Two weeks ago, I had two surgical procedures: a laparoscopy and a hysteroscopy. I haven't had my post-op appointment with my doctor yet. That's on Friday. However, I do know some details about what she found while she was peering at my insides.
I know she found endometriosis.
Endometriosis is one of those female diseases that mystifies doctors, and is not talked about much in public. It is a painful and debilitating disorder that occurs when tissue that lines the inside of the uterus begins to grow in places outside of the uterus. For a full definition of endometriosis and its symptoms, please go here, or a simple Google search will turn up thousands of articles.
Randomly, you will hear endometriosis tossed into the conversation when a woman is having difficulty conceiving. As in, "Ooooh, she has endometriosis! She can't get pregnant!" First of all, that isn't true. While they may need fertility help, many women with endometriosis get pregnant. Secondly, while endometriosis can affect fertility, it can also affect a lot more. It has the ability to completely alter your life, your self-esteem, your marriage, everything.
Why isn't endometriosis talked about earlier in a woman's life? Especially given the fact that more and more women are waiting until their early to mid-30's to have babies. Also given the fact that endometriosis can become worse as women age. Why aren't doctors discussing this with high school and college aged young women?
I suffered from bad cramps during my adolescent years. I can distinctly recall my mom needing to pick me up from school a few times. I sat curled in a ball in the backseat of our minivan writhing in pain. My periods were often heavy, and sometimes came twice in a 28 day cycle. Throughout the years, I relayed these symptoms to numerous doctors. Each time I was told it was a hormonal imbalance, and I should go on birth control. I was also told to physically numb myself with Advil up to two days prior to my period.
Thanks, but no thanks.
I was on and off birth control for years. I would go off of one pill because it made me feel emotionally unstable (a.k.a. psycho bitch). I would go off another pill because it made me bloated, and I was convinced it gave me UTIs. I never really found a birth control pill that fit.
Some doctors believe that birth control can actually help endometriosis and its symptoms. I wouldn't know, because none of my doctors ever talked to me about it. However, had I been told that maybe I could have this disease called endometriosis, and that maybe birth control pills could help the condition, I might have faithfully taken the pill whether or not it made me crazy, bald, or a hundred pounds overweight.
I had never researched endometriosis until I began googling my menstrual symptoms a couple of years ago. As I entered my late 20's (I'm 29 now), my periods became almost unbearable. I had heavy bleeding, pain, and weakness to the point of needing to lay in bed for fear of passing out. That is definitely not normal. It was then that I began to wonder if something was seriously wrong.
My general doctor finally noticed that I had been coming to her for like seven years with period issues. Instead of trying to force another round of birth control on me, she decided to order an ultrasound and then scared me into thinking I had cancer.
The best part of that story is that she is an internist, and had no clue what she was talking about. Yet, she successfully frightened the shit out of me and everyone that cares about me. Shortly after that, I was sent to a gynecologic oncologist who performed a D & C. That helped very little, but confirmed no cancer. Strangely, I still hadn't been told I could have endometriosis. Finally, I found an OBGYN who looked at my medical history, and suggested a laparoscopy.
Here I am today.
My main point in sharing all of the gory details is to bring home the fact that (a) you are your own best health advocate. If you don't get the answers you need, hound your doctor or find another one, and (b) endometriosis affects a lot of females from the moment you start your period until menopause.
Every young woman should know about this disease. She should know about it well before her child-bearing years. In retrospect, I wish I had known about endometriosis ten years ago. I wish I had mentioned it to my doctor. I wish I had been set up with a gynecologist or specialist at age twenty.
It isn't just about fertility. It's about quality of life! I was getting pretty good healthcare, but it wasn't good enough. I'm kinda pissed about this.
Any other endometriosis survivors out there? Know of anyone with awful periods? Maybe you should tell her about endometriosis. We need to lend our voices to this disease, and open the lines of communication about what can be done.
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