Endometriosis UK
37,513 members32,950 posts

Just been told I might have umbilical endometriosis

Have just been diagnosed with possible umbilical endo and being scheduled for an op in a couple of months, has any body else got this type of endo?

45 Replies
oldestnewest

Not heard of anyone specifically having and endo nodule growing at the belly button, but certainly some ladies on he forum have developed edno in their surgical scars from accidental transfer of endo cells which nest in the new location , bleed every month building up in to a nodule of trapped endo blood which then needs removing.

Itwill be much the same with the umbilical endo. On the plus side very easy to get access to.

If you have had any previous lap ops - the belly button hole is the biggy and might explain why you now have endo trapped there. Can you see the endo externally or is it under the skin as a lump? Just out of curiosity sake.

Reply

Hello! Yes I had endo removed from my belly button!! I was experiencing all the usual debilitating endo pain for a few years plus swelling and agonising pain in my belly button. I had endless visits to the doctors and hospital and was told by two specialists that I had a umbilical hernia. I was also referred to the gynaecologist because of all of my other symptoms. She was amazing and was sure that my belly button was endo. I have no surgical scars and therefore no reason to have endo there, but she insisted that I had joint surgery with her and a hernia surgeon to sort my belly button and also have a laparoscopy at the same time. I did have a small hernia that was repaired and a nodule removed from my belly button that turned out to be endo. I have now been referred to the lead endo consultant (who is nationally recognised) and in his 20 plus years experience has only ever seen two other cases of umbilical endo, so we are rare!!

Since having it removed my belly button has healed beautifully and it was a huge relieve to have it gone as not only was the pain unbearable (as you probably well know) but it looked terrible, it would swell and turn purple and feel like it would burst. I do hope that yours isn't too bad and that you can get it removed asap so that you don't have to go through too much pain.

Unfortunately for me it's not over yet as the lap discovered that I have severe endo and I'm in a complete mess! I am now waiting for my date to have a total hysterectomy, bowel resection and removal of endo and lesions hopefully early in the new year. I can't wait.

If you want to know anything else, just let me know, I'm happy to help! XX

2 likes
Reply

Thank you for posting, I'm so glad i'm not the only one! Mine started around September time after I had my contraceptive implant removed as my and my husband had planned to start a family! It just started with a sore belly button and a bit of discharge to begin with a the docs just gave my antibiotics but they didn't seem to do anything. To cut a long story short I eventually got admitted to hospital but again even the doctors there really didn't know what it was and the doctors even burst the lump that was full of blood I could have killed as it hurt so much!! They then discharged me a couple of hours later and said they would organise an emergency ultrasound (which took 2 weeks!!!) Then nothing showed up on the ultrasound by this time i was beginning to thing I was being a hypochondriac and imagined it all! Luckily they had already organised an appointment with a consultant, but a week later i was in so much pain my hubby took me to A&E and they thought it was an umbilical sinus. When I eventually saw the consultant he still had no idea and said he's need to research it. While all this was happening I started to notice a pattern with my periods as soon as my periods started I would start to get severe pain in my belly button and the lump would start to grow and bleed, the bleeding would last about a week and the lump would get really big and start to turn purple until eventually it would sort burst (not a pretty sight), the lump would then start to shrink again but i'd still be in pain for at least another week then slowly the pain would subside to the point it was actually bearable but never actually go away completely then it would all start again with my next period :-( when I explained all this to the consultant that's when he came up with umbilical endometriosis diognosis. Anyway now I've got to wait till Feb\march before he can operate to know for sure. The thing I'm worried about most is having fertility problems afterwards as I'm desperate to start a family. Anyway that's my story, it's nice to find someone going through the same, although yours sounds so much worse and really hope you get it all sorted soon xx

2 likes
Reply

Hello again! That definitely sounds like endo to me, your story sounds just like mine! It would be good if you could have a laparoscopy done too so that you could find out if the endo is affecting your reproductive organs in anyway, ask to be referred to the gynaecologist if you haven't been already. Maybe it would be helpful if you tell them that you are aware of another case. (I'm happy to give you more details if you like). Be prepared it does take time on the NHS to be seen, but I have the same surgeon as if I were private, it just takes longer!

I am 40 and thankfully have my family, so the hysterectomy is the way to go for me, I think that it is the easiest option for someone my age. I am sure that you will be well advised and looked after if you want to start a family. You don't always hear of the positive stories from women that have had endo and get on with their lives and have a family I suppose they no longer need websites like this! But since I was diagnosed I have heard so many stories of happy endings, so stay strong and be as positive as you can. I am beginning to think that everything happens for a reason, because of the complications with my bowel being attached to my womb I had to have a flexible sigmoidoscopy (camera up the behind!). I had a polyp removed that showed signs of cancer cells, so am back in this Friday for a full colonoscopy to check there are no more. So if I hadn't had the endo, it wouldn't have been found and who knows what could have been in store for me a few years down the line.

