Marian Schembari, now 28 years old, was just 15 when she first experienced the debilitating pain that would stay with her for the next decade. "It was the middle of the night and I had this horrific pain in my side, where one of my ovaries is," Schembari says. "I was just doubled over in pain, completely miserable, and my mom took me to the emergency room. They did a pelvic exam and an ultrasound."
At the time, the doctor on duty told Schembari she had an ovarian cyst that had ruptured. He advised her to start taking birth control in order to prevent it from happening again. But by the age of 18, Schembari was still experiencing stomach pain, now on a regular basis, especially during sex or when she was on her period.
It occurred to Schembari that she might have endometriosis. After all, her mother had been diagnosed with endometriosis when she was young, and the endometrium had covered her ovaries, and there was a general history of endometriosis on her mother's side of the family. "Every woman in my mother's family had uterine lady problems," Schembari says. It made perfect sense that she would have them too.
But when she approached another doctor and explained her family's medical history, she was told she was too young to have endometriosis. The doctor speculated instead that, because she was sexually active, she had a sexually transmitted disease. Though Schembari protested, the doctor wrote her a prescription for chlamydia medication. "I did what she told me," says Schembari, though she was skeptical of the doctor's diagnosis. "I was only 18."
Further testing eventually proved the doctor's diagnosis incorrect and, over the next year, when the pain failed to abate, Schembari had tests done for irritable bowel syndrome and Crohn's disease. She was prescribed a multitude of medications. None of them worked.
Finally, Schembari's doctor agreed to perform a laparoscopy, the only means of confirming an endometriosis diagnosis. "Not only did I have endometriosis," says Schembari, "but she didn't take it out. She just left it in there and sewed me back up. She said the surgery was dangerous, and that it would only grow back anyway."
According to Schembari, the scar tissue that results from endometriosis usually takes an average of 10 years to grow back. "That would have been 10 years in which I could have been pain-free," Schembari says.
But rather than perform this procedure, the doctor recommended Schembari take medication that would trigger menopause. Schembari was uncomfortable with this option. As an alternative, the doctor suggested she take birth control pills straight through in order to stop her period, which would in turn help slow the growth of endometriosis. "So that's what I did," Schembari says.
By the time she was 26, Schembari's stomach hurt all the time. Sex still hurt too. And because she was on the pill, her sex drive was low. "It felt as if all of my womanliness didn't exist," Schembari says.
So after years of arguing with her doctors, all to no avail, Schembari finally sought out a doctor who specialized in pelvic pain. This doctor had her take a pain-medicine class, do special stretches, and even participate in a full day bladder test. Only after making Schembari jump through all of these hoops did her doctor finally schedule the surgery she had requested years ago.
THE TREND TOWARD GENDER-BIASED DIAGNOSING
In 2004, Dr. Shari Munch published a paper on gender-biased diagnosing, or what she refers to as "a tendency for physicians and other health-care professionals to mislabel women's somatic complaints as non-serious and/or psychosomatic." Munch became interested in this dispiriting trend while working as a hospital social worker. During this time, she noticed that when women came into the hospital displaying symptoms of hyperemesis gravidarum (HG)—severe nausea and vomiting during pregnancy—doctors often implied that what they were experiencing might be stress-related. "It became kind of this theme," Munch says. And it was a theme she began to research. Her resulting paper recounted the long history of women doubting their own sanity, particularly when it comes to their health, and also foregrounded feminist literature that was starting to bring this problem to light.
Back in the day, however, long before researchers were even paying attention, women were often diagnosed with "hysteria," a term that referred to emotional excess, and which was generally attributed to "disturbances of the uterus." This term was used until the late 19th century to explain any manner of symptoms. Infertility, for example, was seen as indicative of a woman's ambivalence toward childbearing. And the 1972 textbook Gynecology and Obstetrics, Current Diagnosis and Treatment indicated that nausea during pregnancy was also perhaps the result of resentment and ambivalence.
By the mid to late 19th century, usage of the term “hysteria” evolved, and eventually came to connote what is now described as sexual dysfunction. It was not until 1980, though, that "hysteria" was officially removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Still, women who present with what are seen as unexplainable symptoms continue to be diagnosed with strictly psychological maladies. And this is especially prevalent with uterus-related "disturbances" and other complaints involving a woman's nether regions.
The delayed diagnosis of endometriosis, for example, was recently thrust back into the public consciousness when it served as theme in an issue of the Lena Dunham and Jenni Konner-produced Lenny Letter. Munch, meanwhile, reports that, despite improvements in diagnostics, she still sees delayed diagnoses of HG. And even true psychological difficulties that stem from that lady-specific situation known as childbirth—I'm referring to postpartum depression and postpartum hysteria—are not always taken as seriously as they should be.
