Suffering in Silence: Jane Dowdall – Life After Prolapse Bladder Surgery with Synthetic Mesh

Oct 31st, 2011 | By | Category: News, Patient Profiles

Jane Dowdall

Jane Dowdall, 55,  is from  Ontario, Canada and tells her own story of bladder prolapse repair and her life today.

“In early 2009, I was referred to an Ob-Gyn for a bladder prolapse repair. During my pre-op appointment he explained that he would be using stitches for the repair, but since there was a good chance that following this surgery I may experience increased incontinence, I may want to also have a procedure that looked after that at the same time. Since I did have minor SUI (stress urinary incontinence) prior to the surgery, I agreed to the additional procedure.

“The Ob-Gyn sent me to a colleague who would perform the incontinence prevention part of the surgery. At my pre-op appointment with this Ob-Gyn, he quickly stated that I would be having a TVT-O but said nothing about possible risks or side effects. After leaving the appointment, I checked the Internet for more information on this procedure, but there was little available. Had I known then what I know now, I would have NEVER agreed to this procedure.”

Two Doctors?

“The next time I saw both doctors was in the O.R. on May 15, 2009. It did seem rather strange having two Ob-Gyns in the O.R., and I often wonder if one was learning from the other.

“Immediately after surgery I was experiencing pain and had difficulty urinating but attributed this to post-op symptoms. However, during the next couple of months the pain and urinary retention worsened. The pain radiated from my upper thighs to my navel, feeling much like a migraine headache, along with a burning and stinging sensation. Sitting, especially at my computer at work, was becoming unbearable.”

Out of Her Mind with Pain

“I visited the first Ob-Gyn and he ordered a pelvic ultra sound that indicated I had 63% bladder retention. He said the symptoms I was experiencing were not from ‘his part’ of the surgery and referred me back to the Ob-Gyn that performed the TVT-O.

“When I finally got an appointment in September, the TVT-O Ob-Gyn said he had not come across any problems with this procedure in the past, but would ask a colleague what it might be and that perhaps it was too tight. In the meantime he ordered another pelvic ultrasound. At my next appointment in October, he said I had an acceptable level of 20% urine retention, even though I was still having trouble urinating. He was still very puzzled by the pain I was experiencing and prescribed Celebrex and sent me on my way.”

Body Rejecting TVT-O

“Unable to work a full day due to extreme pain, I visited my family doctor who prescribed narcotic pain medication and referred me to a local Urologist. After a cystocopy that did not reveal erosion of the TVT tape or bladder tears, he felt my symptoms were consistent with TVT mesh rejection. He stated this was very rare and that he could not remove the mesh at this point. I was devastated!

“It wasn’t until I stumbled upon a newspaper article on the Internet from the Hamilton Spectator about a woman experiencing identical symptoms as my own, that I realized I was not the only one with an adverse reaction to this surgical mesh. Obtaining my hospital records, I discovered I had had the Johnson & Johnson Ethicon Gynecare TVT-O made of Prolene Polypropylene.

“By January 2010, the Tramadol and Tylenol 3 could no longer control the pain and I was unable to work. Other ‘nerve’ drugs were tried but I could not tolerate them. The local Urologist found a Urologist in Toronto who had experience in mesh removal and I was given a referral.”

Dr. L. Carr in Toronto

“In July, 2010 I had an appointment with Dr. L. Carr in Toronto, a very caring doctor who is extremely sympathetic to mesh issues. She said that only the center section of the tape could be safely removed due to the manner in which TVT-O is anchored and that there may be a reduction in pain but there was no guarantee. I appreciated her honesty. Feeling it was better to have the majority of the mesh removed to decrease chances of future erosion, I had removal surgery in August 2011. There were two other mesh removal surgeries that day, one lady traveling all the way from British Columbia.

“I am now able to urinate normally but have not had a decrease in pain. I am experiencing new stinging sensations that apparently could be caused by the ‘arms’ or ends of the mesh rubbing on surrounding tissue.”

Health Canada Warning

“What angers me is that I spoke with a nurse who just had the TVT-O procedure by the same Ob-Gyn that performed by my surgery, and when she inquired about possible risks or side effects, she was told there may be some post operative discomfort but no risks/side effects that he was aware of, even though on February 4, 2010, Health Canada issued a bulletin, (see here) similar to the FDA’s bulletin, warning of complications associated with transvaginal mesh. She is now experiencing problems similar to mine.