So, I have gone on enough now!! Good luck to you, keep in touch XXX

2 likes
Reply

Hi before you get that hysterectomy please go to HER foundation website. My mom got that surgery and it meat her life up I'm such a big way.

Reply

I have this same condition. What has happend to your condition since than?

1 like
Reply

Hi! Have you gotten it checked out yet?

I currently have 2 lumps one directly above my belly button and on on my belly button. I've been to 3 Drs and no one knows what it is.

They told me it may be an umbilical hernia (I have had 2 c sections) but last year I had a surgery to remove endo from my abdominal wall.

I am such a hypochondriac I hate knowing there is a lump there and not knowing what it is. I have an appt with a surgeon on Monday and I'm hoping someone can help me!

1 like
Reply

I have just been diagnosed after a biopsy that I have umbilical endometriosis. I've been suffering for 20 yrs with horrible menstrual pain. I am only 33 now. I've had this umbilical pain for 3 yrs but my Dr just kept telling me it wasn't related and to see my general physician. Finally one day while working I began bleeding from my belly button and that's what sent me to the ER! They said I had appendicitis and I went in for immediate surgery. During surgery they found my appendix, an area of my small and large intestines were all glued together by endometriosis. Since that surgery, I'm still with the same pain and now have to have an umbilical excision. Im nervous but ready to be done with pain and bleeding from my belly button. How long was your recovery after this surgery? And how does your belly button look? It's such a relief to find I'm not alone! You are correct, we are rare! In the meantime, I hope you are feeling relief.

1 like
Reply

This is exactly what has happening to me right now! I was told I have an umbilical hernia, however the pain I feel there is ALWAYS related to my period (at the same time as everything else flares up... usually this kicks in at its worst about 10 days before mensturation.

It sounds like you have gone through a lot - I hope things have improved 2 years on. I'm only just at the beginning of investigations - seeing a gynaecologist on August 10th. I'd be interested to know who the lead endo consultant was (perhaps you could PM me?) xx

1 like
Reply

Hi I actually originally got diagnosed as an umbilical cyst and a small hernia (unrelated), just had surgery last week and they repaired the tiny hernia with just 2 stiches and instead of the cyst it was endometriosis! I literally had my follow up today and made an appointment with my OBGYN today as well so I don't have much information yet. Do you have anymore information to share. This is a crazy revalation for me! Ps... I know this thread is over 3 years ago... but just started my googling ;)

Reply

I was just recently diagnosed with this as well. Two months ago I was at work and panicked when I noticed blood on my shirt from my belly button. I had a problem foryears with pain and swelling there always during my cycles and lasts for sometimes 2 weeks only to start again duringthe next cycle. The day I was bleeding, I went to the ER and they of course, never saw anything like it. I got asked if I bumped into simething, if I had a belly ring, if I picked at it...etc...finally, after having a CAT scan I was told I had appendicitis and needed immediate surgery. During surgery the found endo gluing my appendix with my small and large intestines. They removed the appendix by taking part of my small and large intestines. They also biopsied my belly button and that is how I was finally, after over 20yrs of pain, was diagnosed with endometriosis. They also found lesions on my right diaphragm. At this point I will need the surgery to have them remove it from my umbilicas. Since the last surgery, it has bled again during my cycles. It is too painful to put in words.

1 like
Reply

Hi Janaenaebonita, Sorry it's taken me a few days to reply, but I have been in hospital having my endo removed!!!! Sorry to hear you have a similar problem to me, although yours sounds a lot worse with having endo gluing your intestines and appendix together. I had surgery on Monday and my surgeon has completely removed my belly button so now I've just got a smallish scar wear it was, but thankfully doesn't look to weird. The first few days its been quite sore and is still weeping but I'm just trying to take it as easy as possible and give it chance to heal.

The umbilical endo sounds exactly like mine. Everytime I started my cycle the pain in belly would be unbearable and it would became swollen and then start to bleed (the first time I really freaked out!) then even though my period would only last 3 or 4 days the bleeding would continue for up to two weeks, then it would eventually calm down but then weep with a smelly discharge for about another week, eventually leaving me with about a week of very little pain before starting all over again. I've got an appointment in a couple of weeks to see my surgeon again to get my results and to see if he managed to remove all the endo, so fingers crossed as I am 33 also and am desperate to start a family with my husband so I just want this all over with and hope that I don't have any other problems.

