Thread by @EverGenuineRe

This week, .@jetzt ran an article about endometriosis in Germany.
tinyurl.com/yd2e64dn

"...Endometriose... obwohl das eine der am häufigsten auftretenden gynäkologischen Krankheiten ist, haben die meisten Menschen noch nie von ihr gehört."

Folks. We have to talk about our illnesses. There is no shame in talking about #endometriosis

This is not okay: "Im Durchschnitt dauert es für Frauen in Deutschland zehn Jahre von den ersten Schmerzen bis  zur Diagnose Endometriose. „Viele Frauenärzte sind offensichtlich nicht gut darin geschult, Endometriose zu erkennen“, sagt Sylvia Mechsner."

"Endometriosis, which affects nearly one in 10 women, is thought to be severely underdiagnosed all around the world. "

medicaldaily.com/5-symptoms-end…

"Endometriosis also causes Emily's stomach to swell so much that strangers... ask her if she is expecting a baby... the pain is debilitating, and when her period comes, it is constant. She experiences fatigue, and suffers from 'horrific'... pain..."
tinyurl.com/ychw86lb

"research has also shown that women with endometriosis-related fatigue may experience increases... around their periods. In the most severe cases, the fatigue can cause... frequent naps and feel faint if they rise or move too quickly... increases in insomnia and depression."

"Past research has shown that cytokines, the cells involved with communicating inflammatory responses throughout the body, are also responsible for inducing fatigue in patients."
endofound.org/examining-endo…

"Since my illness is invisible and you can't see it, you may think I'm faking it, or exaggerating. That's kind of the struggle," Pack said. "You just can't tell whether someone has it."

"A lack of progress in understanding the disorder means treatments for endometriosis largely "just manage symptoms" rather than addressing the potential underlying causes, for which the research is still inconclusive, Cohn said."
deseretnews.com/article/900024…

The so-called "research gap" between the medical needs of women and men is clear and yields real-life, dire consequences. [sorry for the super binary terminology!Romper needs to get with reality!]

tinyurl.com/y9zkrtaq

There is no cure for endometriosis. Despite the manifest damage it can cause, it is a mystery; the amount of abnormal tissue growth does not correlate with the amount of pain felt.
amp.smh.com.au/healthcare/the…

"Many have suffered in silence for far too long, enduring diagnostic delays of between seven and 12 years on average and experiencing poor clinical care, due to a low level of understanding," Mr Hunt said.
amp.smh.com.au/healthcare/700…

[People]  with moderate-to-severe endometriosis have a lower health-related quality of life compared with women from the general population, researchers in Norway report.

And...their mental health tends to be poorer...
tinyurl.com/y9d9b6fc

Chronic fatigue has been frequently observed in endometriosis, but large studies evaluating symptoms related to endometriosis have not systematically addressed fatigue.
endocrinologyadvisor.com/androgen-and-r…

...authors of a European report ... found a 20 [to] 50 percent increased risk of developing endometriosis with a history of sexual or emotional abuse, while the authors of a large U.S. study in the same journal found similar increase in risk with sexual or physical abuse.

"We decided to do this study because there is increasing evidence that childhood maltreatment has a serious impact on many adult diseases," said senior author of the European study...
tinyurl.com/y9vmza3e

US study:
sciencedaily.com/releases/2018/…

Study referenced in article:
academic.oup.com/humrep/article…

One of the ways doctors really bug me is asking us about the pain level we have with a 1-10 pain scale that doesn't help us.
Years ago, hyperbole and a half shared this one:

I can start around 1-2 and easily end up at the far end of the scale in the space of 3 hours.

I have had GYNs tell me that this pain is not worse than childbirth.
I had a natural birth & a cesarean.

My worst contractions with back labor were *never* this bad.

The worst part is, stress is so bad right now, I can't track my periods because I don't remember/have time to write it down somewhere that it'll save & remind.
I'm spinning too many plates.
I remember when in the moon cycle it'll be but not down to the day.

Mine is a 26-28 day cycle that never fails since I had my youngest almost 9 years ago.

