UMBILICAL ENDOMETRIOSIS

[Lisa411]

Hi, I am new here. I am looking for support. I have been suffering with pain in and around my belly button for over 4 years. This has now developed into a swelling in my umbilicus. I have not recieved a formal diagnosis after 4 years, but recently the swelling was drained and it was suggested by one doctor that this may be related to a rare form of endometriosis, known as Villar's Nodule.

Does anyone in this group have experience of this condition? Any advice on how to live a life that doesn't constantly feel like you are suffering alone?

[Jane884]

Hi there Lisa, I'm sorry to hear you've been suffering with this for so long. One thing you'll realise after being here is that you definitely aren't suffering alone. We understand what it's like to have isolating symptoms and spending way too long trying to get a diagnosis. So many women suffer in silence and so many doctors aren't willing or able to do a thorough investigation, it makes me wonder how rare these "rare" forms of endo actually are.

Is your pain worse before or during menstration? What investigations have you had so far? x

[Lisa411 in reply to Jane884]

Hi Jane,

Thank you so much for reaching out and your support.

The pain is definitely cyclical with my period, but lately it has been more persistent but I think this is because the swelling never really goes down in between cycles. The cramps and other abdominal pain is certainly in line with my cycle.

I have had lots of tests to see if it is a urology related link. In the last 4 years I have had around 3 Ultrasounds, 1 MRI, countless blood tests. All come back unremarkable.

Yesterday the hospital drained some fluid from the swelling and is sending that to be screened in the lab. I continue to be on the waiting list to see gynae, which has now been bumped up to urgent. Hopefully they can do some more specific endo tests which will help lead to a diagnosis soon!

[RedA28]

Hi Lisa

I don't have exactly the same symptoms as you, but the symptom that led me to finally getting a diagnosis was umbilical bleeding every month while on my period. I didn't have a nodule though, and no pain in the umbilicus itself. Since having a lap in summer last year (grade 4 endo diagnosed and a fair amount removed), I've not had the bleeding. So just wanted to say you're not alone in having symptoms in this area. I know in the past when I've looked into it removal of the umbilicus is sometimes performed (I think they can make you a 'new' one), so that might be an option if that particular symptom is affecting your life.

You'll find a really supportive community on here for endo in general. It may be worth seeking a referral to an endometriosis specialist to start exploring a diagnosis and options...

[Lisa411 in reply to RedA28]

Hi RedA28,

Thanks for reaching out. Really feels wonderful to know I have found such a supportive community!

Sorry to about your own endo journey but I am glad to read that it sounds like you are on the road to recovery.

I think excision is the only way, but it wont be touched until diagnosis. I was seen by general surgeons yesterday but they wont do anything until gynae confirm it is endo. It is so frustrating as it constantly feels like you are being punted around the system and never get to the top of the waiting list with the right department.

[Mimi555]

Hi there, I have had an umbilical endometrioma excised three times. It first appeared in my umbilicous as a pea sized painful lump. This was taken out under local anaesthetic and confirmed to be an endometrioma. It reoccurred about 7 years later and was again removed. It reoccurred again 2 years later. This time I had full laparoscopic surgery with my endo consultant and a plastic surgeon. They cleared everything they could find out over three hours of surgery, they did wide excision surgery on this site cutting round the umbilical stork and muscle and cutting it all out. The plastic surgeon constructed me a new belly button afterwards. It was a slow, painful recovery as the surgery had been quite full on! It so far hadn’t returned to this site. I went on to have a baby nearly 3 years later aged 40 so pretty amazing. Get it seen by a good endo consultant. Mine is great, he had done 2 surgeries like this before, but it’s much less common for sure.

Also I have found anti inflammatory diet, being low fodmap and regularly practicing yoga (including hot yoga) and lots of mixed exercise have been really important for me to help with my endo symptoms ongoing …. Even when I don’t feel like it!! I hope sharing all that helps a little?! I hope you find a good consultant. Wish you the best of luck with your health xx