1 like
Reply

Hi Welsh-girl, thanks for responding. This is literally the first time I've been able to interact with anyone with the same symptoms. I'm happy you were able to get it removed and hope that it really helps you! I can't imagine that it feels great right now but I hope you feel great after your recovery! I hate that I had one surgery and now I have to have another. I am really looking forward to resolving this, though. At least I hope the surgery will do the trick. How long did your surgeon estimate your recovery to be? Im sure everyone is different but im just curious. How did you pick your surgeon? Has he had another case like ours before? We are so rare, I'm not sure how to go about this. My OBGYN hasn't , even dealt with this. Anyway, I hope you have a great recovery! No need to rush to reply. ;)

1 like
Reply

BTW, we are the same age.

Reply

Wow! I'm feeling all you guys! I m 32 years old no children. I was diagnosed with Endo two years ago after having fibroid removal. Anyway, I have the exact same/similar symptoms as well. I have Endo in my navel and is scheduled to get it removed cuz Endo has got in it. I was told first it was a hematoma, then I have an umbilical hernia. So, it really hasn't been diagnosed yet. However, I had an ultrasound done on my upper right quadrant because I was having pain in that area with nausea, vomiting, and sever stabbing pain and dizziness. After the ultrasound came back everything was negative. But I'm wondering if the Endo is the culprit of this. My family and friends were saying that it was all in my head and stuff. But I have this feeling that something is not right. It feels good not to be alone. Because this is rare! Also too I have 8cm fibroid that is located on the lower part of my uterus. The fibroid was the only thing that shown up on the ultrasound machine. They called it a mass. The upper right quadrant is the right kidney, liver, the aorta, gall bladder and the appendix. The surgery that I had two years ago was to remove fibroids the gyne who did the surgery said he saw some Endo. I asked him, if this was something that I should be concerned about....he said no.

1 like
Reply

Reading your posts has made my day and made me cry at the same time. Not made my day that you ladies are ill but that I'm not alone. I have also been diagnosed with umbilical endometriosis and was operated on last Monday. No one (medical professionals or other) has ever heard of having endometriosis in the belly button and I have had to explain what I'm going through to so many people. To read what you ladies have written describes exactly what I'm going through and how I'm feeling. It's just nice knowing I'm not alone, that someone knows how it feels, that it's not just me.

I'm 32 and it's taken so long to get to this point. After endless appointments, nearly having my op cancelled because of high bp, years of pain and feeling horrible I had the nodule in my belly button removed. I had experienced the same as you, awful pains, a lump that got bigger and hurt more each month and bled for a few days after my period started. The pain was also lower down, on the left side and although it was worse at certain times of the month, it hurt all the time and was getting worse and worse.

It started to affect my life...I'm a teacher and can't keep taking time off work so am often/was (I'm being hopeful!) found with a heat pad, doubled over in pain. My friends have been very supportive but I hate having to cancel plans, not make plans in case I'm too ill, lie on their floors rolling round in pain or doubled over clutching my side in cocktail bars. I tried to carry on as normal even though things got tough (my belly button bursting and bleeding all over my gym top during a class was a real low point) but I carried on.

I just keep 'carrying on' but keep loosing it when I think about the future...will the pain come back? Will it ever go? Will I be able to have kids? How bad is it? I guess my next app with my gynaecologist will help with some but I bet she won't be able to tell me all I want to know.

At the same time as removing the nodule, they gave me a laparoscopy...going in at 4 points and removed multiple deposits if endometriosis...all over my left ovary, my bladder and both Fallopian tubes. I was still woozy after surgery when the surgeon told me what happened...so I don't really know....I've reread the notes from my operation so many times but they don't make much sense to me!!

I used to be so happy and love life....now I feel lost, worried, anxious, depressed and alone (even though my husband has been fantastic and I'm lucky to have a cute dog here with me keeping me company). I know I've got to keep hopeful that this could be it but I just keep remembering the surgeon saying how severe it was/is and it makes me think this could be me for life. Doesn't help that my belly button is still really hurting

1 like
Reply

HI purplecupcake, first I'd like to say I completely empathize with you! Almost all or probably all of your feelings toward all of this I have and still feel especially during my cycle. I hope the surgery helps you. From what I have researched (Which was very hard to find) the whole umbilicus needs to be removed in order to get relief. The case reports I found showed that these women had not had recurrence in years after removal (excision) and reconstruction of the belly button. It is more tham frustrating that this si so rare and our DR'S don't listen to us when we explain our symptoms. Use bing or google to search for "umbilical endometriosis". I was able to find a few case reports.