And then there is the wide variety of genital pain disorders that remain difficult to diagnose. I myself jumped through my own course of hoops in search of a diagnosis for the sharp pain I experienced during intercourse. I winced my way through it for years, clenching my teeth, tensing my muscles, squeezing my thighs together. I finally told my gynecologist about it, hoping she could give me a definitive answer. I hoped she would say to me: This is what's wrong with you. This is how you fix it. But she told me she couldn't see or feel anything wrong. And though she gave me a prescription for a transabdominal ultrasound, she also suggested it was more likely a psychological issue. When the ultrasound technician also failed to find anything amiss, I was encouraged to conclude that my brain was the problem.
Up until about five years ago, this baffling approach to treatment was de rigueur when it came to diagnosing genital and pelvic pain. Traditionally, women experiencing this sort of pain first went to their doctor to rule out any physical sources. If something physical was discovered, it was understood that the pain was a physical problem. If nothing was found to be wrong physically, the diagnosis was that the pain was psychological in origin.
"The statistics show that some women go to as many as eight physicians before receiving a diagnosis," says Talli Rosenbaum, a certified sex therapist, couples therapist, and well-known expert in the treatment of genital pain disorders. Rosenbaum sees a number of possible reasons for this.
For one thing, she says, physicians "want to normalize women before pathologizing them." This movement within the sexuality field—toward a more holistic view of sexuality versus one based upon pathology—is a positive one. But when health-care professionals veer too far in one direction in fear of pathologizing their patients, they risk missing the complexity inherent in many cases. "Many practitioners still believe in the either/or model of sexual pain," Rosenbaum says. "The problem is either organic or in a woman's head. Today, we know it isn't either/or. Rather, physical, psychological, and social factors are all involved in sexual pain."
"We also know that sexual pain affects a woman's mood, her self-esteem, and her feelings of self-worth," Rosenbaum says. "We know that fear of pain results in reactive behaviors, which increase the pain. A great deal of vulnerability is required for exposing this distressful situation and, when the practitioner does not validate the woman's pain, she will doubt herself and her experience as well."
Finally, Rosenbaum says, "the most common cause of vaginal pain with intercourse in child-bearing-aged women—provoked vulvodynia—is not commonly recognized by many practitioners, and it is mostly vulvar specialists with advanced training in diagnosing and treating vulvar disease who are skilled at this."
Munch echoes the difficulties posed by this knowledge-gap. "When medicine doesn't have an etiology for a problem," she says, "sometimes we tend to default to label it psychological or psychogenic. It happens for both men and women but, for women, it seems to happen a little more frequently."
Compounding these difficulties is the fact that ailments such as vulvodynia or endometriosis do not always present with the same symptoms. "Some women [with endometriosis] have excruciating abdominal pain from the time of their first menarche," says Dr. Peter Gregersen, a geneticist, rheumatologist, and the head of the ROSE study, "whereas other women have what they perceive as 'tolerable' cramps. Many of them are told that their pain is 'normal,' either by family, friends, and/or health-care providers. Other women have no pain at all and only find out they have endometriosis when they are having trouble conceiving and undergo an infertility work-up."
And, of course, women start to doubt themselves when medical experts don't validate what they're feeling. "If you've got people who are experts in their field," says Munch, "even though women might intuitively sense that something's wrong, they're not confident in it. If you have enough people, especially health or medical experts, telling you to just eat a few crackers, or to practice coping skills, or to address the stress in your life, you start to believe on another level that maybe there is something psychologically wrong with you. Maybe you're overreacting."
Not to say that doctors alone are to blame. There is a serious disparity in research when it comes to women-specific health issues, which don’t get the same attention as health trends that affect men. "Research is needed because research leads to publications," Munch says, "which gets the word out to both professionals and patients."
Luckily, the research on these and other conditions is evolving. The ROSE study, for example—research intended to "outsmart" endometriosis—is creating a specimen bank to support its investigation of the causes of endometriosis.
Gregersen explains that researchers are trying to better understand the genetic basis of the disease, in addition to studying the epidemiology of endometriosis. "Our hope is two-fold," he says. "To develop better and less invasive ways to diagnose endometriosis ... and to develop a safe inhibitor medication to quell the growth of endometrial cells outside of the uterus."
And research is growing in others areas as well, though when new research does emerge, medical professionals may not always be aware of it. That's why continuing education is so important and, barring that, a strong referral network.
In the meantime, how can patients advocate for themselves? "As much as doctors hate it," says Schembari, "do your research. Obviously, you're not going to diagnose yourself on WebMD, but reading stories from women who've had similar experiences helps." Schembari also recommends searching information on treatments instead of blindly accepting a treatment that might put you in harm's way. "Most doctors are not experts in all of the things," she says.
Schembari also recommends actively seeking out doctors with a history of working with women and believing them. "I talked to women I knew and respected and got a recommendation for someone who specialized in women's health issues," she says.
Schembari also admits that, the older she got, the less she was willing to put up with the runaround she was receiving from doctors who weren't willing to take her concerns seriously. "Before bowing down to authority," she says, "be straightforward and ask for what you want. It takes confidence, but sometimes we get that sort of confidence if we do our research."