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Let me be honest

Endometriosis and a hysterectomy

By Ele AniniPublished 3 years ago 5 min read

Here’s the thing, I don’t want kids. I don’t not like kids, exactly, but I don’t want to make them. Store bought or borrowed is fine with me. From a young age the thought of being a mom wasn’t the most attractive. And as I grew into biological maturity things just didn’t go great. Let me explain.

As a person born with a vagina and uterus, I did not experience a menstrual cycle until 12 years old. That’s not unusual or anything, just when it happened. What is unusual is the fact that my mother told me I was a liar. Awkward things happened and she finally believed me. And from that first time, things only went downhill. I knew what to expect, thanks to online forums, doctors, that terrible “hygiene” video in 5th grade, and a very helpful reference book in my parents’ collection of encyclopedias. I think they regret buying that encyclopedia for many reasons, but I loved it. The menstruation was supposed to last 5-7 days and be every 28 days, or some such solid numbers. For me, that would never be so. From nearly the beginning it would be two weeks on and two weeks off, with pain and suffering the entire time. The only span of relief involved losing way too much weight while running track and being anorexic, but that is an entirely different story. So, for me, two weeks of menstruation followed by two weeks of cramps and waiting. Two weeks of bleeding through all products provide. Two weeks of being told I’m exaggerating and lying, two weeks of feeling ashamed of my body and wanting to not exist. I tried so many things to “fix” my problem with very little help. Birth control was supposed to put me on a schedule. Unfortunately, it did not change a thing. I felt emotionally worse and had to deal with the repeated shaming from my mother (she felt it encouraged sex and that is bad). The doctors were confused at the cycle but seemed unable to help me. A nonhormonal IUD was the next option. The cycles were a little more spaced but so much more painful and…messy.

I lived with the IUD for nearly 7 years before having it out because of an infection from a miscarriage. It could have killed me, and I spent three months recovering from it. That should have been a sign that there was more wrong with me. It took many more years to find out that I do not make progesterone. The hormone that needs to be present for pregnancy. I suffered 3 miscarriages before any doctor thought “Hey, maybe things aren’t okay with this patient who has terrible periods and can’t carry a baby past 8 weeks”. But, what the fuck do I know? I suffered for years with this, and no one would even test for it, even when asked. Why do doctors refuse a test that doesn’t hurt them in any way? Because I didn’t want a baby. So, because I didn’t want a child it didn’t matter that I nearly lost my life when a pregnancy ended. I felt like they thought I deserved the pain and suffering because I most be a terrible woman for not wanting a baby.

It wasn’t until I was 32 that I was finally diagnosed with endometriosis and told there was help for it. I had the tissue removed in2019. Let me try to explain the pain I have daily. Each morning I struggle to sit up in bed. I lay and wait to warm up. I stretch and wiggle while my partner jumps out of bed to get dressed and start his day. I take 20-30 mins to get up. Once I’m up I take it slow to figure out what is going on. I often don’t eat breakfast because I hurt. I go to work late because I need to poop and don’t know when it will start. Let’s talk about that for a second. It’s not usually “Oh, I think I need to go to the potty” it’s more of an “OMG if I don’t go right now, I will shit my pants”. Then the cramp continues. It’s so bad that I often can’t walk, or sit, or lay down. I kneel on the floor until the pain passes enough to move again. I go to work and try to function not knowing what could pop up. Will the cramps come again? Will I need to poop 8-9 times a day? Will I bleed through my clothes? I keep clothes and towels in my car because I have no idea. I cry because I know other people don’t live like this and they look at me like I’m supposed to be normal. And I don’t get help with my pain. I’m told to take Tylenol and just deal with it. I get no help because I’m a non-white woman. I am a woman of color who deal with a 7-8 out of 10 pain every day and I have no relief. So, when I get home, I drink. I get to a light buzz to deal with the pain as I take care of all the cleaning and cooking in my home. And after all of that, I’m too tired to do another damn thing. There is very little joy in my life. All of it is taken by my pain.

But now in 2021, my last option is a hysterectomy. I’m getting it done in just a few months and I am so happy. For years I was told there was no help for me, or there was no problem. But now there is an end in sight for some of these issues. And right now it is my only hope.

But if I wanted children I would continue to just suffer and probably continue with fertility problems. But because I don’t want them, I can finally work to relieving g my problem. I can hope to have a real life. I can work to find joy in my activities again.

I know I sound angry, it’s because I am. I am furious that there was nothing anyone would really do until now. I am furious knowing the pain and suffering that so many people go through with absolutely no help. I am livid knowing that because I’m 35, don’t want kids, and already going through menopause I can finally get what I need. I am sorry to those that still suffer, and I hope you can find help. That won’t happen unless we all speak up. We must be loud, annoying, and invasive until we get the care we need.

humanity

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    Ele AniniWritten by Ele Anini

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