Can a museum exhibition contribute to science? Yes!!!! More than 12,000 people visited our exhibition, Endometriosis: Into the Unknown. Visitors were invited to contribute data to a pain scale. Thousands of responses were made throughout the exhibition...
@vagina_museum My endometriosis pain was "screaming on the bathroom floor" (never passed out) before excision surgery to remove endo lesions. I'm so lucky that this surgery worked for me.
My mother once said her endo pain was worse than childbirth (she had 3 kids). I've never had children, so I can't use that as a comparison, but it sounds about right to me.
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":
😭
♿ 🛏️
C'est jusqu'au 6 avril,
l'exposition "De la vie au lit",
à Montréal, mais proposant des modalités de retransmissions web,
et il s'agit du travail fondamental de l'excellente commissaire française Sarah Heussaff (qui est actuellement publiée dans le dernier Multitudes).
Je suis profondément heureux de ce travail, il correspond notamment à plein d'échanges entre Sarah et moi, et la continuité de son travail pointu dans les Disability Arts / Arts Handicapés.
C'est tout un pan de la culture handie & malades chroniques qui est étudiée via nos vies alitées puissantes. Nous existons allongé-es.
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: It’s time to change the pattern of pain, stigma and barriers to diagnosis and treatment.
“Patients described being dismissed, that their pain was “just muscle pain,” “all women go through this,” and “this is the way cycles are for women,” and to live with it.”
“…endometriosis patients need more research, more options and more attention to be paid to the disease.”
"Finding Answers, Getting Support". The second episode of our #endometriosis podcast miniseries is here! We sit down with the lovely folks at Endometriosis UK to discuss the journey to diagnosis, how to advocate for yourself, and support services https://pod.link/1488645205
Can't visit our #endometriosis exhibition in person? Endometriosis: Into the Unknown is available online for free! Take a journey from the basics to the cutting edge of research, exploring art and experience along the way https://www.vaginamuseum.co.uk/currentexhibition