- Ninety percent of people with endometriosis say the pain and other symptoms they experience are disbelieved, dismissed, or ignored by others.
- In these interactions, doctors, employers, friends, and even family members are the ones often dismissing these symptoms.
- This dismissal of a person’s lived experience can be damaging to their overall mental and physical health, leading to delays in proper diagnosis.
Jennifer Cummings-Rabich’s daughter Shaylie is soon to be a teenager. While it’s an important milestone in any child’s life as they hurtle toward adulthood, Cummings-Rabich says she’s “deathly afraid” of the possibility her daughter could develop endometriosis someday.
It’s an understandable concern. According to Yale Medicine, 1 in 10 women (this generally ranges from early adolescent ages up to the early 50s) who report pelvic pain are ultimately diagnosed with the condition.
Beyond the statistics, it’s personal for Cummings-Rabich, of Queens, New York.
In her own teen years, she experienced intense pain tied to her periods, something she thought was “a totally normal cycle,” never thinking it was “anything like endometriosis.”
“I just thought my cycles were completely normal,” Cummings-Rabich told Healthline. “You go through the pain; you go through your periods and everything.”
Cummings-Rabich said she didn’t realize something was seriously wrong until she tried to get pregnant, experiencing intense bleeding that “looked like a murder scene.”
She said her doctor made sure she had a laparoscopic procedure used to diagnose endometriosis. The laparoscopy ultimately revealed endometriosis, which looks and acts like endometrial tissue. Endometriosis was present in her bowel, and she also had endometriomas, cysts within or on the ovaries.
That was March 2008, and she was 34. She was able to put an official diagnosis to her pain years after she first started experiencing it, something common for people with endometriosis.
After this initial diagnosis, she went on injectable fertility treatments and intrauterine insemination, and eventually got pregnant and gave birth to Shaylie.
But the pain didn’t stop. In fact, she said it “came back with a vengeance,” and by 2016, she was noticing “lower back pain, cramping, and eventually blood coming out of my rectum.”
She knew something was seriously wrong and said she “practically begged” her gynecologist for a hysterectomy.
Cummings-Rabich was told that would be unnecessary and that “it would cause too many problems.” Her gynecologist sent her in for testing, including a colonoscopy and a pelvic sonogram. Everything came out clear, “not even a cyst,” Cummings-Rabich recalled.
A year later, she had difficulty laying on her left side due to the presence of a large mass. She was ultimately diagnosed with stage 1C of ovarian clear cell carcinoma, a form of ovarian cancer.
“I begged her for a hysterectomy, and she said ‘it will cause too many problems,'” she said. “Well, you know something? Ovarian cancer is a big problem.”
Cummings-Rabich’s experience of not being heard by a doctor when something goes wrong because of endometriosis is, unfortunately, not rare.
Recently, the Alliance for Endometriosis released findings of a survey that showed 90 percent of people with endometriosis “are disbelieved, dismissed, or ignored by others at least monthly.”
In these interactions, healthcare professionals, employers, friends, and even family members often dismiss these symptoms.
More than 1,800 individuals shared their experiences through the survey. The results also showed that more than 60 percent of respondents said they want the validation that these symptoms aren’t “normal.”
About 62 percent said employers, friends, and family say these symptoms are a “normal part of being a woman,” while 42 percent said this dismissal comes directly from their doctors.
About 4 out of every 10 respondents said that discussions with their healthcare professionals are “not open or productive.”
For the survey, “healthcare professionals” encompasses the full scope of individuals someone who has endometriosis might encounter, from OB/GYNs, nurse practitioners, and emergency room doctors to primary care physicians and other professionals who work in these medical settings.
The survey also shows that 70 percent of respondents believe these health professionals have a limited awareness themselves of the impact of this condition. Additionally, 76 percent report they wish these medical professionals “understood the physical pain” tied to endometriosis.
Sixty-eight percent of respondents say they wish these healthcare professionals also understood how symptoms tied to endometriosis prevent them from participating in everyday life events.
Finally, 50 percent of these survey participants reported that they want to see reform. They say the presence of “more detailed education and resources about how endometriosis affects patients” could improve these interactions with doctors and medical staff.
When it comes to that high 90 percent of respondents who feel disbelieved and not taken seriously, Dr. Georgine Lamvu, PhD, CPE, chair of the IPPS Executive Board — a member organization of the Alliance for Endometriosis — told Healthline this dismissal of a person’s lived experience can be “incredibly damaging to overall mental and physical health.”
“This unfortunately common experience can lead to a 6 to 10-year delay in diagnosis,” Lamvu said. “That’s an awfully long time to continue living with the physical symptoms endometriosis can cause and no treatment or relief.”
She emphasized that “endometriosis doesn’t only have physical impacts,” pointing out that 20 to 40 percent of endometriosis are also diagnosed with a mental health condition.
“People with endo experience personal burdens that come into play as well, such as work, school, and family time that can impact overall mental health,” Lamvu said.
“Endometriosis is a condition where tissue that is like that of the endometrium(the inner lining of the uterus that’s normally shed during menstruation) starts forming outside the uterus. This material can be found in the fallopian tubes, vagina, ovaries, or even the intestine, among other areas.”
