OMG me too!!! It's hurting in and around the belly button and behind it. When it flares up, I get pain down to my urethra which varies from a slight electrical feeling, to burning, to knives stabbing my vagina area. I want it removed. MRI and ultrasound were clear. Was referred to general surgery. This guy does hernias, cysts, gallbladders---but I suspect endo may not be his specialty. I will ask plenty of questions. Would much prefer a laparascopic surgery by a gyn surgeon, but my gyn told me it was too risky. Switching docs soon!

Hi ladies, I know this was posted over a year ago. I was just diagnosed with umbilical endo and saw a specialist this am. It's taken a while to get here as they initially thought hernia too. She said it was very rare. I haven't bled through my bb yet but that sounds terrible! How have you been? I'd love to talk more!

Hi @A MyEndometriosisTeam Member. You're not alone. I was diagnosed with umbilical endometriosis and did a lap last Dec. My navel was completely cut out and I was put on meds ( Lupron, Norcolut) to suppress my period and I guess to help with fertility. However, in March, I realized the navel was growing again. There was a little pain and then 1 day I saw something on my top while I was at work. I swore it was pen ink... To my surprise, my navel was bleeding... SO it's back... I don't think this thing will ever stop growing.
I hope you will be fine though. You can message me for any addtl details you may have.
I too realize that this seems to be uncommon, and I'm running out of information through research...especially with the recurrence of the swelling *sighs*

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A MyEndom...

Yes! I recently started bleeding from my belly button during my period & after a couple months of misdiagnosis a biopsy was done in December and confirmed it was umbilical endometriosis.
I don't have any useful information or help to offer. I just wanted to let you know you're not alone!

As for the last bit about doctors not knowing what to do about it, I suggest joining endometropolis on facebook and posting this there (there are some doctors in the group). Contacting the Center for Endometriosis Care in Georgia would be a good idea too. I'm not sure how this kind of thing works but since it is a very rare presentation they may be really eager to test it and whatnot.