176 Million Women Have This. But It Can Take Up To 12 Years For A Diagnosis. Why?
by Marissa Pomerance
For years, any woman with persistent lower abdominal pain was dismissed; it was just PMS. It was gas. An STI. Or worse, it was in their heads. But we finally know better now—it could actually be endometriosis.
Endometriosis is an incredibly common disease, affecting an estimated 176 million women worldwide. If it feels like the prevalence of endo is on the rise, that’s because the medical community is just beginning to understand and properly diagnose it.
The truth is, women have been suffering from endometriosis for decades, but their pain has been ignored, making women believe that living in agony is normal. The good news? Experts have finally concluded that “severe period pain is not normal.” What a revelation! But if you want to know why this disease is only now beginning to receive the proper amount of attention and treatment, here are a few truly astonishing and horrifying facts about the medical community’s historic treatment of endometriosis.
But First, What Is Endometriosis?
During our child-bearing years, we shed the interior lining of the uterus (also known as menstruation), confusingly called the endometrium. If you have endometriosis, then a tissue similar to this endometrial lining grows outside the uterus and can attach to nearby organs including your ovaries, fallopian tubes, bladder, lower digestive tract, C-section scars, and laparoscopy scars.
Just like the uterine lining, this tissue can thicken, break down, and bleed during each menstrual cycle. But because the tissue is attached to other organs, and has no mechanism for exiting the body, it gets trapped, leading to cysts, irritation, inflammation, scar tissue, lesions, and massive amounts of pain.
The first glaringly obvious sign of endometriosis is extreme, even debilitating pelvic pain. And like we said—severe period pain IS NOT normal. Other symptoms include painful sex, painful bowel movements and urination, excessive bleeding, infertility, bloating, fatigue, constipation, diarrhea, and nausea.
Ok, now onto those not-so-fun facts.
“women’s pain has been dismissed for decades.”
Endometriosis Pain Has Been Dismissed As Drama and Hysterics
We don’t want to vilify doctors (I’m a hypochondriac and my doctor is my best friend), but it’s an interesting coincidence that most of us are finding out about endometriosis through prominent celebrity voices bringing it to the zeitgeist, not through traditional modes of diagnosis. We’re looking at you Lena Dunham, Padma Lakshmi, and Susan Sarandon. But why?
Because women’s pain has been dismissed for decades.
In the 2001 study, “The Girl Who Cried Pain”, Diane E. Hoffman and Anita J. Tarzian explain how women are “more likely than men to be undertreated or inappropriately diagnosed and treated for their pain.”
In one specific example, they looked at 188 patients treated at a pain clinic. The female patients “had experienced pain for a longer duration prior to being referred to the clinic than the men. In addition…women were given ‘more minor tranquilizers, antidepressants, and non-opioid analgesics than men. Men received more opioids than did women.” The study found that physicians consistently view women's (but not men's) symptoms as caused by emotional factors.
Until the 90’s, most clinical studies excluded women. Just let that sink in. Even though women could participate in clinical studies, in 1977, the FDA actually recommended excluding women of child-bearing potential in trials (even if they were on contraception, single, or had partners who had vasectomies). Failing to study women’s bodies resulted “in a lack of information about gender differences in disease prevalence, progression, and response to treatment,” and lead to a huge shortage of data on how drugs affected women’s bodies. In the 80’s, the NIH began to recognize how this mistake negatively impacted women’s overall health, but it still took until 199-fucking-3 to pass legislation that actually required including women in research sponsored by the National Institutes of Health. 1993!!
And just like other forms of pain, doctors dismissed endometriosis symptoms as myth. Endometriosis is still a relatively misunderstood disease, the symptoms are often intangible, and doctors make assumptions about what women with endometriosis look like (white, upper middle class, and *what in the actual fuck?* attractive?). Though the disease has actually been around for decades, it was barely discussed in the medical community.
So why did no one listen?
Turns out, we can chalk it up to good old-fashioned sexism. Traditionally, medical literature has portrayed women as hysterical or emotional, while men may be seen as forceful or aggressive for the same behavior.
Physicians tend to diagnose women more with psychosomatic illnesses and more complaints due to emotional factors than men. In fact, female patients suffering from chronic pain were more likely to be dismissed as excessively emotional or attention-seeking compared to their male counterparts.
Essentially, women’s pain is discounted as drama and hysterics because our culture has encouraged this perception. Even the medical and scientific communities, who are generally considered THE arbiters of cold, hard, objective fact (and we tend to agree!), are susceptible to their own humanistic biases, which can influence everything from clinical research to diagnosis and treatment.
