I'm in my mid 30's, married, and have one teenage child. I've been sexually active since my early teens and have never had anything like this at all. I'm having some really weird symptoms and so far, no help from doctors here. Maybe someone can relate to this or tell me if this sounds like what I think it might be, which is possibly like a mild prolapse of some kind?
Before I go on a big making-the-rounds of seeing doctors, I want a little more direction.
About a year ago ago, I had a very severe UTI. I've had a lot of these and am a little prone to them. It was an e.coli infection. Nothing unexpected. Bleeding, pain with peeing, persistent need to pee. I've also had past kidney infections twice with high fevers. All have been e.coli although I maintain my hygiene well. Another round of SMZ-TMP was given and it went away. I was tested for STD's and have never had any. Nothing at all.
Over the next few months, not much changed although my bladder felt kind of sensitive during sex but nothing major. I have an active, monogamous sex life. Then in August, I had a horrific episode of terrible, terrible, unspeakable pain. I woke up at 4 am morning and went pee. My bladder spasmed from all that I can tell. It felt like there were knitting needles going inside and so I got into the bathtub and that didn't really help beyond a little. As soon as the gynecologist's opened, I had my husband take me there.
The gynecologist didn't do a pelvic exam. She did test my urine and that showed a very high white blood cell count. However, she said I had interstitial cystitis and not a UTI. I went on an IC diet and that didn't do anything. I also went online and checked out the symptoms and they really didn't sound like IC to me. So I made an appointment with a urologist.
After this day, my sex life completely changed. I have had persistent burning pain around my urethral opening AND my vaginal opening. Also, when I have sex, it hurts like crazy. It feels hard to explain but it feels to me like it's not going in right or like there is something it's bumping into right up at the front as well. Sex feels kind of clunky, like it doesn't glide in right (even with lubricant). Suddenly, it feels like my husband is hitting the wrong things in there, and he says he feels it too! So I checked it out with a mirror and poked and probed myself (don't ask... we all do things like that, I think, when in pain). It feels to me like my bladder area is super swollen up and the upper part of my vagina is not protruding out like with prolapse, but it does really hurt, it feels unusually bruised all the time, and it is definitely filling up more of my vagina than it used to (I've often self-checked it... sorry if that sounds weird... used to get a lot of yeast infections and such). If I poke the top at all now, it makes my bladder spasm and literally hurts for days and days. Also, the skin itself burns inside and a little on the outside too.
The urologist said it categorically wasn't IC. He wanted to do a renal ultrasound, which struck me as silly. He thought maybe I was having constant UTI's from kidney retrograde. That seems unlikely thought because I have so much pain in my vagina itself, or I honestly can't tell if it's my bladder or vagina. I know it's my urethral opening and the roof area of my vagina that hurts.
So I don't know what to do next. I did try the antibiotics that he gave me, macrobid, for after sex, and that did nothing at all.
The other thing that seems unusual to me is that this year, I have very bad aching all the time in my uterus. If I push on it from the outside, it hurts too. They said I didn't have PID though? Okay... however, I do have a supposed ovarian cyst that is grapefruit-sized. Believe it or not, it has been there for like five years and before that, had reoccurred too. I don't know if that's related. They caught it when I was preggers ages ago.
I've spent a lot of time online trying to figure out what this could be. I think maybe it could be a prolapse of some sort that is mild? Or even the cyst pushing down and pushing stuff out of place? I don't know if that's possible. I do know that my uterus is seriously tilted already and forward. But I can't seem to find a doctor to not shuffle me off to another doctor. And honestly, I have little money for that sort of thing, little time, and almost no patience. I just want to go in, tell them what's going on, and have them figure it out.
One more thing. I've noticed that I cannot kegel half as well as I used to. No idea if this is part of it. But it doesn't feel like the muscles are really working well. And I've always kegeled.
Does this sound like a prolapse? More uterine or urethral if so? How do they tell the difference? Should I see a new gyno or another urologist? Does it cause burning pain like this or does any of this sound like what you've been through? Any other thoughts? A weird UTI? A cyst gone crazy?
Thanks a lot! Really! Any thoughts you have are probably really helpful. It has screwed up my sex life completely and caused tons of pain; I have some occasional spasms still in my bladder, but nothing like before.