Endometriosis: Why Don’t We Believe Women in Pain?

Endometriosis is often referred to as an invisible disability because it can cause excruciating, disruptive pain with no visible symptoms to the outside world. Also, I imagine, because it can make someone feel like they and their struggle are invisible. For a condition that affects so many women—over 6.5 million in the US alone—it’s surprising how little we hear about it getting attention, research, or funding. Public invisibility of endometriosis in the broader healthcare community also leads to personal invisibility for the people who have it, and many women suffer in silence due to shame or discomfort. A perfect example--I didn’t find out that my mom had endometriosis until I mentioned that I was writing this blog.

Do a quick search on Google or the social media platform of your choice, and you’ll find no shortage of women supporting each other and sharing their experiences of living with the condition: how it has impacted their work and personal lives, their (often difficult ) journeys towards finding the right care, and the treatment options that eventually worked for them. Given how prevalent endometriosis is, the number of these stories isn’t surprising. However, the common themes of frustration, shame, invalidation, and denial are present in so many of these accounts reveal a major problem in the way we think about and treat endometriosis.

So what is endometriosis?

Endometriosis occurs when the tissue that forms the lining of the uterine wall, endometrium, grows outside the uterus—typically in other parts of the pelvic region like the ovaries, fallopian tubes, or bladder. During a typical menstrual cycle, the endometrium is shed from the uterus and it exits the body—this is the blood we see during our periods. For people with endometriosis, the endometrial tissue they have is outside the uterus attempts to do the same, shedding and bleeding like it would during a normal period, but with nowhere to go. This irritates the area where it is trapped, causing inflammation and pain that can be extreme and chronic. Other symptoms that can occur are nausea and vomiting, fertility problems, painful sex, bladder and bowel problems, chronic fatigue, and depression.

By the numbers

  • It’s estimated that about 1 in 10 reproductive-aged women have endometriosis—that’s about 176 million women worldwide!

  • Up to 50% of infertile women are affected by endometriosis.

  • It takes an average of 7.5 years after the first symptoms to be diagnosed.

  • The total cost of endometriosis in the US is $80.4 billion per year, including costs to patients, the healthcare system, and the economic impact of women forced to leave the workforce.

  • However, less than $1 a year is spent in research per each American woman suffering from endometriosis.

Getting the correct diagnosis is half the problem

Women with endometriosis frequently report spending years suffering before ever getting the diagnosis and care that they need. Symptoms can start as soon as a first period, but it often goes undiagnosed until well into adulthood. In this collection of endometriosis stories published by The Guardian, one woman reported being consistently misdiagnosed for over 10 years, during which her symptoms steadily worsened. Her story is repeated again and again by young women who spend years of their lives invisibly suffering.  

Taking women’s pain seriously

In that same Guardian article, dozens of women reported that one of the reasons they suffered so long was that they simply weren’t believed, sharing experiences of being told by their healthcare providers that they were imagining their pain, had a low pain tolerance, or (most unbelievably) were just experiencing normal symptoms of menstruation. Sorry ladies & other menstruating folks, I guess debilitating pain is just part of the monthly cycle! These accounts seem extra prevalent in the case of endometriosis, but it’s not uncommon for women to have to work much harder to have their medical needs taken seriously, or have their complaints met with skepticism and dismissal--shocking, I know. For women who experience intersecting marginalizations--low-income women, women of color, women with disabilities, and LGBTQ+ women--this can be even harder. Transgender men and nonbinary people living with endometriosis can also have a very difficult time getting diagnosed, receiving appropriate and affirming care, and gaining access to the already limited support systems in place.

EndoHope is one of the more popular blogs, created and authored by a woman named Michelle who has lived with endometriosis for the last eight years. On this blog, she shares her own stories, and provides advice to others on treatment options, pain management, finding support systems, living with what she describes as an invisible illness, and emotional coping mechanisms. She describes EndoHope’s mission best:

"I aim to share my experiences of living and working with endometriosis to help others, and to help with my own ability to cope with the pain and fatigue. I hope to share what I have learned, to prove that there is hope for endometriosis sufferers, to show that it’s perfectly possible to live happily and successfully with this disease (and others). Crucially I also want to provide advice for the darker days when that’s easier said than done."

So here’s the takeaway: if your daughters/mothers/sisters/friends tell you they’re experiencing intense pain regularly during their cycles, believe them! Moms especially, keep an eye on your daughter; if you notice that she’s experienced disruptive pain that keeps her from the things like school, sports, or spending time with friends for more than two consecutive cycles, it’s time to check in with a healthcare provider. Endometriosis is often hereditary, so be extra watchful if you have it yourself--personally, I’m lucky that I didn’t inherit it from my mom, and also that her case was mild. While there is no known cure for endometriosis, there are lots of treatment options that make living with it much easier. The earlier someone starts treatment, the more likely it is to be successful. Let’s all listen to our own bodies and recognize when we’re in pain, and encourage other women and girls in our lives to do the same—TKTK takes your health seriously, and so should you!