Umbilical endometriosis

[Nat1985]

Hi, new here 👋🏼. Does anyone have experience of umbilical endometriosis? I have this diagnoses and am on a very long waiting list for a laparoscopy. I saw a surgeon yesterday so asked me if I cared if they removed my full belly button!

[claudia_91 Moderator Endometriosis UK]

Hi Nat1985

Welcome to the endo community! 😊 It's lovely to have you here.

I don't personally have experience of umbilical endometriosis, but it's very possible that someone else does who may see this... that must have been a shock when the surgeon asked about removing your belly button. Remember that they have to have your consent.

In preparation for your surgery, Endometriosis UK has a useful Laparoscopy Information pack which you can read here: endometriosis-uk.org/sites/...

Waiting times are very long as you say. If you feel you would like to speak to someone about your experiences in the meantime, Endo UK also have a helpline run by volunteers. The current rota is here: endometriosis-uk.org/helpline

I hope you find the help and support you need. The community is always here for you! 💛

Take care,

Claudia

[Nat1985 in reply to claudia_91]

Thank you so much for replying. I’ll take a look at the links. And I’ve managed to find a few threads from last year on umbilical endo so I’ve been having a read of them.

Thanks again

[Tfg1991]

Hello 👋🏼 I have my surgery in a few weeks time but main symptom that initially brought me to the dr was bleeding bellybutton each month when I was on my period. It also had a little lump just above the belly button on the inside which swelled during this time, and made wearing high waisted jeans quite painful.

I’ve had my ct scan and ultrasound and they can’t see any endo on my umbilical cord but are going to remove the lump and check it as part of surgery. Since coming off the pill 1 year ago, all symptoms have flared up with main pain in the right shoulder and chest down that side. They think this is endo on my diaphragm.

I see a lot of info about endo but not umbilical endo so I can relate to what you’re going through here!

…nothing mentioned about any removal to me yet tho 😬😬😬😬

[Nat1985 in reply to Tfg1991]

Hi, did you have your surgery? I got to keep my belly button as they couldn't actually find any endo there. Even though scans showed up fluid underneath the umbilicus, they couldn't see it when they operated. But since they opened up my belly button then stitched it back up, all symptoms appear to have resolved! Sounds daft, but i feel like it was as it if wasn't closed properly.

[ana_pchr]

Hi! I had umbilical endometriosis and did surgery about 3 years ago. I used to bleed from my belly button even outside of my period and it was pretty annoying but no pain related to that. My belly button had to be reconstructed in surgery and looks better now than the original one. ✨

[Doughnutworry]

Hi! I had an inflamed lump removed from the umbilicus which they thought was a cyst but it turned out to be endometriosis! Now I don’t have a belly button, just a dent and a scar. I’m thinking of getting a tattoo there! Did you get the surgery in the end? Does anyone know what happens next? If you have it in the umbilicus does that mean you’ve got it elsewhere? They didn’t do the laparoscopy for me since they thought it was a cyst so I don’t know if there could be more.

[Nat1985 in reply to Doughnutworry]

Hi, yeah I had a laparoscopy but my belly button stayed in tact. They couldn't find anything wrong with it but since the surgery, I no longer have the symptoms I did have, such as leaky fluid coming out of it that stunk! They did find endo cells on my left broad ligament though. They were cauterised (i think) and I feel so much better. Apparently i had a mild case but the cells were exactly where i had been complaining of the worst pain.

[Doughnutworry]

Oh wow well I’m glad that it solved the problem and you could keep your belly button too! Yeah it’s weird apparently mild endometriosis can still cause severe pain based on what people have been saying on here!