I hope to get mine done in August or September. In the meantime I'll try to stay positive about his whole thing. It cam be very depressing and eats at our quality of life. I do find that when I eat a gluten free, dairy free diet I feel better overall. The pain still exists but is slightly better and my attitude is better. I wish you the best with recovery and future progress!

1 like
Reply

Hi purplecupcake, I'm sorry to hear your are going what I've been through and what Janaenaebonita is also going through. But I can tell you both there is light at the end of the tunnel, I had my op just over a week ago now and I'm healing well apart from a slight blip of getting an infection in my wound! But I've been to my GP and got some antibiotics so I'm hoping that will start to clear in a few days. As far as I am aware my surgeon has completely removed my belly button and any infected tissues around it and I'm now left with just a 2 inch scar were it once was.

Janaenaebonita you asked what they recovery time was, my surgeon signed me off work for 6 weeks but didn't put down that i could return after 2 weeks if the pain allows but no lifting extra for the full 6 weeks. It looks like I'm probably going to be off for at least 4 weeks due to the infection though. I'm really hoping this surgery has worked as the thought of carrying on with the cycle of pain and bleeding it too much to think about. I suppose I'll only really know when I have my first period which is due in 9 days time so I'll keep you posted on that! And if the surgery has worked on my at least it will give you both hope that it will work for you too. x

1 like
Reply

Welsh-girl, you sound very positive about your surgery! I'm happy to hear that despite the infection. I wish you well with the rest of your recovery. And I would love to hear an update!

1 like
Reply

If you don't mind me asking, how have you been since your umbilical surgery? Mine is now scheduled for August 7th. I'm curious as to what to expect. Did you also have a lap?

Reply

I hope this may help you. I just recently had my umbilical removed due to having endometriosis in it. I had umbilical endometriosis. It came about from having fibroids removed from my uterus two years ago. I kept bleeding from the umbilical two weeks before my cycle. Then it would stop. I had to be aggressive or kept pressing the issue because my GP and OB/GYN had no clue what was going on with me. The only was I got disnogsed with umbilical endometriosis was when I told the surgeon my story about my umbilical bleeding before my cycle. The surgery was outpatient and I was in surgery from 12:30 to 1:05. The surgeon cut out my umbilical. Two weeks for recovery, I can't push, pull, no excessive bending, I can only lift no more than 10 pounds ( American weight). I woke up with stitches and surgery tape covering it. I couldn't shower until 48 hours later after surgery. My stomach is swollen and my midsection is pulling from both sides to close

the stitches. Because of that my lower back feels tight, it's not pain, but a firm tightness. When I sleep I have to change sides and avoid sleeping on my back. The Dr. prescribed me hydrocodone/APAP for pain. The funny part is at first I was told I had a hematoma, then a hernia. I go see my Dr. next week for postop. I hope you will find this helpful. It was hard for me because I knew this was not normal. I used to clean out my umbilicus when it used to bleed. If I didn't, it would bleed through my clothes. It was very embarrassing. You're not alone! Hang in there! :)

2 likes
Reply

Hey girls!

I'm new to this site & am relieved that I'm not alone in my umbilicus endo!! I'm not happy you all have it too but I haven't found any info on it or anyone with it. I have just had surgery about 4 days ago & wondered if you can tell me how well it heals back up? At the moment I'm pretty horrified by my 'new' belly button & I'm hoping that it'll settle down & look hopefully normal again. Quite upsetting really as you don't know what it will look like at all

1 like
Reply

Hi everyone,

Really reassured to find this!

I have umbilical endometriosis and am due to have my belly button removed next week, but have struggled to find any information about this procedure (guess it's not always great to be rare!)

Hope those who have received treatment are feeling better now,

If anyone has anymore information or personal experiences from an umbilicalectomy then I would really apprecite hearing them! More than a little anxious about the surgery!!

1 like
Reply

Hello I have umbilical endomytriosis. My navel is swollen up but can't find a doctor to remove it. I would really love to get some advice and a doctor to do so. Feel free to inbox me at godisalwaysthereforme@hot mail.com. thank u

1 like
Reply

I have just had my second ultrasound in 3 years. First time it was because I suspected endo as suffered with pelvic pain since I was 15 (now I'm 30). The doc said although there was apparently a clear shadow on the scan which may indicate Endo he wouldn't pursue it further because there was no cure. I was told to try all the contraceptive methods to mask the pain.

Now on my last method - Mirena coil - which I've had in for 2 YEARS and I've got the worst pain, dizziness, nausea, chest pains and more. In the last 2 months my belly button started discharging and getting a shooting pain and itchy sensation under the skin. My doc was stumped but gave me antibiotics which cleared it up externally after 2 weeks. I still gets pains though. I've had another ultrasound today but they saw nothing and had never heard of belly button discharge.

