I would join a group in facebook for endometriosis, but all of them have names like "endometriosis sisters "WOMEN with endometriosis" or pictures that indicate very feminine space, which makes me very nervous to ask to join as non-binary (and masculine) person.
I know transpeople aren't always welcome, so...I get very anxious abouit stuff like this. I don't want to make the cis people uncomfortable or even worse - unsafe, or angry.
I was lucky: I was diagnosed relatively early - I was in a big city with teaching hospitals. I had many various treatments to reduce chronic pain. Knowing the issue, I could use nutrition to control it, too.
But stories like these are still very common. The destruction of a person's life should not be waved away as "in your head":
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The Endometriosis Pelvic Pain Laboratory at the University of British Columbia, Canada is conducting a study to develop and validate the Deep and Superficial Dyspareunia Questionnaire (DSDQ).
Sometimes my pain medication is weirdly effective and rather than being reassuring it actually makes me feel a little bit insane :blobcat_dizzy: why can't it be this effective ALL THE TIME!?!?! #justChronicPainThings#endometriosis
Excellent news: Surge in #endometriosis research after decades of underfunding could herald new era for women’s health - Nature Medicine
"Endometriosis affects 1 in 9 women and people who menstruate (which can include transgender men and non-binary people) — an estimated 190 million people globally. But like women’s health in general, the condition has been “disregarded, overlooked or particularly underfunded”, says Krina Zondervan"
"Slowly, says Andrew Horne... the thinking is shifting towards #endometriosis being a whole-body disease in which inflamed lesions sensitize the central nervous system to chronic pain. As a result, nerves in the brain and spinal cord misfire to amplify pain, which persists even after lesions are removed. Chronic pelvic pain, painful sex, myalgia, fatigue, depression and gastrointestinal issues such as intense cramps and bloating, are other symptoms of the condition."
Much of the #NHScriris, as I have often said, is an engineered programme to 'encourage' us to use private #healthcare.
That said, we should not be blind to the shortcomings (especially around women's health) that stem from other structural issues... so while the defunding of the NHS may in part contribute to the background of the appalling treatment of women with #endometriosis, equally we need to recognise this as separate issue that needs urgent attention!
Thing I learned today, about half a decade after getting a hysterectomy to treat endometriosis: frequent yeast infections are among the symptoms of endometriosis. Perhaps one of my doctors could have mentioned that, but at a certain point I stopped mentioning my yeast infections to doctors because I was tired of taking worse-than-useless oral antifungal meds.
Anyway, now you know. Periods aren't meant to be excruciating. And you're not meant to endure constant yeast infections.
Our latest podcast episode is here! Explore the cutting edge of #endometriosis research. To whet your appetite, here's Dr Tatjana Gibbons talking biomarkers and why they matter.
Endometriosis has been historically under-researched and under-funded. Finally, that's changing, with research from all angles - from experience of pain to genetics! We were privileged to sit down with these incredible researchers to explore their vital work.