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Endopaedia - a study site @endohealth.bsky.social · 26d

🔆 Vitamin D might play a crucial role in pain control for #endometriosis.
🔅 Low levels of circulating vitamin D have been associated with more severe stages of disease, and some studies show that boosting #vitaminD can significantly reduce pelvic pain and #dysmenorrhea.

Endopaedia - a study site @endohealth.bsky.social · Sep 12

🪙 The hardest part isn’t always the pain. It’s the constant re-introduction to yourself. The reminder to stay in the present. -- Another line of thought for my tiny manual’s margins.

📖 If you are interested to follow the journey of my book, sign up for news here: tinymanual.space

Endopaedia - a study site @endohealth.bsky.social · Sep 8

Explore #research groups driving #scientific discovery, and companies developing tools and novel #therapies in #endometriosis!
directory.endopaedia.com

📣 The first directory of its kind - uniting global players in therapy & research, all in one place.

Endopaedia - a study site @endohealth.bsky.social · Sep 6

Words matter. Sometimes they’re all we have to pin down the shifting.
I’ve been writing a small lexicon for my tiny endo manual. But a proper endo book isn’t just about facts — it’s also about reframing language and perspective.

#endobook #languagematters #shapingreality #lexicon #endofight

Endopaedia - a study site @endohealth.bsky.social · Sep 4

Every wondered who is working in #endometriosis #care, #detection, #diagnostics, #apps, or #research? I have created the Endometriosis Directory (codename EndoEther) to unite all the companies, institutions and groups who work on and fight for a better future in endo care! directory.endopaedia.com

Endopaedia - a study site @endohealth.bsky.social · Aug 31

Share with someone who needs it!

(English and German version)
#share #endopain #trust

Endopaedia - a study site @endohealth.bsky.social · Aug 27

"Yesterday’s pain didn’t look like today’s. Our body edits its own script."
Working tirelessly on another page in the manual-to-be. 🎯 The goal is to capture all the things I consider essential in dealing with endo, but with a grin through the pain.

#endomanual #bodyscript #pain #writing #medical

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Endopaedia - a study site @endohealth.bsky.social · Aug 24

New evidence: For patients with a single rectal endo site, non-invasive HIFU offers similar symptom & quality of life outcomes to surgery, with far fewer complications.
tinyurl.com/HIFU825

(DOI: 10.1002/ijgo.70478) 🌸

#Endometriosis #HIFU #WomensHealth #rectalendometriosis

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Endopaedia - a study site @endohealth.bsky.social · Aug 19

#Endometriosis patients need allies in healthcare, not gatekeepers.

A recent study is looking into "What People Living with Endometriosis Want You to Truly Understand" and highlights the need of patients to be heard and seen.

🔗 Link: buff.ly/T0F77B7
Sign up for more here: buff.ly/aXHAEVQ

Endopaedia - a study site @endohealth.bsky.social · Aug 13

This is the first of many fragments from my desk as I work on a tiny survival manual for living with endo. You’re welcome to follow along as it takes shape.

#endodiagnosis #survivalguide #tinymanual #endopaedia #endometriosisawareness #endo

Endopaedia - a study site @endohealth.bsky.social · Jul 16

#Endometriosis diagnosis often takes years. My flowchart shows how expert insight + AI-driven biomarkers & imaging (see #Diamens and #ScanvioMedical) can speed this up. How can tech & clinical skills unite to cut delays? Let’s connect!

🔗 endopaedia.com/diagnose.html - English page underway.

Endopaedia - a study site @endohealth.bsky.social · Mar 17

you cannot win when it comes to #endo.
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📣 we #endowarriors demand new non-hormonal solutions to stop the growth of lesions everywhere in the body and to tackle the pain. 🤝
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#endopaedia

Endopaedia - a study site @endohealth.bsky.social · Mar 14

no #pain no gain.
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fighting for new #treatments in #endometriosis. go to www.endopaedia.com for updates.

Endopaedia - a study site @endohealth.bsky.social · Mar 12

We are nearing mid March, the #endo awareness month. Sometimes there is only 1 thing to do - survive.
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#femalehealth #healthadvocacy #endowarrior #survive

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Endopaedia - a study site @endohealth.bsky.social · Mar 5

#Pain can ruin your day. In the case of endo even the majority of your life. With current fast developments in biotech and AI, there is hope on the horizon that the complex mechanisms of #neuro-immunological diseases like #endometriosis, #ME/CFS etc. will be decoded and relief brought to us 🤝

Endopaedia - a study site @endohealth.bsky.social · Mar 2

#Endo pain is NOT #period pain.
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#endowarrior #chronichealth #femalehealth #inflammatory

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Endopaedia - a study site @endohealth.bsky.social · Mar 1

March is #Endo Awareness Month! Although the constant #symptoms are a regular reminder for sufferers of this devious illness. Running through dozens of "experts" who barely have answers or resolutions can be disheartening and tiring. A big hug to all of you endo- #warriors out there!
#findacure

Endopaedia - a study site @endohealth.bsky.social · Feb 25

Sometimes #sarcasm is all there is. We need a #cure for #endo. Sooner than later. #Surgeries and #hormones cannot be the eternal answer. 🫥

Endopaedia - a study site @endohealth.bsky.social · Feb 19

It is time to find a #cure. Not just "suppressants". #endofighter #chronicdisease #femalehealth

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Endopaedia - a study site @endohealth.bsky.social · Feb 13

#Endo patients are often overwhelmed with daily tasks whilst managing their own health #advocacy. 🤯 Especially when it comes to finding the right medical path to get better, solutions often seem far and few. Hang in there, #endowarriors! 🙋‍♀️

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Endopaedia - a study site @endohealth.bsky.social · Feb 9

No, pregnancy is not a #cure for #endometriosis. Some obgyns still seem to think or at least communicate that. @thingsdoctorssay.bsky.social

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Endopaedia - a study site @endohealth.bsky.social · Feb 8

Medical gaslighting: "it's just your #period cramps", "you have #IBS", these and a lot more are suggested when an #endo patient first seeks help. When women perceive #pain it is still not taken seriously enough. With time things slowly get better, but the whole iceberg is not quite visible yet.

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Endopaedia - a study site @endohealth.bsky.social · Feb 7

Sometimes beaming up the #endo and make it disappear would be the best thing to happen to a patient. As with every #chronic condition we barely get a break.
#UAP #beamup #femalehealth

Endopaedia - a study site @endohealth.bsky.social · Jan 30

Thankfully as of 2025 various biotech companies are working on developing non-hormonal solutions fighting #endometriosis: #insilicomedicine and #fimmcyte being two of them. Read more on these developments here: endopaedia.com/blog.html (make sure to select your language in the top right corner)

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Endopaedia - a study site @endohealth.bsky.social · Jan 27

Sometimes we lack the strength ... #endometriosis #warrior #endoawareness #strength

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