I know there is something wrong with me but feel like I know more than the docs! It is my body after all and I know this isn't normal. I think the NHS in the UK is useless. Would it be worth finding a specialist instead to get treated? I don't have£2000 which I've heard is what it could cost, but my mum might be able to help me out or I could get a loan maybe. I can't keep on living like this. I've gone through so many jobs cus I keep having to go off sick, they all think I'm faking illnesses and scared of work :( no one except my boyfriend understands.

Reply

Hey Hun I have had umbilical endo & on my bladder too which I've had removed back in January this year. I'm on the NHS & was referee to an amazing doc who removed a third of my bladder & my whole belly button. I've now got a designer belly button which has healed great.

Whereabouts in the UK are you? I'm wondering if you could be referred to my specialist!? X

Reply

I live in Norfolk but I will go anywhere as long as this gets sorted out. Thing is my doc just keeps fobbing me off with pain relief and now with the ultra sound not showing anything I fear they will just do so again. I go round in circles but I know it's Endo, I can't cope day to day because of the pain and now with my belly button discharging it's just upsetting :(

Reply

Nezumi,

3 questions...what kind of doctor diagnosed your endo? Gyno? Surgeon?

Also, what was the name of the procedure you underwent to have the endo removed from your umbilical region? Did your "designer belly button" involve a second procedure (i.e. plastic surgery)?

Reply

I have had umbilical endo and had my belly button removed at the end of last year. I had to push gp for a referral and she referred me to a general surgeon who performed the surgery..when endo was confirmed I then got a referral to gynae who suggested an MRI which shows evidence of endo in my pelvis so I am now waiting to see endo specialist.

Shame to have to go round the houses but hopefully will get to the bottom of all symptoms eventually. Def some relief following removal of belly button though, I was unsure at the time but such a relief to be free from the sharp stabbing pains and a relief to understand the underlying cause.

Reply

Hi,

Sorry been on holiday so only just getting to reply!

I was referred to a gyneacologist surgeon. He's a consultant & specialises in endo so pretty lucky.

He never named it but I suppose it would be umbilical surgery & I also had bladder surgery for endo too. He removed & reconstructed my designer belly button at the same time so only one surgery.

I'm really impressed with how it's turned out. I can send you some pics if it'll help you xx

Reply

Hi there

I have just joined the forum and noticed you had your belly button removed due to umbilical endo. I first went to the drs a few years ago with endo symptoms and the main pain was a swollen nodule under my belly button which would get bigger and more painful around my cycle. Ended up seeing a private endo specialist as nhs kept fobbing me off. He did a lap in June and found extensive endo across my pelvis/pouch of douglas etc but no sign of endo on umbilicus except it showed to be swollen and inflamed. Dr thinks high hormone levels/endo hormone are causing this and has said only cure for umbilical pain is complete removal of umbilicus. Im really nervous to have the surgery thogh... Im just wondering if you only had your button removed or was it the whole umbilicus? Xx

Reply

Firstly, this is the 1st time i have ever felt the need to join one of these forums as i was so touched by how many of you suffer from the same/similar symptoms. In Australia this umbilical endemetriosis condition is almost unheard of.

My story began in December 2011 when i thought me wearing tight jeans was the cause of my belly button pain and strange discomfort every period. I put up with it for three years and the pain got progressively worse. Meanwhile i had numerous ultrasounds and no doctor could help me. I was so frustrated because i had this terrible pain coming from my bellybutton and nobody could treat it or tell me what it was. I was so over ultrasounds and specialists. I finally found a surgeon who was keen to get in and have a look. By this stage i had a tiny nodule growing inside my bellybutton . I had surgery where it was confirmed i have umbilical endemetriosis. My surgeon said he removed it internally. This had stopped the pain i was feeling internally but ever since the surgery the nodule was growing in size and started to bleed every period, i now have a second one growing also. They both bleed every period. I used to have such a nice bellybutton now it is hideous.

In conclusion i booked with one of the best gynos in Sydney. He said there is nothing i can do about this unless i choose to have them removed which means a full reconstruction of my belly button and I'm a little aprehensive to do this as im worried to see what having no bellybutton will look like or i persevere and if i fall pregnant my condition will most likely improve.

Any thoughts on the steps i should take?

