1 In 10 Women Worldwide Suffer From Endometriosis, So Why Does It Take So Long To Get A Diagnosis?

March is Endometriosis Awareness Month. It was started in 1993 by the Endometriosis Association to bring awareness to this inflammatory condition. In endometriosis, tissue that is similar to the lining of the uterus grows outside of the uterus. Symptoms may include painful periods, irregular or heavy bleeding, digestive issues, pain with sex, and difficulty getting pregnant. While the organs most commonly affected include the ovaries, fallopian tubes and tissue lining the pelvis, endometriosis can extend to parts of the body beyond the pelvis.

It’s estimated to affect 10% of menstruating women worldwide, but health experts say the actual number may be much higher, as it can take a long time to receive a diagnosis—an average of ten years, according to Lora Liu, MD, a board-certified minimally invasive endometriosis excision specialist.

She says, “There are so many women who think their symptoms are ‘normal’ or who are being misdiagnosed with other conditions, such as IBS, SIBO, Interstitial Cystitis, and Pelvic Floor Dysfunction.” Another barrier to diagnosis, Dr. Liu explains, is that an official diagnosis of endometriosis requires a biopsy done under surgery so pathologists can look at the tissue under a microscope. Treatment removes excision of the endometriosis tissue to provide relief.

“Most of the time,” says Liu, “imaging scans are negative because endometriosis implants can be so tiny, they won’t show up. When women come to the doctor in excruciating, debilitating pain and the work-up is negative, women are told they’re fine and led to believe it’s all in their head.”

Medical Gaslighting in Women’s Health

Another common barrier to endometriosis diagnosis and treatment is medical gaslighting, which occurs when a person’s healthcare concerns are dismissed by a provider.

Nicole Jardim, a Certified Women’s Health Coach and author of Fix Your Period, says, “Medical gaslighting is so prevalent in women’s healthcare because of the persistent gender biases that exist within our healthcare model. Women’s health concerns are often not taken as seriously as men’s, and many healthcare professionals continue to believe that women are more prone to exaggeration or hysteria. Unfortunately when these healthcare professionals dismiss or minimize a patient’s symptoms or concerns, this often leads to delayed or incorrect diagnoses.”

She also points to a lack of understanding and research of women’s health issues, anatomy and physiology, leading to a significant knowledge gap. Additionally, she highlights the role of cultural stigma around menstruation in some parts of the world.

A few examples of medical gaslighting in this area, says Jardin, “may include healthcare professionals minimizing a woman’s pain or symptoms, dismissing them as ‘just hormonal’ or ‘all in their head,’ which can lead to delayed diagnosis, misdiagnosis and development of diseases that could have been avoided.”

Chelsea Leyland has been through this herself. The founder of women’s menstrual support supplement, Looni, a DJ, and endometriosis and medical cannabis activist, Leyland struggled for years.

Shortly after starting menstruating, she shares, “my periods became unmanageable. I would live in fear of my next cycle because the pain was so bad, I would be passing out and vomiting, unable to grasp a breath because it was so intense. Dreading her period even led to panic attacks, during which Leyland would struggle to breathe and find her hands locking. “I’m also epileptic, so when my hands would go into lock from hyperventilating, I would think I was going to have a seizure. It was affecting my life and mental health, as well as my productivity.”

“My gut instinct was that something was wrong,” she says, “but every time I saw my general practitioner about it, I was dismissed and met with the same sort of response, which was that this was part and parcel of being somebody that menstruated.”

It wasn’t until ten years of this that her OB-GYN mentioned endometriosis. Surgery and biopsy revealed that Leyland did, in fact, have endometriosis, but that was only the first step on her journey. “I had some relief for about six months, and then it just came back again with a vengeance.” This led her to explore treatment options and additional support options, which ultimately inspired her to help others struggling.

Finding Support

For those who suspect they may have endometriosis, Jardim encourages keeping a detailed record of symptoms, including severity and when they occur in the cycle so they can share with their healthcare provider.

“Do your own research and arrive at your appointments armed with knowledge,” says Leyland. If you struggle with speaking up, she adds, “Be your best advocate or take someone along to appointments who can advocate on your behalf.”

In addition to finding a provider who will listen to you, Liu recommends, if needed, seeking out a practitioner who specializes in endometriosis. “Women have to find a doctor who believes them, takes them seriously, and won’t just throw birth control pills at them. If women feel they have exhausted conservative management of their symptoms and go to their provider and feel they’re not being listened to, they need to find someone else, ideally someone with experience in endometriosis.” She also refers patients to online resources such as the Endometriosis Summit, the Endometriosis Foundation of America and Nancy’s Nook, an online community with information, resources, provider listings and an active Facebook group.

Leyland agrees that finding a community you feel supported by matters. After losing an ectopic pregnancy, she created a What’s App support group that became what is now the Looni Cycle Sanity group in Geneva. There are rooms dedicated to Fertility, Chronic conditions room, PMS and periods, and burning questions room, and more to help members learn more and get support.

Give Yourself A Reality Check

Dr. Liu wants women to know that they are the experts on their bodies, and it’s important to advocate for themselves. “Painful periods are not normal. Having to miss school and work because of painful periods is not normal. Having to plan your life around your period is not normal. Having to go to the ER because of the pain from your period is not normal. Painful sex is not normal.” If something doesn’t feel right, speak up and don’t be afraid to keep doing so until someone actually listens.