Endometriosis Awareness Month

I hope to make entries on this blog a weekly affair, but I was overly optimistic when I put the first post live the week before our move…I actually have two more pieces on pain medication drafted, but I want to interrupt the series before March is out to mark Endometriosis Awareness Month.

My Story: Silent Suffering

Endometriosis impacts the lives of millions of women and, in turn, every person who loves those women.  In my case, I suffered from increasingly painful, heavy periods that only got worse as I entered my mid-20s.  It wasn’t simply a matter of popping a Midol…the pain was often overwhelming and made it hard to function.  Still, perhaps because of all the silence surrounding women’s health issues, I said nothing.  Gradually, the number of days each month that the pain impacted me increased until it was present the better part of the month.  Not every day was intense, but it wasn’t confined to “just” the days right before and during my period.  And the heavy flow days began adding up too.

I thought about seeking help but I didn’t.  In fact, I had an annual exam with a gyn and was ready to say something, but he never asked about my periods and I got shy (easy to feel when in such a vulnerable position!).

What finally made me speak up?  I passed out from the pain at work, sending my chair clattering, and leading to my secretary putting me in a cab and sending me to my GP.

Speaking Up and Learning About Endo

Once I spoke up, I was lucky and the docs listened.  Endo can only be diagnosed surgically so they investigated other possibilities first including via ultrasounds, a barium enema (awful!), and an upper GI series (a barium swallow).  Each time, I felt an odd mix of frustration and relief when the tests turned out negative.  I had, however, been pretty certain that endo was the culprit from the first time it was mentioned and eventually a pelvic laparoscopy (an outpatient surgery) confirmed my hunch.

There is no cure for endo – a frustrating reality given how much suffering it can cause.  Endo involves tissue that would normally be found in the uterus being located elsewhere.  This can cause pain when it responds to hormonal shifts.  While not every woman with endo has fertility trouble, but it is one of the most common causes of female infertility.  It can also cause crippling, debilitating pain and loads of lost productivity.  It is a tricky beast and the amount of tissue growth doesn’t necessarily correlate with the impact on the woman.  A woman can have small tissue growths that cause terrible pain while another woman might have quite a lot of growths and not a single symptom.

In some ways, I’m lucky.  I take continuous birth control pills meaning I go from week three in one pack to week one in another, never taking the inactive pills and never getting a period (btw, a period on the pill isn’t truly “real” anyway and there is no medical need for that week off).  For me, that has helped a lot.  Truthfully, endo also fell lower on my radar when severe back pain began to dominate my life and the pain medication (woohoo, sorta fits in the midst of my meds series!) I took for the back pain dulled the endo too.  As I’ve stopped those meds and gotten at least some relief from back pain (a whole separate story…still have some pain, still have hope I’ll improve), the endo has made itself known again.  I’ve had three surgeries to remove endo tissue and wonder when (not “if”) another will be on tap. 

Why Observe Endo Awareness Month?

What do I hope to accomplish by sharing my story?  First, I hope to make at least one other woman feel less alone.  I know that finding other endo sufferers online helped me.  Second, I want to increase awareness about endo and help fight the stigma around issues surrounding menstruation and women’s health.  Too many women suffer in silence and too few people understand how much endo can impact a woman's life and the lives of her family, friends, and colleagues.  Heck, my blogging platform doesn't even recognize the word.  Third, I want to be one more voice encouraging increased research (and funding for research) into the cause of and treatment for endometriosis.  Maybe it is just a view colored by being an endo patient, but I really believe that if men got endo there would already be a cure.  That aside, this condition is far too common and causes far too much suffering (both in terms of pain and fertility) to remain a bit of a mystery.