Thank you

Reply

I've only recently come to this site and I'm just reading though everyones stories. I think I need to push this with my gynaecologist re the "umbilical endometriosis"... I always felt this was directly related and having read what people describe, I am now assured that my feelings about this were right. I'm also having a hard time at work because of my absences due to this (I started another thread a couple of weeks ago). Initially I was told I needed a hernia op, but I was reluctant to persue this as I felt it wasn't the whole story - I'm glad I held back, becuase I want to get to the bottom of this and not just rush into a surgery which may not even be the right surgery for me xx

Reply

Hi, I was diagnosed with endo 10yrs. Have had multiple laps to remove scar tissue and separate organs that had been fused together. I have found this site due to searching endo and umbilical hernia. I had a umbilical hernia op in 2013, after the op the surgeon stated he had spotted scaring on my stomach wall but I was so out of it I couldn't ask any questions. Since the op I have had this 'lump' above where my belly button used to sit. It is noticeable when standing however I have looked 6mths pregnant for the past year due to my stomach muscles tearing. The lump is painful, hard but under the skin. Has anyone experienced an umbilical endometoma under the skin after a hernia operation. Any help would be appreciated x

Reply

Hi there, I have just this second posted about this too. I have a couple of lumps around my belly button, is yours the same? They swell and hurt in timing with my period. So you have been offered removal? Did you have an MRI / ultrasound first to rule out a hernia? Best wishes

Just caught up with all your posts, nice to know it is not as rare as we all thought. I think removal will be a good option.

Best wishes ladies xx

Reply

Yes I have it, but I was wondering what type of surgery you are having

Reply

Wow. I've just stumbled across this post while googling symptoms. I can't believe there are so many of us suffering with the same symptoms yet everyone we've all spoken to says they've never heard of this before.

I'm 35, and have been diagnosed with PCOS within the last year.

I started having sleep issues, I kept waking in the early hours. I was always too warm, I gained weight, have awful nails which peel and break, bad skin, greasy hair, hair thinning, depression, anxiety, heavy periods, You name it.

I went to my GP and was tested for thyroid issues. I was so convinced it was my thyroid. I came off the combined pill to ensure all hormone tests were accurate. It came back as borderline. Which meant it wasn't severe enough to be treated. My testosterone levels were only very slightly above normal too. My GP referred me to an endocrinologist who carried out further blood tests to check for Cushings, which came back negative. Eventually diagnosing me with PCOS and putting me on Metformin to help manage suspected insulin resistance.

I don't have the usual PCOS symptoms. I don't have excessive hair growth, I had regular and very heavy periods. I've subsequently had scans of my pelvic area and they didn't reveal any polyps or problems with my ovarys either.

I started taking the Metformin and almost all of my symptoms improved. I lost the 1.5 stone in weight I had gained the previous year, my periods were VERY regular, but still heavy. My hair loss was still quite apparent. But the rest of the symptoms improved. Due to the navel pain I'll talk about below, and the PCOS symptoms the endocrinologist recommend I start taking Dianette as this would help the PCOS stuff and might also prevent the hair loss.

Then....

Since coming off the combined pill the previous year to allow for all the accurate blood tests, I started having navel pain each cycle. I ignored it for the most part. I also thought it was the belt buckle of my jeans that had some how hurt my belly button... I feel pretty stupid about that now. Anyway, I got to the point where I couldn't turn over in bed because it hurt so much. Like a pulling feeling, a sharp pain, like a stab maybe. Just around my belly button on my left side. My boyfriend persuaded me to go to the doctor about it.

The day I went for my appointment I couldn't even fasten my jeans and it hurt to walk. That was the worst its been.

I could feel a lump within my belly button. I'd noticed it changed in size. But I hadn't had any weeping or bleeding or smell or anything from my belly button at that point. The GP referred me to a surgeon as he thought it was a hernia. Despite me explaining it was DIRECTLY LINKED TO MY CYCLE.

So off I trotted to see the lovely consultant, who again, had never seen these symptoms before (after he confirmed it was not a hernia). I had several ultrasound scans to check the belly button yet nothing showed on the scans. The guy couldn't find anything. We went as far as planning an appointment for the week I had my period when I also had the pain, and while they could both (consultant and the guy performing the scan) feel the lump in my belly button, nothing showed up on screen. He even did a scan of my womb and ovaries and confirmed they looked perfectly normal. No thickening of the womb lining and no polyps on my ovaries.

He mentioned that though rare and unlikely (because I haven't had surgery in that area and I've never had kids etc) it could be umbilical endometriosis. He referred me to a gynaecologist.

Well, wasn't he a complete waste of f-ing space.

He had a bit of a feel of my lower abdomen. Didn't think I had endo but could only confirm by doing a laparoscopy. His advice was to take my pill back to back to reduce the number of periods. I asked whether this would affect the PCOS symptoms at all and he said no. he didn't ask what pill I was taking, offered to complete and internal exam (wtf?!?!? If you can reach behind my belly button mate you've smaller hands than is normal!) and sent me on my way.

