Part 1: my journey – to and through endometriosis

For almost twenty years, I have lived with pain.

As a teen, that pain came each month, and lasted two or three days. I would have a hard time getting out of bed, or I’d be unable to go out with friends, or I’d pass out in front of Nordstrom at the mall and my mom would go buy me a peanut butter pretzel to help with my “blood sugar”.

I didn’t know it wasn’t normal. I told my doctor about it, and he routinely made me feel many shades of stupid. He’d tell me–at fifteen years old–that once I grew up and got pregnant, all that pain would go away. Even at sixteen, I told him I didn’t foresee motherhood. At one point, I even asked him if hysterectomy was possible.

He told me it wasn’t… not just because I was “too young” but because I’d change my mind. I was too young to know what I’d want in the future.

Of course there was a possibility he’d be right.

Of course, as it turns out, he wasn’t.

That was the first doctor who told me it was “all in my head”, “it wasn’t real”, and “stop exaggerating.”

But he wasn’t the last.

I was young, and I didn’t know what was or wasn’t okay in regards to how a doctor interacts with a patient. I didn’t realize at the time that I should have been standing up for myself more fervently. It was over a decade–at least–before anyone mentioned the word “endometriosis” to me.

I can’t even be totally sure how I put the pieces together in the end, but I know it wasn’t because a doctor helped me do it. I’m sure it came about from some combination of searching Dr. Internet, ruling out imminent death, and giving myself a diagnosis. I started to look for doctors who specialize in the condition feeling sure I’d fly myself across the world to see one, if that’s what it took.

Even then, when my condition created only about 3-5 bad days each month, I felt like my life was being sacrificed to a brutal deity and was ready to demand the care I deserved.

I cried when I discovered a world-renowned endo specialist in Texas–four minutes from my house.

When I met with him for the first time, my walls were sky high.

I entered with a chip on my shoulder and bile in my mouth. I was ready to defend myself against accusations of lying for pain meds and time off work.

He just said, “I believe you.”

I cried some more

I said, “I want it all taken out. All of it! I don’t want kids, and I want my life back.”

He said, “If that’s what you want, fine. But a hysterectomy does not cure endo. If your pain is caused by this disease, and I take your uterus, don’t expect it to make you better.”

I was confused. Uhhh, my pain was about my period. No uterus, no period, no pain.

I was so wrong. He taught me a lot that day, and then my little research train brain took off on its own and I began to seriously study the disease.

I learned that endo is when cells similar to those in my uterine lining grow in places outside my uterus. I learned that if I had endo, it wasn’t in my uterus–that’s the whole problem. It might be on my ovaries, on my abdominal wall, on my intestines, behind my bladder, or any number of other places inside my body.

Taking out my uterus would stop my period, and it might stop some pain, but it wouldn’t necessarily stop pain caused by endometriosis. ‘Cause that’s not where it lives.

We started going through tests, brainstorming options, developing a plan, and shortly after, we decided to do a laparoscopic procedure which would 1) confirm the presence of the disease (which does not appear on scans) and 2) remove the endometriosis cells from any place he was able to find it.

My surgery was scheduled for November. I was frightened, but optimistic. He was going to remove this disease.

I was going to be cured.

If only it had been that easy.

 

To read part 2 of my journey, click here.

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