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Victim Overcomes Embarrassment to Share Transvaginal Mesh Story

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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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READER COMMENTS

Posted by

on
i have labor like pains when my bladder is full or my lower intestine is full. when i have the attacks they last for hours and usually leave me in pain the next day. hard to sit upright or stand. i have gotten to where i do not want to eat for fear of the intestine getting full. it is an exhausting pain and seems to be happening more often. colonoscopy resulted in nothing. that the lord, but really want a resolution to my pain.

Posted by

on
I had my tvt mesh fitted in 2008. I have had quite a few health issues since 2012, literally feeling exhausted aching in the lower back and pelvic pain. Relationships stopped with my husband 2 years ago......could not face the pain. I have to say I had no idea the mesh could be causing all these problems until 2 months ago I started bleeding vaginaly so I investigated the area myself as I was completely mystified by the bleeding only to feel two pieces of hard plastic plus a sore cyst! GP referred me to a consultant ( NHS took 6 weeks ).
Consultation was terrible ....
1- very painful, dr seemed annoyed with me.
2- no question of any type of ultrasound or any other test.
3- he admitted that he could feel the mesh and sore cyst.
4- just sent me away with oestrogen suppositories.
5- said the oestrogen would thicken up the tissue and cover the mesh...
I feel totally alone, annoyed and don't know where to turn next. Surely I need to have more tests etc.

Posted by

on
I had a total marlex in 2005 I had dr patrick lee in Oregon . I will say I believe I was much more fortunate than most other women who had there problems . But now unfortunately I have problems again . He was an extremely good surgeon. The only problems were related to the mesh the shrinkage and needing him to help me again. I've had some resistance with anyone else being familiar with this process. I can't have sex anymore do to pain. I aldo have autoimmune and cronic pain. If anyone else had dr. Lee or dr. Sullivan I'd love to know. They were some of the best. But the mesh is a real problem. I just want to get the right help to be better.I want my life back. I am very sick of what is going to happen to me.

Posted by

on
Does your law firm handle defective penile prosthesis cases.
Please contact me at 678 324 7833. i am getting so depressed that i can not find anyone to help me.

Posted by

on
I have had 2 TVM, enterocele & rectocele repairs,and cystocele. The rectocele is back again. My gyn says he dosn't know what to do, suggest that I see someone else.
I'm interested in the post by D.J. Porter on 8-27-2012, would like to know the name of the dr she saw in Ga. and the outcome of visit.
Would greatly appreciate your help.

Posted by

on
in 2008 I had my first major pelvic repair using sacrospinous fixation this lasted a while and came away due to the type of work I did back then. I had back pain and post operative IBS. The following surgery was 2010 where upon mesh was used to correct the pelvic floor (bowel, bladder, uterus, vaginal walls)! suffice to say since 2008 I have been on strong pain killers for back pain that has travelled the length and breadth of my left side radiating from the illaic area! upwards and downwards and now affecting my coxxyx and sacrum.
I have been told it is depression, back pain, lumbar disk disease, mechanical back pain and this event of being barely able to mobilise and work was told nerve damage. Non of the GP's have considered that the mesh may be the cause and has possible eroded!
The pain relieving medicines have not helped the problem of pain; the side effects have left me with liver problems and kidney damage!
At this present time I have pain; left sided and in the sacral coccyx area... unfortunately being in the uk this gets brushed under the carpet! The NHS IS REALLY POOR IN ITS STANDARDS AND PRACTICE!

Posted by

on
I Truly feel your pain, I had a bladder tact in 2010 and your story could be my story and it has been the worse 2 years of my life my husband and i have not been able to have intercourse in over 2 years and we have tried but it was like the worse kind of pain, I did the same as you went back to the doctor more time than i can count and yes he gave me pain pills and estro cream and nothing helped, i went had nerve blocks, pain meds, even started talking to a head doctor
and then i made the desicion to leave my town because all Doctors watch out for one another, so i went to UAB and they tried removing the mesh and she could not get it all so she then sent me to a specialist in GA and by then the damage was done i have nerve damage in my abdominal and down my right leg and still unable to enjoy my husband in that special way, so now i am getting ready for my 3rd surgery, so i wish you all the best.

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