This can lead to severe pain. While the condition can present itself mildly, common symptoms include:
- extremely painful menstrual cramps
- difficulty getting pregnant
- bowel movements marked by pain
- painful sexual intercourse
- abdominal cramping
- back pain felt during menstruation
Right now, researchers don’t fully know what exactly causes this condition.
Endometriosis is most commonly reported and referred to as a condition affecting cisgender women, but it can be diagnosed in anyone with a uterus, including transgender, nonbinary, and intersex people.
When it comes to the frequency of society at large dismissing this serious condition, Lamvu explained that “the ‘normalization’ around pelvic pain has prevented many women from speaking up about their symptoms.”
Lamvu stressed that cramps, bloating, and some pain can be part of a healthy period. But severe pain, heavy menstrual bleeding, and periods that go on for more than a week are definitely not usual.
“Awareness of endometriosis has definitely increased during the last decade, but the community still faces serious challenges,” she added.
Dr. Jeannette Lager, MPH, associate director of the University of California San Francisco (UCSF) Endometriosis Center, said that she frequently hears from patients who’d seen professionals in the past and, at initial evaluation, were told: “it was in their head, just pain, everybody has pain.”
Lager, who’s also the interim division chief of minimally invasive GYN surgery and urogynecology at UCSF, said it can be hard for someone to know what questions or concerns to bring up with their doctor. This is especially true if they’re experiencing pain they can’t quite trace or explain.
“It just makes it really difficult for patients, and we know that it takes a long time to diagnose this — it can be 8 years before someone is diagnosed,” said Lager, who was not involved with the recently released survey. “It’s debilitating when it’s not managed. It’s always important to investigate further what the cause is of pain during periods.”
The fact that people with endometriosis can be made to feel invisible is why it’s important to have the stories of women like Cummings-Rabich out there. It helps show others they aren’t alone.
That applies to Diana Falzone, journalist and Endometriosis Foundation of America ambassador, who has used her public platform to spotlight her own experience with endometriosis.
“As a woman with endometriosis, I know firsthand how frustrating it is to even get a proper diagnosis,” Falzone told Healthline. “On average, it takes 7-10 years to get diagnosed with endometriosis, and that does not take into account being bounced around from doctor to doctor and even possible misdiagnosis.”
Falzone noted that invasive laparoscopy surgery is currently the only way to diagnose endometriosis. She said that, in addition to a cure, we need better treatment options and diagnostic approaches, and pointed to “major gulfs” in our healthcare system.
“Endometriosis is not bad periods,” Falzone added. “It is a whole-body chronic inflammatory illness that can attack not only the reproductive organs, but the bowel, kidneys, and lungs, to only mention a few,” she added.
Cummings-Rabich said that when she went back to that first gynecologist to reveal she had “cancer stemming from endometriosis,” she was met with “pure silence.”
She did ultimately get a hysterectomy, and said she “never felt better.” But she adds that she wishes she’d done more research on doctors who specialize in endometriosis.
“I think a lot of women are in that situation,” she said. “They cannot find a doctor who specializes in endometriosis or they don’t have the funds to pay for the services, whether it be insurance or whatnot.”
“But I think that is also a role in why so many women don’t feel that they are being heard and that they are not getting adequate healthcare,” Cummings-Rabich added.
Lager said a person has to be their own best health advocate.
When you go to a doctor’s office with concerns about pain, share the full scope of your history of that pain. Of course, she said that can be uncomfortable. Not everyone feels at ease sharing their experiences with menstrual pain.
Lager suggested entering an appointment with a goal for that visit.
“Whatever it is, share what you’ve been experiencing,” Lager said.
Lamvu said the Alliance has crafted an “action plan” that hopes to reduce the stigma tied to endometriosis and to improve the communication between professionals and the people who come to them looking for care.
She outlined the plan, which includes:
- sharing stories that illustrate the unique experiences of endometriosis with people who may not fully understand the disease and its impact
- educating healthcare professionals about the physical, emotional, social and financial impact of endometriosis using research that supports and validates different patient experiences
- working with healthcare professionals who may not be familiar with endometriosis to help them identify the signs and symptoms of endometriosis
- fostering more open and productive conversations about endometriosis
Lager said it’s important to note that pelvic pain can be multi-faceted. It can be tied to causes in addition to endometriosis. You might also have irritable bowel syndrome (IBS) and musculoskeletal pain that might require you to be referred to other kinds of professionals, from urologists to physical therapists.
“Know that each patient with endo is different — what you read on the internet may not necessarily be your story,” Lamvu added. “Endo is complex. It requires several doctor visits and long-term care. Learn to adjust your expectations to understand the endo discussion may be lengthy and not necessarily amenable to being solved in one clinic visit.”
Cummings-Rabich said 2022 will mark 5 years that she’s been cancer-free. She also happily reports she is satisfied with her current medical care, with clinicians she trusts and feels comfortable with.
“I know every woman might not be as comfortable in talking about their health, especially something as intimate as gynecological health,” Cummings-Rabich said. “But you know, I think it should be spoken outwardly. It shouldn’t have to be a big secret. I’m like an open book. Whatever you want to know about what I went through, I’m happy to share because knowledge is power.”
She said that if more women came out and spoke about endometriosis, others “wouldn’t feel so alone, especially if they don’t feel they are getting the comfort they need.”
“I’m [speaking out] for a whole lot of reasons, especially for my daughter,” Cummings-Rabich added. “I want something available to her and other women.”