Today is the Endo March – where thousands of woman from all over the world march in an effort to raise awareness for endometriosis. This years US march is taking place in San Francisco and as I can not attend I’ve decided to post about it!
For the first time ever, articles about endometriosis will start appearing all over our mainstream media. There is a reason for this sudden interest in an all-too-common but much ignored disorder of the female reproductive system, and (surprise!) it has to do with a celebrity. My fellow Oberlin alum Lena Dunham was recently rushed to the hospital for severe abdominal pain caused by ruptured ovarian cysts. What caused those cysts? Endometriosis. Since then all my Facebook newsfeed I see posts from media outlets like Refinery29 and Vice about the disease, its causes and symptoms, the astounding numbers of women that suffer from it, their struggles with the pain and uncertainty. The most shocking and important statistic I’ve seen is this: one in ten people with a uterus will suffer with the disease at some point in her life, yet endometriosis is appallingly under-diagnosed. I feel for Lena and the untenable pain she’s had to endure, and I’m sending her my best wishes for a swift recovery. I also want to thank her for sharing her struggles with the public and bringing media attention it desperately needs.
I have written about my own experience with endometriosis as well as my efforts to curb the disease with a healthier more active lifestyle. In this post I want to talk about the severity of the disease, its problematic lack of diagnosis, and my own personal struggle with pain, diagnosis, surgery, recovery and treatment since my initial diagnosis last January.
***I will try my best to link all facts and figures I in this post — but bear with me, I haven’t written a research paper since 2009…
Endometriosis is a condition in which scar tissue similar to the endometrium, which in English we call the inner lining of the uterus, makes its way to the outside of the uterus, causing lesions that induce chronic inflammation and, eventually, scar tissue. “The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, and social well being.” More than 176,000,000 women – that’s one-hundred-and-seventy-six-million – worldwide currently have endometriosis. It is a chronic condition for which there is no known cure. What make the disease so difficult to diagnose is a combination of the normalization of symptoms and the need to preform exploratory laparoscopic surgery to confirm the diagnosis. Moreover, as it is often associated with women in their early to mid-twenties, teenage girls can live with the disease for years before any doctor takes their complaints seriously. In too many of these cases the disease will have progressed beyond repair.
I have always suffered from dysmenorrhea, which in English we call really, really bad period pain. For the first two days of my menstrual cycle my cramps were so unbearable I couldn’t get out of bed. By my mid twenties the pain had become so agonizing that I kept emergency Vicodin on hand just to get through those days. For years I complained. A couple of years ago I started to worry that something was seriously wrong with me. I can’t tell you how many doctors and nurses told me my pain was normal or just part of being a woman. Even women doctors told me this. But I was also incredibly lucky to find a gynecologist and a surgeon that finally took my complaints seriously, diagnosed my disease and gave me the proper treatment. One year after post-op I still struggle with pain, fatigue or anxiety (i.e. endometriosis –it’s a chronic disease) almost every day.
The first six months after my surgery I was pretty much pain free – my periods were uncomfortable, not unbearable. But by June of last year I started feeling that same sharp debilitating pain, now centered on the left side of my pelvic area. After two trips to the doctor, another to my surgeon and one expensive ultrasound, the doctors found an ovarian cyst on my left ovary, the same issue that landed Lena in the OR for emergency surgery this past week. Because my cyst was relatively small they decided to monitor it. A few weeks later it had indeed shrunk and the pain lessened. In fact, my surgeon told me the cyst was good news, a sign that I was ovulating and fertile.
I had a hard time thinking of the agony that recurred twice a month as good news. My cramps can be so debilitating that if I don’t rest the pain will continue to plague me for weeks, but the constant demands of running the restaurant don’t stop because I need to rest. Sometimes the pain is so unbearable that I have to lie in bed half the day just to feel like myself again, though in truth on those days I feel lazy, unproductive and fatigued – anything but myself. Even on my best days I feel anxious, worried that I’ll need another surgery, or worse, that I won’t be able to have children when I’m ready. That’s my most overwhelming concern – fertility. I’ve always wanted to have children, and, because I come from a long line of fertile women I never thought I’d have to worry about getting pregnant. My doctors can’t tell me anything about my fertility until I’m ready to have children. They say I most likely won’t have any issues – we caught the disease early and I’m taking all the necessary precautions to prevent a recurrence – but for now we just cannot know for sure. I am definitely not ready to have kids yet; I still have so many more places to see and things to do before I take on that responsibility. Still, I can’t help but wonder; if I wait too long, will the disease get the best of me?
I went to some excellent schools with progressive health and sex education classes. We did learn about uterine issues such as fibroids and cysts in ninth-grade health class, and I’ve always kept current on issues of women’s health. And yet I suffered for more than a decade with excruciating menstrual pain before I even considered that I could have an actual diagnosable physical issue. Any passing awareness I had of endometriosis came from conversations with my friends, not my doctors. They didn’t begin to discuss a diagnosis until I was 27. But I’m lucky compared to some of the endo horror stories I’ve read – girls as young as 19 needing full hysterectomies that leave them infertile and still in pain.
We need to spread the word. We need to educate all women and girls, doctors, healthcare workers, mothers, fathers, and teachers about endometriosis. Our healthcare providers in particular must take women’s complaints seriously. Lena Dunham and my girl crush Padma Lakshmi, who founded www.Endofund.org, are among the celebrities suffering from the disease that have begun to raise the public’s awareness and educate women about their options. Pain is not normal. It’s not just in your head. Advil won’t fix the problem. Treatment is available. Above all we need to share our stories and keep the conversation going, because if we don’t the consequences are not just painful, they’re irreversible and heartbreaking.