Though each May is Pelvic Pain Awareness Month, the condition is little understood. The International Pelvic Pain Society categorizes chronic pelvic pain as a "debilitating condition that can have significant consequences on an individual’s physical, mental, economic, and social well-being." Because it's a complex condition, patients may struggle with various other symptoms, have difficulties uncovering the root cause and receive inconsistent, ineffective care.
To destigmatize pelvic pain, MedTruth spoke to two mesh survivors who share their harrowing experience with the medical device implant. Their stories are told just a month after the Food and Drug Administration ordered manufacturers to stop selling three types of transvaginal mesh intended for the repair of pelvic organ prolapse. However, other very similar types of transvaginal mesh, including the mesh inserted in these women's bodies, and other transvaginal mesh used to treat pelvic organ prolapse, remain on the market.
Read their stories to learn the truth about transvaginal mesh.
Will Life Ever Be the Same?
In the two-and-a-half years since Billie Copley had transvaginal polypropylene mesh inserted to address a relatively minor level one pelvic organ prolapse (POP), life has turned upside down for the 44-year-old West Virginia army veteran and mother to six.
“I literally just don’t go anywhere,” she said.
Copley was once a consummate take-charge type, a softball and cheerleading coach, a woman who pressure washed her home’s exterior, scrubbed the gutters, mowed the lawn and played Mom and Dad to her family when her husband was away for weeks at a time.
Twelve doctors, four post-mesh surgeries (including removal of her ovaries and portions of her colon), five binders of medical records, sixty pounds of weight gain and literally countless – sometimes excruciating – medical tests later, today Copley passes her days on the sofa watching TV. She prays for health and gives thanks for a supportive family. Despite taking opioids and trying natural remedies from celery juice to chia seeds, Copley compares her constant baseline pain level to that of passing kidney stones.
Things have become unbearable, she said, since her most recent surgery in September.
“I can’t peel potatoes without having to go sit down,” she said.
“When I get constipated I feel like I’m going to pass out,” she said. “There’s no pain medicine available that will even touch it. If I felt two and a half years ago the way I feel at this moment I would have been going to the emergency room.”
It’s been a medical road to nowhere for Copley. It wasn’t until July that she started “connecting the dots” with the mesh.
“They didn’t realize it was the mesh, I didn’t realize it was the mesh,” she said.
A professional who formerly worked in information technology and engineering, Copley was unable to start a new job following her mesh insertion. Recovery, she was promised, would take 12 weeks. It never came. Not only did Copley never recover, but over time the relatively minor issues she had prior to mesh have mushroomed into autoimmune reactions, an adrenal tumor, joint aches, a head that feels like it weighs 500 pounds, incapacitating pelvic pain, rashes, nausea and other problems.
Transvaginal mesh can cue the body to perform an immune response where weight fluctuates throughout the day. It's known as "mesh belly." / Image provided by Billie Copley.
“Not only do I have the pelvic pain, I have the mesh belly. I wake up in the morning and I could be one size. By three in the afternoon, I’m three to four sizes larger, I look nine months pregnant,” she said, describing the phenomenon as an autoimmune response to the plastic mesh.
Desperate for something to do, Copley had started a business making wreaths at home on her own schedule and when her pain levels allowed. Since her September surgery, she can no longer continue due to post-operative issues with her hands.
On Thursday, Copley scheduled her last hope on a June calendar – an intricate and risky surgery with a leading surgeon in St. Louis to remove the mesh that a prior surgeon deemed too dangerous to remove when she saw how thoroughly Copley’s mesh had adhered to her cervix and tail bone. It won’t be the first time Copley has crossed state lines for care, and it won’t be her last.
After she heals from the hopefully-successful mesh removal surgery, Copley will need to return to St. Louis for her sixth post-mesh surgery to repair and reconstruct her insides from the damage that mesh has done.
Copley is scared. The surgery isn’t even guaranteed to relieve her pain, she only hopes it can improve it. She could end up needing a urinary catheter, a colostomy bag, or both.
“Being on a bag is very humiliating to me,” she said.
But she’s most afraid of losing her femininity, her feeling of being a woman.
As someone who used to enjoy sex, Copley’s surgery puts her at risk for losing her vaginal canal, and with it, the ability to be intimate with her husband.
But for Copley, the risks are worth it.
What does she have to lose except a lifetime of sitting on the couch?
Copley’s Upsylon Y-Mesh, manufactured by Boston Scientific, remains on the market although the company was ordered to withdraw other transvaginal mesh products intended for surgical repair of pelvic organ prolapse by the FDA in April.
