Fuck, My Uterus Sucks!

Uterus-Cross-Stitch

In November, Lena Dunham published an article on Lenny Letter about her battle with Endometriosis and it inspired me to share my story of diagnosis. I have touched on the condition in previous articles but I haven’t been able to really delve into the nitty gritty because, honestly, it sucks and I don’t want to be perceived as weak by the people around me. But, seeing as 1 in 10 women have the condition and most of those will go undiagnosed, I think it’s important to share how I came to get my diagnosis and the struggles I face each and every day with this debilitating disorder.

I got my period when I was thirteen years old. I’ll never forget because it was Martin Luther King Jr. day, I had gone bowling with my best friend and our families and then that night… it happened. I was scared and a little ashamed when I whispered to my mom ‘I think I got my period’. Of course she was emotional, her baby girl had become a woman! Needless to say in the coming weeks I got more of my share of embarrassment as my aunt and uncle both congratulated me on becoming a woman. I was bleeding. From my vagina. It wasn’t exactly something I wanted the world to know about.

As soon as my period came, so did the issues. I would be completely miserable, unable to move and my stomach constantly hurt. I would be so sick that I would have to miss school or I would spend countless hours lying in the nurse’s office with a heating pad. I remember vividly being at a store with my mom and aunt and the pain was so bad I could hardly walk and I was bleeding so heavily I was dizzy and nauseated. At the age of sixteen I asked my mom to put me on birth control. I knew it could help regulate the pain I was having and also, let’s be honest, I was sixteen and curious about sex.

Birth control helped for a while, but I was still having a ton of other issues. My stomach was constantly in turmoil. I was sick all the time, throwing up after eating and spending my weekends in the bathroom. I would pass out because of the pain and often counted on my mom to hold a cold towel to my head and comfort me. I was terrified these things were going to happen at school, at a movie with friends, at someone else’s house. I had massive anxiety and would suffer panic attacks and severe bouts of anger issues. My mood was completely out of control, I was angry, scared and began to develop OCD tendencies to help me try and control situations (much like Lena Dunham recounts).

When I became an adult I was still having these issues. I would skip classes in college and miss work because I felt so crappy and was in so much pain. Eventually I went off birth control and that’s when the real fun began. I was in excruciating pain all of the time, sex was a pointless task due to intense pain and my mood swings were intense and at times I would become destructive, breaking things because that was the only way I felt I could release this pain that I was bottling up inside. I didn’t have many friends and hated going out. Looking back on that I’m so saddened by all the life I missed out on living because I was physically unable to.

Doctors often told me that it was normal to be in pain during your period and that I should just get a heating pad, some ibuprofen and suck it up. When I asked about the painful sex, random bleeding and stomach problems they pointed to issues such as IBS, UTI’s, tears in the vaginal wall. There seemed to be an excuse for every reason and when tests for UTI’s and infections all came back negative I had one doctor tell me I was making it up. Just what you want to hear when you already feel like you have no control over your body.

After visiting three different gynecologists over a two year span, I finally found one who listened to everything I said. She asked questions about the type of pain, where it was, how long it lasted. She asked me how long my periods were (between 10 and 30 days), how badly was I bleeding (through a super tampon AND maxi pad within 15 minutes). When we finally finished the Q&A round which lasted roughly an hour plus a thorough physical exam the doctor said that what I was experiencing was 100% not normal and she wanted to investigate immediately.

I had laproscopic surgery and was diagnosed with endometriosis. I felt relieved knowing that there was finally an answer to what had been plaguing me since junior high but I also felt a growing sense of anxiety because there’s no way to cure it. So now, at the ripe old age of 29, I have had to go back on birth control to ease some of the symptoms. I had been getting cysts every month on my ovaries for about a year and ended up in the ER a couple times after I passed out from the pain. I can’t even begin to tell you how many vaginal ultrasounds I have had and no, they don’t get any less awkward the more you have them. (Oh, you want to make small talk about the weather after you have just shoved a condom covered, KY Jelly laced wand up my vag? Cool.)

This is my life. It sucks that I will never have a normal experience, and I will always use every single one of my vacation days at work because I will be in too much pain. But, I would never let these problems affect the way I feel about being a woman. I feel the responsibility to share my story with other women because I don’t know who it could help. I may just be a freelance writer in Toledo, Ohio and not a Hollywood actress with exponential reach, but that doesn’t matter. Endometriosis is a global issue, and one that Lena Dunham and I can fight together.

I encourage you to have the conversation with your friends, share your experiences and if you are experiencing pain that YOU feel is abnormal, talk to your doctor. If they don’t listen, find one who will. They’re out there, you just might have to do some searching.

Colleen Rae : Artist. Writer. Feminist. Wizard. | Twitter: @ColleenSeambos
Colleen Rae : Artist. Writer. Feminist. Wizard. | Twitter: @ColleenSeambos
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