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March is Endometriosis Awareness Month, and women’s reproductive health is top of mind. Although endometriosis affects an estimated 1 in 10 women, it remains woefully under-diagnosed, despite recent awareness raised by celebrities who suffer from the disease, including Lena Dunham, Halsey, Susan Sarandon, and Whoopi Goldberg.
Today, we find ourselves in a cultural moment that asks that we listen to women and acknowledge their pain. In light of that, we’re lifting the veil on what endometriosis is and what to do if you suspect you may have it. Later this month, we’ll share stories from actual Zocdoc patients who were able to find compassionate doctors who listened to and believed them, providing not just care, but relief and hope for the future. Considering the many misconceptions about what endometriosis is and what it isn’t, we’ll also take a look into some common myths surrounding it.
As part of our efforts to raise awareness, Zocdoc is donating $25 for every OB-GYN appointment booked on the platform from now until the end of the month to the Endometriosis Foundation of America (EndoFound), a non-profit that places particular emphasis on early diagnosis and effective intervention. If you haven’t booked your annual OB-GYN appointment yet, now may be a good time to take control of your reproductive health and support a good cause in the process. You can find more information about this partnership here.
What exactly is endometriosis?
Endometriosis develops when the endometrium, the tissue that naturally lines the uterus, starts to migrate and harm tissues outside the uterus. “It behaves like it would inside your uterus, growing and shedding. “You experience small sites of internal bleeding inside, which can cause scarring and pain,” says Dr. Shefali Patel-Shusterman, a gynecologist on Zocdoc based in Westfield, New Jersey.
The American Society for Reproductive Medicine grades endometriosis from stage 1 (mild) to stage 4 (severe), according to the size and severity of scarring lesions. While later-stage endometriosis affects fertility more than mild-stage endometriosis, focusing on this classification doesn’t make sense for everyone, according to Dr. Tamer Seckin, a New York City-based gynecologist and co-founder of EndoFound. That’s because the main symptom of endometriosis is pain, and a case of stage 1 “mild” endometriosis can still cause significant pain.
Most of the time, endometriosis affects the structures surrounding the uterus, like the fallopian tubes, ovaries, bowel and bladder. However, different cases of endometriosis can affect different organs. It can also affect the top of the vagina and the peritoneal cavity, the space between the uterus and the rectum.
Sometimes, endometriosis can migrate outside the pelvis, affecting organs including kidneys, diaphragm and appendix. How endometriosis migrates is unique from woman to woman. A few women have developed endometriosis lesions in their brain, and Lena Dunham shared her story of experiencing endometrial bleeding in her stomach.
Virtually all cases of endometriosis share a common symptom — pain
While it’s normal to struggle with menstrual cramps during your cycle, pain from endometriosis is different, explains Dr. Patel-Shusterman. “[When diagnosing endometriosis] we look for chronic pelvic pain. Pain that may be worse in the middle of your cycle, during ovulation, and during your period, but may sometimes be there throughout the month.”
And although pain is the most common symptom of endometriosis, most individual experiences with the disease are unique. Women with endometriosis might feel pain during bowel movements and notice other irregularities, like diarrhea, gas or bloating. Endometriosis can also trigger pain during intercourse, which might occur all the time or only in certain positions. Lesions in other areas of the body might cause other types of pain, like leg pain from endometriosis in the calf.
Some women might experience other symptoms from endometriosis. For instance, the scarring that can occur from endometriosis may make it more difficult to get pregnant. But not every woman with endometriosis develops scarring, and not all women with scarring struggle with fertility.
Talking to your provider about your symptoms is crucial as you work together to diagnose and manage endometriosis, so take note of how often you feel pain, how severe it is, and how it impacts your life.
How is endometriosis diagnosed?
Diagnosing endometriosis can take time, because several conditions can cause pelvic pain, explains Dr. Patel-Shusterman. “If a patient comes in and has really bad menstrual cramps, sometimes it can just be really bad menstrual cramps,” she says. “It might not be until the patient comes with more symptoms or the symptoms are not relieved by medical management [that we suspect endometriosis].”
Be specific when discussing your symptoms to help your doctor rule out more common potential causes, like menstrual cramps. If initial, doctor-suggested treatments like pain relievers and anti-inflammatories aren’t helping, your doctor may send you for additional testing. A pelvic ultrasound may detect the presence of endometrial cysts (also called chocolate cysts) on your ovaries, for example. But some cases of endometriosis are only definitively diagnosed after laparoscopic surgery—another reason that a diagnosis often takes time, explains Dr. Patel-Shusterman. Treatment itself may help with diagnosis.
How is endometriosis treated?
Dr. Patel-Shusterman often starts treatment with less invasive options that have minimal side effects, like anti-inflammatory medication, to help with the pain.
According to Dr. Patel-Shusterman, a doctor who suspects endometriosis might also suggest hormonal birth control, like birth control pills or a hormone-releasing intrauterine device (IUD), to regulate your hormone levels. Because endometriosis involves uterine tissue, it responds to hormone fluctuations that would normally occur during your menstrual cycle. Using birth control to disrupt those natural hormone variations may help with the pain.
Your doctor might also recommend other hormone treatments, like an estrogen blocker. While it’s not a long-term treatment, it may provide temporary relief. And if you respond well, it’s a signal you may have endometriosis, she explains.
Finally, your doctor might recommend surgery. Dr. Seckin’s practice performs conservative surgeries that remove endometrial lesions while sparing as much tissue as possible, but also performs definitive surgery — which removes organs, like the uterus and ovaries — for patients who need it.
I’m worried I have endometriosis. What should I do?
The first step is to talk to your gynecologist. Before you head to your appointment, think about how your symptoms affect your life. The more specific you can be, the more you’ll help your doctor figure out if it’s endometriosis.
“If a patient comes to me and says ‘My pain, when I have it (which is 20 days out of 30) is a 7 or 8 out of 10. I can’t go to school, I can’t go to work, I can’t go to the gym,’ that gives me more context of just how disruptive the pain is,” says Dr. Patel-Shusterman.
“In general, the elements of staying healthy help with endometriosis too,” says Dr. Seckin. That may mean staying active (if possible), eating a nutritious diet and getting enough sleep.
Most importantly, remember knowledge is power. The more information you can collect on your symptoms and how they affect you, the better you can advocate for yourself at the doctor’s office—and make sure your doctor truly hears you.
How can I help raise awareness?
Tell your friends! And consider amplifying stories from people with direct experience with the disease (patients, providers, non-profits, etc.) by following hashtags like #Endometriosis, #EndoAwareness, and #EndoWarriors.