I have umbilical endometriosis do I have to lose my bellybutton?

[Kat619]

My doctor has told me that I'm going to lose my bellybutton in the process of dealing with this issue. Has anyone else had this happen or even heard of this? I'm kinda freaking out

[luthien]

The only way I can think of where your belly button would be affected; there's tissue underneath the belly button holding it to the abdomen, if that's cut which could be what your doctor is suggesting it can make an innie go out or flatter due to less support.

It may be worth ringing their secretary to chat with your specialist to see what they plan to do, as I've not heard of an actual belly button removal; they tend to keep it there as it's something that's part of us. If they need to remove it they'll stitch it up, but check out tattoo artists; they're amazing for post surgery looks. Google areole, nipple, belly button cosmetic / post surgery tattoos, they look so real and others look so cute by covering up it being missing with amazing designs!

[endopositive]

A friend of mine had this, she had no pain but it was bulging out of her belly. She had a quick op but yes belly goes in now but you can't really notice. She has been fine since.

[Afrohair]

If it comes out they will probably make a fake one with some other tissue I can’t see you being left with nothing and if endo is on your belly button they will just be removing that so it will just be excised leaving you with what you had already I wouldn’t worry it’s a simple procedure on your belly button if it’s on other areas it’s more of a worry than your belly button

[JessieT]

Hey!

I had umbilical endo which was removed last year. My belly button was really deep before and my consultant made it shallower and I now love it! 2 years ago I had the same op and they didn't change my belly button and It came back within 4 months...it's been 6 months and no probs so far 🤞. Don't worry I'm sure it will be fine...and even if they remove it...it's got to be better than endo in it.....

[Kat619 in reply to JessieT]

I agree, I mean I'm scared but the last 19 months has been a living hell. I just wanna feel semi normal and be active again.

[SEWMAD41]

After my last operation hysterectomy I woke up and after seeing my incisions I’d lost my belly button and nothing was said, like someone else said I prefer mine as it doesn’t seem so tight and anchored in me if that makes sense, you wouldn’t tell unless you looked really closely, you will be ok x

[Daisychain222 in reply to SEWMAD41]

I have never heard of this happening! I am wondering if you could get a tattoo of a belly button once you are healed? Just a suggestion 💕

Take care

[luthien in reply to Daisychain222]

yes!! there are some artists that focus on post surgery tattoos, they look so real

[Kat619 in reply to SEWMAD41]

Yeah that's why my doctor said he wanted me to know up front. He said he had a friend whose wife had a similar procedure. And woke up and freaked out. Because nobody informed her of the possibility of not having a bellybutton.

[Afrohair]

that’s wear high waist trousers come in x

[Luna678]

Hey, I had umbilical endo removed three weeks ago (I also had it removed from other places too).

I completely understand your concerns as I was also told before the surgery that depending on what they found, I might lose my belly button. It was something that really played on my mind. However, as my symptoms progressed I got to the point where I wanted the endometriosis out as soon as possible, and stopped worrying what it would look like.

After I had the operation I was told that I had a lot of endo in there. However, they did manage to keep it looking like a belly button (it’s just a bit smaller than it was before). The surgeon did a really good job and I’m so happy with the result.

I wanted to tell you this to reassure you that when they do go in, they might find that it is possible to keep it looking like a belly button. They just have to tell you the worst case scenario before you go in for the operation to make sure that you are prepared if that’s not possible.

Do you have any skin around the belly button that is currently unaffected by the endo? If so then it is very possible that they may be able to make it look like a belly button.

Has the gynaecologist mentioned a plastic surgeon at all? I was given this as an option. Some do this at the same time as when the endometriosis is taken out. Or there is the option to have it sorted later by a plastic surgeon after it has healed and this gives you time to make sure the endo doesn’t grow back there before the surgeon operates on it. Your gynaecologist will probably have a preferred option in terms of this so I’d recommend checking with them.

I wish you all the best, and if you have any questions about it let me know I know how difficult it is to find people who have had umbilical endometriosis as it is rare. Have you had an operation previously or has it developed there without having had a previous op?

[Kat619 in reply to Luna678]

Thank you for sharing I really appreciate it. My gyn has not mention plastic surgery just warning me it's a good chance that I would no longer have a bellybutton. I had two laps one at 14 and one 15. I'm 33 now and didn't start having symptoms til I was like 31. So I don't think it was because of the Laps but maybe.

[Nightingale89 in reply to Luna678]

Hi Luna678

Your right, it is hard to find people who have experienced the same issue with whom you can pick their brains. I hope you won’t mind if I pick yours?

I was diagnosed with primary umbilical endometriosis almost a year ago after I started noticing cyclical bleeding from my bellybutton almost a year before my diagnosis. My bleeding stopped after I underwent a diagnostic laparoscopy in which a tissue sample was taken for diagnosis. Since then I have been on a waiting list for excision surgery.

In just the last couple of weeks I noticed a lump appear in my bellybutton, which was very tender. So I went to my doctors and was prescribed naproxen for pain and swelling, which made a massive difference but now they don’t seem to be working, the lump has got bigger and I would describe my level of discomfort now being similar to post surgery.

I would love to know,

1) what brought you relief from the pain if you had pain?

2) did your symptoms seem to escalate quickly?

3) how much did it impact your life at its worst?

I hope by now you are feeling better after your surgery!

[Luna678]

Hmm yeah it’s impossible to know isn’t it. Mine didn’t start showing out of my belly button until over a year ago, but I reckon I probably had endometriosis since I was young as I had problems with my periods since around age 14 (I am now 28 and have only had the one operation). So who knows how long it was growing inside for before it started showing on the outside.

That’s quite young to have gone through the operations, that must have been hard for you at the time. I guess they diagnosed you with endo after the first one?

[Kat619 in reply to Luna678]

Yep, then a new doctor a specialist in the field wanted to "see for himself" because I was "too young" to have endometriosis. So he performed the same surgery a year later. And came up with the same diagnosis lol. It was hard but more of a relief doctor's had told my mom that I was "faking" or maybe being over dramatic. It got to the point where I started second guessing myself. Like hey these guys have degrees. I'm just a kid in pain, maybe it's normal to double over in pain. Maybe all women feel like this and I'm a big baby. Luckily/unluckily my mom suffered from debilitating periods since she was 15 so she has/had my back. And knew something was wrong. It's crazy where this stuff grows my mind was blown when my bellybutton started bleeding. And the pain like, I honestly thought at 30 I had a understanding of this disease. It then threw me a fricking curve ball. If you don't mind me asking how did you get diagnosed? And were you shocked about the bellybutton thing?

[Luna678]

That’s so bad that you had do go through the same thing twice just so they would believe you!! I’m so glad your mum was supportive, that must have made a huge difference.

My belly button originally started bleeding in 2018. There were little lumps coming out of there and I first went to a prescribing nurse and they gave me a cream as thought it could be an infection. I never thought it looked like it was infected though.

After a little while I realised that it was bleeding alongside my periods. I obviously got really worried about it so I kept googling!

The main diagnosis I kept coming up with was umbilical endometriosis. So I went to my GP and said that’s what I think it is and asked her opinion. She agreed that might be possible and then referred me for scans and to gynaecology. Neither the ultrasound or the MRI showed endo. I then had the surgery a few weeks ago which confirmed that it was endometriosis and it was also in a number of other places. It has all been removed now and I’m feeling so much better 😊

I’m so glad I have a diagnosis now, as knowing what it is does make such a difference! I always had really painful periods and had time off school, then work etc. But I’d never heard of endometriosis and it had not been mentioned to me even though I’d been to the GP a number of times about my problems.