I have always been fairly open about most things in my life, but there is one part I’ve stayed pretty tight-lipped about. My close family and friends know about my health issues, but I have never publicly shared it. I felt ashamed, felt like it was a taboo subject, I didn’t want sympathy … I have a million reasons why I’ve never talked about this before.
But now, in light of Endometriosis Awareness Month, I feel compelled to step forward and share at least a little of my story. I mean, how are we ever supposed to raise awareness if we never talk about it? If you follow me on Instagram, I’m sure you’ve picked up on this by now, but I suffer from endo.
In case you’re unfamiliar with what endometriosis is, I’ll explain it briefly. It’s what they call the condition when the lining that is supposed to be on the inside of your uterus develops on the outside. It can also develop on surrounding tissues and organs. There are varying degrees of severity, ranging from pain that is mostly contained to your menstrual cycle, to being completely debilitated 95% of the time.
For as long as I can remember, I’ve had more problems than most when it came to my time of the month. My mom also had severe pain, so I just assumed this was normal. (Yes, endo can be hereditary).
Painful periods are NOT normal. Uncomfortable cramps, yes. Those are normal. But losing days of your life every month to pain meds and heating pads, THAT is not normal.
It takes the average endo sufferer 6-10 years to be properly diagnosed. During those years, we are beaten down and made to feel like we are crazy. You see, only rare cases of endo will show up on imaging tests. So when you turn up in the ER, in crazy blinding pain, and all of your tests come back negative, you’re treated like you don’t know what you’re talking about, or like you’re a drug seeker. The words “There’s no reason you should be in this much pain” are something I have often heard. I heard them so many times that I started to think maybe it was all in my head or that this was just something to live with.
It is a scary feeling when you believe you suffer from a disease that so few health care professionals can properly diagnose. The vast majority of the profession is undereducated and just simply doesn’t understand it. I, like so many others who battle endo, have done countless hours of research. We know the disease inside and out, all of the side effects of the treatments, and what is waiting for us in our future.
Only recently have people started to talk about this more openly. Endometriosis Awareness Month is even officially recognized in some states now. There are numerous endo marches throughout the world during the month of March to raise not only awareness, but funding for research. I felt the need to share part of my story with you since it is easier to get behind a cause that you have a personal connection to.
A few statistics for you:
- 176 million women worldwide suffer from endo
- 63% of general practitioners admit to feeling uneasy about diagnosing endo
- 50% of general practitioners cannot cite the three main symptoms, even when given four to choose from
- 30 to 50% of worm with endo may be rendered infertile
- 6-10 years elapse between the onset of symptoms and diagnosis
Dancing Butterflys 