Thank goodness I went back to my GP. It turns out I can't take Dianette back to back because it can cause liver problems. My GP agreed to me doing this for a short period of time until I have my next appointment with the endocrinologist - which is in three days time.

Since I've been taking the pill back to back I've started having the same symptoms again. Waking at night, acne, greasy hair, headaches on 'hormonal days' (since I don't technically have a period any more). I've also been experiencing break through bleeding every month. Which I realise can happen, but while I've had this bleeding I've had ALL the usual period related PMS and my navel is still sore in line with my cycle. Only now, I am developing regular infections (I think). It hurts to bend forward because I can feel something obstructing me around my middle and the lump inside the belly button is growing and shrinking.

I've come across another person with the same PCOS & sore navel symptoms as me. She had come off the combined pill and tried the MIrena coil and swears by it. Her symptoms have reduced and she no longer suffers with navel pains or infections.

Does anyone else out there have any feedback on how the Mirena has helped any of the symptoms I've described above?

1 like
Reply

I'm so happy I found this thread! After a 10 year fight of me saying I had endo and doctors saying I had everything but FINALLY my new GP has asked me if I've ever been diagnosed with it.

My symptoms started practically the day I began my periods. I was a 'late' starter. beginning my periods at the age of 16 but have always had trouble with them, irregular, heavy etc. I was put on the pill at 18 to help with them and for a few years the pill did it's job although I'd always have heavy painful periods compared to my friends around me.

About 5 years ago I started having excruciating pains whilst on my periods. Every month I would visit the doctor and every month I was told something different could be causing it; water infections, ovarian cysts once even that I had kidney stones! But deep down I always knew this wasn't the case and always suspected endo because I had many other symptoms; prolonged periods, very heavy, clotting, bleeding between periods, painful intercourse, shooting pains when having vowel movements. but noone would ever listen to me. I was sent for scan after scan and told nothing was wrong and in the end I gave up because I honestly thought it was all in my head and that maybe everyone suffered as I did each month. I was bounced from pill to pill and nothing worked but was never refered to gynocology.

Last year, I went for a standard smear test and it was during that the nurse noticed I had an irregular looking cervix and she passed me onto a doctor in my surgery. When I explained the past 8 years to this new doctor she couldn't believe all I'd been through and that I'd never been referred to gynagology which was the first thing she did.

During my first appointment I explained all of my symptoms and had an internal and the doctor straight away diagnosed me with Ectropion (my inner cervix has slipped down and outside due to years of being on the pill!!) and sent me for a scan for suspected polyps. The scan came back all clear but I was sent an appointment to have my Ectropion removed by laser.

When I went to my appointment to have the laser surgery, I mentioned to the gynacologist my thoughts of endometriosis. He said it was possible but to discover it I would need a laparoscopy but they didn't like to do this and they would rather fit a merina coil to deal with the symptoms and only if this didn't work then they would look at a laparoscopy to diagnose endometriosis. I'm not happy with this as I don't want the symptoms 'dealt' with, I want the problem removed.

Anyway, 3 months ago, i noticed a small lump in my belly button whilst on my period that looked like a pimple and began to piss and bleed. I didn't think much of it until the following month when the same thing happened however a larger deep red/black lump was along side it. This was much bigger but again a few days after my period it shrunk to un noticeable. This month however, again the small bloody lump grew along with the large lump which now fills my belly button and a third lump is growing. The very large lump burst and there was and still is LOTS of blood seeping from it. I'd past my breaking point this month and went to my GP about it. he took one look and asked me if I'd been diagnosed with endometriosis as he was convinced this was umbilical endometriosis. I could have kissed him. 10 years of knowing deep down I had this and it takes a big standard GP to report his findings after seeing numerous 'specialists'. he has now referred me back to gynagology and less than a week later I've received an appointment for 4 weeks time. I'm really hoping they will now bypass the coil idea and go straight ahead with whatever is needed to be done.

My point of this extremely long response (sorry!! it's just so nice to talk to people who seem to sufffer like I do!) is: how do you deal with the bursting of the belly button? my seeps and bleeds constantly, what can I do to help/ stop this spreading onto my clothes? This month i've been putting tissue into my belly button but when I remove it I find it takes the 'scab' off the 'wound' and the bleeding starts right back up.

Thanks in advance for listening to my moan and your advice xxx

1 like
Reply

Hi SamJS08, sorry to hear it's taken 10 years for you to finally have the diagnosis you wanted, but at least now you should finally get the treatment you need.

I was lucky in comparison and had my endo digoned thin a couple of years, but I understand completely what you are going though with the pain and discomfort of having a lump grow in your belly button every month and weep with blood.

I used to buy the rectangle sterile pads (sorry can't remember exactly what they were called) and tape them to my belly button with surgical tape. At least then my clothes wouldn't be covered in blood.

