Crazy nodules

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

4 Replies

  • Tough one. I have endometrosis in my lap scar so I understand what you are saying about nodules and the pain. I'm currently on the progesterone only pill as I wasn't ready for surgery. It's been 8 months now and although nothing is perfect I'm not getting the awful pain. On the no belly button front. One of my boys has a minimal belly button .. Not sure how to share a photo. It's something only you can decide

  • Thanks for your advice. Just trying to figure out whether i can persevere with this until i want to start trying for kids which is not too far away. That's if hopefully i can fall pregnant without any implications. Because having surgery might go to waste when my tummy stretches. I don't have the pain anymore since my last surgery. Just the bleeding and the hideous appearance.

  • Hi, i was diagnosed with endo following umbilical surgery to remove what was suspected to be cyst (nodule that would periodically turn black and then pink). Following surgery i found out it was an edometrioma completely wrapped around and throughout the umbilical tract. My whole belly button had to be removed. I was a little surprised but my surgeon tried to create a dimple in the stiched area so that from a distance it still looked like a belly button. I was a little sorrowful for the loss but when i could wear jeans, trousers and skirts again, i could finally bend down without pain and sit in comfort, i was grateful and accepting of my scar.

    My advice is that the pain will continue unless its removed therefore you have to weigh up the benefit from not being in pain and living with minor disfigurement. As endo has continued to be a significant part of my life i have had to put up with 3 more surgeries with many scars since and so the loss of my belly button no longer bothers me.

    good luck in whatever you decide to do. I wish you well.

  • Thanks for your advice. My gyno mentioned that my condition will improve once/if i fall pregnant but can't rule out that it won't come back. It's such a tough one. Really don't want to change the look of my belly button but getting sick of the hideous nodules that bleed every period. It's bad enough having your period but bleeding out of two holes is just ridiculous.

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