I'm More Than My Endometriosis

4 years ago

A few years ago I had the most debilitating cramps I had ever experienced, as in lying-on-the-floor-of-a-moldy-basement-I-can't-move cramps. At the time, I didn't know that they weren't "just" cramps. I thought maybe despite all the precautions (including birth control at that time) I had gotten pregnant and this is what a miscarriage felt like. Or maybe somehow I had eaten a tiny weedwacker that was going off inside my abdomen.

After a few days of suffering, a trip to a walk-in clinic, a trip to an ER, 4 days in the hospital, and more people looking (and poking at) my lady-bits than I'd want in my life time, it was determined that most likely I had endometriosis.

Endometriosis is where the lining of your uterus grows on the outside of the organ and attaches in these small adhesions to various organs. It's an extremely painful disease, and they really don't know much about it. There's no cure, other than just removing all reproductive organs -- something this then 27-year-old had no interest in doing. It's also a disease that can only be diagnosed with surgery. Something I couldn't afford at the time due to lack of insurance.

Image: Hey Paul Studios via Flickr

So it became a game in pain management. After a few months switching around various birth controls and finding that they weren't working, I was put on Norethindrone and basically was told we'd put off having a menstrual cycle until I could afford the surgery. In these three years since that first ER visit, I can count the times I've had a cycle on one hand. Mostly it's because I messed up my pill.

One of the side effects of this disease that I didn't count on was how this would affect my social (ie romantic) life. I had a boyfriend when I was first figuring out what happened. Bless his heart for putting up with me. I didn't want to be touched. And of course, sex was the furthest thing from my mind.  On the rare occasion that it wasn't, my body immediately reminded me why this was not a possibility. But after that relationship, and finally getting my body under control through medications and dietary changes, I figure things would go back to normal and I'd start dating again. This has most definitely not been the case.

Now, I guess I can't necessarily put all the blame on my broken uterus. However there has been ways in which the endo has effected me on levels I would never have imagined. My self-esteem is a little wobbly. There has been some physical changes thanks to this disease, and also even my medication. Wait, you mean on top of all this physical pain, the pills I need to feel normal are going to cause me to gain weight? Awesome.

I've since had my surgery -- during a brief moment of being insured. And I've also since had a (painful) cycle since my surgery. I want to be better. I want to return to a normal life. I want to not fear that I might mess up my pills and people are going to witness me in so much pain that I have to be drugged up on vicodin just to make it through.

I thoroughly believe in speaking up about endometriosis, mainly because so few women do talk about it and so few women know about what is causing their pain.  This pain is not normal. As much as I feel like raising awareness is important, I don't want it to define me. I don't want this to be my label, the girl with the broken uterus. No women with this, or any similar disease, wants this. We just want a normal life again, whatever that looks like.

For me, it's a pill every day at the same time every day, almost no dairy, almost no soy, and if I'm smart, no caffeine. And for me it's reminding myself that I am so much more than this disease. I don't have to let it run my life. And out there somewhere, there's a guy who won't mind putting up with it because he truly wants to be with me. I've come to accept my broken uterus and it's many quirks, and that's the first step towards true healing.

This is an article written by one of the incredible members of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.

More from health

by Ashley Jankowski
| 4 days ago
by Elizabeth Yuko
| 6 days ago
by Maryann Jacobsen, MS, RD
| 7 days ago
by Ashley Jankowski
| 7 days ago