why can't they find out what's wrong with me??

[kazi]

Hi everyone im back again...so again im now back at another urogyno lol yes yet another one..and again it seems so answers for me :headbang: Apparently according to all of thm i don't have IC...Even though many of my symptoms are identical to them...Anways the latest urogyno that i saw on Tuesday gave me an internal examination.And the minute he put his hand up my vagina the pain was terriable!!And then he said he began tapping on my urethera and my ovaries to feel for any abnormalities etc!He said he couldnt find anything that was obviously wrong with me!But i was like ummm "hello" clearly if im in this much pain their definetly has to be a problem...Anyways as per usual he like all others said that what i'am experiencing is the after effects of a really bad UTI that i had 2 years ago,and that it will eventually go away..BUt i mean does that sound reasonable to everyone i mean can it really take your body 2yrs to recover from such a bad UTI??Keeping in mind that i'm a healthy 19 y.o non smoker and drink only once every few months..The pain i experience is in my urethera a burning sensation often that gets worse after i urinate,but ingeneral just plain hurts a lot of the time...I can't have sex with my boyfriend because its too painful...this is ruining my life its wrecking all aspects!! Anyways the eurogyno put me on a drug called hiprex im not familiar with it..but is anyone else??And does anyone have any ideas of what i could have??i mean i have had cystoscopy after cystoscopy-AND NO IC PRESENT...so i've come to conclusion that i dont have that!!Please somebody help me!!!xoxoxox :grouphug:

[Briza]

Have you done any research on Vulvodynia and Vulvar Vestibulitis? This condition can make sex very painful, as well as ANYTHING coming into contact with the vulvar and vaginal areas. For me it causes more pain and discomfort during sex than IC does, but responds very well to the medications I take for IC (Pyridium and Elavil).

This website has a good description of vulvodynia symptoms:
http://www.diagnose-me.com/cond/C510175.html
Also see www.nva.org

[kazi]

Yes i have done some research on both of those topics and i do believe they could be in fact part of what i have.However after i had my cystoscopy done they found that there was infact slight inflammation of the urethera??What could be causing this and could it be the long term after effect of having my bad UTI 2 years ago and just be taking a while to go away??Thanks

[VickiB]

Boy, I remember being where you are, and it was absolutely horrible! Knowing there's something wrong, feeling miserable, and not knowing why! I saw multiple doctors over a number of years who could find nothing wrong. To be honest, I don't believe they even knew of IC.

Still feeling the effects of a UTI 2 years later doesn't sound right to me. But, I'm not a doctor!

Your description of your symptoms is identical to how I would describe my IC. Just like a UTI with no bacteria present. The burning is the worst part for me, and like you, it intensifies after urination. Really awful, painful burning!

I wonder about your comment that you've had cystoscopy after cystoscopy and no IC present. Are you talking about a cystoscopy with hydrodistension? (Usually done in the hospital and they put you under for it) Because I had any number of cytoscopys done while searching for the cause of my grief and they all pronounced me "fine". I've since learned that IC can't be 'seen' by this procedure. It isn't until they distend the bladder to a point where it would be unbearable if you were awake, that they can see the tell-tale signs of IC. The other diagnostic tool often used is a potassium sensitivity test, which is what I had. Some are diagnosed by symptoms alone after all other causes have been ruled out.

I hope you can find some answers soon and can get back to feeling well! Don't give up on your search,...I did, and spent more years than I should have being a captive of my diabolical bladder!

Hugs,
Vicki

[TexasHoney]

Hang in there, Kazi this disease is often misunderstood and very hard to diagnose sometimes. I had IC symptoms for about 2 1/2 yrs before I got a correct diagnosis. I finally had to change uro's and that did the trick. I think Vicki has a good idea about having hdryodistension along with cystoscopy. I hope you can get a correct diagnosis soon and start getting some treatment.


Take Care and Best Wishes
TexasHoney

[bellaluna05]

Unfortunately, there is no sure fire way to diagnose or not diagnose IC. They haven't found the marker yet. Some people show signs of it on their bladder wall, but there are also a lot that don't their IC is inside the tissue of their bladders, there is no way to see that, no blood test, no urine test. I pray that you don't, but you could still very well have IC. This is a very complicated disease, I have even had a few urologists admitt to me and my family that IC is much worse than cancer. My urologist said I would be lucky if I had cancer.
Do you have the food sensitivity's? There aren't mant diseases if any that can mimic that part of IC. A few diseases that can mimic the pain and frequency though are; Fibromyalgia, Endometriosis, and thyroid disease. Those are only the ones that I know of and they are also very hard to diagnose, I wish you the best, and pray you feel better soon!
Lara

[kazi]

Thankyou again everyone for all your comments.Yes i have had the cystoscopy done under hydrodistention.In fact i have had about 4 of them done actually. And all of them said that there were no possiable signs of IC. The pain that i get is mainly which i believe to be in my urethera.In fact last monday when the uro/gyno gave me an internal examination it hurt so much and the pain i was experiencing was in my urethera. I have now been to over 6 specialists..all of which do not know what is wrong with me.. The only abnormality that was found in the recent cystoscopy/hydro was slight inflammation of my urethera, the bladder was said to be compleatly normal... I dont really have food intolerances infact it doesnt really affect me at all with foods i eat with symptom flaring..just certain days it hurts more than others..and some days i even get no pain at all... But all i know is that i have had this for like 2years now and it has not got any better!! I feel so alone i really do...sometimes i even feel like killing myself!!i just want to know whats wrong with me!! :headbang:

[VickiB]

I'm sorry you're in this situation! Not knowing is the worst!

I do believe I've read of some here who's cysto/hydro showed no indication of IC, yet were diagnosed with IC all the same. I'm pretty sure they even had good results from typical IC treatments. Hopefully someone who's been there will see your post and respond.

Regardless of what the cause is, it's hard to have one's life affected to this extent. Don't give up searching for the answers you need to feel better!

Hugs,
Vicki

[MarthaB]

:) Kazi, I'm in the same position as you pretty much, I have the symptoms of IC, but my uro couldn't find anything wrong after my cysto/hydro,except I have a small bladder, it's frustrating, I'm not giving up though, I'm trying to find a uro who has a lot of knowledge about IC, I live in Brisbane, and as far as I can tell the really good ones are in Sydney or Melbourne, it's a bit to far to travel for me, and too costly. Don't give up, something has to be causing this pain, and because food doesn't seem to make any difference with you, it could well be vulvodynia, I do have symptoms with food, citrus and coffee are my main ones.Also I don't have pain with sex, but I get the pain the day after.
Maybe you could ask the uro or gyno if he could do the Q-tip test, it couldn't hurt,at least you know where you stand, if it's not vulvodynia, at least you can eliminate that and you can concetrate on other possibilities.
martha

[purpleviolet]

Kazi - Sounds like you need more opinion. I remember reading about some glands that are next to the urethra. I don't think they know much about them. Maybe they are involved. Also pelvic therapy? I'm in the camp of hiddein infections.