How Do You Diagnose Endometriosis? 7 People Share What It Took For Them To Finally Get The Attention They Needed
Almost every menstruating person has experienced some cramping during their time of the month, but imagine if your period pain was so severe that it stopped you from exercising, or going to work, or even kept you in bed for the duration of your cycle. That's what it's like to have endometriosis (aka, endo) — a disease affects your endometrial tissue and overall reproductive health. Endometrial tissue, or the endometrium, is the lining that grows inside your uterus during your cycle, and sheds when you have your period. According to the Endometriosis Foundation of America, if you have endometriosis, endometrial tissue can grow in your ovaries, fallopian tubes, and even the outer part of your uterus. This abnormal tissue growth can cause downright debilitating abdominal or pelvic pain, as well as painful intercourse, nausea, bloating, constipation or diarrhea, spotting between periods, and issues with fertility. A 2011 study estimated 11 percent of American women, or about one in ten, have endometriosis. There are no stats available about how many trans and non binary people are affected by the reproductive health issue.
Despite the fact that the disorder is fairly common, it can be complicated to diagnose someone with endometriosis. "Endometriosis is still a somewhat mysterious condition that typically involves recurrent and chronic symptoms such as painful heavy periods. Cramps and heavy flow are common enough that endometriosis isn’t usually the first thing to come to a practitioner's mind," Dr. Alyssa Dweck, a New York-based gynecologist, tells Bustle. "While patient history, physical exam and pelvic ultrasound might suggest endometriosis, a definitive diagnosis can only be made surgically. In other words, a laparoscopy — a surgical evaluation of the pelvis visually with a telescope — is the only way to be 100 percent certain of [an endometriosis] diagnosis. Diagnosis is often delayed because people are hesitant to undergo surgery."
Patients with endometriosis must often times jump through hoops to receive a diagnosis, or otherwise find that their pain is not taken seriously by doctors who aren't familiar with the reproductive health disease. Dr. Dweck explains that while she doesn't believe sexism in health care plays a role in why it can take so long to diagnose someone with endometriosis, she says, "Women are often urged to 'suck it up' when it comes to menstrual complaints, which leads to delay in diagnosis. The [cause] of endometriosis remains controversial. All of these factors lead to the 'stigma' surrounding endometriosis."
According to the Endometriosis Foundation of America, it takes an average of ten years after symptoms begin for someone to receive a diagnosis of endometriosis. "I just officially got diagnosed with endometriosis a few weeks ago, after years of trying to be taken seriously," Megan, a 24-year-old horticulturist, tells Bustle. The Endometriosis Foundation of America cites a lack of awareness and education — in both the medical community and the public — as a large factor in why many people with endometriosis go undiagnosed, or are misdiagnosed. Seven people spoke with Bustle about how they finally received their diagnosis of endometriosis, and what it's like living with the disorder.
"After a few emergency room visits due to so pelvic pain so bad I couldn’t function — regardless of how many pain medications I took — doctors still thought I was overreacting, and would usually send me home with nothing," says Megan. "I was 22 when I decided to get another opinion from a different doc. I described some of my symptoms to my new gynecologist, and she almost immediately reassured me that what I was experiencing was not normal. She did a pelvic exam, and set up appointments to get an ultrasound and blood panel. The combination of them all proved I both have both PCOS and a lot of endometrial scar tissue."
She tells Bustle, "Finally having a doctor look me in the face and tell me that my extreme pain is not normal and that I have a diagnosis and treatment options after ten years of suffering [with endometriosis] was surreal. I have been put on a Progestin therapy to halt growth of tissue and fix preexisting hormonal imbalances, the Depo-Provera shot. I still have some pain, but overall I feel better and more mentally and physically balanced than I have for years."
"I was diagnosed with endometriosis in 2015 after begging doctors for over a year of debilitating pain," explains Véronique, an architectural designer. "I was ignored, and blown off by several [medical] professionals. I only discovered endometriosis through Yahoo chat boards, where other women complained about a deep burning pain. So, I basically diagnosed myself at that point, and demanded a laparoscopy so my OB/GYN finally was able to diagnose me. It still makes my blood boil."
She adds that, "For years before [my] diagnosis, I had chronic pain that doctors told me was 'normal' — as if it’s 'normal' for a 20-year-old woman to miss entire conversations totally distracted by the pain I was, and still am experiencing."
"A friend actually had to tell me [I had endometriosis]. In junior high, I had to go home, lay on a heating pad, and knock myself out with Tylenol PM. I was taught [my period] was a 'blessing' so I could have babies one day. Nobody seemed to think anything was wrong with that," says Becca, a Re-Education Camp Director. "I had a doc even tell me having pain and cramps (how I described endometriosis back then) after sex was something he had never heard of. After I'd been diagnosed, another doctor told me that he didn't 'believe' in birth control shots. He believed in 'babies.'"
"It took me four different OB/GYNs to finally get one who would address it. Two men docs told me to go get therapy. One said I needed birth control pills. When I told him I couldn't take them because they make me physically ill, and give me horrible depression, he told me it was 'all in my head' and 'the pain wasn’t that bad,'" says Deborah, a social worker. "The bleeding so heavy that I ended up in the ER several times. I got a hysterectomy finally, after finding a woman doctor who listened."
Shaleen, a business process specialist, tells Bustle her endometriosis pain began when she was in middle school, and that by the time she was sixteen, she was receiving medical treatment for chronic migraines, back pain, and hip and leg pain. "I couldn’t understand why my belly would inflate and bloat most days," she explains.
"Finally, years later, the doctor I had been seeing at Johns Hopkins referred me to a specialist. He suggested surgery. When I woke up [from surgery], I was told that I had Stage IV Endometriosis, severe complex ovarian cysts, and adenomyosis. The endometriosis was on my uterus, ovaries, bladder, stomach, wrapped in my bowels and intestines, fused part of my colon to my abdominal wall, diaphragm, lungs, front wall of my abdomen, and liver."
"Having a diagnosis made it real. Knowing that nothing would get better made it my lifelong reality," says Shaleen.
"I always had bad periods, but when I was 19, I suddenly had a fourteen-daylong period and suffered from severe symptoms ever since," says Rosie, a student and writer. "I was of completely ignored and shoved off at first, given the bare minimum of scans and help. Once it got to the point I had to walk with a walking stick, I got a diagnostic surgery after a year."
Rosie tells Bustle, "I still had pain after being diagnosed, but they wrote the surgery up as a 'success,' and continued to ignore me. I feel lucky it only took a year to diagnose my endometriosis."
"I started having severe cramps, ovarian cysts, irregular bleeding, and pelvic pain around the age of 12. I was getting my period every one-and-a-half to two weeks," says Amira, a college student. "I was bounced around between general physicians to try and find a solution for how to manage the pain — with multiple birth controls, physical therapy, pain medication, and surgery. Doctors told me it was all in my head, that I wasn’t going to die from the pain, but I was miserable, depressed, and disabled."
She explains that in 2016, she finally found an OB/GYN who worked with her to find the right medication to manage her endometriosis, and also helped her freeze her eggs, in case the reproductive health issue affected her fertility. "My journey with my endometriosis has been one of the hardest obstacles in my life. Between pain management, the right balance of medication, working out, having an incredible support team of doctors and physical therapists, and patience and kindness for myself, I finally feel like I’m gaining back control of my life. And, I'm learning to have a more cohesive and loving relationship with my body, and my endometriosis."
Endometriosis is a chronic illness that can seriously affect one's daily wellness and overall quality of life. Through education and awareness, endometriosis may become less stigmatized, and be treated like any other disease — by medical professionals and our society as a whole.