sling and posterior and anterior repair. She is going to remove the posterior part and told me she would check out the rest because she doesn’t want to go in there and start ripping it out if it isn’t causing me problems. I am emptying my bladder fine no retention not having to self cath. She just don’t go in there to take it out just to get it out, so that it won’t be there to cause problems later. Which is what I thought, she explained that it could cause more damage to bother something that isn’t causing me problems per se. She would check the anterior part out though during the posterior removal. I just wanted to clairify that they don’t just go in there to take out the mesh to get it out of your body unless you are having serious problems. Which you wouldn’t want to this isn’t going to be easy surgeries. Thank you ladies for all your time spent on writing blogs and helping us out. My surgery is scheduled July 29 2014. So far just one surgery. It was well worth ALL the money I have spent and will spend to travel to UCLA from ALABAMA, and I am thankful that there are talented doctors to perform such services. If anyone has any questions I will be more than happy to try to answer their questions about UCLA or just lend a listening ear. Hugs!!!

    • Jane Akre says:

      Chastity- So great to hear about your positive experience. Women often ask if there is a competent doctor in their area who does mesh removals… I say usually ‘No there isn’t” it isn’t going to be convenient. That’s one reason why mesh is so dangerous in my opinion… a partial removal, which many can do, often leaves her in worse condition. Anyway I’m sure there are people reading your story and feeling hopeful so thank you for your research and for sharing and for Linda’s blog. We’ll be thinking about you July 29th. ~ ja

      • Chastity Pickford says:

        Hey Jayne,
        Thank you for answering me back. Well I have heard that
        Partial removals were bad too. I have heard this a lot from linda and you. I was afraid you were going to tell me that :) I hesitated not getting to see Dr. Raz. Should I have waited? Should I tell Dr. Kim I want her to take it all out no matter what. She said that if she did It could very likely cause me to be incontinent. I asked her even though I never even was before. She said yes it’s like pulling a sticker off of something . I saw her and Dr. Milano. You can private message me if you want to. I also ask her about the mesh leaching chemicals into my body. But I am also TERRIFIED that I will be horribly incontinent for the rest of my life. And that the anterior part of the mesh could be ok if I had left it alone please please answer me back. Or you can even call me I can tell u a couple more things I really do respect your opinion thanks bunches ;)

    • Lynn says:

      Chastity, I think we are on the right track to get the help that we need by going to UCLA. Chastity, you and I seem to live close to each other. It is a sacrifice to fly to California but will be well worth it to get better. I leave 4 weeks from today to go to UCLA for my surgery. I am thankful to all the ladies who have written in telling of their experiences, and I am thankful to Jane for her dedication to this cause. Words can’t properly express our appreciation!!

    • Ann says:

      I would like to talk with you either by phone or in person. I live close to the Huntsville area. is this possible? 256-566-8203. I pray that everything goes well for you.

  57. Chastity says:

    Hey Lynn where do you live? And I surely agree with you . I was hoping Jane would email me privately. She might not feel comfortable. Are you having a full removal? I’m so confused what to do. Good luck with your surgery and I will surely be praying for you.if you would like to talk sometime just let me know. Thank you to everyone especially Jane and Linda god bless :)

  58. Paula Duncan says:

    I am from the UK and two days after coming out of hospital after TVT mesh inserted I started with intense burning sensation down below and also a feeling like I had razor blades inserted inside. After four visits to the doctor in tears, I was sent to see the Consultant yesterday. He said that my severe pain was definitely not down to the operation (despite me experiencing nothing until 2 days post op), when I said my Doctor said it might be nerve damage his response was that there were no nerves in that area that could be damaged, when I said could it be the tape cutting into my bladder or fitted too tightly (someone else my doctor suggested) he said that I was so thin that he was able to feel the tape and it was fine! Who does he think he is kidding? And the only reason I am thin is because I have lost so much weight due to the stress of having this op carried out. When I told the Consultant that there were many women out there suffering the same thing, he said there was no proof. So while I was sat crying in front of him, I shouted at him and told him that couldn’t he see that I was in pain and surely I was proof – but oh no! His conclusion was that something else was causing my pain. He didn’t offer to find out what this was, just suggested I might need to go to a pain clinic to find help to manage it. If I end up committing suicide over this pain, which is so severe, I will definitely name him in my suicide note as the reason and also call for all TVT ops to be suspended! I am a single parent trying to support my daughter on my own, so I need to keep working. I work in an office which involves constant sitting, which aggrevates the pain, and am just going through a divorce and need to find a new house and move. Can’t see me meeting anyone else either as I certainly wouldn’t be able to have intercourse. Feeling really let down by the NHS and angry that the Consultant is allowed to treat his patients in that manner.

