Suffering in Silence: Amy Gezon Tells FDA Panel Boston Scientific Mesh Sling Devastated Her with Pain

Sep 29th, 2011 | By | Category: News, Patient Profiles

Amy Gezon

Amy Gezon is a 43-year-old mother of 3 from Salt Lake City, Utah and the wife of an emergency room doctor at the VA medical center. She studied nursing in college, graduated with  a degree in exercise sports science and is currently pursuing a masters degree in mental health counseling. Professionally she coordinated research studies for a hospital for about 15 years. Gezon testified at the September FDA expert panel on her experience with synthetic surgical mesh.

Make a Hammock

Four years ago at 6 a.m. on her way to the hospital for a hysterectomy along with cystocele and rectocele repair she said to her husband “I think I’m making the biggest mistake of my life. I don’t know why.”

Her husband said she was nervous.

A cystocele repair is done when supportive tissue between a woman’s bladder and vaginal wall weaken and stretch allowing the bladder to bulge into the vagina. A rectocele occurs when the fibrous tissue between the rectum and the vagina become weak and allows the front wall of the rectum to bulge into the vagina. Childbirth contributes to these conditions.

Gezon was told by her Ob/Gyn the mesh can be an irritation but she says she was focused on her three other surgeries. Besides, he described the procedure as making a hammock. The word “sling” was never used.

Boston Scientific Sling

Amy Gezon and daughter, Sophie

Gazen did receive synthetic mesh made by Boston Scientific mid- urethral retropubic sling placed through the vagina.

“It was a horrible hospital stay and the pain was horrific with inflammation beyond anything I can comprehend, and I have a good pain tolerance.”

Gezon took on the next six months in her own way trying to figure out how to urinate. “I found if I folded over my lap and pushed up on my left sit bone I could empty my bladder.” She had to self-catheterize. This lasted for six months post-op.

She turned to alternative healing but last summer she says she was having a lot of pain and was increasingly uncomfortable and was still retaining urine. She visited gastro-intestinal doctors and had an MRI and a colonoscopy, among other tests.

“The literature talks about chronic pain. My pubic bone throbbed. Like a tooth that needed a root canal, it was unreal how it felt.  It felt like my rectum was in my right cheek after the initial surgery.”

A round of doctors told her she had sciatica, a problematic gallbladder, pudendal nerve compression. Burning through the money, a visit to seven doctors failed to find what was going on.

But with an ongoing obstruction, a bellybutton pulled inward which she blamed on the inflammatory response to the mesh, Gezon decided she wanted the mesh out.

Get the Mesh Out

Boston Scientific sling after removal

All of this was happening at a time she was taking care of three children ranging in age from 6 to 17.  Gezon refused to take pain medications. As a result, she says she was a very “unfun” mom. Beyond that she tried to distract herself from the pain but after a succession of doctors and no answers she had given up hope. The pain was intolerable. “I was inconsolable because of the pain. They talk about chronic pain like it’s a headache. It’s like a serrated steak knife in your pelvis in addition to the toothache pain.”

The moment of truth came the night she ended up in the ER after expressing she was going to end her life.

“I didn’t want to impact my children’s lives with a mother who had committed suicide. I had an insurance policy. They would be covered financially.” Soon after she consulted with a team in France who said they could remove her mesh laparoscopically. But closer to home a doctor from Atlanta returned her call requesting consult and gave her room for optimism.

Amy was torn. Dr. Miklos uses mesh in pelvic surgeries. But he also told her he knew how to take it out.

“I did a lot of research. I had to accept that I will not agree with his position on mesh and I got it out. Immediately I was peeing again, once you go into that area there are scars but the pain was 90 percent better and the pubic bone pain resolved almost immediately.”

Hardened Plastic

The mesh had started to deteriorate. Gezon kept a couple of pieces that resemble strips of bacon. She says they feel like hardened plastic and are really rough like chicken coup wire. The surgeon found she had a giant adhesion that was attached to her abdominal wall around the belly button pulling it in and down.

Gezon attended and testified at the FDA expert panel hearings September 8, 9, 2011 and found herself reliving the pain when she heard other women describe their ongoing suffering.

“Who wants to go around and talk about this? These are not things people want to talk about. It’s just what the industry is banking on. People are not going to speak out because it’s too embarrassing to talk about.”

After Surgery

Since her surgery Gezon says she is 80-90 percent improved and relatively pain free with the exception of localized pin on the laparoscopic incision.   She feels her hip alignment was altered.

