Recovered and then a severe relapse that doesn’t seem to end
Hello. Three years ago I started having vulvar pain. Pain when sitting, etc. Neurologists told me it was pudendal neuralgia, and gynecologists said it was vulvodynia. The pain started 3 months after a urinary tract infection that was so severe it hurt my entire vagina and even my anus, with bladder spasms so intense they were unbearable. Well, 3 months later, out of nowhere, I woke up with terrible vulvar pain.
During these 3 years, I tried everything. I did 2 full years of pelvic floor physical therapy and improved a lot. Almost all the pain went away, and the remaining pain completely disappeared after using lidocaine daily for a couple of weeks.
I think those were the best 6 months of my life because, for the first time in 3 years, I had no pain. Until suddenly I got another severe urinary tract infection. The pain I get from UTIs is the worst I’ve ever felt in my life. My bladder spasms on its own like a cramp in a leg, but imagine that happening inside your lower abdomen—it’s extreme.
During this last infection, the urethral pain was horrible and extremely intense. Along with all this, I started to feel a pain I hadn’t had in these 3 years: pain in the anterior vestibule, in the area just below the urethra and at the vaginal entrance.
Usually, my bladder takes at least 2 months to recover after a UTI. That is, the infection goes away but the bladder remains irritated and painful.
My bladder has already improved, but the vestibular pain hasn’t. I’ve had this new pain for about 2 months now, and it’s constant (24/7). It hurts to the touch—I can’t even dry myself properly after urinating. Even contact with underwear or surfaces causes pain. My bladder and urethra are now pain-free, but this vestibular pain remains.
I’m currently taking amitriptyline and applying lidocaine.
My doctor’s theory about when I was “cured” during those 6 months was that the lidocaine managed to desensitize the pain—that it was due to overactive nerves.
Right now, lidocaine is not helping me heal anymore. I don’t know what to do.
I live in Latin America and there are no expert doctors. I could travel, but I don’t know what I should do.
I spent 3 years fighting this, managed to recover, and now it feels like the infection inflamed and damaged the nerves all over again.