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Umbilical Endo... Anyone Else?

A MyEndometriosisTeam Member asked a question 💭
Alnwick, UK

Hello!

I have recently been told I have umbilical endo, unknown as yet where else it is yet and I also have dermoid cysts on and around my left ovary. I am starting Prostap injections today with add-back before looking at surgical options and just wondered if anyone else has it in their umbilicus?

Thanks

January 11, 2018
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A MyEndometriosisTeam Member

Hello! I also have a painful nodule growing out of my umbilical for about a year. It is quite large... it was mistaken as a hernia. Now that I've done my own research, I'm not sure how my family doctor could have thought it was a hernia... They do not look the same at all.

Anyways, I have stage 4 Endometriosis. It has taken over my entire lower cavity. The pain from the umbilical nodule is worse than the lower cavity because it is everyday and constantly all day. It does shrink and expand following my menstrual cycle. It even ruptures (bleeds) as endo trial tissue does when I am menstruating. It's an odd symptom of endometriosis and hard to clean from time to time. Q-tips are my best friend!

I'm planning to have surgery in the new year. My doctors need some more tests to confirm the size before going under the knife.

I'm researching plastic surgeons post-op to reconstruct my belly button after surgery. So I'll go under at least twice to feel less pain, and feel confident in my lower abdominal area.

September 30, 2023
A MyEndometriosisTeam Member

Sorry for the delayed response! I found a painful nodule in my belly button and went through the whole ruling everything else out. I haven’t had surgery yet but will. We believe it is also on my rib or gall bladder area but it could be referred pain. I’ve started to have a lot of other body pAin as well, most recently in my right shoulder and hand. What about you?

January 21, 2018
A MyEndometriosisTeam Member

Hi! Ah it’s nice to know we aren’t alone. This doesn’t seem to be all that common! How did they diagnose it?

January 11, 2018
A MyEndometriosisTeam Member

Hi! I just joined the site, too. Was diagnosed with umbilical endo yesterday. I have a very painful lump in my belly button I want to have removed. I haven't started any treatment yet so can't share advice, but wanted to say hello!

January 11, 2018

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