“I’ve done Rolfing and massage and alternative and other healthy stuff to get aligned. That definitely helps too.  Some of it is mechanical since everything radiates from your pelvis and how it holds your spine. “

Fortunately she has insurance while other women do not. The FDA hearings irritated her so much that she had to leave the room, especially hearing about the huge gap in post-surgery follow-up.

“I can accept that corporations are greedy but I’m struggling to understand how physicians who are charged with a duty of protecting women’s health can do this and not question the status quo. How can they sit there and know there is not sufficient long-term data and say it’s okay to proceed business as usual in light of the lack of data? As a researcher from a scientific standpoint I can’t accept it.

“It would be one thing if it was a fatal cancer and there were no options, it might be worth the risk but we’re talking about urinary incontinence!”   #

 

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22 Comments to “Suffering in Silence: Amy Gezon Tells FDA Panel Boston Scientific Mesh Sling Devastated Her with Pain”

  1. Barbra says:

    Hi there. I\’ve read some interesting considerations on your website, thanks very much for sharing with us. I think its essential wherever possible to help disseminate good information and I will be letting my friends on Facebook know about your web site.

  2. My first time here. Awesome blog and super post. Well done.

  3. Denise says:

    Amy, well written and telling it like it is. Truthful. The lack of followup and understanding by the medical community is unacceptable…. And, yes, we continue on as usual for SUI mesh because the panel “thinks” the complications are “manageable”. Once again, manageable for who? NOT the patient!

  4. Robert says:

    My mom did commit suicide two weeks ago. The pain was so bad until she waited until we all left home and as weak as she was she went in the backyard and shot herself. I am so mad until I feel like taking this vengeance into my own hands.

  5. Amy Gezon says:

    Robert, My heart goes out to you. Thank you for sharing your mothers story. Knowing how much pain I was in, I am afraid your mother was not the first and won’t be the last. Please send your mother’s story to NPR’s Rachel Zimmerman she is working on a story right now. She writes for Commonhealth WUBR. I am so sorry for your loss and your mother’s suffering. Please let her story be known. Sending thoughts of peace, light and hope from Salt Lake City, Ut

  6. Tanya Mcshane says:

    I too had the TVT and SPARC implanted on 5/17/2010. Since surgery I have had nothing but problems as described in many cases. I have even had a 1″ piece of mesh come out of me. I am sitting here reading and writing IN PAIN. I went back to both doctors that did these surgeries on me. One of them said he used my own tissues (a lie) and threw the other doc “under the bus”, Neither gave me any warnings about the risks or anything. I was totally trusting both docs, that was my first mistake. Anyway, the first GYN told me to go see the Urologists and I did on that same day, the UR doc told me to “shut your mouth” three times, would not even look at the piece and after the third “shut your mouth” I got up and walked out. Both of these so called specialists did my surgery at the same time and each of them knew what the other was doing.

    I am hurting real bad and when I went to the emergency room at a different hospital, they did not want to get involved with another docs screw up and sent me home with hemmoroid creme. Now what? I am scared because every day I hurt worse. I am in fear for my life. Can anyone recommend a good doctor to really check me out and take out this mesh? Problem is, I do not have insurance to cover the surgery. My newly hired attorney is trying to get me on temp disability but how long will that take? I could have more serious infections and complications before that could happen. Not to forget the constant pain I feel and OTC drugs are most likely destroying my liver or kidneys and are not working. I do not want narcotic pain pills because after a while they seem to worsen the symptoms instead of help them. Help, I need a PRO SE SPECIALIST!

    I am in the early stages of this nightmare, thank GOD that piece came out of me early. Damage is done but at least I know now and it is early. Other people were not as fortunate, some have died. I do not want to die. I do not want these “mesh” to be put in anyone else. I will fight until the day I leave this earth for that to happen.

  7. verna says:

    Amy, thank you so much for sharing your story, as these accounts help those of us still struggling to keep looking for answers.
    I saw the picture of the removed mesh. Was that from your procedure? And if so, do you know the measurements of what what recovered?

  8. Amy G says:

    That was from my procedure-it was larger immediately after surgery 15 cm in length- I was told mine was a sling using very little mesh. I have kept the sling in my nightstand for some bizarre reason it has shriveled up a great deal. Here is a link with my case and photos from my removal procedure- the history of symptoms is not entirely accurate but you can see the mesh immediately post http://www.meshsurgeons.com/casestudy1.php

  9. Amy G says:

    I’m uncertain as I found them through a research article written by a French team that cited them among the first surgeons to remove TVT (retropubic placed) via laparoscope. My feelings were I wanted to only undergo 1 surgery as surgery tends to beget more surgery. The visualization of the laparoscope offered advantages (in my opinion) over the cut and search tactile method.

