I’m a little late for Endometriosis Awareness Month (March), but if you follow my blog and especially if you get my newsletters you know that I’m more than Aware of Endometriosis. Just a little over a month ago I had my third surgery for Endometriosis (and yes they’ve removed stuff every time they’ve gone in).
Looking back I really don’t know why no one questioned the idea that I had endometriosis earlier. I mean the signs were all there. For years I’d been complaining of pain during sex, my periods were all over the board, I’d actually gone back on birth control at one point just to control them. But, I still had no idea.
My gyno had finally referred me to a pelvic pain specialist because of the pain during sex, but the concept of endometriosis had still not come up. It was my GI doctor that actually suggested it after we’d spent months chasing a lower abdominal pain that couldn’t be identified. Then when I took that idea back to my Gyno it was like a lightbulb went on over her head!
The problem is that she’s not an anomaly!
A recent survey, sponsored by Abbvie, asked the “What do you know about Endometriosis?” Here’s what it found:
- nearly half of the women surveyed had no idea that pain during sex is a symptom of Endometriosis.
- 20% of health care providers don’t even ask about pain during sex (I wasn’t asked, I complained)
- Only 29% of women correctly identified painful urination and painful bowel movements as symptoms of Endometriosis
- 60% of us rarely (if ever) speak to others about endometriosis (even though 2/3 of us know someone with endometriosis).
- 42% of those of us who have been diagnosed with Endometriosis have been told at some point that the pain we live with is “just part of being a woman.”
- 47% of those who live with Endometriosis have had their symptoms described by a health care provider as “normal.”
- About 1/4 of us wait 4 years and/or see 4 or more healthcare providers before being diagnosed (I saw at least that many).
- 86% of those who live with endometriosis say that their pain interferes with their day-to-day lives.
So, if only 70% of those of us who are diagnosed with endometriosis can even identify all the symptoms, then certainly we can’t expect that others can.
What is Endometriosis?
In the simplest terms, it’s when the endometrial tissue (the lining of the womb) that you normally shed during your period instead backs up into your body. So you end up with endometrial tissue where it shouldn’t be, throughout your body and often attaching itself to organs. This can cause major issues.
What are the symptoms of Endometriosis?
- painful periods (including severe menstrual cramps)
- Excessive bleeding during periods and bleeding between periods
- painful bowel movements, especially during periods
- painful urination
- urinary incontinence
- intestinal pain
- abdominal pain and tenderness
- pelvic and abdominal pain with exercise (this was the symptom that started me down the road that lead to an endometriosis diagnosis)
- lower back pain and even pain in the legs
So, yeah, it’s far more than just terrible periods. Sadly, many of the symptoms of Fibromyalgia are also symptoms of Endometriosis and vice-versa. My guess is that many more of us have Endometriosis and don’t even know it, we’ve just been told our painful periods, pain during sex, urinary incontinence, etc are normal. Well, they aren’t!
Do you live with the symptoms listed above? Have you been diagnosed with Endometriosis? Have you talked to your gynecologist about it?