My Experience With Endometriosis

I started menstruating when I was 16, and ever since I can remember, along with my periods came intense back pain and nausea. My periods were highly irregular during my teenage years, but I always attributed this to my athleticism. I swam competitively for many years and I had heard before that irregular periods can be a byproduct of getting so much physical exercise, so I didn’t question this much.
My menstrual pain worsened over the years and by the time I got to college, it was excruciating and debilitating. I never experienced cramps like I’d heard other girls talk about. My pain was always focused in my lower back and hips, an intense pain that would radiate through my legs and be accompanied with unbearable nausea. I dreaded the arrival of my period every month, knowing that for two or three days I would be completely worthless. I couldn’t work or go to class; I would be confined to bed or the bathtub, crying and writhing in agony until it finally, mercifully passed.

One morning after I awoke with that familiar throbbing in my lower back, I fainted in the bathroom and smacked my head on the sink, sending me to the hospital with a concussion and a nasty gash in my forehead. At this point, my mother insisted I go the doctor. I had resisted her efforts to get me to the gynecologist in the past; I was, like many young girls, somewhat terrified of the idea of a stranger probing in between my legs and imagined all kinds of frightening instruments they might use in the process. I insisted on going to a female doctor and she was, unfortunately, not very compassionate or understanding of my situation. I felt as though she shrugged off my concerns. She didn’t even perform a pelvic exam. She just prescribed birth control pills and sent me on my way. I experienced such negative side effects that I couldn’t continue taking the pills. A common side effect of birth control is spotting, and while I was taking them I was almost constantly in pain. I couldn’t take it, and I gave up.
I suffered for another year or so, and other troubling symptoms began to appear. My menstrual flow became heavier–I would bleed through a maxi-pad or tampon in twenty to thirty minutes–and I started experiencing urinary discomfort and painful bowel movements. My mother again insisted I go to the doctor. Her colleague recommended her own OBGYN–a man. I was mortified by the idea of going to a male gynecologist, but I am happy to report that he is an extremely kind, compassionate, and understanding person. Even from my first visit I have felt completely comfortable with him. In short, he’s really great at his job.
My doctor told me that I likely had endometriosis, although the condition cannot be diagnosed with certainty without surgery. He told me about my options, which included a laparoscopic operation through which they could remove some of the endometrial growths that could be causing my pain. I went ahead with the surgery, and it turned out that I had stage IV endometriosis. I had extensive endometrial growths on my lower spine, bladder, and bowels. One of my ovaries was literally glued to my pelvic wall with growths. I had the surgery about a year ago, and it has changed my life tremendously. After I had surgery I was able to begin taking birth control without the severe side effects I experienced before. I am now able to function when I’m menstruating. It seems so simple–just having the ability to move around, to go to work and class when I’m on my period–but it feels incredible, and it’s something I didn’t have before. And although my endo was somewhat advanced, it seems hopeful that if I continue taking birth control to prevent it from re-growing, my fertility should not be compromised.
In addition, when I went to see my gynecologist about my menstrual pain, he also discovered some abnormal areas on my cervix. These abnormalities were not presenting a problem at the time, but they could have possibly done so in the future. I had these abnormal areas lasered off during my surgery. When they found these spots, my mother pointed out to me how important it is to see a gynecologist regularly. If I had continued to put off seeing a doctor out of fear or embarrassment, I might still be suffering today.
Endometriosis affects roughly 5-10% of women, but it’s also highly under-diagnosed. In my case, I thought for many years that my menstrual pain was simply part of being a woman. I accepted my excruciating and debilitating pain as normal, and this is why I want to share my experiences with other women. It isn’t normal! It seems silly now that I was so afraid of going to the doctor, but I have friends in their 20s who have still never had a pelvic exam. Every time it comes up in conversation, I urge them strongly to see a gynecologist and let them know that it isn’t nearly as bad as they might fear. And, of course, you should never write off severe pain as “normal” like I did for so long. We’re often taught that we must silently suffer the burden of womanhood, and accept our monthly “curse” with quiet dignity. No one wants to hear about that icky stuff, so we should keep it to ourselves. I know that’s how I felt, but I was so wrong, and I wish I would have spoken up sooner. Unbearable and incapacitating agony is not just “part of being a woman”!