    • Jane Akre says:

      Paula- Please see the Liz Reese Patient Profile story on Mesh News Desk… she too is in the UK and sought out a doctor…There are many women in the UK suffering and Meshies UK is a Facebook site where they discuss options… let me know if you need more info. janeakre@meshnewsdesk.com

    • terri says:

      Hi paula .I know exactly what you are experiencing, as I to have suffered the same and been told by numerous drs its not the mesh, I even went to theatre with one and he was adamant he coudnt see anything! even though the tape was protruding through my vagina, and bladder! the problem is they can insert the tape but they don’t know how to remove it , but I did find a brilliant female specialist on the NHS who knew how to remove it and she has done me 2 ops ,because i coudnt take the pain anymore. it effected me so badly. if you want to email me t.stockland@btinternet.com or any other ladies i will give you her name.

    • Carly says:

      Paula, please do not think that there is no life after MESH. I meet the most wonderful man 2 yr after I had put the mesh in. I cannot have sex but there are other things to do. I would love to talk to you if you like…call me anytime 410-446-8454 IF ANYONE WOULD LIKE TO CALL AND CHAT FROM THIS SITE….PLEASE FELL FREE
      CARLY

  59. Catherine says:

    Last March, 2013 I had hernia surgery and adhesions removed.
    The doctor took pics of his masterful work(his words)
    I was sliced and diced nine times.
    Almost immediately after, I began have many urinary tract problems.
    I would tell the doctor of this problem and he would just tell me he didn’t get into that area of problems, yet every time I went for a checkup with him for the surgery he did, they would ask if I had any problems urinating??

    I really feel he did something that day when he was inside cleaning out the adhesions.
    Its been 14 months now and I still have constant burning, yet all these doctors are trying t o tell me because of my age, my estrogen is depleted and I have drying of the tissues… What???? I was fine till this surgery. Now I am loaded with this mesh inside but all these doctors chose to ignore this.

    All I know is, I was fine till this surgery and now I really burn so bad its not funny,,,
    When I stand, I feel better, same when I lay down, but sitting is terrible, I feel like the Princess & The Pea, and you know where I’m feeking “the pea”,,,,,

    Its terrible, now they want me to go on hormones and I told them no freaking way….
    Their answer to everything, swallow some pill that will only give you cancer one day…
    There must be a doctor out there that can help us, or do I say one who would take the time to care…..

    • Jane Akre says:

      Where are you located Catherine? I’m sorry..

      • I found a Dr..that is trying to do his best to help me,,,just had surgery to removed part of the mesh out of my bladder,,,,,I need more surgery ,,,to finish removing and ficks some damage,,,but still have a lot of pain,,inflammation,,burning urination,,some off and of bleeding…something have to be done so Drs..can repair all this damages..

  60. Stacie OBrien says:

    HELP!!!!!
    I am having and have been having so many of these symptoms but no one has ever told me they did or did not use mesh on me.
    WHEN would someone have done so? I have had a partial “H” in 97 and Full “H” in 2004 leaving behind JUST my right ovary which 8/9/12 became necrotic and required emergency removal with a 7-centimeter cyst, all that was misdiagnosis at our hospital, which the Gyno found during surgery. My husband and I had our first intimate encounter 8 weeks later and the pain was incredible. Since then we have been unable to.

    I have so many of the symptoms above that it is CRAZY, some started way before 2012. Some symptoms above I had so badly that i was out of work from 10/11 till 3/13 at which time my employer gave me a choice to come back or lose my 25 year position. I am back because I love my job but NOT because I feel better.

    My husband and I are STILL searching for answers. I am 2 weeks post op from vaginal rectocele prolapse repair and cystoscopy where a 4mm kidney stone was dealt with while TRYING yet another specialist to discovery where all my symptoms are coming from. Would SHE have been able to see the mesh? Would a surgeon from the past not have listed it? Would it show on a CAT scan with contrast? PLEASE HELP ME, I am desperate, tired, sick and frankly been sick for 4 or 5 years and I am ready for it all to be over.

    • Jane Akre says:

      Stacie- You deserve answers and this community can reach out to you. My understanding is that translabial ultrasound can only see mesh, not MRI or CAT scan…You need competent medical help. Where are you located and do you have all of your medical records. it sounds as though you do NOT have competent medical help… did you had additinal mesh put in two weeks ago?

