Navigating through a violent Texas rainstorm in August was not how I pictured the moments leading up to my very first interview with another mesh-injured woman. Having watched my own mother struggle with this injury, I wanted to be there early, reserve the most comfortable chair for my soon-to-be new friend. Instead, I found myself pulled to the side of the road texting an apology for my tardiness. I felt I’d already let her down, as I know how difficult it is for mesh-injured women to make it out of the house or even out of bed some days. I didn’t want her waiting on me.
As I walked in 15 minutes late, I noticed a demure woman, tucked away in a corner, her outfit of black and white, perfectly matched and tidy. I next noticed her lovely, long brown hair, skillfully coiffed, and thought, “She looks so beautiful. I hope today is one of the good days for her.”
She immediately recognized the pink shirt I told her I’d be wearing, and then do you know what the first thing Barb Vance did was? She asked about me! How was I doing? No, no, no- this is all wrong. I wanted our time together to be about her, and I’m late and now we’re talking about me, and I must not be very good at this interviewing thing. In the midst of my frantic arrival, her acceptance and warm spirit was radiant, and we began getting to know one another. She was easy to talk to, gentle, forgiving . . . a mother.
We sat at one of the few available tables at Starbucks in Tyler, Texas and began to share how we had come to be sitting across from one another. Within moments, goose bumps and tears welled up for us both, and we clasped hands, “You really do understand,” we each muttered.
Barb has been living with the adverse effects of transvaginal mesh implantation for seven years now. The mother of two daughters and one son, I can empathize with her from a different point of view, as a daughter walking through this senseless, man made offense, as many of us now view it. This common bond, through the others perspective, seemed to be healing for us both. I tried hard to conceal my own wounds, because this is Barb’s story. This is Barb’s voice to be heard.
At 42 and after living with the embarrassing and sometimes debilitating symptoms of stress urinary incontinence (SUI) for seven years, Barb decided to attend a medical seminar about a revolutionary way to treat her condition. As a medical assistant, Barb was well read regarding her condition and when a co-worker gave her a marketing brochure about the educational seminar, she was eager to learn more. At a meeting room inside a local hospital in mid 2006, Barb listened intently to the urologist who would eventually perform her mesh implant and who was espousing the benefits of using synthetic polypropylene mesh to repair SUI. Alongside other speakers, the doctor answered questions and explained the procedure. Barb reflects, “I remember being at the event and them speaking about this technique as the latest and greatest. There -were at least 100 people there. Refreshments were even served.”
Within three weeks, Barb was scheduled for a surgical consult with the doctor who’d given the seminar. As a matter of convention and industry standard, pharmaceutical companies and medical device manufacturers often pay doctors a consulting fee to present seminars about new products the companies are promoting. After some urodynamic testing to qualify her as a candidate for the procedure, Barb was on the books for mesh implant for October of that same year. A hysterectomy at age 28 due to severe endometriosis coupled with a bladder suspension to fix what was then a minor problem with SUI left Barb hesitant for more surgery. But ultimately her SUI symptoms progressed to the point that she could no longer live a normal life.
Now 48, she reflects on that time, six years ago, and describes the sense of hope in the weeks leading up to her mesh implantation meant to fix the SUI, “I was newly married and had begun a career as a medical assistant. I knew I had to do something, and I didn’t want to keep dealing with this [SUI] in my new life.”
The procedure for implanting the mesh was described to Barb as an outpatient or day surgery. She was told she would leave the surgery facility the same day with the possibility of an overnight stay, depending on when she was able to urinate on her own. Having previously experienced the pain, irritation and nuisance of urinary catheters, she opted to stay the night to ensure she’d leave the hospital without one. Ultimately, she left disappointed to be dependent upon a catheter but grateful for the kindness of her friend, Laura, also a nurse, who offered to help her recover at home.
“You do learn who your real friends are when you ask if someone will insert your catheter,” Barb says through a smile that belies the sting of a past rejection. Her friend’s help was what kept her out of the ER in the days following surgery.
Recovery from the mesh implant surgery was much longer than she anticipated or expected, and as she continued to feel her surgical wounds healing at a rate typical for this type of surgery, a new symptom appeared that she describes as a chronic, unrelenting fatigue that simply would not subside. That feeling never got better, in fact, the fatigue steadily worsened. She explains a feeling of overall malaise and discomfort, but the surgery did remedy the incontinence, and for that she was thankful. Throughout the holiday season and into the beginning of 2007, she continued to decline however. The daily fatigue began to feel more like a serious case of the flu. Her doctor did a myriad of tests, but found nothing remarkable. “It hadn’t occurred to me yet that the fatigue could be related to the mesh.”
But by February 2007, Barb’s hair had started falling out; she was having heart palpitations; hot and cold sweats; and she’d discovered her thyroid levels were abnormally low.
Months and months went by, and new symptoms continued to appear. She broke out in a full-body rash and also began to have trouble with concentration, another clue that something was terribly wrong. With each disparate symptom, she scheduled an appointment with her long-time family physician, Dr. Dale Bradley. Stumped by the barrage of seemingly unrelated symptoms, Dr. Bradley kept working with her to treat each new ailment independently, but he also began researching, looking for any answer he hadn’t thought of yet. At about this time, Barb began to experience pelvic pain as dyspareunia (pain with sexual intercourse). She also began to have pain that started in her groin and shot down her left leg, something that felt like “electric shocks,” something that still takes her off-guard often.
In March of 2007, with the urging of Dr. Bradley, Barb had to take a leave of absence from work. She simply could no longer keep up with its demands. With sorrow in her voice she says, “I had so much anxiety about making a mistake when dealing with patients that I made the decision to leave a job I had for two years, a job that I loved.”
