Hello, I have been dealing with this issue for about 3 months now.
I would like any insight on what you guys think this might be or what may help. The pain is so debilitating/scary that I have turned to God.
I'll start by saying I've had these feelings/small episodes of this as a kid and teenager. I just dismissed it as a UTI or something of the sort. In my adulthood whenever I felt one of these coming on I chugged water with D-Mannose in it and it would most times go away on its own and I'd go about my life. The symptoms I felt were stinging and burning inside my vagina and inside the urethra.
I had one of these episodes happen recently and I thought it was what usually happens so I took D-Mannose and waited for it to go away, it didn't. And less than a week later I found myself in an Urgent Care office. They wrote me anti-biotics for a urinary tract infection and I took those and didn't feel any better, I later got a call from the office that they didn't see any indications that I had an infection. I would go on to hear this a lot.
I ended up in the Emergency room twice - the first time they insisted it had to be a UTI again and I was treated with even more antibiotics and they gave me a CT scan which showed everything to be normal. I was discharged and I ended up back in the ER a couple of days later when things were still failing to get better. This pain is constant it never goes away.
This time in the Emergency room they gave me a pelvic exam, which they said I had some discharge which could be BV so they would treat for that - I got a ton of antibiotics and lots of pain medication. I tested negative for any STD's/STI's - they really didn't know what was wrong.
I got a referral to a Gynecologist and she said it had to be Interstitial cystitis, which I had doubts about because I never have issues peeing or pain with urination. She referred me to a Urologist and they gave me a cystoscopy which showed no issues in my urinary tract - and he diagnosed me with pelvic floor dysfunction. Again my symptoms are constant burning and stinging inside of my vagina, and constant burning and stinging inside and around urethra. No problems urinating and no pain with urination. He said that my pelvic muscles were a little tight when he gave the exam. I don't have any problems with sex with my husband and I can't think of what would've brought this on. Maybe I've had this since I was a child and I was having flare-ups even then?
Currently I'm taking Baclofen (muscle relaxer) I have found to be a small help but the pain never completely goes away. A typical day in pain I would take 20mg of Baclofen, Tylenol, Meloxicam, and Hydroxyzine for the anxiety this causes. All of this makes me extremely drowsy and tired.
I have an appointment with a pelvic floor doctor next week. I hope I explained my situation in a simple enough way, I'll answer any questions I can.
Prayers would be more than welcome.