      • Stacie OBrien says:

        I honestly dont know if I have EVER had ANY mesh put in? No one has ever said that they used it with me. But I have been trying to read up on all the symptoms I am having and dont want to live with anymore and a colonoscopy AGAIN just is not going to find what I hurts.

        I am trying to find where my medical records for my retired doctor went know. I am from Central Maine, and my insurance through my employer already is going to stick me in the poor house.

      • Stacie says:

        Jane,

        I had my post op today and asked if my medical records had made it to her. She quickly read through them and said no mesh had been used and said 6 week post op needed and see you then. When I got home I found that I received my medical report from my hystorectomy in 2004 in the mail today. 2-0 pursestring 2-0 Vicryl Mesh was run all through me. I was never told!!!!! The hospital only sent me notes not numbers or any other information.

        NOW what do I do? Obviously no matter what I do from reading all the posts and knowing what I have gone through all these years there is not musch chance of this getting a whole lot better.

        HELP x 2

        • Jane Akre says:

          Why would your doctor say No Mesh when it was in the medical records? Stacie.. send me your symptoms etc and I will pass it onto experts if that is okay with you…thank you and I’m sorry. ~ ja

      • Stacie says:

        Mesh was used, where do I go from here? Post op doctor read my 2004 op report and told me NO 6/6/14. I LOOKED UP EVERY THING MY SELF AND VICRYL WAS USED.

  61. Mary pat says:

    Stacie you must go to the hospital where you had your surgeries and read the file. If mesh was used there should be a tag number for the product that was implanted. Good luck!

    • Stacie OBrien says:

      I thank you, I am trying to do all this. Had I known………………. Since that time Thayer was bought by Maine General so I hope to God they retained the Medical Records. Calling now.

  62. Mary pat says:

    Mesh victims DO NOT have to accept the unfair settlement offers. Everyone stand strong on this.

  63. Stacie says:

    From your list above, I numbered your bullets and have just listed the numbers of each that apply to me:

    Activity/General 3, 7 right but check just started a few weeks ago as if i am sitting on a balled up sock, 9, 10 right thigh only, 12 14, 15,16, 17 the two Doctors say the symptoms I have they see no reason I get them, 18, 19, 22, 23, 24 & 25

    Elimination Symptons: 6, 7, 8 10 & 11

    Sex: 1, Since Gyno surgery for necrotic right ovary we have not able to engage in Intimacy widue to the pain,

    • Stacie says:

      I missed the last list after whic I have experienced all of the symptoms. I left work for over a year and almost lost my job.

  64. Sandy says:

    Hey Ladies, there are very few doctors that have a lot of training with PND I finally found one in Phoenix AZ. he looked at my record and I had 3 different people calling me from his office to get me an appointment with him asap. Problem is he is so busy trying to help women that I can’t see him until August. I am on a waiting list in case of a cancellation but at least I have hope now. His credentials are very impressive and so are his patient reviews. I really can’t wait to se him. Don’t give up the hope. There is help out there but you have to dig and fight to be heard. I will let you all know what happens. If he can do what I think he can do I will have a lot of my life back.
    I mean it when I say I hurt for all of you who have to go through this. This is so unfair to all of us women.

  65. Sandy says:

    Staci I did lose my job, and so much more. Hang on and keep fighting

    • Carly says:

      Did you apply for SSDI….if so when?? I did this Nov will be 2 years…any advice anyone

      • msm says:

        If you get denied, appeal it yourself first. You can do that by sending in the required documentation and proof. Don’t hire an attorney unless you get turned down again. The attorney gets paid by SSA when you get your benefits. I’m not sure if they get more depending on the number of appeals or not. Almost everybody gets denied the first time. If someone is really totally disabled, never stop appealing.

        • Carly says:

          I have been denied twice already and I did hire an attorney. As of now she said I’m 6/8 months out at least for a court hearing. Has anyone had to go in front of the judge and what happen there? Are you getting it msm?? I just don’t know how these people think you can live with no money it just adds to me being depressed.

          • Stacie says:

            I did for my daughter’s disability case it’s pretty laid-back there were not a lot of people there. It still took months even after we had the hearing for them to decide what they were going to give her how far back they were going to go him and she was on disability as a child the only reason she came off from disability is because she had a trust fund that she came into it 18 years old and spent in three weeks. I never hired a lawyer I did all myself so that she was the recipient of all of her money I did not want somebody else to get her money so therefore hers took longer than I’m sure most people’s due but it was a fairly laid-back easy process even for me to do for her.