Hopefully they will be able to remove it like they did mine, I don't have a belly button anymore but thats a small price to pay.

xxxx

Reply

Thanks for your reply Welsh-girl. I have an appointment on the 10th December so hopefully it will be another step closer to a diagnosis and them doing something about it all. I will try the sterile pads. I'm a teacher so it's very difficult to stop and 'clean up' throughout the day so need something I can leave on for the bulk of the day.

It's nice to hear from someone who has come out at the other side with a positive outcome. a belly button isn't needed but I'm sure it took some getting used to. Xxx

Reply

Hi welsh_girl.

a little update for you. I've just been diagnosed with umbilical endometriosis through gynagology. I'm scheduled for my 1st lap in Feb but they can't go in through my belly button as normal due to my endo so they are making incisions in the top of my stomach instead. During this lap they are going to remove all endometriosis cells hopefully including my umbilical but they have told me I'll possibly need a 2nd op for this in which they close up my belly button completely.

I'm also from Wales and have considered asking to see specialist in Cardiff as many people have advised me I should as umbilical endometriosis is so rare. Do you mind me asking if you went to a specialist? Either way I'm hoping my story ends as well as yours has. Will keep you updated xx

Reply

I am so relieved to find this thread!

I first went to the emergency room, because my pelvic pain was so severe. They did a biopsy and found out the small lump that had grown on the side of my belly button was endo.

Since then, I have had two out patient surgeries for removal, but it keeps coming back! Not only did the same lump come back, but another one has formed above it.

I am so tight on money, right now. I cannot even afford the copay to see my doctor. But the pain I am experiencing once a month is so awful, it feels as though my entire abdoman is tender.

I would really appreciate any advice given to me, as to how to help ease the current pain. And also, what did you do in order to keep this from coming back repeatedly? Was there a medication that helped you specifically? I would hate to undergo my third surgery, and still have it reoccur.

Reply

I have it too! I'm due to have endometriosis removed from my belly button next month. I've been lucky in that my symptoms haven't been painful and that, although I've had to wait quite a while between appointments, each tiime I've seen someone things have moved forward.

I started by seeing my gp in Feb 15 for a sore belly button which was treated as an infection. When I had an almost immediate recurrence, I was referred to dermatology who removed the nodule that had developed in my belly button and sent it for biopsy. In the meantime, i had noticed a link between the lump in my tummy button growing and bleeding with my period and had started to consider endo. Lo and behold, the biopsy confirmed endo and my gp referred me, without question to a BSGE surgeon who I have been really please with so far. Fingers crossed for successful surgery now!

Reply

I had a similar situation. A bump that was bleeding and I've suffered extremely bad menstrual pain since I was a teenager. When I first noticeday the bump the doctor thought it was a pimple or infection. She tried to use silver nitrate to burn it off. I was told it would hurt but it did nothing and nor did it disappear. I said it gets worse when I have my period and that's when it bleeds. I had it frozen and cut off and they tested it and sure enough it was endometriosis. They sent me to a gynecologist specialist who said that I would likely need a hysterectomy but was unsure whether to take my ovaries out at the time or not since I was 30 and she was concerned about hormone therapy being needed if my ovaries were removed but I likelyrics would eventually need them removed. She told me to try taking the iud with hormone in it that may shrink the endo tissue. She said I likely had a lot of endometriosis tissue since I had such bad periods and umbilical endo is so rare that it only made sense. Well I did have the iud put in which by the way hurt so bad after that I thought I was going to pass out and I went into shock. I've given birth and my labour didn't hurt that bad. Anyway it's been 5 years and I haven't had my period for the past 4 years but now I need the iud replaced and I'm quite scared. My period is returning and today I noticed a new bump forming inside my belly button. 😨 I'm pretty freaked out. I've had bad experience with surgery and had my stomach perforated while having a simple day surgery that put a tube down my throat and I've not eaten food in 4 years. It's been a long battle and another surgery right now is really scary. I go for major surgery this summer to try and fix my stomach as the exit to my stomach is the size of a pin hole due to scar tissue so I live off juicing and boost protein meal replacement shakes which I hate.

Reply

Hi there I know this post is a bit old but I’ve been diagnosed with umbilical endo and am at a loss as to what to do next my gynae has said that due to the fact that this is so rare and that I am trying to get pregnant they are not willing to operate, but I am extremely concerned about what my belly button will do whilst it’s so swollen (as it just doesn’t seem to deflate now between periods) I am worried that I won’t fall pregnant with this or if I do that this will cause considerable problems through a pregnancy any advice would be greatly appreciated x

Reply

You may also like...