hey everyone, just thought i’d share my current story because this has been very bizarre and there’s not a lot of information about cutaneous endo out there, as well as i wanted to see if anyone has had similar problems or has any advice for getting help. I (25F) have never had abdominal surgery and about a year ago i started having unusual issues with my belly button. it would routinely become swollen, bleed, and i would have discomfort. i initially thought it was an infection because i work a dirty job, but after seeing two different general care doctors, nothing had changed and would continually reoccur. so, i went to a dermatologist to get help as i was starting to become worried that it was skin cancer. they thought it was either a keloid or cyst and injected steroids into my belly button to help with the inflammation. it help a little bit but after two rounds of steroids i asked for a biopsy. imagine my surprise that it’s my uterine cells growing inside my belly button 😭 like genuinely wtf lol. the doctor told me that their pathologist had to reach out to a women’s health pathologist to even diagnose it because they had never seen it before. anyway, i have an IUD and don’t have normal periods anymore. instead, i get false periods where i spot quite a bit for 3-5 days and have PMS and menstrual symptoms. for the past year my PMS and menstrual symptoms have started to get worse. migraines, worse cramps than i’ve ever experienced before, and now bleeding and tenderness of my belly button. i’ve always had bladder/urinary tract issues but im starting to have more discomfort than normal. i am a bit worried that i don’t just have spontaneous cutaneous endometriosis, but also regular endometriosis. i am currently looking for a new gyno to help me with my belly button endo but it’s a bit difficult as there’s really only one doctor in my state (deep south lol) that does excisions and he has a waitlist of over a year. it’s also a rare disorder so i don’t even know who the hell can even really help me.   submitted by   /u/CatsAHHH [link]   [comments]