Umbilical Endometriosis - feeling alone on this does anyone else have an experience of it please?

Hello everyone :) I'm 33 years old and in the passed have suffered an ectopic pregnancy (kept my tubes) and a miscarriage. I've always had issues with bleeding after sex which I had cauterisation for two years ago. This seemed to solve the issue. However in April 2016 I developed a very tender ubmical which got worse and the pain was awful I was told by my gp it a hernia. As time went by and I waited for surgery to fix it the lump got bigger and bigger, discoloured blue/purple in appearance. However the pain was so bad an unbearable I was really struggling to go about normal life. I noticed i then began to bleed from my umbilical, on the third time this happened I realised it happened during my menstral cycle! The gp then realised this wasn't likely to be just an hernia, despite me having this bleeding issue two be before and me telling them this. Fast forward a lot of arguing with the NHS I am now doing down the private route and have a diagnosis of the umbilical module being endo. It's also on my ovaries and I have cysts, including blood cysts. I am waiting Laproscopy surgery.

I would really appreciate anyone's personal wcerianxes if they have had this, I feel pretty alone on this one. It's quiet rare and not much out there to research. I was told by my surgeon to prepare for the fact I may need ivf to get pregnant again. This has been a very stressful and emotional time for me. I look forward to hearing from you.

Best wishes - Lynn 🎀

13 Replies

  • If you have blood cysts (endometriomas) this often means you have deep endo elsewhere. The endo in your umbilicus will need to be treated by an endo specialist and as you are able to pay privately you can have the pick of who you want. If you are in the UK you need a BSGE accredited surgeon - are you seeing one?

  • Thank you for your response. I am seeing a Gynaecologist who has thankfully been the only one who has listened to me and knew straight away it wasn't an hernia. He has performed an MRI scan which has confirmed the issue with the ovaries so I do feel like I'm in good hands finally. I am waiting on a date for Laproscopy to treat the adhesions and the cysts and also need a bowel surgeon on hand in case it's spread there as I understand they can't see everything on scans. I'm very concerned about my fertility, although he has said to prepare for IVF I'm told they won't know the full extent until they go in so I'm anxiously waiting. Have you had this before?

  • Note that a general gynaecologist can only treat stages 1 and 2. Anything beyond that (including bowel involvement) requires extensive advanced excision training, and such specialists are usually only in the BSGE centres. So just be sure.

  • Thank you. I will put his name in the website if it works like that and check this out. He has assured me he's treated this type before so fingers crossed.

  • I have a FB support group where we can discuss surgeons if you would like to join:

  • Thank you I've just gone on to your page to request joining. Most appreciated.

  • Hi there

    I joined today to post about this exact same thing!

    I have/had umbilical endo. The exact same symptoms you've described (except I was on hormonal BC at the time and so they didn't coincide with my period, as I was having periods only rarely): a blue/black lump inside my navel, and tenderness/pain around my navel, which kept building/worsening until the lump burst. It was originally undiagnosed (I actually had a consultation with an endo specialist when I had it and they didn't recognise it) and was only diagnosed during my second lap 6 years ago because I'd come across the condition online, and asked them to check (there were no outward symptoms when I had my second consultation/op). I think it's now back, which is why I've signed up.

    Anyhow, my advice would be to please please please see an endo specialist. Check their credentials and experience, do not be afraid to quiz them. Primary umbilical endo (which is where it occurs pre- surgery/trauma) is extremely rare, and it must be dealt with by someone who knows what they're doing. I live in Greater London and am planning to travel to Sussex to see the consultant who dealt with mine back in 2010, as she was great (quite happy to give you her name in a private message if you'd like).

    Give me a shout if you have any questions/need support :-)

  • Hi there Barbie86 and thank you for replying. I don't want to sound awful but it's so nice to know I'm not alone as this has consumed a good year of my life. I am so sorry to hear of your journey you have my full sympathy as I know how painful it is, not having the right diagnosis too is draining and frustrating. I really do hope it has not come back for you but I am sure you will know all the symptoms :( as you say it is rare and I've struggled to relate to anything, mine is primary as I've had no surgery before... let alone on/near my naval. My gynaecologist does seem great (I am from Hampshire) but as you say it needs to be treat correctly so I'm hoping to check all this out as Lindle has kindly I suggested I do the same - thank you. Although I'm with private care I'm told that I need to use the specialist accredited by them but I'm sure I could argue this point. I can not believe a gynaecologist missed yours, it really does make you worry doesn't it. I was similar to you I knew something wasn't right and it wasn't an hernia and I googled bleeding from belly button while men straying and a journal article came up - I went straight to my gp who finally agreed I may have been misdiagnosed.

    I am eternally grateful for your response/advice and I sincerely hope you can get a resolve. Would be great to keep in touch on how you are doing.

    All the very best to you. X 🤗

  • Hi again

    It sounds like you're probably in good hands, but do check out their credentials. There is a big difference between a gynaecolist, an endo specialist, and then an endometriosis specialist who has experience of umbilical endo. The gynae I mentioned before who missed it was a world renowned/respected endo specialist. So it really does matter.

    Don't rule out the NHS. While waiting lists are longer, it may give you more options, and, as sucky as endo is, it isn't life-threatening. So I would suggest holding out and seeing a specialist even if that means waiting a while.

    Also,thank you for posting this: the timing is so weird! Also glad to feel less alone :-)

  • There doesn't seem to be a BSGE centre in Sussex. Things have changed a lot since 2010 just in case you want to consider options.

  • Hi, no there isn't. I originally went to Surrey, which I think I is still a centre. I particularly want to see this particular consultant because she was great when I saw her previously (great bedside manner etc), is very active when it comes to endo, and has dealt with primary umbilical endo specifically (which few endo specialists have due to the rarity of the condition). I won't obviously put all my eggs in one basket, and would suggest OP is equally as cautious, however, as I said to OP I do think looking further afield may prove worthwhile. Mine was missed by a top specialist (one of the consultants on the BSGE list at the time) and I honestly don't jot fault him; it's just highly unusual.

  • Hello, I also have similar symptoms, I'm 30 based in London, my belly button swells during my period and for 7+ days after, the last 3 months it bleeds during my periods. Waiting to see a specialist, after 4 years my doctor is finally listening to me, only last year I found people with the same symptoms, which leads me to believe I have Um Endometriosis. I saw a surgeon last month who wanted to remove the lump, but he didn't think it was connected with my periods, even though I explained the link.

    thank-yo for sharng

  • Best of luck. It is an unusual presentation for endo and your right there isn't much out there in terms of info or research. My consultant did a biopsy of my belly button when I started with symptoms in that area. It confirmed what we assumed which was that endo had spread to that area of tissue as well (I have a long history of wide spread complex disease). But the umbilical endo was perhaps the most painful and inconvenient due to bleeding outwardly for about 2 weeks every month (from mid cycle ovulation through to after my period would finish) and the pain could feel like having a piece of glass or sharp object inside the stomach with your tissue/flesh rubbing against it. Really horrible and depressing! I have just had my whole umbilical area removed whilst having my hysterectomy done by my consultant. It does look strange having no belly button but it doesn't bother me to be honest. They have said they can arrange a plastic surgeon to make me a new belly button for aesthetic reasons if I wish. I'm going to wait for a while to decide but don't think I'll bother personally (all of my care so far has been on NHS and not in a specialist endo centre, as my care has gone on for a long time now and I was very happy with my original consultant and his approach and have trusted him with my life several times now. If I was starting my journey now, I would go down the route of finding a specialist centre as they are now available and the best practice option). Good luck

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