hiisikoloart, to trans Finnish
@hiisikoloart@writing.exchange avatar

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.

#trans #nonbinary #endometriosis #LGBTQAI

hiisikoloart, to random Finnish
@hiisikoloart@writing.exchange avatar

Does anyone know if can get worse from stress because...I be hurting. I be hurting pretty bad. (:

deborahh, to random
@deborahh@mstdn.ca avatar

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":
😭

https://mastodonapp.uk/@bbcnewsfeed/112172315600436852

Moby_MicroDick, to random French
@Moby_MicroDick@piaille.fr avatar

♿ 🛏️
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.

Vive invitation à regarder.
👉 https://galerie.uqam.ca/expositions/de-la-vie-au-lit/

Moby_MicroDick,
@Moby_MicroDick@piaille.fr avatar
deborahh, to random
@deborahh@mstdn.ca avatar

I tell you, from personal experience: endometriosis has huge impact on mental health, family life and the economy:
https://mastodonapp.uk/@bbcnewsfeed/112113333229718169

ttpphd, to science
@ttpphd@mastodon.social avatar

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).

https://www.reddit.com/r/psychologyofsex/comments/1b1jlf8/experiencing_painful_sex_help_ubc_develop_a_new/

gersande, to random
@gersande@silvan.cloud avatar

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!?!?!

Jakra, to random
@Jakra@aus.social avatar
kcarruthers, to random
@kcarruthers@mastodon.social avatar

Excellent news: Surge in 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"

https://www.nature.com/articles/s41591-024-02795-0

kcarruthers,
@kcarruthers@mastodon.social avatar

"Slowly, says Andrew Horne... the thinking is shifting towards 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."

themostroom, to random
@themostroom@c.im avatar
  • went to the gym and jogged 3 mi for the first time in my life
  • starting the week with an empty laundry basket
  • S U N 🌞 ☀️ 🌄
vagina_museum, to random
@vagina_museum@masto.ai avatar

Tomorrow night is the second lecture in the Feminist Lecture Program's spring term. This online class will explore art and activism. You can join us from wherever you are in the world, as this lecture is online! https://www.outsavvy.com/event/17614/feminist-lecture-program-collab-endometriosis-activism-making-the-invisible-visible

ChrisMayLA6, to random
@ChrisMayLA6@zirk.us avatar

Much of the , as I have often said, is an engineered programme to 'encourage' us to use private .

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 , equally we need to recognise this as separate issue that needs urgent attention!

https://www.theguardian.com/society/2024/jan/21/gaslit-by-doctors-uk-women-with-endometriosis-told-it-is-all-in-their-head

SallyStrange, to random
@SallyStrange@eldritch.cafe avatar

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.

deborahh, to random
@deborahh@mstdn.ca avatar
da5nsy, to london
@da5nsy@social.coop avatar

I visited the @vagina_museum today to see their exhibition on and I thoroughly recommend it.

Apparently only 54% of those in the UK have heard of the condition, so I'm gonna be doing a lot of shouting about it.

If you can't get to to see the exhibition in person, you can see some of it here: https://www.vaginamuseum.co.uk/endometriosis

A photo of a museum caption board which reads: Why do we know so little? Endometriosis is under- funded and under-researched. And it all comes down to this: stigma and discrimination. A huge part of this is the gendering of the disease. Diseases more likely in women and people assigned female at birth are less likely to be funded than ones dominated by men and people assigned male at birth - even when they have a similar level of impact on a person's life. The UK has the largest gender health gap in the G20. There is even less research looking at the impacts of endometriosis on people of colour, queer people and gender diverse people.
A photo of an interactive board where people could place stickers to report the answer to the prompt "how painful was your last period". The options are: - Pain? What pain? - Paracetamol sorted me out - I could go about my day but I didn't feel good about it - Had a cry on my way into work - I couldn't get out of bed or go to work - I passed out. I literally thought I was dying. Literally. There are a large number of stickers in each section, but most in "I could go about my day" and "paracetamol sorted me out".
A photo of a museum board which reads: What next? We are still on the search for a non-invasive diagnostic tool, a cause and a cure. And research is happening all over the world to find these answers. As you wait for your diagnosis, the research may change the landscape, This research must be done in collaboration with patients - too long people with endometriosis have been ignored and dismissed. Whose voices are out there that we should be listening to but aren't? Endometriosis Care is a research group based at the Wellcome Centre for Human Genetics, and the Nuffield Department of Women's and Reproductive Health at the University of Oxford. They are working on understanding many of the questions highlighted in this exhibition. The Social Sciences Endometriosis Network is an international network that promotes social, psychology, and humanities research on the condition. It convened in 2023 the world's first academic conference to bring together endometriosis social science and humanities researchers from around the globe alongside researchers, patient advocates, charities and authors. The University of Edinburgh is currently running a clinical trial called ESPriT2. It was found that 90% of patients who underwent surgery for endometriosis reported their pain returning within two years. The trial is trying to determine if surgery is helpful, harmful or of no benefit at all.

vagina_museum, to random
@vagina_museum@masto.ai avatar

Our latest podcast episode is here! Explore the cutting edge of research. To whet your appetite, here's Dr Tatjana Gibbons talking biomarkers and why they matter.

Find it where you get your podcasts! https://pod.link/1488645205

This video is subtitles for the audio

hiisikoloart, to random Finnish
@hiisikoloart@writing.exchange avatar

I made the grave mistake to cough, while laying down, as the curse known as Rivers of Blood had become to squirm and scream within my innards.

It and gravity are my greatest enemies...it's like being hit my dysphoria train.

dmacphee, to Canada
@dmacphee@mas.to avatar

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.”

https://theconversation.com/endometriosis-its-time-to-change-the-pattern-of-pain-stigma-and-barriers-to-diagnosis-and-treatment-217881

vagina_museum, to random
@vagina_museum@masto.ai avatar

"Finding Answers, Getting Support". The second episode of our 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

This video is subtitles for the audio you hear

halcionandon, to mecfs
@halcionandon@aus.social avatar

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭



@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

halcionandon, to mecfs
@halcionandon@disabled.social avatar

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭



@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

vagina_museum, to random
@vagina_museum@masto.ai avatar

Can't visit our 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

deborahh, (edited ) to random
@deborahh@mstdn.ca avatar

Same pesticides that have been causing infertility and suffering for women for, oh, 50+ years. 🤔 😭

https://mastodon.social/@GottaLaff/111417795821006989

vagina_museum, to random
@vagina_museum@masto.ai avatar

This week at the Vagina Museum we have three in-person events at our London home, and an online event for you to join from wherever you are in the world. Here's what you can enjoy this week... https://www.vaginamuseum.co.uk/events

vagina_museum,
@vagina_museum@masto.ai avatar

On Thursday, as part of our programme, take in a screening of Below the Belt, a groundbreaking documentary following patients looking for answers. The film will be followed by a Q&A with its director, Shannon Cohn. https://www.outsavvy.com/event/16699/below-the-belt-screening-qa-with-shannon-cohn

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