It’s Even Worse For Women Of Color
In almost all aspects of women’s health, women of color suffer from a large healthcare gap; they die from cervical cancer at twice the rate of white women, black infants die at twice the rate of white infants, and black women are 40% more likely to die of breast cancer than white women.
An absolutely insane study of over 200 white medical students demonstrated that many doctors falsely believe that African American patients are less sensitive to pain, leading them to minimize their symptoms and make inaccurate recommendations for the treatment of their pain.
And women of color are even less likely to get a proper endometriosis diagnosis than white women. Fewer endometriosis studies have examined the condition in African American populations, and even when patients show symptoms, they’re even less likely to get a proper endometriosis diagnosis than white patients. Considering some diagnosis requires laparoscopic surgery, a procedure considered “elective” by insurance companies, a doctor must validate a patient’s claims for the procedure to be covered.
And if doctors are dismissing their patient’s pain, they are even less likely to get properly diagnosed. In fact, black women with endometriosis are often misdiagnosed with pelvic inflammatory disease, which is a sexually transmitted infection.
1 Out Of 3 Women Consulted 3-4 Physicians Before Receiving a Diagnosis
Women with endometriosis are passed around by doctors, who, instead of believing them and their stories of pain, just refer them to a specialist.
There are a nauseating number of stories of doctors telling women that their symptoms of pain were simply psychosomatic.
And this tendency to dismiss women’s pain can be time consuming and costly: financially, physically, and emotionally. The 2001 study also demonstrated that “of the chronic pain patients who were referred to a specialty pain clinic, men were more likely to have been referred by a general practitioner, and women, by a specialist. The results suggest that women experience disbelief or other obstacles at their initial encounters with health-care providers.”
Having to continually search to find a doctor that will listen delays diagnosis, leading women to rack up healthcare costs, take time off of work, and lose wages, not to mention the potentially detrimental effects years of debilitating pain have on their health.
It Can Take Up to 12 Years (!!!) To Get a Diagnosis
From the onset of symptoms to the day of a correct diagnosis, a woman can wait anywhere between 6 and 12 years.
Though the dismissal of women’s pain is the largest barrier to diagnosis, another barrier is doctors' ignorance of the disease. In the 2016 documentary Endo What?, women were largely misdiagnosed with ailments like thyroid disorder, irritable bowel syndrome, allergies, pelvic inflammatory disease, or ovarian cysts. Even when diagnostic imaging showed cysts or fibroids, many doctors failed to investigate further.
As doctors are just beginning to take women’s pain seriously, endometriosis remains a confusing, fragmented condition. Shannon Cohn, filmmaker of “Endo What,” explains the sources of misdiagnosis include “lack of awareness, gender bias, uninformed doctors, fragmented care, and the undue influence of commercial interests on health care…The system is ill-equipped to deal with [endometriosis.] The disease requires different specialties that often don’t communicate with one another.”
Unfortunately, diagnosing endometriosis also takes an insane amount of time and money. The diagnosis process can require everything from a pelvic exam, ultrasound, and MRI to laparoscopic surgery. Laparoscopic surgery is the most accurate means of diagnosis; the procedure involves a small incision in the skin and the insertion of a microscopic camera that allows the surgeon to see inside the body and examine endometriosis lesions. This is a costly procedure, and just one more thing adding to the complexity of diagnosis.
And, women tend to downplay their symptoms, further delaying diagnosis. According to Dr. Kimberly Kho, Associate Chief of Gynecology at UT Southwestern Medical Center, this dismissal of endometriosis pain begins at a young age, and can impact women’s perception of pain as they get older. “There tends to be a ‘suck it up’ mentality in which girls and teens are advised at an early age to put on baggy sweatpants, grab a heating pad, take some Pamprin, and wait out the pain,” she says. But, she explains, “As women get older, they become accustomed to minimizing their experience… So, women decide to downplay their pain and their symptoms, leading others to do so as well.”
Misdiagnosing and misunderstanding endometriosis over time can lead to dramatic outcomes. Dr. Kho acknowledges that unrecognized and undiagnosed pain isn’t simply frustrating, but it can be dangerous, leading to other conditions, including depression, infertility, or abnormal functioning of the bowels, bladder, and other organs.
Often, out of the sheer need to get rid of blinding pain, women with endometriosis will opt for a hysterectomy, a last-resort option that many experts falsely believed would cure endometriosis (along with the removal of the ovaries). However, we now know that other organs can still have estrogen-producing endometrial lesion, meaning that women will continue to suffer from pain.