    • mariana Griffith says:

      who took your mesh? i am in such of pain since january 3 2012 that i cannot imaging be like you 2 or 3 years. please i need help. where i go? who will take this thing out of me? please Amy who was the doctor who took your out?

  10. ilona says:

    I am located in British Columbia. Our medical system would seem a bit of a conservative approach as I am unable to locate even one Doctor to remove the mesh from my body. Does anyone know of a qualified Doctor in the British Columbia, Canada area?
    Most Grateful

    • Laila says:

      hi, I live in bc.. also vancouver island.. Have you found a dr. to remove your mesh? I am suffering terriblly, and my suregeon and gp arent taking this seriously. I have been complaing 2 weeks post op that something wasnt right.. its been 20 mos.. i am in acute pain, and still no one seems to hear me or own up to a serious problem. Did you find a dr.. and how are you coping??

  11. mariana Griffith says:

    im in the same situation like Amy .i had my mesh implant o January3 2012 only four month ago ,my mesh already is inside my vagina my pain is tremendous , i had done a second surgery to barber he mesh ,after 5 days the pain came back worst. i want the mesh out .it is possible? who can help me. do i will continue having normal sex life with my husband id the mesh is taking out? i will have incontinence again? i am scared my husband doesnt understand how much pain i have. this is horrible my life is not more a life Im 46 years old and i am scared to continue suffering of this pain and more problems with the time. somebody can tell me what i have to do,? somebody can help me?

  12. MarieAnn says:

    Amy, how many years had the sling been implanted before it was removed? Did you have an incontinence issue that needed to be addressed later after the removal? What did the doctors say regarding how hard the mesh had become? Also, what was the advantange of the laproscopic removal, I’ve been told it can’t be removed via laproscopy. How long was the recovery? Did you have an indwelling cath post-op. Sorry for all the questions. I’m so happy you are mesh free and can enjoy your family now. I’m so scared.

    • Amy G says:

      Sorry just saw your posts- I had the mesh just over 3 years when it was removed. Implanted 8/23/07 removed 11/30/2010.

      • Susan Day says:

        Hi Amy , I would love to talk with you further about this issue. Thanks to you and the youtube video I am now 5 weeks post op. Had Dr. Miklos remove the whole sling that was torchering me for 6 yrs. I had 2 prior surgeries and was only getting worse. He did a very good job and I would recommend him to other woman who need help. I too was hesitant when doing my research because they were men and they worked with the mesh. I had no insurance and it was hard to find anyone who wouldn’t charge you a small fortune just for a counsiltation . I would like to know how you are doing now. My healing is slow but sure . Like you I am into alternative healing. The antibiotic given me at the hospital was horrible and I found out after levaquin has fluoride in it. I took no pain meds but the 2 in the hospital which made me much worse off. I flew up from Florida and 2 days after surgery flew home. I am very grateful that most of this horror story is now behind me. I wish you the best of health and blessings to you. Thank you Susan Day

        • Amy G says:

          Hi Susan,

          I am glad to hear you are doing well. I am approaching my 2 year anniversary of mesh removal. I am doing quite well. Perhaps Jane can send you my direct e-mail.

          Amy

  13. Betty says:

    I am going on surgery #8. DO NOT – I REPEAT – DO NOT let them cut the tape if you are having issues. SUI mesh is just as bad – even if the FDA doesn’t concur. I have pudendal nerve damage along with vaginal pain, pubic bone pain, urinary incontinence, urethral spasms, hip pain and low back pain. Mostly good in a recliner. I ask you, who can live in a recliner?

  14. Betty says:

    I am going on surgery #8. DO NOT – I REPEAT – DO NOT let them cut the tape if you are having issues. Like Amy said – get it out in one piece. SUI mesh is just as bad – even if the FDA doesn’t concur. I have pudendal nerve damage along with vaginal pain, pubic bone pain, urinary incontinence, urethral spasms, hip pain and low back pain. I move with caution, knowing I will “pay” for it later. An outpatient procedure that tortures it’s patients. And yet it goes on . . . How convenient having a Dr. who puts it in and if “doesn’t work out” removes it. Is this double dipping? If they are removing so many, why are they still putting it in? I think $$$$ have them captivated. Ask them if they’d recommend this to their wives – find out if their wives have it – bet not. I do not at all mean to say Amy made the wrong decision going to them – she needed help and got it. We do have to put up with others who don’t agree with us when it comes to our health. Wish I knew then what I know now. Thank you Amy, well written and getting the word out. A fellow sufferer.

  15. Shauna says:

    Hi. This message is for Amy. I am not even sure if you follow these posts. I am a mesh patient and I live in Utah. I would love to ask you for some advice. Would that be okay?

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