Pain for 6+ months, no relief and no help from doctors... help!!!

[VT101]

About 6 months ago, I went to urinate and felt the most horrible pain like a UTI. This was exactly 24 hours after I had sex (unprotected) with my fiance. I thought I had a UTI (horrible urethral pain urinating and the feeling that I still was about to wet my pants even after I used the restroom). I have seen a number of urologists and tried just about every kind of medicine and even had 7 sessions of Pelvic Floor Therapy, none really helping. It seems that time is the only thing that helps. I did not have sex with my fiance again (for fear of having a flare up) until 3 days ago. Again, about 24 hours after sex (with lube and with me showering before and after sex) I had a horrible flare. It is so bad that I cannot sleep and cry all night and sit in a warm bath to try to relieve the pain. I do not have pelvic pain... the only thing I feel is right at the urethra and vagina and it is a feeling of pressure, irritation and the feeling that I never emptied my bladder. My urologist cannot find out what is causing this. Do any of you know what I should do? They are 99% sure it isnt IC (but I am still having the cysto-scope on the 27th) just to make sure.

Could it be an STD? I've been tested by my gyno, but I heard that maybe I should be swabbed in my urethra?
Also, could it be some sort of bacteria on my fiance's penis or in his semen that is causing this flare? The urologist did say I had bacteria in my urine.

I am so desparate. I am on Cipro and Prosed DS again... they put me on it (along with a number of other meds) and nothing gives me ANY relief. PLEASE PLEASE PLEASE help and give me any advice you have to help. The ONLY time I get this flare up is when I have sex (and I do know that my muscles "down there" are super tight...hence the pelvic floor therapy), but I doubt it would cause several weeks of unbearable pain, and then months of tolerable feelings of me feeling as if I didnt empty my bladder enough (note- i do not have frequency).

Please help!!

[VickiB]

I'm so sorry you're going through this! When you don't know what it is or why it is happening there's no way to even begin guard against it!

My urologist cannot find out what is causing this. Do any of you know what I should do? They are 99% sure it isnt IC (but I am still having the cysto-scope on the 27th) just to make sure.

The only thing I can say is that if you don't feel right about what your doctors are saying or doing, and especially if you reach the point of making no progress with the search, it's a good idea to go for a second opinion. Before I was diagnosed I had plenty of doctors tell me they couldn't find anything wrong with me. However, it does sound like they're still looking in your case since you have a cysto scheduled. (If it's the regular in-office type, I've been told this will not necessary show whether one has IC though)

Since you mention the only time this flare up happens is after sex, have you tried changing the type of lube? I don't know whether that would cause symptoms that last for several weeks though.

I hope your doctors figure this out for you because it's obviously having a very negative affect in your life! Wish I could help somehow!

Hugs,
Vicki

[VT101]

Thank you so much Vicki! I have actually seen 3 other urologists and all of them just keep trying me on new meds and really cannot help with the pain or determining what it is.
I will honestly say that I do not want to even think about having sex again because of how awful I feel. I am absolutely terrified to. This is the 4th time it has happened (from sex). The other times I thought they happened because I did not use lube at all, so this time we used lube and it did not make a difference.
I am going to call my Urologist again in the morning because this is the 3rd night that I am in so much discomfort (feeling pressure like I am going to wet my pats) that I cannot sleep at all.