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Why I’m Worried My Endometriosis Is Coming Back

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I’m worried my endometriosis is coming back.

I had laparoscopic surgery almost two years ago by one of the more prominent endometriosis specialists in the United States. He wrote a book, so he must be good, right? And things seemed to be going fine. I mean, except for that time when I got pregnant a few months after the surgery and had a miscarriage, even though I never had a problem with fertility or pregnancy before.

I should feel lucky, though, right? I have two children who were both conceived and born before I even discovered I had endometriosis. In fact, it was after I stopped breastfeeding my second child that I noticed the pain and the symptoms coming back in full force. So I am lucky. So many women who have endometriosis aren’t able to have children at all. I consider myself one of the blessed to have fertility problems after already having kids.

But still, even without infertility, I still had issues because of my endo. That’s how I ended up on the operating table in the first place. The thing about endometriosis, though, is that it puts you in denial.

How am I supposed to know what “bad” period pain feels like? It’s not like women are able to quantify and compare each other’s menstrual cramps on some grand scale that says, “Sure, Mary’s cramps are bad, but Sally’s are endometriosis-level bad.” We simply live with our period pain as it comes and hope it goes away quickly.

Doctors, frankly, aren’t much help, either. We usually receive the gynecologist equivalent of “suck it up” when we’re told we have bad periods. After a while, we start believing that maybe things aren’t so bad or that all women experience some level of what we feel.

I went on birth control before even having sexual intercourse in an attempt to help with my heavy and frequent periods. I went on birth control post-virginity not to just, well, control birth, but to control my periods once again. Little did I know that it wasn’t just the periods causing me pain. It was the whole “tissues that should be in my womb growing where they didn’t belong” causing me pain.

After my surgery, I was told I didn’t just have endometriosis, but I also had a cyst near one of my ovaries and some enlarged varicose veins in my pelvis. There was quite a ruckus party of uninvited guests in my abdomen, which many doctors, specialists (besides this one) and even a naturopathic chiropractor couldn’t put their finger on.

So is it any wonder that endometriosis makes us second-guess ourselves? If doctors have a bugger of a time diagnosing us and then even fewer are able to actually successfully get rid of it or help us manage the endo successfully, then what’s left to encourage our confidence?

I guess only ourselves. We’re living with our body, and we know it fairly well. After years of misdiagnoses and living with the pain of endometriosis, you’d hope that we would be able to tell when it’s raging or when it’s at bay.

The problem for me, again, hides behind the face of denial.

See, I had surgery to get rid of my endometriosis! I paid a lot of money to eradicate it from my abdomen. I didn’t want it to come back!

I don’t want it to come back.

Because then, what was the point? A sort of good year or two with minimal symptoms — besides a miscarriage that so happened to throw me into a doozy of an obsessive compulsive nightmare? No, I’m not positive that super-expensive surgery was worth it in that case.

And so I’m in denial again. I convince myself, no, maybe those pains weren’t really endometriosis. Maybe they were caused by something I ate. Maybe this whole pain when I have to go to the bathroom or strange stool that I’m having isn’t a byproduct of bowel endometriosis. Maybe I have IBS. And so the questioning has begun, just as it did so many years ago when I sought for an answer to my mysterious ailments.

But I already got the answer, didn’t I? I just don’t want to believe that I’m back there again.

Welcome back, denial. (Maybe) welcome back, endometriosis.

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Lead photo by Thinkstock Images

Originally published: January 13, 2017
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