1. F34 with genital sores also! It sounds like there is some overlap in our experience, but mine just started a few months ago. I’ll try to keep it short, but basically a genital sore started to pop up about a week before my period, along with flu-like symptoms. Initially it was just mild discomfort and they would go away on their own after about a week. Last month, the sore continued to grow and became extremely painful. Went to urgent care, they took samples and I was negative for herpes etc, they scheduled a gynecology appt for me the following week. Two days later the pain continued to worsen but the best they could do was get me in to see my primary care. He started a course of antibiotics just in case and prescribed birth control. I didn’t start it though because the masochist in me wants to see if it really is recurring with my period, because everyone kept saying that wasn’t likely. Saw the gynecologist a few days later and they took a biopsy, prescribed topical steroids and lidocane gel. Antibiotic course finished soon after that, and 4 days after the biopsy I suddenly spiked a 104f fever so my dr urged me to go to the emergency room. Saw 3 additional doctors, no evidence of infection of the sore or in my blood, tested negative for Covid. I was in so much visible pain by this point that they took me off work and prescribed opioids for pain management. They also started a new round of antibiotics. Biopsy results came back, non-cancerous and there’s “evidence of inflammation.” Ruled out lichen(?). Had a previously scheduled appt with my rheumatologist, and he saw the report had mentioned possible behcets so we added colchicine. He said there’s a gene linked to it, so we submitted testing to see if I have the gene. He stressed that even if I don’t, it doesn’t rule out behcets. Saw the gynecologist for a follow up appointment, and while the sore was healing, it was still uncomfortable and a little “raw.” Genetic testing came back negative. That was all last month. Well, my period is about to begin again and a new sore has popped up. I’ve been applying the steroid cream and it seems like it’s keeping it a little under control, but I stopped the cholcicine because I figured it wasn’t working, but I guess I may need to take it again anyway just in case.

  2. Our stories do seem to have some similarities. Last time and this time the sores happened about a week before my period. I'm on birth control and have opted to start my next round with no break to keep my period at bay. Bleeding and dealing with that is not a complication I want right now! So no idea if it's hormone related as I would think being on birth control my hormones levels stay around the same. I feel for me it's more triggered by viral infection so far, but who knows. My Rheum has not pressured me to take any medication up to this point but I'm nervous that she will want me to start now. I have a weird anxiety around taking meds but I will if it will help. I called her office this morning and am waiting to hear back. It's so frustrating to be sick and have doctors tell you they have no ideas.

  3. Have a look at diognitc criteria you need 3 occasions in a year

  4. This rheumatology stuff is so complicated. I get almost monthly outbreaks of oral sores, but that can also be associated with my Sjogrens diagnoses. I don't know how these doctors weed through these symptoms.

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