Uteruses, Let Me Tell You

Surgery update, health update, #abolishinsurance

Hey Loves.

Writing this during the naptime Pippin fought with every ounce of her body. She will be 3yo soon. I can’t understand. She was a squish loaf like… yesterday? And now she has complex sentences and negotiations and theatrical protests and and and… and wants to drop her naps. But she’s not ready. I’m not ready. Please nap on weekends, little bear.

I haven’t written sooner because I had it in my head that I was going to do an audio update after my surgery. And I got so stuck on this plan that I put off updating you on HOW SURGERY WENT because I wanted to make this little audio while on a walk.

Alas, I got viral laringytis immediately after surgery. Which became a sinus infection. Which became pneumonia. I cough when I speak and that doesn’t seem like it will end any time soon.

SO. Surgery.

It went so well.

I am officially diagnosed with endometriosis. I am noted as “probable” adenomyosis based on how my uterus looked.

What are these things?

Endometriosis is when tissue similar to the lining of the uterus travels outsider the uterus to other parts of the body. It attaches to organs, abdominal wall, vessels, etc and grows. It even menstrates blood each month because it cycles the way the uterine lining does. While these “spots” are super small, sometimes smaller than can be seen with the naked eye, they hurt like a fucker. There’s some kind of brain/nerve/endo spot conversation that triggers pain signals to grow. Kind of like a canker sore in your mouth hurts like hell no matter how small it is.

Adenomyosis is when the uterine tissue grows into the wall of the uterus creating clusters of uterine tissue that bleed extra much during menstration. It’s basically endo but INSIDE the wall of the uterus organ itself.

I had spots of endo on locations throughout my pelvic cavity. It thankfully was not on major organs like my kidney and diaphragm.

There are not fully formalized ways of telling how long I’ve had endometriosis growing throughout my body so we go off when symptoms began.

Symptoms began when I was 20 years old. I am 35.

Surgery was robotic assisted laproascopy. Four small incisions were placed in my abdomen; my cavity was filled with gas to expand it; and a robot with a light and camera went in to look for the endo spots. When the team saw locations, they excised it. In other words, they cut it out. Where it was too risky to cut, they ablated. In other words, they burned the surface, a more painful and short term solution but one that means less risk to the organs treated. It’s pretty tricky to cut under endo that sits on the thin film of an ovary.

When I woke up, I asked first for Robbie and then for water. When Robbie got there, I asked him what happened. He said, “It went so well! They took a lot out!”

“Fuck yeah,” I whispered.

I floated in a bubble of self-love for two days. I felt a glow from my chest that buoyed me and kept me warm. I was victorious. It had been true all along. I had been heard and treated.

It doesn’t even matter to me that this surgery is just the beginning. That I’ll likely have to have more surgeries in the future. That I’ll definitely want my uterus out. That my appendix looked messed up and will need a precise, slow, and risky surgery to be removed at a later date. That the surgery may or may not reduce my symptoms.

I was right. I was right. I was right.

I had loved my body and I had fought for it as a parent fights for their child. I had stood up for it. I have come through a year after many years of pain and struggling. I have grown up enough to not accept my suffering as something to resign myself to.

Even if I suffer forward, I have fought for the name. I stand justified.

Recovery has been straightforward. Very little pain. Mobility returned. Cleared for all activity after four weeks. I attribute this to my surgeon. She only does these surgeries. She meets with endo patients and the takes out endo. That’s it. She knew what she was doing and it meant that I am able to feel better surprisingly fast.

The hard part was my immune system. I learned once again that my immune system crumbles under stress. I got a virus and then infections. I’ve been laid flat by crackly lungs, not surgery complications.

Been thinking a lot of thoughts about healthcare and medicine and women’s health and chronic illness. It feels like something is brewing in this direction for me. Which makes sense. I’ve had thoughts about hospital chaplaincy since I was inpatient last February. I’m reading a lot of memoirs about health and nonfiction about science. I’ve spent as much time on pubmed as I have anywhere else on the internet this year.

There’s so much I want to tell everyone about endometriosis. I want to talk about my experiences in those 15 years. I want to tell you about the talk I went to last week that surveyed the scientific field and how much we still don’t know, how much of it is guesstimates. I just really really really want to talk about the science. It’s fascinating to me.

I’m thinking about the language systems that exist between science and medicine and patients and public. How communication gets muddled between these vocabularies and grammars. How rare it is to find a team equipped to cross these borders. How hard it is to be the person who can find their way to help if death is not already knocking at the door. How much context it requires to know how to do that.

I want to go back to myself even ten years ago and tell her how to manage it. How to explain. How to make the phone calls. How to organize the lab results. How to read science papers.

How much I want to see health insurance abolished. Maybe all insurance. How insurance is the thing that keeps us from care and how insurance warps the medical training process and how we are all pieces of machinery manipulated for profit. How doctors don’t become doctors for this reason. How they are made by this anyway.

(dude, I wrote the above BEFORE Luigi ran through NYC. Damn.)

I want to be free of my own health issues. I want to grow strong and go back to the years I didn’t even both showing up at the PCP’s office for a wellness check. Where my hematologist didn’t pick my name out of the “new patients” pile and say “Oh I know her case from when I admitted her to the hospital. I’ll take this one.” I don’t want to know hematologists by name and by sight. But I do.

The new year is one of hope for me. I want things to feel different than the last two years. But right out of the gate, I’m waiting with intense anxiety for some lab results about something completely orthagonal to the rest of my health. How did I even get here? When did I pass so fully into the Kingdom of Illness?

Years ago. It was years ago.

But it seems like I’m here to stay. Time to set up my tent and get comfy.

It’s also in my friends. I’m going to be meeting with Jade T. Perry regularly this year for figuring out life as a chronic illness human (she knows a bunch). One of my husband’s best friends has a rare and weird cancer. Another friend, who has answered many of my own panicked health questions this year, started chemo this week. My MIL is staring down a lung transplant while her lungs degenerate quickly with COPD. Bodies struggle to keep alive all around us. We can’t see it on the surface. Death peeks around the corner and shadows us. It doesn’t feel malicious but pending. An uncertainty.

I hate uncertainty. And all of life right now is figuring out how to keep living while completely, utterly uncertain.

More to come. I have concrete notions of what I want to write this year but of course, that uncertainty can mean inconsistency. Promises are things I don’t make all that often anymore.

Unless you are my kid begging for oreos and then I might, just might, say yes.

With Love,

Dana