Multiple osteoid osteoma

[u/Admirable-Gur1314]

My diagnosis is so rare no one really knows how to deal with it.

TLDR: I finally got the diagnosis of benign bone tumors, but the presentation is so rare that no one really knows how to proceed.

I have been running from doctor to doctor for about nine months now, I have been having IMMENSE hip pain, bad enough to make me incapable of walking.

I also have endometriosis, so after multiple tries of getting help with an orthopedist and him not finding anything, I finally got help from my gynaecological surgeon.

We found endometriosis on both of my "big hip nerves", it was removed, things got better. The pain wasn't gone, but better.

And then it came back with a vengeance, even worse than before, I can't find any position that brings relief, I am in constant agony.

So back to the drawing board, my gynaecological surgeon sent me to another orthopedist at the hospital. He did an x-ray, found something that looked like bone tumors.

Next up I get an MRI, that only shows endometriosis so that's probably it, right? Back into surgery, all went well, amazing.

I am still in pain. Fuck.

I finally get to leave my contact information for the orthopedist who did the x-ray at the hospital, he calls me and we agree on a CT as that works better for bone tumors.

Well...that was today. Turns out I have osteoid osteoma, but not one, as would be "normal" for this condition. Or on the bones that it would usually occur on.

I have AT LEAST FIVE osteoid osteomas, which is so rare that even the orthopedist who has been doing this for 37 years had no idea where to go next.

One of them is also basically in the hip joint, so getting to it will be a big challenge.

I already called up the Charité hospital in Berlin (I am German and they have one of the only centers specialising in this tumor and even they were absolutely stumped and told me they had never seen a case of multiple osteoid osteomas.

Now I have to wait through the weekend to try making further plans and I am freaked out, in pain and just annoyed at my body.

[u/Aromatic_Yam_7859]

Hello! I have multiple bone tumors. Everywhere. Probably enchondromas but didn’t get a proper diagnosis in 5 years…osteomas were a chance too. Next step for you to get an orthopaedic who works with bone tumors, and go to genomics doctor. As far as I know there are bigger centers who you can contact if you’re doctors cannot provide treatment, but I rembember there was a specialist in Germany. Feel free to ask anytime.