"I Woke Up Screaming"
Jennifer Snowden, 34, had Ethicon’s transvaginal mesh implanted during a hysterectomy to improve her quality of life after fighting cervical cancer and endometriosis. Her doctor recommended mesh as an add-on for stress urinary incontinence. Before her surgery, Snowden was an active outdoor enthusiast. / Image provided by Jennifer Snowden.
For 34-year-old Jennifer Snowden, life has been a nightmare since she had a transvaginal polypropylene mesh bladder sling inserted on March 7 as an “add-on” to a hysterectomy. The once-active Fort Worth resident loved hiking, camping, traveling and babysitting her nieces and nephews. She enjoyed the independence of working on her own as a personal assistant, home organizer and housecleaner.
Those days are over.
Snowden said she’s fortunate that she’d recently found work at staffing company focused on the construction industry. It provides her with an income beyond what she would otherwise be able to earn in the two hours a day she can work from home.
Snowden thought the hysterectomy, which was intended to address ongoing uterine issues including recurrent cervical cancer and endometriosis, would make her quality of life better.
Endometriosis was suspected as the cause of her painful intercourse, and she was looking forward to a better sex life. She was told the sling would fix her stress urinary incontinence (SUI), which is an occasional minor stress-induced bladder leakage from, for instance, laughing, coughing, jumping or running.
Although Snowden was hesitant, her doctor talked her into the sling procedure, saying it made sense to add that on while Snowden would already be under anesthesia for the hysterectomy and since her insurance was almost maxed out for the year.
Surgery, however, did not go as planned.
“I woke up literally screaming. They wound up giving me more drugs to knock me back out right away. By the time that I did wake up I was pretty much still screaming, just not as bad as before,” she said. “They tried to tell me that I had a low pain tolerance and that I was just fine.”
“I screamed for about five days. I was in the hospital and it wasn’t until about day two-and-a-half or three that they finally realized, ‘Oh, we must have messed something up,’” she said.
“It was only when they put me on steroids and nerve blockers that I was finally able to breathe when I wasn’t knocked out by painkillers.”
Thirty hours after her release, Snowden was back in the emergency room.
Jennifer Snowden, after a mesh revision surgery. She currently suffers from severe pelvic pain, in addition to a myriad of other health issues caused by the mesh implant. / Image provided by Jennifer Snowden.
Snowden hates taking medication but has resorted to a rotating cocktail of opioids, ibuprofen, nerve blockers, tranquilizers, steroids and muscle relaxants in her search for relief. Her doctor hopes a new round of steroids will help reduce the inflammation and fluid in Snowden’s pelvis.
Snowden quickly realized two different things were going on. One was an overstretch injury from improper positioning during surgery, which resulted in her severely restricted left leg mobility. The other was pelvic and groin pain.
Snowden now walks slowly with a limp and sometimes relies on a cane. She says that she can’t do even half of the things physically that she previously could. An April 9 mesh removal surgery resulted in only half of the mesh removed. While the surgeon told Snowden that he couldn’t find the rest, she said she doesn’t buy it. She suspects he realized that removing the remaining mesh would do more damage to already damaged areas in her body.
The good news is that Snowden’s partial mesh removal did improve, but not completely restore, her left leg mobility.
The bad news is that the surgery has had an overwhelmingly negative impact otherwise. Previously, Snowden had leg-involved pain, a groin pain radiating to her hip, a bruised feeling across her labia, and difficulty urinating. Now she has a chronic bruised feeling and occasional searing pain around her pelvic bone, intermittent stabbing pain in her vagina, pelvic aches and sharp pains that bring her to tears, increasing pain in her left groin, an ache in her left hip and pressure around her anus which appears to correlate with the onset of bowel problems.
Snowden hopes that a highly-recommended mesh removal surgeon in Dallas may be able to help her. However, he’s not in her insurance network. She’s willing to max out her credit cards and fundraise to have another removal surgery with him.
“I’m so depressed. It’s getting worse and worse every day,” she said. “I feel like my social life has suffered. My friends want to give me support but it’s hard for them to see me like this.”
“Going on a date just seems out of this world to me right now because I feel like I have nothing to offer someone,” she said. “I’m afraid that I’ll never have the normal life that I should have at 34 years old.”
Snowden was happy to hear about the FDA banning sales of mesh, but she then learned that the ban did not apply to hers. The recent FDA order applied only to three transvaginal mesh products intended to treat pelvic organ prolapse.
“I’m scared for women everywhere,” she said.
Snowden’s mesh is Ethicon’s GYNECARE TVT ABBREVO® Continence System. It was inserted vaginally and through an area in Snowden’s pelvis known as the obturator foramen. Ethicon is a Johnson & Johnson company and the product remains on the market.