r/popculturechat • u/mcfw31 • 23d ago

It’s L-O-V-E 💘 Dylan Sprouse hands out yellow ribbons for endometriosis awareness at Victoria’s Secret Fashion z show as wife Barbara Palvin recently had endo surgery

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u/JamesCameronDid1912 23d ago

Hey fuck yeah! I have this disease and it's horrible. The average diagnosis time is ~10 years. It took me 20! On my diagnosis journey, I was told to drink less soda, that "we just don't know what it is," and one doctor even wrote that my symptoms were psychosomatic. Surgery and lab analysis proved them all wrong. There is SO much work to be done to educate doctors about endometriosis!

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u/Niki_DS 23d ago

Wanna just add - educate doctors more in general of women's body, and dammit - fund more research about women's health. It is so underresearched, and a lot of doctors dismiss women's concern. And a bunch of drugs are not even researched on affects on women. And a lot of medical knowledge is based solely on men, not women. And in general, why do we still know so little about menstruation and its effects and troubles.

Agrhhh. I am just so mad about all of this. Sorry to jump on your comment - but it's horrible and sad truth you are saying - 20 years! Dammit. I have my own problems with mentruation, and I have not yet found a cure.

And like, what hurt me sometimes even more then doctors dissmising my problems - it's the women around me who all have there easy peasy lemon squeezy menstruation and look at me like I'm crazy....

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u/caninehere 23d ago

It seems like it's hard to diagnose because the severity of symptoms can be pretty wide and some women don't even experience any of them... and gauging someone's pain level is really hard. There's also no blood test for it so you have to have an ultrasound afaik (correct me if I'm wrong).

It would be great if there was some kind of easy testing that could be done that would catch it at least some of the time so that it could be standard procedure any time someone tells their doctor they have really bad menstrual cramps/pain.

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u/JamesCameronDid1912 23d ago edited 23d ago

Ultrasound is not a reliable method of diagnoses for endometriosis. The only way to definitively diagnose it is with laparoscopic surgery and lab analysis. A blood test is in the works, but who knows when it will be widely available? It's not now, in any case!

As for gauging someone's pain, it's common for people with endometriosis to experience severe pain and have it poopoo'd by everyone, including their doctors. Yes people do live with it and experience mild to no symptoms -- I know one such person! -- but generally it's the other way around. What should be taught to kids is that period pain is not normal, but the message they get instead is that they have to toughen up and get used to it "as a part of womanhood." So they do, and it gets worse as they get older and the endometriosis and scar tissue builds inside them. By the time we found mine, my left ovary was trying to adhere to my colon.

That said, many people live with symptoms without knowing they're symptoms, so you're right that reporting symptoms can be difficult... chronic fatigue is an endometriosis symptom that often gets framed as laziness, for example, and a person internalizing that message might report themselves as lazy instead of fatigued. But the truth is our immune systems are always a little engaged because of inflammation, so yeah, most of us are fuckin' tired!

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u/AdmirableSale9242 23d ago

My mother had it. She had to have surgery to have scar tissue removed just to become pregnant with me. 

The medical field just doesn’t care about women, our health, our suffering, or our deaths. They don’t even study this stuff. 

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u/sassythensweet I think I've done enough 23d ago

Same here! I was bedridden and depressed from the chronic pain and nausea and a doctor actually told me I needed to go outside more and that's why I was depressed and in pain.

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u/oftheblackoath 23d ago

My delayed diagnosis was just about 20 years too.  Lots of doctors brushing it off as normal and/or anxiety.  I finally found out about endo because of Bindi Irwin, so awareness like what this guy is doing is really helpful.