            I would think if you have all of your medical records and hand from all of this mess injury and you have a lawyer that it shouldn’t take such a long time. But I will tell you that they love to fight mental health issues a lot more than they like to fight anything else.

            And honestly the longest wait is due to staff retention and most of the local state offices because they’re the ones that ultimately make most of the first and second decisions on all disability cases and I only know this because I used to work for one of them years ago the disability determination services units so that’s basically the longest part of the wait

  66. Sandy says:

    Contact your state senator, remeber they work for you. tell them your situation and ask for their help. also did your doctor file out a RFC form for you? Your doctor can be your best advocate.

  67. Stacie says:

    Does anyone on here know who I would contact for more help since I started collecting my medical records first of all no one will give me the actual operative notes or the actual copies of the bills that would have the ID numbers so that I can find out who the corporations art with a pharmaceutical companies are that put the mesh inside me well not inside me but made the mash and some of the medical records that I’m requesting I’m getting no responses from.

    Since having the prolapse repaired, that somewhat of a relief but nothing else has been relieved and I don’t know where to turn all of the commercials on TV say if it was in the last five years I don’t know what to do it’s been in the last two months that I discovered that somebody put mesh inside me but it was 10 years ago that I had my hysterectomy I need to know where to turn I need to know who to call I want the stuff out of me I want to start my life over again I’ve been miserable for years and someone tell me where to turn please

    Do I just start looking for a lawyer here in Maine that deals with mash lawsuits I don’t know what I’m supposed to do I’ve read the site you guys seem knowledgeable and I’m going to include my personal email and hope that somebody gives me information that I can use because at this point I’m confused I’m lost and I’m so tired I’m just done an overall all of this. Staciez@ymail.com

    • Stacie says:

      Sorry, I did this by speaking into my phone. Evidently it can’t spell or understand correct English.

      • msm says:

        You might consider calling the medical records office, ask to speak with a supervisor and set up an appointment to talk face to face and get that person to put in writing the reason they will not provide ALL of your records. If they won’t fo that, contact the CEO or COO of the hospital for an appointment. If they refuse, tell them that you are trying to give them a chance before your attorney takes over. Do the same with the MD’s office/billing office/etc.

        HIPAA “gives you, with few exceptions [psych notes], the right to inspect, review, and receive a copy of your medical records and billing records that are held by health plans and health care providers covered by the Privacy Rule.

        http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/medicalrecords.html

        Take this with you. If they are not forthcoming immediately, file a complaint with the feds:

        http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html

        Hope this helps.

  68. Sandy says:

    Carly, all I know is that I followed what the SSDI site said and had my doctor complete the RFC form and had a non attorney file it for me. I then contact both of my senators here. The one was helpful and called SSDI for me also. My husband also wrote a letter by the suggestion of my represenative to explain how bad I was and what i could not do now. i even talked to my case worker and told her how i felt and how hard this was for me. I filed march of 2014 and by June of 2014 I was approved. I pray you can get some help.

  69. Carly says:

    Thank you Sandy, will keep posted.

  70. Julie says:

    My right leg is shooting pain, numb and tingling, the right side of my pelvic is in excruciating pain. If I were to go to the ER what would they do?

  71. Stacy L says:

    I had my TVM in September 2013, since then I have had all types of pain in pelvic, groin, back areas & UTI’s that have been treated & are still present. I have been to my surgeon several times & he has completed tests & he says that my sling/mesh is fine, but he hasnt been listening to me since he really hasnt done much of anything to help me. I am looking for another specialist in my area(NJ) to help me & decide if I need to have TVM removed. I have lost 12 pounds since MAY 2014…This is putting a strain on my marriage of 18 years since sex is out of the question. Any advice, opinions would be greatly appreciated.

    • Jane Akre says:

      Interesting… you sling is fine but WHAT ABOUT THE PATIENT? How can he separate you from the placement of your sling? Depending on where you live you might visit the doctors mentioned on this site or post on Facebook and solicit comments from people who have had successful outcomes. ~ ja

  72. Sharon Roczynski says:

    MY SLING WAS INSERTED IN JUNE ’05. I KNEW SOMETHING WAS WRONG AFTER A YEAR, AS I KEPT GETTING INFECTIONS THE INCONTINENCE WAS FAR WORSE AFTER THE SURGERY. NO DR. WOULD LISTEN. FINALLY THE PAIN GOT SO PAIN IT FELT LIFE A FIRE INSIDE ME, A UROLOGIST TOOK XRAYS WHICH SHOWED THE MESH WAS EMBEDDED IN MY PUBIC BONE, HE SAID IT WOULD BE ALMOST IMPOSSIBLE TO REMOVE. I AM GETTING STEROID INJECTIONS TO EASE THE PAIN. I LIVE IBLOOMINGTON IL, IF ANYONE KNOWS A GOOD DR IN THE AREA, PLEASE CONTACT ME. AT 309 454-8662.

