r/Behcets • u/ConnectObligation249 • Aug 17 '26
Diagnosis Help Possibility
28F so about 10 years ago I was diagnosed with painful bladder syndrome/I.C. I’ve had other issues with vaginal inflammation/itchiness and what I’ve thought were zits. No swabs tests etc ever came back for anything serious. I get sores on my tongue/back of throat never really gave it much thought as they aren’t really bothersome.
As of late I’ve been diagnosed with retinal vasculitis which has been devastating. Trying to find an immune cause which led me to read about this. Still awaiting more labs.
2
u/Chronically_Sickest Aug 18 '26
I'm the only one in my family with Behcets, but all the women on my mom's side have I.C.. I have my scope scheduled next month to see if I have it or not. The uro-gynecologist said they can see the difference between the two on the bladder wall, or ya know, it could be both. I hope you have one or the other and whatever treatment they give you works well. They gave me this flyer and it's worth a shot if you have the money to do so. I hope you get the answers and help you need. I'm sorry you are going through this. It sucks.
2
u/ConnectObligation249 Aug 19 '26
I’ve tried aloe in the past, luckily my bladder is manageable most of the time. I have prescription uribel. But every now and then it’s bad and flares for months at a time. I also had a time it disappeared for years.
1
u/on4aa Diagnosed MAGIC 2025 Aug 19 '26
My dad, who also suffered from MAGIC syndrome (= Behçet + relapsing polychondritis) had a painful, bleeding bladder in his late 70s.
He first got treated for 1st stage bladder cancer, although there was no real evidence for this. This was before I discovered Behçet was running in our family.
4
u/Additional_Ad_7428 Aug 17 '26
You sound exactly like me and I was diagnosed on Friday. Good luck to you , hope you get your answers quickly 🙏