It Can Lead to Serious Complications
One serious potential complication is an ovarian cyst, which grows when this rogue tissue gets into your ovaries and traps blood, also known as (we promise this is real) a “chocolate cyst.” Despite the rather whimsical and delicious (also possibly a bit sexist?) name, chocolate cysts are actually pretty disgusting. They’re non-cancerous, but filled with old menstrual blood and tissues, giving them a brown, tar-like appearance that apparently looks like melted chocolate. Now that this beautiful image is seared into your brain, good luck ever eating another candy bar again.
Endo can also cause “adhesions,” which might fuse organs together. Fuse! Organs! Together! These adhesions are fibrous scar tissue caused by inflammation; when this scar tissue comes into contact with another inflamed area, it forms a band of scar tissue (an adhesion), between these two areas. Such adhesions can bind an ovary to the side of pelvic wall, or the bladder to the uterus. In extremely rare cases, this can cause a condition called “frozen pelvis” which, other than sounding like an absolute nightmare, will undoubtedly lead to a shit ton of pain.
Before you go down an anxiety spiral and make an emergency visit with your gyno, just remember that this is very rare and happens in only 1-5% of endometriosis cases.
Yes. I’m enraged now. So what can I do?
First, you MUST find a doctor who listens.
Which can seem pretty impossible. And no, it’s not fair that you might have to go to 3-4 doctors before finding ONE who knows what they’re doing. But since this is a newly discussed diseased rife with misunderstanding, you have to be your own advocate.
And since you’re wondering how to find a good gynecologist or specialist, SpeakEndo.com has some excellent resources.
They recommend seeking out local or national endometriosis support groups, reading online forums, and getting referrals from friends and family.
Make sure to call or email the doctor beforehand, and ask them about their understanding of endometriosis. SpeakEndo.com has also conveniently laid out helpful questions and talking points to ask a specialist beforehand. And they recommend Health Grades and ZocDoc for searching for a gynecologist.
Learn how to discuss your symptoms.
Another great resource on SpeakEndo.com (they didn’t sponsor this article, we swear!) is their guide for explaining your pain. Fill out a quick, 5-minute questionnaire about your pain and symptoms, and the site will spit out a report that details your symptoms, providing tips on how to discuss them. This report even demystifies medical terms for certain phenomena, like painful sex (known as dyspareunia), making you feel more comfortable using medical jargon.
Ask about hormonal treatments.
Though there is no cure for endometriosis, there are treatment options. Painkillers, hormonal birth control, and Gonadotropin-releasing hormone medications (GnRH) that lower estrogen levels are all less-invasive potential treatments.
However, some of these medications have drawbacks, so it’s important to know the risks. Since GnRH medications lower the amount of estrogen in the body, they can induce menopausal side effects in some women, like hot flashes, mood swings, and disturbed sleep.
Ask about Botox. Yes, really!
Dr. Pamela Stratton, an advisor at the Boston Center of Endometriosis, has found, in an ongoing study, that Botox can help ease the pain of endometriosis. Endometriosis causes knots of muscles (like the knot in your shoulder) on the pelvic floor, leading to a lot of pelvic pain. So far, her study has shown a Botox injection to the pelvic floor has helped relax muscles and ease pain in some women suffering from endometriosis.
Ask about surgical options.
The most common surgical treatment for endometriosis is laparoscopy, a minimally-invasive surgery that can diagnose endometriosis, as well as ablate or cut out painful lesions.
If the condition has spread throughout the reproductive organs, some women have chosen to get a full hysterectomy, removing the uterus, ovaries, and cervix. This last-resort treatment causes infertility and early menopause, and as previously stated, is not considered an effective treatment or cure by many medical organizations.
Form a plan, and know your next steps.
This seems obvious, but when you’re caught up in an endless cycle of doctor visits, tests, and meds, it’s easy to forget that you should understand what’s happening in your body. You might even feel so relieved when a doctor writes you a prescription, that you forgot to ask what it’s for, and why you’re taking it, and how long it will take to work, and what are the side effects?
So remember; once you’ve found a doctor and selected a treatment option, make sure you know and fully understand your plan.
Write questions down before seeing your doctor, so you won’t forget what to ask them. Ask about the next steps-- if this medication doesn’t work within the next month, what’s plan B?
Ask them to write down the treatment plan by day, week, and month. And always schedule a follow-up appointment.
So yes, everything about endometriosis—from the disease itself to the clinical studies, diagnosing, and treatment of it—is a frustrating, painful, fucked up nightmare. But there are more resources now than ever to help women deal with endometriosis. Support groups, online forums, and endometriosis organizations are popping up everyday with the sole intent of shepherding women through this difficult, painful journey. They’re proof that you’re not alone, and that you deserve to be heard.
Marissa Pomerance is the Managing Editor of The Candidly. She’s a Los Angeles native and lover of all things food, style, beauty, and wellness. You can find more of her articles here.
