Possible umbilical endometriosis

[Nickyh77]

Hello - hoping someone might be able to give me some feedback. This is the best place that I've found to explain my symptoms. For about a year I had pain directly in my belly button which I passed off as a hernia until 6 months ago when I started bleeding from my belly button during my period. Long story short I went to a gastroenterologist, dermatologist (twice) - one did a biopsy on my belly acknowledged that I had a growth but found it was benign, went to two different gynecologists in the meantime still experiencing belly button pain and bleeding during my cycle. I've told my gynecologist that I suspect it's primary umbilical endometriosis but nothing has been done with that. I've just learned from my most recent endometrium biopsy that I have endometrial hyperplasia so I will be on progesterone for 3 months and then have another biopsy to see if there are any changes hopefully to get referred to a general surgeon. Any insight anyone can give me would be a blessing. I'm thankful that everything is coming up benign but frustrated that I can't get this taken care of. Thank God for this forum bc otherwise I would've thought I was crazy

[sandy112]

Omgs I also had umbilical endometriosis for years the Drs did not know what it was but mine was finally removed when I had my excision surgery so I actually have a belly button now. And it doesn't bleed anymore. Make sure you talk to the surgeon about it they will more likely remove it thru surgery

[Nickyh77 in reply to sandy112]

Thank you for responding to me!! It means a great deal. I'm grateful nothing else is really going on but it's getting super frustrating not being able to get a good diagnosis on this. What did it take for you to get to the surgeon and have the excision. Could he feel the growth? How big was it? Have you had any pain since

[sandy112 in reply to Nickyh77]

My endo is stage 4 so I went thru so much stress to even be put on the waiting list and my belly button would give sooo big n turn black n bleed for like a week straight even when I came off my cycle I had to keep cleaning it Cover it so it didn't get wet. But your case doesn't sound bad so they should put u on the list quick my advice is push it.

[Nickyh77 in reply to sandy112]

Wow that's crazy!! I noticed this past month that it hurt much longer after my period than normal. I was going to try the progesterone for the theee months and then get referred but with yor advice I'll push for the referral sooner than later. Thank you!!!!!

[sandy112 in reply to Nickyh77]

Yh defo push for it Hun nothing is going to really help but getting it removed. Mine was very big it still has a lil sting to it at times but nothing like before

[Ashleynic in reply to sandy112]

I have umbilical endometriosis and have been booked in for my operation in March to remove this lump in my belly button that the blood comes from. Do you still get pain in your belly button now you've had your surgery ?

[sandy112 in reply to Ashleynic]

hi I have had no pain from my umbilical since I had the surgery but was stil in pain in other places x

[Souvie]

Hi, I've been living with umbilical endometriosis for a few years. Took that long for the gynaecologist to even agree that was a possibility. Yet to have a laparoscopy done but was offered depo which i am hesitant to take after years of being on different pills and implants since 18. Mine doesn't bleed though but hurts like hell! Every ovulation and period for days on end. The struggle is real.

[Nickyh77]

The frustration is definitely "convincing" everyone that I actually have this issue. I live in Las Vegas and I don't think we have anyone in the area that is remotely familiar with dealing with this. My gyno said it would be out of his scope b/c it's not gynecological (if indeed it is).