Vancouver, BCNoreen had suffered from urinary stress incontinence for many years; she says it was a problem even when she laughed, coughed or sneezed. So when her doctor said that transvaginal mesh was a new, minimally invasive procedure and highly effective, with a very rare chance of pain during intercourse, Noreen had TVT implanted. "I figured that 'rare' meant about the same chance as winning the lottery," says Noreen.
According to hundreds of transvaginal mesh complaints, including intimacy problems due to mesh erosion, Noreen's doctor wasn't well informed.
Noreen, 56, had a healthy and active lifestyle until she had the TVT implant in 2008. The procedure did improve her incontinence somewhat and recovery was quick—until June of 2011.
"I woke up in the middle of the night with a stabbing pain in my rectum," Noreen says. "The pain subsided but I started to have occasional twinges of vaginal discomfort. I didn't worry too much, thinking menopause was causing a bit of vaginal dryness and a lubricant when having intimacy with my husband was in order."
Unfortunately, Noreen had a lot to worry about. Soon, "intercourse felt like my husband had a razor blade strapped to his penis. I was very sore for a few days and the now familiar uncomfortable twinges were becoming more frequent and more painful.
"I was puzzled by the pain so I googled my symptoms and was dismayed to find out it could be the TVT mesh eroding. One night the pain was so bad, I wound up in ER—I told the doctor of my suspicions; he couldn't see any mesh erosion, but he could see the amount of pain I was in. With a prescription of Oxycontin, I was nearly pain free and had an appointment with a gynecologist.
"Dr. W prescribed an estrogen crème to thicken the vaginal walls and suggested the best course of treatment would be to trim the corner of tape that he suspected was starting to erode out of my vaginal wall but wasn't visible yet. He told me removing all the mesh would be very difficult if not impossible and it would take about three months for the estrogen to effectively thicken the vaginal walls."
To make a long story short, Noreen had to stop working—the transvaginal mesh had "crippled" her, emotionally, physically and financially. She researched mesh problems further and determined she needed a lawyer.
"A sympathetic and knowledgeable lawyer in the US referred me to a Canadian lawyer in Toronto," Noreen adds. "After consulting with the lawyer, I drove to the clinic and requested a copy of my medical records. The most they would give me at that time was the surgery report so I could determine the mesh type."
Meanwhile, Noreen wound up in ER again. This time the doctor could find no visible sign of erosion; he thought the pudendal nerve in the pelvic floor was causing the pain and put a freezing block into the nerve. It didn't help.
"Within a few days, I noticed blue linty-looking fibers in the excess estrogen cream that ended up in my panties," says Noreen. "Back online, I found out the mesh is part blue—I was sure they were TVT fibers. To see them better, I borrowed a microscope from the school where I had worked. The microscope showed the fibers with clarity. I was able to take photos of the fibers with my camera pointed into the microscope. Armed with TVT fibers taped to a blank white business card, I took the evidence to my family doctor, who referred me to Dr. V, classified as urgent.
"While waiting to see Dr. V, I was vigilant about wiping the fibers away. They prickled and itched like fiberglass pieces, and I was still finding blue fibers when wiping sore and irritated areas around my rectum. I didn't want to believe it. I even asked my poor husband to look down there with a flashlight. He couldn't see what I could feel. It felt like a boil against the pubic bone down towards my anus."
Needless to say, no sex since the mesh started eroding was making Noreen depressed—of course her husband was suffering too. And she was facing more surgery.
"I told close friends I feel like I've been castrated by the transvaginal mesh," she says. "When I'm trying hard to not feel too sorry for myself because I'm not a rare case, I'm totally pissed off to put it mildly. How can anyone put a price on no more 'comfort sex,' no more 'make-up after being mad at each other' sex, no more 'let me show you how much I love you' sex. Can anyone guarantee that revision surgery will give back this intimate part of our relationship to not only me but my husband?"
Dr. V's examination was even more depressing and worrisome.
"He said he couldn't see any erosion and refused to look at the fibers I had brought in," Noreen explains. "He said there was absolutely no way fibers could come from anywhere near my rectum, and 'just don't even touch yourself there.' I felt humiliated and started to cry. He said that if the mesh was eroding, I would have to be referred to another specialist…
"Within a few days, the burning pain under my urethra moved higher. Being suspicious of the change, I carefully cleaned myself down below, urinated in a clean pail, then filtered my urine through a paper towel. As I suspected, the fibers were now in my urine, and my fear that I had expressed to my family doctor earlier that delays in removing the mesh would compromise my urethra was realized.
"The final humiliation was to come next. It was getting harder to tell if I was passing gas or going to have a bowel movement. One day I was too far from the bathroom—I sprayed fecal matter all over the floor, my pants and shoes. I consoled myself that at least no one was around but my daughter-in-law and granddaughter who just dropped by. Embarrassed, I explained what happened to them and apologized that it was such a shitty visit. I tried to use humor but I'm crying again as I relive that day…"
Incredibly, Noreen's nightmare was about to get even worse. She was on strong painkillers, she couldn't sleep, and she was fast sinking into deep depression.
"I was taking more sleeping pills than prescribed and a full bottle of sleeping pills was looking too good," she says. "I told my husband that I was having suicidal thoughts..."
Noreen finally had the mesh removed in December 2011, but she is still finding mesh fibers and she is still in pain, albeit somewhat lessened. Her immune system has also been compromised due to the mesh; her surgeon said the first clue that something was amiss was her increased number of asthma attacks.
"No one should have to suffer like this over a defective medical device," says Noreen. "I hurt. I am a person, and I am not a rare case as doctors, the TVM manufacturers and the FDA would have you believe.
"I can live with wearing incontinence diapers if I have to; I can live without an intimate relationship with my husband, but I will never live without fear of what those migrating fibers that are still in my body might do to me in the future—I just want to live without pain. Shame on the FDA, and shame on all makers of transvaginal mesh.
"Anything you write to warn others of this defective product is more than OK with me," adds Noreen. "If my story stops one other woman from having this mesh, it would be worth any embarrassment I have over this vaginal mesh device."
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