How I Fought to Be Diagnosed With Endometriosis
I began menstruating when I was 13. I was not happy about it. Puberty itself was a difficult adjustment, as it is for many (if not all) young adults. But something felt off. My monthly “experience” was excruciating… and everyone told me that’s how it was supposed to be. They were wrong.
When I was 19 I began bleeding twice a month and experiencing intense pain around ovulation, as well as my usual extreme pain around my period. I knew I wanted to look into it, but couldn’t afford to see an OB/GYN just for it to end up being no big deal – as I was frequently assured it was no big deal. I visited Planned Parenthood, hoping to cross my T’s and dot my I’s. By the end of the visit the NP told me she suspected I had an ovarian cyst and she recommended getting an ultrasound to rule out appendicitis. After a little strategizing, and help from my parents, I got my ultrasound and there it was: an ovarian cyst.
This cycle repeated a few times: cyst developed, cyst became unbearable, cyst ruptured and landed me in bed (or wishing I could be there) every month. Like clockwork. I saw an OB/GYN about it. When I asked for more options (because birth control and a narcotic didn’t seem like a good long-term plan to my 19-year-old self) he told me two things: 1. Most women are “cured” from ovarian cysts, and the like, when they begin having babies… so I really only had to stick it out for a few more years, and 2. Women everywhere experience a monthly cycle without issue, so it was possible that I just have a low pain tolerance. I remained undiagnosed, but more than that, I felt ridiculous.
I left feeling small and weak. Here I was, proud of myself for looking into the problem instead of being a victim of the problem, and that doctor shot me down. It was two years later before I began looking into my condition again. Two years spent grinning and bearing it.
A little while after I moved states, I chose to see a new doctor. I was now on my parents’ insurance and there was a clinic nearby that was affordable. My first appointment with my new doctor was incredible. After a brief description of my condition, the first words out of his mouth were, “Has anyone suggested to you that it may be endometriosis?” He had ideas. He had peers to bounce questions off of. He validated me, recognizing I was experiencing chronic pain. But one of the treatment approaches led to six months of constant menstrual bleeding. I became anemic and chronically fatigued. It wrecked areas of my personal life and made me unreliable at work. It wasn’t long before I knew I needed to take another break from treatment and regroup. I needed an income. I needed roommates. I couldn’t afford to constantly stir the pot of my hormonal, exhausted health mess.
It was another year before I had the confidence to begin treating my health again. My first doctor wasn’t the only one who suspected I had a low pain tolerance; I heard several people say that over the years. So, this time I knew I needed to be in charge. No more guessing or experimenting. During my first appointment with my new OB/GYN I requested a laparoscopy to identify that I do, in fact, have endometriosis, and to use a laser and excise the disease they could see while doing so. The doctor, a very straightforward woman, looked at me with her arms crossed, “Well, I have never had a patient come to me and request a surgery so confidently before. It sounds like you have done your homework and understand what you’re asking for. I’ll do it.” We spoke a little longer about the details, what to expect and how long it would take. Then it was scheduled!
On surgery day she reminded me that if they didn’t find any diseased tissue, the procedure would take about 30 minutes. If they did find endometrium tissue in my pelvic cavity, then it could take up to two hours or more. Upon waking up, my very first question I asked was, “How long was my surgery???” It was an hour and a half long. In addition to the several lesions they found and excised, they discovered that my colon had fused to my right hip. In short, I truly, actually, definitely was in a lot of pain.
I was barely able to open my eyes, but I was leaping for joy inside. I finally got my diagnosis… and I was creating a plan. I adjusted my diet and created goals for exercising and eventually having children. For anyone else who deals with a chronic illness, or has traveled the road of the undiagnosed, you know what I mean.
A diagnosis was an open door. It changed the script from being about what I couldn’t do, or what was wrong with me… to what I could do, and what I was good at. It meant finding a way, instead of banging my head against a wall.
It meant that for the first time since puberty, I knew my own strength, and I immediately knew I would have the pleasure of encouraging others on the same path. If you’re on a journey like mine, undiagnosed and in the dark… you don’t have to walk alone anymore. Maybe it’s endo, maybe it’s PCOS, maybe it’s something else. You’re hurting. It’s real. I believe you.
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Photo via Prikhnenko on Getty Images