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I was diagnosed with pelvic congestion, May Thurner and other compressions as well. Seems like an unholy alliance of lower abdominal issues. I wonder though, if in ME it's more about the immune response rather than the amount/severity of endo that makes us more likely to experience severe...

I have endometriosis as well. I'm in a pretty big self help group in my town and several women think they have "CFS". They have fatigue and lower energy levels and of course a lot of other co morbidities that are common in endo as well (hashimoto, IBS etc.). I'm not diminishing their suffering...

I had an upper endoscopy without sedation, would not do it again (gagging, feeling of the endoscope inside your intestines. But people are different in what they can tolerate. It wasn't painful but very unpleasant for me). Edit: The endoscopy itself only took 10-15minutes, I could go home right...

What I find sad is that many of the difficulties that people with ASD are dealing with (e.g. anxiety, depression) might not have become that severe if the necessary accomodations would have been implemented from early on (school etc.). So the researchers are looking into biology while patient...

@lunarainbows Here in Germany we sometimes get told by endo specialists to take the pill as a vaginal suppository. It's supposed to cause less side effects by bypassing the GI tract. But of course please check with your doctor.

One more thing: Especially if you have deep infiltrating endometriosis have your kidneys checked as well via ultrasound. Endo can grow on the ureter obstructing it. This can lead to kidney failure. It is often is completely free of symptoms until too late. Again, very preventable and easy to...

I'm glad you finally found the root of your problem, Luna, even though so late as so many women with endometriosis. Not sure if I have already posted this, but think it's important for diagnosing, so I'll just write it down here. It's mostly from my memory of what doctors have told me and my...

Yes you need to try and educate them in order for them to help you (or rather not harm you) and at the same time really make sure you don't look like you're trying to educate them to be taken somewhat seriously. "Pamphlets" of any kind don't help in my experience. Even if they're scientific papers.

They've been putting themselves in the "dirty corner" with pseudo science. No outside help needed.

A common cause for chest pain that can even feel like a heart attack is acid reflux. Might easily be dismissed as a cause of nccp.

Maybe "attention economy" is a better word. Sick people have to take part in it and that is just wrong. I want to be a patient, not an activist.

This is in no way any criticism towards the ill that seek for help - they did what was necessary survive. In general though it's worrysome that our system is so broken and misled that often severely ill people only get help if they have the means & ressources to create publicity through good...

I've been taking it for 4yrs for headaches. I have never withdrawn from it completely but never had trouble reducing the dosage when possible. There should be a Pregabailn solution/drops as well. Maybe you can use that for smaller steps if necessary?

From what I understand he is on Twitter and a doctor that has had Long COVID (Dr Anna Brock*) reached out to him when she heard his story. With help of a non profit organization they organized his transport to a clinic that was willing to take him. The author of the article, Nina Weber, had...

No scam, he's a well known patient (advocate). I don't know why the slow reveal, maybe to give the original article more traffic? He had immunadsorption and Fycompa.

Same for me. There are different forms. Some have cysts, they are easy to see. As well as adenomyosis (endometriosis in the Uterus, thickens the wall), also some forms of rectovaginal endometriosis (under the cervix, visible with the eye even just using the speculum). Some endometriosis grows...

I'm glad it wasn't too bad! Just as an information though, endometriosis often isn't detectable in an ultrasound. You need a very well trained obgyn to catch it and even then there's no guarantee. The only way to be sure is a laparoscopy with taking samples. Not to scare you, just to let you...

Yes, the neurologist ist Prof. Kleinschnitz. He's doing a lot of psycho propaganda with a bad study and a loud voice :(

What he does is just despicable. He's pandering towards the yellow press and brags about publications in MSM (instead of journals) on Twitter. I genuinely think he should get a PR person (if he'll establish himself as a psych LC expert long term) because his tweeting just seems very odd.

Not painful, depending on the angle sometimes a little uncomfortable in my experience.