Uterus Liberation Day, or, Don’t Say You’re Sorry

It’s been a whopping 8 months since my last post, and there is so much I want to write about. But first, I’m going to wrap up that last rant with this cathartic summation courtesy of John Oliver on Last Week Tonight.

Ok, it’s time for stories about things actually going my way. After 6 years of not changing my mind, my preferred doctor finally consented to giving me a hysterectomy.

UTE LIB

I don’t care if it is a birthday meme, IT SPEAKS TO ME

The nightmare I described in the last post plus the severity of my pain was finally enough to convince her this was what I needed, PROMPTLY (reality: 5 weeks). I kept a handy countdown app on my phone.

COUNTDOWN CAP My friends and family were thrilled for me, and congratulated me while acknowledging that congratulations shouldn’t be necessary. Nobody congratulates you on getting your appendix out, and nobody makes you wait years to do it. I cared about my ute as much as my appendix. (Incidentally, like any good academic, I have a really really long appendix).

I am exceedingly lucky that I can count on one hand the number of insensitive friends or family that have disregarded or ignored my disease. Actually, I can count on one finger, and I bet you can guess which one I use to count him. In continuing evidence that I am surrounded by the very best people, my friends threw me a Hysterectomy Party.

Family even brought cupcakes from Boise for me!

Family even brought cupcakes from Boise for me! Courtesy of Lilly Jane’s Cupcakes.

UTEIATAEmily made me a pinata, complete with cysts and lesions and ovaries that will not cooperate. PERFECT.

I cannot tell you how good it felt to beat that uterus pinata with its own ovary. And we all concurred, burning a uterus in effigy was the most pagan thing any of us have done on Easter weekend.

UTE EFFIGY

or any other weekend, really.

I had hoped that once I set a date for my surgery, I could cope better with my pain. I could always remind myself “Only 30 days…only 25 days…” but I was mistaken. Every day was worse than the one before it. I couldn’t go to work for the five weeks leading to my surgery. You could find me miserable in bed from painsomnia, or miserable on the couch clutching an electric blanket because standard hot pads were insufficient.  And angry, I was always exhausted and angry. My psych let me up my anxiety medication from “as needed” to “three times a day.” I did cross stitch projects, which made sense since I couldn’t move around and all I could think about were needles.

OVARYACTING

Picked up this pattern from Etsy shop NerdyLittleStitcher, the cysts and scars and endo growths were my idea. https://www.etsy.com/shop/nerdylittlestitcher

I couldn’t exercise, I’d been putting on weight, I hated my body and all my clothes, and I was teetering on the edge of a midlife crisis, mourning the loss of my 20’s and all the freedom and energy I had then. (In my 20’s, I fell in love, graduated college, got married, traveled, and danced all the time. Even with all my accomplishments, I feel as if endo robbed me of that decade while I cycled fruitlessly through every birth control available, continually upsetting my hormones and only ever making the pain worse).

The 1-10 Pain Scale is totally insufficient for a person coping with chronic pain. It’s appropriate for someone who’s just fallen down stairs, or a tooth ache, or childbirth (I assume!), something acute. I was operating (sort of) with a daily baseline of what I interpreted as 7-8. Even driving hurt– every bump stabbed. My doctor asked me, “How do you live?” and my only answer was “Ten seconds at a time.” I couldn’t plan for anything, couldn’t look forward to anything with excitement; even the surgery. I was sure I’d be feeling awful for a few weeks even after “Eviction Day.” There was still no identifiable end. I even had to reevaluate my Level 10. Yes, I found a pain higher than the strongest pain I had imagined. I tried to enter 11s and 12s in my symptom tracker, but…

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My doctor prepared me for two possibilities for my recovery. One, that since I had lived with so much pain, this too would suck. Both my previous surgeries left me worthless for at least 9 days. She prepared me for worse, with 40 oxycodone. The other possibility was that since I had so much pain, this would be relatively a breeze. After all, I had been “living” at an 8. I needed to take 15 oxy just to get me TO surgery. Vicodin no longer even took the edge off (and if you mention ibuprofen I might reach through the internet to slap you).

I was at the hospital by 6:30 a.m, and before the gas, my surgeon had me tell the surgical team about my hysterectomy party and pinata. They loved it.

POSTSURGERY

I was home by 6:30 p.m. with the huge relief knowing I had left my uterus, cervix, both tubes, and left ovary at the hospital. I felt so good I tried to eat pizza (I admit, a bad idea). But aside from that stunt, I didn’t have nausea. I didn’t have any bleeding. I didn’t feel the air bubbles in my shoulders. As for pain, I followed to the recommended dose schedule of the oxy, but stopped after 5 days! I only needed 15 oxy to recover!* I went out for dinner with my sweetie 3 days after surgery. When I saw my doctor for the post-op appointment, I had been off pain pills for a week! A WEEK! She was flabbergasted (and yes, she apologized for making this a 6 year process, so hopefully the next Katie that comes around has it easier).

In my post-op appointment, my doctor confirmed I’m recovering fine. She said the weirdest thing… “I’d like to see you back in… no more than a year.”

I went back to work in about ten days, and was able to attend graduation for “my” kids. I can exercise again. I love my scars. I can sleep and wake up rested and without pain. My clothes are starting to fit again. I am having days with no pain! When I do hurt, for the first time in my life, Aleve seems to do the trick. I’m still turned off to Ibuprofen.

There is so much left I want to write about, so I promise I’ll be back in less than 8 months this time. I’ve learned a lot this year about coping with chronic illness and hospitalization for both myself and my husband. Roughly a list of Do’s and Don’t’s, which I will begin here.

When I tell you about my hysterectomy, don’t say you’re sorry.

Endo wasn’t going to kill me, but hysterectomy saved my life.