    • Jane Akre says:

      Rush medical center and Dr. Bruce Rosenzweig just testified for the plaintiff Jo Husky in the federal trial. Put her name in the search bar and read about him. ~ ja

  73. Elycia says:

    Had TVT sling in 2001 – at post-op had some pain and a “bump” by the incision site on the left side of the vaginal wall. Took antibiotics and all seemed well. Come 2004 had several UTI’s and pain in the same area during sex. Went to my gyno who said to go back to the surgeon. Went back for several visits, to discover the mesh was eroding through that area of the vaginal area. Had some of it “trimmed” in office. Had some relief, then again same issue. Went to new MD, and had exploratory surgery, with a little more mesh “trimmed” out that was exposed. Symptoms came back yet again. Went to MAYO clinic and saw another MD, who found built up scar tissue, removed that and all was healed well. Around 2011 had left sided hip/glute pain. Went to orthopedist. Went to PT, went to more PT, and then to homeopathic MD. Went to acupuncture where I was told that there is a connection between the sling and hip/glute pain. Now at new PT and they say the same thing. Working to get the scar tissue to be less rigid through some manipulation and stretching. Now having a lot of bladder symptoms and labial discomfort and pain. I can feel there is a problem with the sling under the urethera…it almost burns. Seems that I have “moved” the nerve pain from my hip/glute to the uretheral area. This has been such a nightmare. I would never have thought that 12-13 years later I would be suffering with these issues. Will be looking into having it removed. Saw an article on the MAYO website about a new procedure that has not been approved yet. Wondering if anyone has had any experience with MAYO clinic in Rochester MN. Is there any other way to fix this other than removal – I don’t know if after 13 years mine can be removed as I’ve been told it has become so engrafted in my tissue that it would be nearly impossible to remove. Anyone have any experience with this? Thanks

    • Jane Akre says:

      Elycia-

      Daniel Elliott at Mayo in Rochester is a very good source of info for you. I’m so sorry— those partial excisions likely didn’t serve you well…. though I’m not a doctor. Experts say they release particles and increase degradation, fraying, movement, etc. I’m so sorry… write if you want more janeakre@meshnewsdesk.com

  74. John doe says:

    Those thinking of removal should think very hard. My wife has had two revisions and is now suffering these issues. Originally she had awful tightness from sitting, and awful bobby pin flicks. It was getting worse, so she had it partially removed, all but the anchors. Since then she has had worse pain many of the symptoms described above, all of it on her RIGHT side only. We thought the pain was from the anchor on the right side, so we had that removed. The problem is worse. The nerves down there are no joke, my guess is the original surgery implanted poorly(removal doc side left side was placed higher than it should have been) it was placed near the obturator, that has been bugging my wife from the start, removing it sadly irritated it even more, Having the anchor removed really screwed it up.

    It’s really awful. The removal surgeon he would never implant things around the obturator because of all outcomes he has encountered.

    It’s disgusting how all this happened and to not forget. These companies saw a market that was not filled with proprietary tech. How many people here with meshes were given the option of using their own fascia for the sling? My wife was not, the efficacy of this type of mesh is very good. It is after all your own tissue and has been done for a long time.

    But the companies saw it differently rushed a product out to capture a share of that market which is large. While leaving thousands with pain that is so new it is literally on the cutting edge of current medicine. This is what the profit motive gets us, those of you suffering should remember this lesson for our children. Because to me it seems like the world is getting tilted more In the favor of these corporations who care nothing for us, and see use only as consumers to rip off. These companies have ripped off our very lives. Sorry to rant but it’s important to recognize how this absurdity was perpetrated on us.

  75. Cebrina Sanders says:

    There are forums on Facebook for Pudendal Neuralgia and for Chronic Pain. It is chock full of resources and physicians post videos as well as updates on new findings. I have Pudendal Neuralgia Entrapment and was diagnosed in 2009. As of today, I am at home in pain, taking Hydromorphone, Lyrica and Elavil. Currently in PT and now I’m contemplating surgery because this condition has ruined my life. Facebook helps a lot and can give you all insight as well. I at times don’t read the postings because many of them just complain instead of being grateful. I can truly say that I have had more good days than bad days. Good luck to all of you.

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