What Women (and Their Doctors) Don't Talk About
November 9, 2018
A quarter of the female population is suffering from symptoms they’re too embarrassed to talk about. One doctor wants to start the conversation.
by Abby Kinsinger
When Dr. David Rahn asks his patients when their symptoms began, the answer is sometimes a couple of weeks. For some, it’s months. But most often, it’s more like five or 10 years.
What Rahn treats is probably the most common condition most people have never heard of. Although the symptoms — urinary and fecal incontinence, severe bloating or bulging, and extreme pelvic pain — affect one-quarter of the female population and are the No. 1 reason women are placed in nursing homes, they’re rarely talked about. So many women have no idea they could have pelvic organ prolapse, which is when the uterus, vagina, bladder, intestines, or rectum drop and cave into or through their vaginal canal.
These problems are nothing new. In centuries past, before surgery was an option, women were forced to get creative. They treated their own prolapse with homemade pessaries — which operated like a diaphragm, only made of pomegranates, lemons, or wine-soaked rags — to lift things up and in. Records of pelvic floor disorders date back further than 4,000 years. So why haven’t we figured out how to treat them? Why do they go unchecked and unreported for so long? Why are women still spending years suffering in silence?
These are the questions that guide Rahn, who works in the Division of Female Pelvic Medicine and Reconstructive Surgery at the University of Texas Southwestern Medical Center, as he pursues a solution to better women’s health care and improve surgical success rates. In his current study, IMPROVE — Investigation to Minimize Prolapse Recurrence of the Vagina Using Estrogen — he is testing whether vaginal estrogen supplementation could help prevent the recurrence of certain pelvic floor disorders. Applying estrogen locally is considerably safer than taking it orally and flooding the entire body with hormones (the treatment commonly given to women during menopause). It also has a higher impact on the vaginal wall.
But his larger goal is prevention, and to get there means starting a conversation about women’s health and bringing attention to a largely ignored field of medicine.
“You would think that would be well-studied, but it’s not really,” says Rahn.
While still a trainee in the lab of Dr. Ann Word, a fellow obstetrician/gynecologist at UT Southwestern, Rahn conducted a pilot study in 2008 revealing that vaginal estrogen applied for six weeks preoperatively significantly improved conditions of the pelvic floor for postmenopausal women planning surgical prolapse repair.
The results were enough to win Rahn and his team a grant from the National Institute on Aging — a division of the National Institutes of Health — to fund IMPROVE, which he hopes will yield discoveries that could revolutionize how we treat pelvic floor disorders.
But his larger goal is prevention, and to get there means starting a conversation about women’s health and bringing attention to a largely ignored field of medicine.
Relative to other medical advances we’ve made since the B.C.s, we’ve come an embarrassingly short way from plugging up the body with a pomegranate. Pessaries today are typically made from nonreactive silicone, and they still require day-to-day upkeep. Surgery is an option, but for one-third of patients who choose to have an operation, the prolapse recurs, and for half of those patients it’s bad enough to land them back under the knife. “It’s pretty disappointing,” Rahn says.
Despite the poor success rates, doctors in the U.S. perform more than 300,000 of these surgeries a year — more than twice the amount for both prostate and breast cancer surgeries.
But the epidemic remains widely unacknowledged by the medical community; and without even a basic level of awareness around the issue, women remain in the dark as to what’s happening to their bodies.
Prolapse, fecal incontinence, and urinary incontinence are uncomfortable words and sensitive topics. But that’s what eventually happens to one quarter of women.
It’s difficult to tell anyone, even your doctor, “I’m always running to the restroom.” Or, “I can’t jump on the trampoline with my kids without leaking.” Or, “I constantly feel like I’m sitting on a ball, and it’s making me self-conscious about relating to my partner.”
Prolapse, fecal incontinence, and urinary incontinence are uncomfortable words and sensitive topics. But that’s what happens to women who suffer from pelvic organ prolapse.
Rahn believes it’s on the medical community to overcome those barriers — awkwardness, social stigma, self-doubt, and a tendency to underestimate female health problems — that keep women suffering in isolation.
Consider erectile dysfunction (now rebranded to a more approachable “ED”). “This was never discussed before, right?” says Dr. Word. “Now, it’s a part of routine men’s health, and it’s not uncommon to discuss. It has cardiovascular implications, but also quality of life, and it’s not uncommon for the doctor to ask men about this. I’m not sure that’s the case for women in similarly uncomfortable issues.”
Studies show that years after giving birth, women have a near crystal-clear memory of seeing and touching their baby and the associated emotions. But when you ask these women about their bodies and the physical recovery process, it’s harder to recall. Not surprising. But giving birth and going through menopause are the two primary risk factors for pelvic floor disorders; and Word says that even if bodies bounce back after childbirth, our modern process of getting women out of the hospital and back to normal as soon as possible could be hugely detrimental on their urogynecological systems over time.
“If you have a heart attack, there is a ton of information known about the rehabilitation: what you can do, what you can’t do,” Word says. “But when you’ve had a baby through your vaginal canal, you are recovering physiologically from all the adaptations of pregnancy, but there’s very little scientific information as to, ‘Can I pick this up? Should I be pushing this? Should I really go back to work in a week?’ All these issues are unknown.”
There are plenty of books about giving birth, but women have few guidelines for postpartum rehabilitation. “It’s amazing to me that one of the most dramatic events on the pelvic floor goes completely ignored by both the patient and healthcare providers for that critical time,” Word says.
“We have a problem of publicity and awareness,” he says. “We need better visibility in our own general primary care world."
Rahn says that attitude is the same when it comes to regular checkups. He laments that women’s questions about their urogynecological health are often “on-your-way-out-the-door” questions — the ones they are embarrassed to ask directly. It should be the opposite. These should be regular conversations, and women need their doctors to help by asking their patients the right questions and understanding their value. “But sometimes, physicians are guilty of not asking uncomfortable questions, especially when they aren’t certain they have the best answers to reliably help the patient,” Rahn explains.
This is one reason women suffer for so long before finding Rahn. “We have a problem of publicity and awareness,” he says. “We need better visibility in our own general primary care world, for them to know that urogynecology is a subspecialty that exists.”
“This starts with medical school 101,” Word adds. “In the review of systems, you’re supposed to ask specific questions about the central nervous system, heart and lungs, digestive system, etc. But sometimes the genitourinary system falls off the radar. It should be there.”
Word says the trouble stems from a larger question: How can we prevent — or at least remove — the stigma surrounding this hidden epidemic, and in turn continue to find and promote ways to relieve patients’ symptoms?
“The nursing home is not the answer,” Word says.
And it shouldn’t take 10 years to ask the question.
