“It only happens once a month.”
“That’s just part of being a girl.”
“Stop being so dramatic. It’s not like you’re dying.”
This is just some of what I heard as a teenage girl and then a young woman. When I complained of painful intercourse, I had a gynecologist actually tell me that I should drink a few glasses of wine beforehand “and just lie there.”
It wasn’t until I was trying to get pregnant and not succeeding that thorough testing was done. I finally had a diagnosis for a chronic illness that I had most likely had for over a decade: endometriosis.
Endometriosis has been mischaracterized through the years as “really bad periods.” Yes, “killer cramps” and abnormal menstrual cycles are certainly part of it, but those are just two of the many symptoms. Gastrointestinal issues and chronic fatigue are examples of lesser-known symptoms of endometriosis that are often attributed to other causes. Like me, many women who have endometriosis also experience infertility, as well as additional autoimmune disorders.
If this sounds like you, know that you are far from alone. According to the Endometriosis Foundation of America, this disease affects one in every ten women. Let me say that again: One in ten. And yet, it still takes an average of three to eleven years for women to get a diagnosis of endometriosis following their first symptoms (source: National Institutes of Health; US Library of Medicine).
That’s why talking about this invisible disease is so important. As a people, we are often reluctant to discuss anything related to our reproductive systems because we grow up hearing that it’s private or we fear the whole “TMI” response. But we MUST talk about it to increase awareness.
It’s been seven years since I was diagnosed with endometriosis. Surgery, in addition to – finally! – a successful pregnancy, provided relief for a few years before it came back with a vengeance. In the past two years, I have missed more and more days of work every month due to an increasing number of flareups that keeps me in bed, curled up in the fetal position. This occurs not only during menstruation, but also during ovulation, which feels like a second excruciating period; and lesions around my bladder make urination painful, no matter where I am in my menstrual cycle.
I do my best to manage these flareups, watching how much caffeine and alcohol I consume. Both are “triggers” for me. Unfortunately, this regulation along with all the non-surgical treatments my doctor and I have tried are no match for the progression of my endometriosis. Thus, another surgery is most likely in my future.
Coming to terms with the reemergence of my symptoms has not been easy. Working with a therapist has helped me finally accept the idea of living with chronic pain and how to manage the depression that often results from it. I now see the importance of self care and rest days. This is harder, of course, for women who don’t have a flexible job or support at home. I’m fortunate to have both. Using the words “chronic illness” to describe my ailment and write about it here is incredibly uncomfortable. But talking about it is the only way we can help the 176 million women who suffer from endometriosis.
If you think you might have endometriosis, pick up the phone and talk to your doctor.
March is Endometriosis Awareness Month. The Endometriosis Foundation of America has wonderful resources to help you talk to your doctor if you think you might have this disease, how to support a loved one who has endometriosis, and ways to spread awareness. It’s time to end the silence.