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.
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.
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.
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."
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.”
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!” #