“It has now been almost two and a half years since the initial TVT-O surgery.  I am in constant pain and unable to work. I have been on Long Term Disability for over a year. In order to get through the day I must take narcotic drugs.  I spend most of my time in a reclining position, in loose fitting clothing, and I seldom leave the house.  I have filed a report to Health Canada without results.”

 

 

 

Tags: , , , , , , , ,

32 Comments to “Suffering in Silence: Jane Dowdall – Life After Prolapse Bladder Surgery with Synthetic Mesh”

  1. Paula C. says:

    Does anyone know a Canadian Law firm that is taking on these cases??

    Any help would be appreciated.

    Thank you

    Paula C.

  2. Kathleen says:

    Jane

    I was the person whom the Spec article is about. I am glad that the article helped you. I am still in constant and un-ending pain. I was wondering if you can contact me since my lawyer said that he got an expert medical opinion and that DR felt that I have NO grounds for a case since I had the TVT-O which he said is not included in the warning- and I am just a rare person who is having issues. May I ask who you got as your expert medical opinion so I can try again. I don’t want to pay to have another opinion but I don’t want to drop the case either. Can you help me Jane?
    Kathleen.

  3. Trilla says:

    I had the bladder mesh surgery in oct of 2011, I seem to want to urinate when i lay down at night,and i have a sensation to go and very little comes out, i didnt know this was a bad thing until after this was done and saw commercials on tv! Worried at ky.

  4. vicky bolton says:

    im 61 I had the mess put in in 2007 what do I do now can I safely have the mess taken out in Kamloops, B.C.
    or do I need to go somewhere where they have done this and are truly skilled Im in so much pain the burning
    is insane ive tied everything n o soap, no sex no sense left im on automatic pilot

    thankyou soo much for this site Vicky Bolton

  5. C Tanner says:

    Thank you for this very informative website. It seems that even if risk of complication is indeed ‘rare’ (from the evidence, this seems arguable), the difficulty in reversing the complication means that all patients need to be adequately informed about the risks before undergoing such surgery. The information on your site has led us to issue warnings on our Prolapse Surgery (http://prolapsesurgery.com) patient information site.

    • meshcomplicationssurvivor says:

      Thank goodness people are finally starting to listen and get the word out about these complications!

  6. Dianna E says:

    Hi, I just wanted to let you know I to am still going through the same thing from 2009. my implant also was from that year. I hope things are getting better for you. I was also referred to Dr. Carr. She is amazing!! If I had been given the proper warnings I would never had the surgery in the first place. I was 43 when i had the first surgery and since had 3 to try and rectify the problem. Women and their partners need to truly be educated on all the complications and side affects. I wish i had been.
    I too am using the Will Davidson Law firm if anyone is interested in a Law firm doing vaginal mesh cases.

    Jane I pray some day we wont have this pain anymore and the more people we can reach out to the less chance anyone else will have to go through what we experience.

    God bless

  7. Diana says:

    Hi everybody,

    I want to share my prolapse update. I hope this helps.

    I had a prolapse 2-3 10 months ago when my alb 2oz was born by Vbac. After 10 months of treatment and exercises, now I’m prolapse grade 1 mild! yeah!!! I’m not a 100% confident for running or any jumping exercises ( i’m avoiding those at this point) , but I just got my period (10 months postpartum) and because I’m planning on stop breast-feeding in a couple of months, I’m sure my muscle will recover soon so i’ll be able to start doing exercises soon.
    All this information is from Vancouver, BC, Canada.

    My routine:

    – Pelvic floor pshysio once a month. I won’t recommend Dayan at all. I paid $140/visit just to lear how to do keagels what after doing a lot of research and talking to other specialist, it’s the worse you can do postpartum because it creates more tension in the area and more stress. Dayan told me that my prolapse won’t get better but it did. A friend talked to me about Envision Physiotherapy and how Trish had treated this women with diastasis recti with amazing results.

    This is their contact. I got a lot of help from help and I really recommend them. I felt I paid $140/visit for something really helpful. Trish worked on my posture, exercises to do at home, she release muscles of my pelvic and stomach internally and externally. It has been really good!

    – Envision physiotherapy (Trish Gipson. She is on maternity leave right now but I’m sure there is another person as helpful as she is)
    http://www.envisionphysio.com/our-team/#trish

    -Osteopathy – once a month . $140/visit. Annabelle Mckenzie. She told me that she had treated prolapses in the past and she helped me with mine. It’s been great meeting her and i really saw a change after the 1st visit. She is very well know and travels around the world doing workshops.

    annabel8@earthlink.net

    – I was doing accupunture for a while but i supposed to go 2 times a week and it was getting very expensive.

