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I'm Sick of Staying Silent About My Endometriosis

When I decided to publicly commit to writing on my personal blog, I danced around potential topics for days. The one I kept coming back to time and again — the one that was so obviously what I ought to blog about, the one my husband urged me to write on — is the one I ultimately decided I’d definitely stay away from.

I didn’t want to write about my struggles with endometriosis for a lot of reasons. For one, it’s not every day you share details about your period and lady parts with the whole wide world. Discussing those personal topics isn’t exactly encouraged in our society. What’s more — as with any chronic illness — opening up about endometriosis also means I’m opening the door to ignorant, insensitive comments and assumptions about my health, my fertility, my relationship and my body.

There’s so much stigma around talking about “women’s issues” like endometriosis that many of the 176 million women who have the disease have stayed mum. We’ve been told by both doctors and our loved ones alike that periods are supposed to hurt. That the pain is all in our heads. That we’re just being dramatic.

But biting our tongues because we’re embarrassed, ashamed or feeling whatever it is that’s fueling this silence has done nothing to advance research on the disease. In fact, keeping quiet about endometriosis is harming everyone it affects. Few gynecologists actually understand what the disease even is, let alone how to properly treat it. That’s due to a variety of factors, including that the fact that symptoms of the disease run the gamut — everything from horribly painful and heavy periods, to painful sex and infertility, to chronic constipation, extreme exhaustion, food intolerance and more. 

What’s more, the symptoms I experience may be very different from what the woman next to me with endometriosis experiences. Add to that the fact that, while her disease may be more advanced than mine, she may experience less pain and problems than I do.

To top it all off, endometriosis doesn’t show up on imaging like ultrasounds or MRIs, so doctors have to perform laparoscopic surgery to accurately diagnose the disease. There are few viable endometriosis treatments (not to be confused with cures) to begin with, so we’re often pushed toward the most extreme: hysterectomy.

After years of trusting my doctor’s misguided treatments based on outdated practices and staying silent about a condition that impacts every. single. aspect. of my life, I’m pissed off.

Here’s the thing: Shame, embarrassment or whatever it is that’s held my and so many other women’s voices hostage is the last thing on my mind when I’m writhing half naked on the floor in pain so severe I’m convinced there’s a cactus lodged up my uterus.

Instead, the only thing I’m thinking about is how to make the pain stop. Followed by, “Why the f*ck is no one giving this disease the attention it deserves?”

I believe if 176 million men were suffering from a disease that covered their reproductive organs in painful adhesions and cysts while crippling their fertility and sapping their sex lives, the treatment options wouldn’t include cutting body parts off. I believe if men were diagnosed with a disease that cost them 10 hours of productivity at work every. single. week., doctors wouldn’t suggest sterilization as the answer.

I look at it this way: If sharing my story educates even one person about endometriosis, we’re better off for it. If it helps even one woman see she’s not alone and there are doctors who can help, then I want to offer her my support.

Follow this journey on Coffee With Kaite.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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