need to be diagnosed

[ophelia]

Hi I'm new to the forum. I haven't been diagnosed yet. I'm 30 years old and have been having symptoms for 2 years. I'll try to keep my story short.
I've had frequent uti's throughout my 20's. Two years ago I had a suspected uti, was going every 5-10 minutes with urgency but no burning. I had 2 neg. cultures. Was put on antibiotics anyway, frequency/urgency was better but I was still going 30 times a day. I went to the urologist who was rather short and dismissive with me. He did an ultrasound on my bladder, sent me for a pelvic ultrasound and urodynamics. Nothing showed up. He told me he thought I had a narrow urethra. He stretched it then did an in-office cystoscopy. He said my bladder was fine and to come back monthly for stretching. I never went back because I did not like the doctor+the stetching did nothing.
The frequency/urgency continued until I got pregnant last May, then it went through the roof. Before I was going about 25-30 times a day, during my pregnancy it was 60+. After I had my baby the frequency lessened back to 30 times. But now I have irritation in my bladder, pelvic pain+swollen belly. I can't do any jarring exercise or my bladder goes into spasms.
I recently went to another urologist who is very nice. She did an in-office cysto, which I now realize does not diagnose IC. I always assumed I didn't have it because both cystoscopies showed nothing. She thinks I just have a really overactive bladder. I think its IC. The urodynamics showed nothing+I don't leak. I can't drink coffee, soda, tea, all those irritating things or I'll get spasms.
She wants me to try detrol when I'm done breastfeeding. Has Detrol helped anybody here with IC or is it harmful? I think I should be tested for IC. Does the hydrodistention cause you to be laid up for an extended period of time? I have three small children 4,2, and 6 months that I'm home with and need to be on my toes for. Could I be diagnosed with the potassium test alone? I hope so. For now I'm going to try the IC diet and prelief(is prelief safe for nursing?)When I'm done nursing I'll go back and ask about IC testing. I'm done. Sorry so long.
This is a great site with alot of useful info+it's comforting to know I'm not alone.Thank you!

[Sarojini]

Hi and :welcome: :)

I do agree that you need to go back for some more testing. As for the hydrodistention, recovery time depends on the person. When I had mine, I was okay, up and around, after about 48 hours. Perhaps I would have been up sooner, but all of my muscles were extremely sore due to the paralytic agent they used during my surgery (I was under general anesthesia). I did pee blood for about 24 hours, but each time I went the bleeding got less and less. All in all, it was not bad at all :)

As for the potassium test, more and more doctors are using that as the sole diagnostic test now -- so yes, you can be diagnosed by the KCl test alone :)

As for whether these meds are safe for nursing mothers, I don't know. Some others here might know, but you should talk to your doctor about that.

[creatingkarma]

:welcome: to the ICN! I agree, you need to get a definite diagnosis! You can be diagnosed by either cysto/hydro or the potassium sensitivity test. In the meantime, have you checked out the ICN's Patient Handbook? The link is at the top of the page & you can read about all the treatment options. That is a good place to start! I also suggest that you try the IC diet to see if that helps you since you've already stated that coffee, soda, etc is irritating to you. You can read about the diet in the handbook. I don't know about taking Prelief while pregnant. Sorry. I hope someone else comes along who can answer your question or you could call a pharmacist & ask.

[ophelia]

:) Thanks for the replies and encouraging words. I will visit my doctor again soon. I'm nervous to ask for IC testing. I really like this doctor, but I have a feeling she doesn't know much about IC or she would have brought it up as a possibility. I'm just not up to going through the whole process again with another doctor. But I guess that's just the way it goes with this frustrating illness.:confused: Lots of ladies(men too) here have gone through worse than I. Thanks again for welcoming me.

[amber83]

I hope you find some answers soon ophelia!
There is nothing worse then not knowing the cause of your pain.
I'm glad you have found a good urologist. Hopefully you'll have some answers soon. Be sure to post again and let us know how your doing.