    – Yoga posses: One of the most important things are this 2 links (Specifically the 1st one) that a friend of mind (she is really good at yoga) told me to do. She had a very dangerous delivery of her 2 and 1/2 years old baby. She had a prolapse 4 (outside of her vagine) and with yoga and treatments she corrected all the way back in again. I’ve been following this exercises since she told me about it: (i’m not doing the eagles very much but i do “squeeze” my pelvic floor up when I’m lifting,… I’m more aware of that now)

    Here are some links that are helpful explanations for Moola Bandha: ROOT LOCK – a lifting for your organs and pelvic region that will help you:

    http://www.youtube.com/watch?v=qgHt9y0RPGg

    ALSO – Udiana Bandha: Core lock: Helpfull too but Moola Bandha – the last exercise is the most important. Very much like Keagals.

    http://www.youtube.com/watch?v=NuPmSU4mfu4&index=6&list=PLInrIo55wXw4gyVJgQacwk2aKyAp934w-

    – ON the other my naturopath told me to have Calcium Flouride 6x (3 pallets x days) this helps your muscles to recover the strength.

    Well, this is it. I hope this information can help other women with my same condition to get better. After 10 months I can say that I feel 90% perfect! what I couldn’t have thought about it at the beginning of this year.

    I hope this helps!!

    Merry christmas!!!

  8. Lynn says:

    I just want to say to everyone, that I have had a mild prolapse bladder for over eight years now. It is not painful. At the beginning of the day when I get up the prolapse is still inside my private area. About a half hour later, gravity has pulled my prolapse down so it peaks out of my private area. Of course I don’t like the feeling but I also am not a candidate for surgery. I wouldn’t want surgery anyway because I have heard how many of those surgeries didn’t last and others that were a nightmare for some. So what I did was design something that will hold my prolapse up inside of me during the day and is very comfortable to wear. It solved my problem and now I feel like a women again. It is so nice to know that I can run, walk, dance whatever and my prolapse not fall out of myself. If you want to know more, you would have to contact me and I will explain what I did. I hope others will find a good solution too that don’t want to have surgery.

    Lynn

    • Jane Akre says:

      Lynn, your email is not available unless you publish it. As it is now, it can be seen only by me. I would like to talk further if you want… janeakre@meshnewsdesk.com

    • Ann says:

      Hi Lyne,
      I just found I have a stage 2 Bladder prolapse. You mentioned that you devised something that helped the prolapse throughout the day. Can you give me an idea of this.
      I hope I hear from you.

      Thanks
      Again Ann

      • Lynn says:

        I did reply to you Ann by the email address that was on your email to me. Let me know that you received my answer regarding my creation to help support a prolapse bladder. It works well, because I wear mine everyday. I made it for myself without even thinking about how many others it could help. It will be a reasonable cost as well, not expensive.

        Please let me know if you did get my email that I sent. Not sure if I responded to the right email.

        • Ann says:

          Hi Lyn,
          No I did not get the previous email, but I am very excited that you actually answered me so soon.
          I have been so depressed lately, as I was previously a very active person and the thought of mostly sitting around
          gives me nothing to look forward to, We were planning a trip with my spouse and I am not sure I can go now. I have
          started the physio exercises but to this point it has minimal effect. Can you please tell what kind of device or material
          you have made that helps you live a more normal life. Thank you a thousand times for you time and kindness.
          Best wishes
          Ann

          • Lynn says:

            My creation is a prolapse support garment that one would wear, it is not a device that is inserted inside or anything like that. My creation can be worn daily and it will support the prolapse to keep it from protruding out of the vagina area. Is your prolapse starting to slip outside of your private area? A stage 2 usually is not out yet but it is making its way down to the opening eventually. I am glad you started the exercises. I cannot describe exactly what my garment looks like until I launch my new web site because it is patent pending. It is so easy to wear, very comfortable and it gives me the lift I need so as not to worry anymore about falling out of myself. If you can still go to the washroom and you can still have normal bowel movements, then that is a plus. Also do remember when you lay down the prolapse actually goes back into place so having relations with you spouse should not be a problem. The main thing is that you are not in pain. I was just so frustrated I wanted to tape the opening to my private parts shut so nothing could come out. That is what lead me to create a nice garment that didn’t look clinical and can be worn by both young and older women. It is pleasing to the eye so it will not be depressing to wear. Does this sound like something you could use?

