I am 1 in 10: Endometriosis Awareness Month
Although endometriosis impacts an estimated 190 million people around the world (World Health Organization), misconceptions about the disease and a wide array of symptoms across patient populations exacerbate needless suffering.
In May 2021, I found myself being rushed to the hospital by my husband, in excruciating pain, and completely terrified. I had always had painful periods, but never required a visit to the emergency room before.
That trip to the ER was the beginning of what is now almost a year-long journey to diagnose and treat my stage 1 endometriosis and adenomyosis.
It took seeing multiple OBGYNs, two primary care physicians, a naturopath, hours of my own research and numerous diagnostics to finally get approval for the only definitive way to diagnose and treat endometriosis: laparoscopic surgery requiring three incisions in my abdomen, an outpatient procedure where they investigate, identify and remove endometrial-like tissue from areas where it isn’t supposed to be.
March is Endometriosis Awareness Month, and while my own journey to diagnosis was frustrating, scary, and costly, my timeline is much more condensed compared to others who suffer from this debilitating disease. The average diagnosis time frame is 7.5 years from the first onset of symptoms (Forbes), and looking back with my newfound knowledge of endometriosis symptoms, I was most likely experiencing symptoms as far as 3-4 years ago.
Diagnosing Endometriosis is so complex because of chronic underfunding of research, dismissal of the pain it causes, and of course systemic racism and sexism within medicine. Although laparoscopic surgical methods have improved, and the stigma of discussing menstruation continues to be reduced, many who seek answers for life-disrupting period pain are often told to focus on diet, exercise, and stress management.
But how do you exercise when you’re doubled over in pain in bed? Or when a workout causes a condition called post-exertion malaise, where even mild activity can set off pain flares and even change someone’s personality?
For years I thought the pain and host of other unpleasant symptoms I was experiencing were “normal.” I tried to power through the brain fog, pain, and fluctuations in appetite, thinking these were all mental hurdles I needed to jump through. If I could just live a “healthier lifestyle,” things would improve, right?
Unfortunately, my condition continued to degrade, and after all the hoops I jumped through due to requirements of our medical system and health insurance (yes – health insurance policies have had a say in my treatment plan), I finally received my formal diagnosis of stage 1 endometriosis via laparoscopic surgery in November 2021. It is not a cure for endometriosis, and many of those with endometriosis face multiple (sometimes annual) surgeries to remove endometrial-like tissue from their digestive system, the diaphragm, and many other organs.
If you learn just one thing about endometriosis during this awareness month, it should be that the incorrect definition of the condition continues to circulate, perpetuating myths about treatment options or missed diagnoses altogether. Here’s the distinction:
For a very long time, endometriosis has been defined as “endometrial tissue growing outside the uterus.” However, further research has shown that it is endometrial-like tissue, and is not solved by a total hysterectomy including removing ovaries. This leads to unnecessary hysterectomies for those with endometriosis and prevents those who do need hysterectomies from getting the procedure quickly because of the lack of distinction between endometriosis and other pelvic diseases.
I speak openly about this stigmatized issue because almost every time I mention it, I find out that someone I’m talking to has it, or they know someone who does, and they too struggle to receive accurate information around options for treatment.
Here are some additional resources to more about endometriosis:
- In Sixteen Years: Podcast of two individuals with endometriosis, focused on providing accurate, well-research information
- EndoFound.org: Endometriosis Foundation of America, created by Padma Lakshmi and Dr. Tamer Seckin
- Endo What?: Spreading endometriosis awareness through film and storytelling
- BBC Article “Endometriosis: Thousands share devastating impact of condition”
- Refinery29 Article “They said it was bipolar II. Now I know it was endometriosis.”