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.
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"
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
Have you listened to our new podcast episode yet? A whirlwind tour of the history of #endometriosis, including surgical pioneer Dr Camran Nezhat. Did you know surgeons used to hold the scope to their eye when doing keyhole surgery? Discover more: https://pod.link/1488645205
Endometriosis is a chronic gynecological illness that can affect anyone with a uterus, but it often goes undiagnosed. Helping to break the silence around #endometriosis includes us all:
I have a main character in the current story I am writing with #Endometriosis and I don't want to make one or two vague mentions of her condition and allow the character to carry on as normal for the remainder of the book.
Is there anyone here with the condition who can offer me some suggestions to make her believable in her day-to-day life?
I'm looking for trans & non-binary folks with endometriosis to interview for a piece about the importance of trans-inclusive language when discussing "women's health conditions". If you're up for answering some questions for me, please slide into my DMs (is that a thing on Mastodon?) or email me at quinn@quinnrhodes.co.uk!
Copied verbatim from my IG/FB posts with minor edits for names and local slang.
POD 365.
I am alive, but at what cost? The physical, psychological and professional damage is profound; I still live with chronic, albeit much less pain from how damaged my nervous system and brain has become; I still live in abject fear that the next time pain lances through me it’s getting cleaved with a claymore and not just a papercut; I still live running and chasing, held back from things I should have attained, compromising, sacrificing, wasting my youth playing catch-up.
But I’m still alive, and I have so many people to be thankful for. My endo surgeon and hepatopancreaticobilliary surgeon, for spending those six life-changing hours with me; my pain management attending, for his patience as I failed every single conventional pain medication, my intern year seniors, for desperately trying to get me to eat; the 9B nurses, who had to deal with me throwing up endlessly; and the head of benign gynaecology, who gave me the time and space to pull myself together to commit to the op… not to mention those not even directly involved in my care - mentors who stood by me every step of the way, the nurses who hugged me and gave me chocolate when they found me crying and crying and crying in the ward pantry, classmates who came to see me preop and postop, friends who sat with me in-game on pain-filled sleepless nights, and even the faculty who were incredibly accommodating throughout M5… the list goes on…
Objectively, post-excision life is better now.
I don’t spend every waking moment drowning in pain.
I don’t get accused of trying to skive if I have to take sick leave and explain myself to deaf ears.
I don’t have to titrate a whole fistful of analgesia, antiemetics, laxatives and PPIs anymore.
I can walk, and even run again.
And I can wear pants!!!!!!
Oh right, and I too am a doctor now, despite and in spite of my body failing me.
Painful periods are NOT NORMAL. I have been gaslit all my life by people around me - family, friends, doctors, the media, random people who think they know better - that it is normal for a period to be painful and that I need to suck it up and deal with it. NO. Absolutely not.
Pain is a fundamentally pathological process and should be respected and treated as such. ONE IN TEN women suffer from endometriosis, whether they know it or not.
It is not fair - abusive, even - to anyone experiencing pain of ANY KIND to be told it’s all in their head, they just need to be strong, or any other manner of gaslighting.
There is a cause and a cure, and it is negligent if not outright maleficent to not act on it.
“Scientists now know #endometriosis is, in fact, a whole-body inflammatory condition that can alter a person’s nervous system and have severe quality of life impacts, reducing a person’s ability to work, maintain relationships and take part in social activities.”