However, I am down for the count for a full week when this happens. I rarely have a good month where pain hovers around #3 or less on hyperbole's accurate scale.

So I may not remember but I know the signs and yeah we just had a full moon, keep supplies on me, but I have to question each time if the beginning lower back/pelvic pain and tummy trouble is from cleaning and overdoing it or "is it time?"

Last night I hit pain levels where I nearly took something and decided to pass because it might be a wave and if I just rest, it will get better. Right? WRONG!

Tummy troubles started and I was in and out of our only bathroom around 6 times before taking anti diarrhea meds.

I thought, is it that time? NAH. I just overdid it cleaning today. It was 37° and I wasn't in air conditioning all day as I should have been...

It was 1am until the pain subsided enough that I slept.

I woke at 630 because it was already 30° in the house and I was in pain.

I got dishes done and the air conditioner running and a drink. I shuffled and got my pets fed and the aquarium lights off.

And then... pain jumped to 8 and swiftly to 10. From 25 minutes of simply standing and shuffling.

I am hanging at 9-10 right now. I don't even look like I am in pain, except my lips are paler than usual.

I've asked for help (which I only do if I can't do something), and have already been passed off by my family as "annoying them".

I'm hurting so much I can't even argue. I am at the nonverbal part of pain.

I will wait until I can rally and do it myself.

No one takes #endometriosis seriously enough except sufferers and fam/friends who decide to learn.

If you're someone without a uterus, imagine it as if: the worst gastrointestinal flu + someone kicked you repeatedly in your privates and they additionally punched you in the pelvic region.

Add in insomnia and no sleep for 48 hrs. Now try to function.

And people with uteri and endo do this every month from just before the onset of menses until menopause. That could be (realistically) 30-40 years or longer.

1 in 10 people with uteri have this.

That is a lot of people.

We need answers. Decades ago.

My pain journey started when I was 8.
We had no idea what it was.
We tried diet changes for 2 years without results.

I was 11 when I had my first menses. The pain was so bad I told my mom it felt like a serrated steak knife was cutting into me "inside, down there".

I hadn't even had sex ed or learned all of my body parts yet. But I knew that pain intimately.

We went to doctors who didn't examine me and wanted me on birth control OR to stop exaggerating.

No answers until I was 23. Just, "stop embellishing. It is not that bad."

At 23, I had exploratory surgery which found stage 1 endometriosis and adhesions, which were removed. My gyn then told me after to stop exaggerating about the pain. I have stage 1 and across like I have pain of stage 4. I was LIVID, but being raised in Christian Patriarchy,

I could only seethe and tell him he was a rude jerk and very wrong and I wasn't coming back to him again.

At 24, I was diagnosed with celiac disease.

My endo got better for a short while, I had kids at 25 and 26, and since then... dear heavens .... the pain..

My doctor in the US gave me muscle relaxers for the pain. Here, I'm lucky to get paracetamol (like acetaminophen in the US), which hasn't worked on pain for me since I was 9.
Ibuprofen helps at 800mg. My doctor wants me off it. The only thing I have that helps is RX only.

I won't get another RX for it without seeing my gyn again, who also doesn't take my symptoms seriously as my records are all still in the US and I am American, and we are a drug seeking lot. 😖

Tl;dr:
Endometriosis sucks and there isn't enough research on it. 10% of our world population has it and not enough people give a hoot about it.

Fund research. Advocate for us. Help us when we ask. Ask if we need anything and follow thru if you know we are "sick".

Stop joking about periods and period pain if you do not have either.

Listen to people with uteri. They know their bodies better than doctors, and doctors often do not listen

Advocate for better health insurance coverage and better work plans for sick days and flexible work hours/work from home plans.

Pay ppl who can't work regularly.

Pay who educate you.

Don't be a dick when people say they're in pain. Believe them.

If you want to, I have a pinned post on how you can help me, but you are under no obligation to do so, unless you demand labor I have no time for.

https://twitter.com/GuinevereRenee/status/1003544099029471232?s=19

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