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What Endometriosis Stole From Me

It’s been almost 10 years since I had my hysterectomy for endometriosis, so I’ve had some time to reflect on life before and after my surgery. While I have zero regrets about having the surgery, I do have one regret…not having it sooner. I spent way too much of my life living in debilitating pain that dictated almost every aspect of my daily life. There’s so much I lost in those years that I’ll never get back. Here are several of the things that endometriosis stole from me.

1. Being a “normal” teenager

I spent so much of my teens in agonizing pain due to my periods that it kept me from doing a lot of the things “normal” teens do, from dance team to social activities to things like going to the pool. It wasn’t just the pain…it was the humiliation of having heavy periods and not being able to tolerate wearing a tampon, so I was embarrassed to go to dance class or wear anything that was too tight or that I might accidentally bleed on. Every time I had a period I was acutely aware of everyone around me, convinced they could see the ridiculously thick maxi pad I had to wear that felt more like a diaper. They probably couldn’t, but that anxiety was enough to make me want to hibernate for the duration of my cycle.

2. My 20s: college, getting married, graduate school

In my 20s my life was just beginning. This was a time for me to assert my adulthood and begin to build a life with my new husband. But so many events during this time were disrupted by or tainted by endometriosis. Imagine having horrendous cramps and a ridiculously heavy cycle on your wedding day. I obviously made the best of it, but behind my smile was deep insecurity and frustration with my body betraying me on what was supposed to be a once in a lifetime magical experience. And I cannot even begin to count the number of social events that I had to miss because I just couldn’t get out of the fetal position. It felt like I was imprisoned within my own body.

3. Sexual function/fertility

While my sexual abuse had its own implications on my sexual function, there’s no doubt about the fact that the pain and length of my cycles impacted my ability and desire to have sex with my husband. There’s nothing sexy about feeling awful and bleeding so profusely. It’s messy, you feel unattractive, you are exhausted from the pain and loss of blood and frankly you just don’t want anyone to touch you.

And many people with endometriosis, including myself, have difficulty conceiving. My husband and I were leaning toward not having children, but ultimately that decision was made for me by my endometriosis. I sometimes wonder what our kids would have been like. It’s not as great a loss for me as it might have been for someone who absolutely wanted to be a mother, but it is something that I deal with directly and indirectly every time someone asks me if I have children. And when I say no, they immediately ask me why, which puts me in an incredibly uncomfortable situation.

4. Work productivity

While for the most part I had incredibly understanding bosses who didn’t penalize me for having to call in sick regularly, the fact of the matter is that I did miss work… a lot. That meant many long hours making up the work I missed because I couldn’t leave my house. This puts tons of pressure on someone to step up their game so as to feel like they are pulling their weight at their place of employment, which is incredibly stressful and a burden on one’s mental health and sense of worthiness.

5. Confidence

I already struggled with anorexia and body dysmorphia from the time I was a young teenager. Having endometriosis was yet another confirmation in my mind that there was something inherently wrong with my body. I was fundamentally flawed and nothing I could do would fix it. And the bloating/feelings of fullness only contributed to the dysmorphia, further enhancing the perverse view of my body that was being reflected back at me every time I looked in the mirror.

It’s difficult to not feel embittered by the sense that I was robbed of so much by something that could have been dealt with sooner if doctors were more knowledgeable on the subject, had better treatments available to them and would have listened to me rather than dictating what I could and could not do with my body. But instead I recognize that under that resentment and rage is grief. I’m not sure I’ve adequately dealt with that grief because I’ve spent so much time trying to make up for what I lost. I suppose the greatest revenge I can get on endometriosis and the medical community that failed me is to live my life to the fullest capacity that I can now and I’m sure as heck trying to do that, one day at a time.

Getty image by Matthias Lindner

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