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My Story With a More Complicated Case of Endometriosis

It’s baffling how common endometriosis is yet many don’t know much about it including some doctors. Endometriosis, according to the World Health Organization, affects 1 in 10 people assigned female at birth. It’s a tissue that is similar, but not the same as the tissue that lines your uterus, and it bleeds at the same time you’re on your menstrual cycle. You’re bleeding internally and it’s incredibly painful. It can travel to many different parts of your body and your symptoms don’t always revolve around your cycle. The pain can be constant or minimal.

In my experience, treatment options are hard to come by and the ones that are available are either not accessible to many or aren’t a good option. A common band-aid for endometriosis is birth control. The most popular one is Lupron which comes in a three month or six month shot, which is also now available in pill form under a different name. It’s basically medically induced menopause and it is horrible (in my experience anyway). For some with endometriosis, the best option is excision surgery but every excision specialist is an out of network doctor and many can’t afford to see them, so we get stuck with doctors who can’t handle what we need.

Here’s my story.

I’ve had symptoms since the age of 12 but it took years to get a diagnosis. I’ve been on Lupron twice, the first time when I was 13-years-old. I’ve also been put on 30 pills of steroids a day to try and stop the bleeding and it only made it worse. I’ve been judged and told I’m “faking it” by so many including doctors who don’t understand what endometriosis is and the effect it can leave on one’s body. I’m more complicated though because I have thoracic endometriosis which is a fancy way of saying I have it in my lungs and on my diaphragm. I cough up blood every day, I have severe shortness of breath and I have constant chest pain. I’ve had 11 procedures on my lungs so far. I bled more than I didn’t from the age of 12-23 because my cycle would not end. I was severely anemic and I didn’t have a choice but to have a hysterectomy, which again is not a cure but it was the only way to stop the bleeding when everything else failed. And many people seem to think I’m cured now that I’ve had a hysterectomy and that’s far from the case. This disease creates its own hormones and feeds off of scar tissue so you can remove all-natural hormones from your body and it will still find a way to grow. Bizarre right?

It’s not fun, it’s stressful and heartbreaking. I’d be lying if I said I had my shit together because there are times when I don’t. I still question why this happened to me when my pain is so horrible, but I get through it. I don’t really have a choice. Life doesn’t stop and let you grieve the life you’ve lost. You’ve gotta find your own way. Working out helped me rediscover myself and my love for my life.

I am really thankful for foundations that raise awareness of endometriosis because it isn’t talked about enough. I went years with thinking my pain was normal because people told me that and I didn’t know any better. Endometriosis needs to be normalized and not be a taboo topic. It needs to be in books so doctors can study it. It needs to be taken seriously. March is Endometriosis Awareness Month and I will never stop advocating for myself in the hope that one day I can thrive in life without the need for medical intervention. Maybe one day medicine won’t be a normal part of my life, maybe one day I can take a deep breath without pain, maybe one day I can remember what it’s like to have a day with little to no pain. There’s hope for maybe. And if nothing else, I’m sharing so others who are experiencing symptoms know they aren’t alone. That they matter and to not give up. We’ve got this, you’ve got this.

I urge you to share this, do research, to start a conversation with others about this. To normalize talking about taboo topics so maybe change will start. Encourage people to talk about periods and the pain associated with them because periods aren’t supposed to be brutal. Normalize seeking help and holding medical professionals accountable for their actions/words. After all, we pay for their time.

Start a conversation, support someone you know who has endometriosis, let them know you love them because this battle feels unbearable at times but we are here.

I am proud of myself for continuing to love the life I lead even when the road gets dark.

Photo submitted by contributor.

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