          • Lynn says:

            Forgot to also mention. Your prolapse bladder is not life threatening. You can still do things and go swimming, walking etc. Its just that if your prolapse hanging out, then my creation will keep It in so you can still enjoy your walks etc without the feeling you are losing yourself out of yourself.

            Lynn

          • Ann says:

            Hi,
            I maybe interested. I would need to see and know more about your creation later.

            Thanks
            Ann

          • Lynn says:

            I will let you know when my web site is up with all the information about it and photos as well and how to order one if someone wishes to order one. Talk to you again soon.

            Lynn

  9. Lynn says:

    Hello Jane, not sure if you get this email or not, but I noticed that you wanted me to contact you some time ago. You just have to click on http://www.prolapsedbladdersupport.com to see my Hideaway and the video. It is also on Youtube if you type in the words prolapsedbladdersupportgarment and Youtube will show you the video. I hope you get this email.

    Lynn (short for Marilyn)

    • Jane Akre says:

      Very impressive Lynn….. if you would like a greater voice, we could put an ad on Mesh news with a link to your site…. thank you!!

      • Lynn says:

        What is the fee to place an ad and a link because I am just starting out and trying to reach a larger audience? I don’t want to mislead anyone, but want them to know that I designed this Hideaway to stop my prolapse bladder from protruding out of my vagina area. I succeeded in doing that and along the way I found out after conducting the pilot testing with the ladies that my Hideaway also helped with their incontinence as well because the Hideaway accommodates a pad and the pad and the pressure of the Hideaway work together to help reduce incontinence in the ladies who were in my trial. Isn’t that great?

        Let me know what the cost is for an ad and a link? As I said I am one person trying to reach the ladies out there who are like me and cannot have surgery or wear a pessary.

        Marilyn

        • Jane Akre says:

          Lynn- call me at 904-613-2828…. Id like to talk further… thanks…

          • Lynn says:

            Hello Jane

            I am at my mothers every other day to help her with her dementia. The best time to call me would be either Monday, Wednesday and Friday after 6;00. I am in Kitchener, Ontario Canada and I am not sure where you are located. If you let me know when you are going to call me I could be here for sure to receive the call. My number is 1-519-748-6465. Thank you for your response to my product to help women with prolapse bladder. I am just starting a support group on Facebook for those ladies who are surviving a prolapse without surgery. I think we need to be more educated regarding prolapse bladder which is a silent epidemic among women. It sounds like you had quite a terrible experience yourself Jane. I look forward to speaking with you.

            Marilyn

          • Lynn says:

            Jane, I wanted to ask you a question about the mesh please. One of my ladies who heard about my prolapse support Hideaway, decided to email me about her condition. She had the mesh removed in 2007 and wanted to know if I knew anyone else who suffers the chronic pain that she does since the mesh was removed. Didn’t you have the mesh removed too? Is there anything you can tell me that I can tell her to help ease the pain. Is there any natural remedies she can take for pain or discomfort. She doesn’t want to become addicted to pain killers etc. That only works for awhile and then one needs stronger medication. Any advice you can give would be very helpful that I can pass on to her. Thanks for taking the time to read my email.

            Marilyn

      • Lynn says:

        Hi Jane

        That lady keeps posting her comments about nerve damage she suffers after mesh surgery in 2007. Are there any tips you can give me that I can tell her. She wants to know if there is anybody who has been successfully treated for nerve damage after having the mesh removed. Sounds like she has a lot to deal with regarding nerve damage. Your help or advice would be appreciated regarding this question. Thanks.

        Lynn

        • Jane Akre says:

          I wish there was an easy answer…. not being a doctor I’ve heard about implanted devices to bypass pain… I’ve heard varying reports about Dr. Hibner in Phoenix. Anyone else find relief from nerve pain?

          • Lynn says:

            I just found a doctor named Dr. Christopher Walker online in Orlando and he is a Transvaginal mesh specialist. Apparently he knows the best ways to remove the mesh and if you read his questions and answers portion, it seems like he knows exactly what he is doing. Just Google “Dr Christopher Walker Transvaginal Mesh Specialist” and read what it says. I know nothing about mesh removal or what it is like to suffer the pain. I am just trying to find relief for someone who suffers from this pain.

            Blessings to all of you who suffer this terrible pain from the mesh
            Marilyn

Leave a Comment