Barb says that having to quit her job was a wake-up call. Her doctor helped her apply for medical disability while together they continued to investigate the cause of her perplexing group of symptoms. In early 2008 annual blood testing revealed her white blood cell count was elevated, and she was also enduring painful nightly abdominal bloating that was not a result of her diet. Dr. Bradley ordered a colonoscopy, and the results were normal and unremarkable. Staying in close contact with her doctor, she scheduled appointments when recurrent symptoms became severe. Barb had become fearful, deeply frustrated and discouraged at the lack of answers. She began to descend into a deep depression, as she was barely able to carry out the daily demands of her pre-mesh life, and pleasurable activities were simply impossible because of her painful and unpredictable symptoms.
By April 2009, she found herself in the emergency room, unable to breathe, in severe lung and chest pain, and in-and-out of consciousness. Once stabilized, she saw the ER physician. A look of disbelief on her face, she tells me, “I’ll never forget it. He walked into my room chuckling and without looking up from my chart said, ‘I had a patient here recently who had his leg cut off by a train and he didn’t need this much pain medication.’”
Over the course of my many conversations with mesh-injured patients, it’s not uncommon that I hear of unkind and categorically abusive comments doled out toward them haphazardly. These subtle and not-so-subtle invalidations by medical professionals, who are the very people who have taken an oath to do no harm, have done an immeasurable harm to the emotional well-being of so many women in Barb’s situation. After a stay in the hospital for five days, Barb was discharged with a diagnosis of pneumonia,” the doctor claiming nothing out-of-the-ordinary in her X-rays or other imaging tests. Barb did not feel that she left with an accurate diagnosis.
However 11 days later she was back in a different emergency room with the same symptoms. This time the team of medical experts discovered two blood clots, one in each lung. Barb felt grateful to be alive and to have an answer and prognosis. She was put on blood thinners and spent 13 days in the hospital under observation until the clots were gone. Outside her long-standing relationship with her family physician, this experience was her first with a compassionate doctor who seemed to take her complaints seriously. Subsequent appointments with specialists revealed a rare autoimmune blood disorder called Antiphospholipid Antibody Syndrome (APS), a condition that causes the body to produce antibodies, which mistakenly attack phospholipids, a type of fat. When antibodies attack phospholipids, healthy cells are damaged, resulting in blood clots in the body’s arteries, veins, legs and lungs. APS is a serious, lifelong and life-threatening illness. Barb now adds to her daily routine of creams, oral medications and supplements, a regimen of anticoagulant medication to keep the disorder in check and to keep blood clots from forming again. She often credits the second ER doctor, Dr. Bradley King with saving her life adding, “I love that man. I truly believe I would not be here without him.”
Even as she felt the beginnings of a true understanding by some in the medical community, she began to experience even more symptoms including the return of SUI, which was the specific condition the mesh implant was meant to remedy. In addition, her bladder and rectum began to prolapse, a condition referred to as Pelvic Organ Prolapse (POP). These too were new symptoms, adding to the substantial and still-growing list.
With her symptoms and commensurate medical bills mounting, her marriage began to suffer under the weight of immense responsibilities. The couple’s shared life had gone from date nights and plans for their future to a dizzying pace of doctors’ visits, suffering, confusion, and misunderstandings that created an insurmountable chasm of resentment between the two.
In November of 2009, Barb decided to file for divorce, feeling guilt and a conviction that her condition was unfair to her husband. She recalls the way her husband tried to help by saying things like, “Why don’t you just go on a walk?” which only fueled her feelings of invalidation, being misunderstood, and of feeling so alone, even while married. Intimacy was physically painful due to complications from the mesh. Pain in her groin made a love life impossible to enjoy.
“I decided I’d rather just be alone. I couldn’t even give to myself anymore. I knew I couldn’t give to him.”
She reticently admits the relief she felt at no longer being responsible for loving someone or being expected to give from an emotional reservoir that was completely empty. “I didn’t want to divorce, but I didn’t know how to juggle my marriage, the needs of my children, my health condition, and my sense of responsibility in all those relationships.”
By 2010 she confided in her family physician, Dr. Bradley, that she thought there was a connection between the mesh, her rare blood disorder and possibly the other symptoms that had mysteriously presented since her mesh implantation. Barb did hours and hours of research about not only her failed SUI and newly-developed POP, but she also found many other women’s stories, which were similar to her own. She shared this research with her family doctor, and after future discussions and a few more appointments, they decided together that the mesh was related to the all these disjointed symptoms, and in fact, Dr. Bradley said, “It’s got to be the mesh, and it’s got to come out.” Unfortunately, her gynecologist felt she was too high risk for mesh explant (a surgery to attempt to remove the mesh) because of her diagnosis with APS and its concomitant danger of uncontrolled bleeding during surgery. Barb recalls, “I felt a sense of. . . Wow!! After being so misunderstood for so long, the isolation had set in, and realizing that I wasn’t alone; I wasn’t the only one; I wasn’t crazy, gave me the strength to contact Dr. Shlomo Raz” (the leading expert in the adverse effects of mesh implantation and the removal of mesh). I felt like I had been slowly losing my identity, and I read over and over again that other women felt the same way. A mixture of hope and panic in her eyes, she says, “My explant surgery is scheduled for October of this year, but the cost is overwhelming, and I pray that God will provide a way for me to go.”
Barb is considered a high-risk patient, but Dr. Raz believes the mesh explant is worth the risks her blood disorder presents. As a precaution, she will be meeting with a hematologist in the weeks leading up to her mesh explant and a hematologist will be on-site to monitor her condition during surgery. The doctors will continually test the viscosity of her blood and change her medications as needed to minimize the risks.