Part 2: my journey -road to hysterectomy

After my surgery, I was optimistic for the first time in a long time. If my doctor has just removed all of the endometriosis cells he could find, I’d be good, right?

Well, it is true that removal of endometriosis through excision is the best way to combat that disease, but there’s always the chance of missing something, and the next five years were a steady climb up the pain ladder.

I had relief for a while–relief meaning LESS pain, not none–but it wasn’t great. My first period after surgery was one of the most painful things I’d ever felt, EVER.

In many ways, life just sort of went back to normal. I still had painful periods, and the pain lasted around 3 days or so, but within a few months, I started to also have painful ovulation. Suddenly, I was having pain two separate times a month and it was lasting a little longer each time. Now every other week, I was hurting. Sometimes it wasn’t awful, but other times, I couldn’t leave my bed.

My doctor and I decided on pain management since I’d responded well to the heavy meds I’d used since surgery. I am a responsible patient, and I follow all of the rules, so I was able to keep access to my heavy pain killers which I use judiciously.

For another 3 years I continued in that way. But as each year passed, I noticed (and so did my husband) that the pain seemed to be getting worse.

What was once 3 bad days a month had become 4 bad days twice a month. And now it was more like 6 days twice a month. And then it was like two full weeks every month.

These painful days had escalated.

I regularly ended up on the floor of my empty classroom, crying on the cold tile when my students were in electives. More than once I was wheeled away to the nurse’s office where I laid on a cot next to a sneezing seventh grader and tried to keep my crying quiet. Other days, I couldn’t get out of bed at all. The pain travels up and down my legs and back, so walking is hard. Times when I did decide to walk, I’d sometimes get so lightheaded that the 30 steps to the kitchen ended with me sitting on the floor, white as a sheet. I passed out dozens of times at home and at work because my body just couldn’t take the pain. I’d fall to my hands and knees on my way to the bathroom.

And still, I was stagnant.

Partially because this had somehow become a twisted version of NORMALCY, and in part out of pride.

See, when you have endometriosis, everyone and their dog thinks they have the right answer for you. Friends, acquaintances, and strangers would tell me how I should OBVIOUSLY have a hysterectomy already! It worked for their aunt! Their cousin had bad periods but ablation worked for her! Their grandma just had a couple of kids and poof! No more pain!

But I’m a researcher. I study.

I know that HYSTERECTOMY DOES NOT CURE ENDOMETRIOSIS. That’s not a thing.

Think about it. Endo is when these rogue cells are growing all over your insides! On intestines/abdominal wall/bladder/appendix. THESE CELLS AREN’T IN YOUR UTERUS. Removing the uterus, while removing the period, does NOT stop the pain for such a large percentage of women.

And in my case, all of the visible endo had already been removed. So either some was missed, or new spots had grown, or… endo wasn’t my only problem.

Turns out, as my doctor had suspected for years, I had a high likelihood of a sister disease: Adenomyosis. Adeno is when cells (a lot like endometriosis cells) grow in the walls of your uterus itself. That combined with the way my ovaries are being trapped by the web-like adhesions to limit their mobility means that for ME, my uterus and ovaries ARE a big part of the problem.

So they’ve got to go.

I supposed I’m writing this to document that my decision was NOT arrived at lightly. Hysterectomy is NOT an obvious or easy choice. It is NOT a sure thing. It is NOT something I “should have done years ago.”

This is my journey, and I’m hopeful that this decision will reduce my pain and give me back some of my life. Whether it’s 20% or 60% or 100% improved, it’s worth it to try and get back some of who I am and who I want to be.

Missed part 1 of my journey? Click here.

 

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