Thread by @GreekinBerlin

Okay, some #SeriousTweets coming up. On this #WorldHealthDay, I'd like to talk about endometriosis because it's a topic too few people know about. It's a problem that concerns people with uteruses. It can be quite gross, so you can either mute this threat or the #JanaTalksEndo.

Endometriosis is an invisible illness. It's cells of your uterine lining (endometrium), only they're not within the uterus, but outside of it. They build up during your cycle, just like the ones within your uterus. And when your cycle is at the

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point where you have your period, they bleed too. That blood doesn't have anywhere to go to, bc it's outside the uterus. So these cells and the blood cells clump together and form cysts - called chocolate cysts bc they're brown, bc old blood.

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I told you this would be gross.

Anyway, this shit it PAINFUL. These cysts basically glue together stuff inside your abdomen, there's cramps and bloating and usually also periods that are heavier than usual. I used tampons, and the very largest

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ones would last me like an hour. I was in so much pain that I couldn't walk, couldn't stand, couldn't sleep.

The problem with endo is, though, that "heavy periods" and "unusual amounts of pain" are quite subjective parameters. And many people

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(and this unfortunately includes other women AND DOCTORS) will dismiss a woman's complaints. "Periods are supposed to be painful." "Just take Advil." etc.

Endo cannot be diagnosed through ultrasound or pap smears. The ONLY way to positively

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diagnose endo is via laparoscopy. This is a minor surgery that can be outpatient (in Germany it usually isn't, though), in which doctors put an endoscope inside your abdominal cavity through a small incision in your navel. With that they can SEE

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endo conglomerates and also remove them at the same time.

I was lucky. I was diagnosed at 22. Many, MANY women wait years for doctors to take their pain seriously, or are never diagnosed at all, or only as a side effect of fertility treatments.

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Because hey-oh, that shit can make you infertile! Say a conglomerate is choking your fallopian tube shut from the outside, one on each side. No egg, no pregnancy. There are other ways in which endo can prevent you from getting pregnant BUT!!

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It's not a given! There are also women who don't have trouble getting pregnant even though they have endometriosis. Sometimes they get diagnosed during a cesarean!

During my first laparoscopy, I was diagnosed with stage 4 endo. That's the highest

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stage that the textbook differentiates. The surgeon said he'd never seen endo this severe in a woman this young YAAAAAAY not.

After that, I had 6 months of medically induced menopause. YAAAAAAY not. The goal was to suppress my cycle so that the

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my endo would "dry out."

After *that*, I had another laparoscopy to check if the treatment had worked. It was okay. They also confirmed a myoma inside my uterine wall, but told me it wasn't so large that I should worry about it. Especially since

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I had no plan, at that time, to have children. I mean in general, yes, but not at that time. I was 23 by then, and in the middle of my thesis.

I did get a prescription for birth control pills, and took them for years. No cycle = no further endo

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growth, that was the plan.

Around my 30th birthday, I lapsed in taking birth control for a couple years. It was a difficult time in my life for other reasons, and it happened.

When I saw a gyn next, she told me that the myoma had grown to quite

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alarming size, and that there was more than just the one.

She got me on birth control again; a new pill this time that meant no breaks at all (with the other, it was 3 blisters and then a week long break). And she wanted to see me every six months

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for an ultrasound to keep track of the myomas.

Again I'm lucky. I'm not bothered by gyn ultrasounds or examinations, and I've always had gyns who were gentle and solicitous. They all pre-warmed the speculums in warm water, for example.

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I had a few ultrasounds over the course of 3 years, and then another laparoscopy to check on the myomas. At that point, I was in a different life situation, and family plans were definitely being made, if not concrete yet.

After that laparoscopy,

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the hospital gyn's face as she came for the post-surgery patient talk was very grave. "It is possible to remove the myomas+restore your uterus, but... it won't be easy."

"Don't worry about it," I sighed. "I'm in a relationship with another woman.

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So we have a backup."

Her face brightened instantly, and my heart sank.

Y'see, I wanted to experience pregnancy, I really did. And my wife really rather wouldn't.

This isn't about endo anymore, really, because the myomas are the reason this time

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I just wanted to let you know how the story ended: I had a partial hysterectomy last fall. My ovaries are still intact, and my cycle has resumed, and so has my pain, if at about 10% of what it used to be, thankfully.

Hysterectomies don't stop

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endo. That was just about the myomas. And because it's kinda hilarious, let me tell you what my official German diagnosis was before I had the hysterectomy:

Kartoffelsack-Uterus.

Potato sack uterus.

I *tell* you, we're nothing if not literal.

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The Latin was "uterus myomatosus" - basically a uterus so overwhelmed by myomas that there isn't much actual uterus left.

So I got rid of that potato sack.

A typical uterus weighs 60g/2 ounces. Mine weighed 390g, so 6.5 that. Almost a pound.

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Or, you know, since we were talking about chocolate earlier, a jar of nutella.

But I digress.

If you have a uterus and severe pain and bleeding, mention endometriosis to your gyn. If that gyn doesn't know the term, get another opinion. Insist on

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being taken seriously. Take yourself seriously. Endo isn't lethal. It can be treated. It can be managed. It does NOT have to lead to a hysterectomy, NOR infertility. My hysterectomy had nothing to do with my endo!!

And for the love of Blood, if a

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person with a uterus tells you that their pain is abnormal, believe them. We're talking fainting from pain. We're talking being unable to stand. If you're a person with testicles, imagine being kicked in them. Repeatedly. Over 3-4 days. EACH MONTH.

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Why am I saying "person with uterus/testicles"?

Because not all women have uteruses and not all men have testicles.

Okay? Okay.

Thanks for listening, and good health to you.

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