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 everyday 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 176M women suffering from 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After years of trusting my doctor’s misguided treatments based on outdated practices and staying silent about a condition that impacts every.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 in my uterus.
Instead, the only thing I’m thinking about is how to make the pain stop. Followed by, “Why the fuck is no one giving this disease the attention it deserves?”
Let’s be real. If 176M 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 sure as hell wouldn’t include cutting their dicks off. 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.
So, here’s the Cliff’s notes version of my battle against endometriosis:
Following a decade of painful periods, things took a turn for the worse soon after I graduated college. In 2011, I remember leaving work mid-day with pain so severe it radiated through my pelvis, into my thighs, and down to my knee caps. Waking up on multiple occasions in my new boyfriend-now-husband’s bed, horrified to find myself covered in blood. Nearly passing out while using the bathroom. Cramps so paralyzing I’d double over while picking out vegetables in the grocery store.
In 2012, the constant pain in my hips and pelvis crept into my back. The endless ache that I now know is refered pain was so extreme I stopped running. I swapped my desk chair at work, sat with a lumbar pillow, and practiced Bikram yoga three times a week to try and find some comfort. I spent more than a year terrified I had bone cancer, while each MRI and X-ray came back negative. My doctor spent months prescribing me a cocktail of birth control, sometimes doubling up the doses.
In 2013, an ultrasound revealed I had ovarian cysts. I was 25 – not yet even engaged! – when a doctor first suggested I may lose an ovary. Sleeping became near impossible. The combination of blood loss and pain during a period made my exhaustion severe and nearly all activities – work, social, or otherwise – impossible.
Enter 2014. The pain increased and my health declined. I started having trouble with memory, difficulty writing, and a hard time articulating my thoughts. In December of that year, just six weeks before my wedding, I underwent laparoscopic surgery. My endometriosis was officially confirmed – it covered my reproductive organs, my bowels, my bladder. My adhesions were burned off. The cysts were drained.
My condition improved for three months, but by April 2015, the symptoms returned. I was incessantly urged to have kids as soon as possible, with a hysterectomy immediately following. I was 26.
I wish I could tell you things are resolved now, that my health is better, and that I’m feeling fantastic. But that’s not the case. Like many women, my endo story’s ongoing, and my status changes day by day.
8 thoughts on “I’m Sick of Staying Silent About My Endometriosis”
Wow, Kaite. Thank you for sharing your story and giving a much needed voice to this dreadful disease. Be well!
Thanks for giving the post a read and for your kind words, Jen! ❤ Hope everything's well on your end!
You have a beautiful voice. Keep writing about this and keep educating. Xo
Thank you, Allie! PS: I heard you’re expecting – congrats!!
Kaite, I applaud your courage in writing about this horrid disease and your personal struggles. While I have never had to deal with the excruciating symptoms you have to endure, I do have experience with years of infertility testing which, at the time I went through it, was relatively new. It’s something I wouldn’t wish on my worst enemy (if I have one!). It took an incredible toll on my self-esteem, my mind and most of all, my marriage. I constantly had to step around comments from ‘well-meaning’ but ignorant people who constantly wanted to know why I didn’t want to have kids. All these years later, it still leaves a hole in my heart. I pray for a positive outcome for you.
Oh Kathy, I’m so sorry that you had to endure all of that – I’ve heard how tough infertility treatments are. I know what you mean about the “well-meaning” comments from people. The ignorance only makes you feel MORE isolated in a situation that can be very lonely as it is. I wish more people understood that it’s not just about whether or not a woman/couple “wants” children – it goes so far beyond that. My hope is that the more women talk about these topics and share their experiences, the less stigma there is surrounding them. Love ❤ ❤
Thank you for sharing your story with all of us. I can said now that I have a very brave daughter-in-law. Your health will be one of my prayer. Love you
Thank you, Carmen 🙂 It’s been a tough road but I’m lucky to have a great support system.