Possible IC and my ramblings..

[Godsgirl89]

Hello, I haven't posted on this forum for at least 6 months. I have been suffering from urinary frequency and urgency for over a year now and have been to see many doctors to rule out female issues, check for kidney stones, etc. I think I've finally found a urologist that understands what I'm going through and is going to get to the bottom of this. My last urologist went through a few tests then immediately mentioned botox injections or the Interstim as the only solutions for my problem. I was surprised that he had jumped to something so drastic after trying only a few medications.

My problems all started out of the blue while on a road trip back in April of last year. At the time we didn't think I had anything besides a bad UTI. Unfortunately, that wasn't the case. I have not been diagnosed with IC yet but I have had many many tests run by various doctors and nothing out of the ordinary has been found. My new doctor mentioned that it very well could be IC but he wants to do another cystoscopy to see for himself.

I have an irritated feeling in my bladder almost all the time. If I walk around for any period of time or drive for more than 15-20min. I am in extreme discomfort verging on pain if I do not stop to use the bathroom. For me, I find urinating relieves the uncomfortable feeling to some extent. It is really tough to deal with this as a college student... this issue makes life very difficult and I can't get out of the house much. I've been dealing with depression a bit but my family and friends are very supportive so that helps a great deal.

I don't know about the rest of you but I don't seem to have many triggers other than vibration and vitamin B suppliments. Oddly enough though, last night and eariler today I ate a lot of chocolate chip cookies with my friends (Chips a hoy or something like that) and I started having a lot of discomfort in my bladder (I don't usually have food triggers but I'm wondering if that's what's causing it).. I'm wondering if it was something in the processed cookies (since I try to avoid processed foods in general).. I'm having more frequency too so I think I'll try avoiding those for several days and see if it improves.

I'm hoping that my doctor can get to the bottom of this soon. It's making it hard to keep up with school work and even get to school or sit through classes. In fact, last fall I was having a lot of pain issues and I had to drop half my classes. It was pretty awful. The pain went away after a couple weeks thank the Lord. I usually don't have pain per se, more like a lot of discomfort. Today is diffeent. Today I'm having pain. It's pretty alarming really. I hope that this doesn't become the norm. :(

[NancyB]

Dear Godsgirl -

I am sorry that you are going through such a bad time. Hopefully, you and your doctor will get things figured out soon. In the meantime, you should look at this site and access the diet section. It sounds like you could be sensitive to some of the no-no foods, etc. like a lot of ICers. You also want to avoid the B vitamins, particularly the B12. In addition, you need to try drinking only Spring water that you get at the grocery store. Some well known brands are, Poland Springs, Crystal Geyser and Ice Mountain. Make sure whatever you try that it has nothing added to it.

You might want to talk to your urologist about doing the cysto-hydrodistension rather than the cysto. You can have a normal looking cysto and still have IC. He can kill two birds with one stone by doing that. When you have a diagnosis, you can then talk treatments. Those should be from least to most invasive. You were right to run from your last urologist. Much too early to talk injections or interstim.

Keep us posted on how things are going.

Hope this information is helpful to you.

NancyB:)

[Godsgirl89]

Thanks for the tips. This place is great. So many supportive sweet people. :)

I already avoid multivitamins in general, especially B vitamin suppliments because I know they aggrivate my condition. I've had a cystoscopy with a bladder biopsy done before (in Sept. '09) but it was under local anesthesia (I didn't want to be put under all the way). Wow, it hurt like heck. Worst pain of my life and my old urologist decided to stretch my urethra while he was down there without my permission. I was so so sore from that. At the time they didn't find anything.

I didn't realize that there were different types of cystoscopies. From what I've seen, it sounds like the only proper way to diagnose someone with IC is to do the cysto with hydrodystention. Wow, now I'm mad because I could have already been diagnosed if I'd had the right procedure done. I know my current doctor told me that I would need to be put under for this one so he could see my bladder properly and try and manually stretch my bladder- (he thinks it's tight and small) and see if that helps my condition. I think he did mention that hydrodistention that you are talking about. And the great part is that it sounded like my current doctor actually has treated patients with IC so that is a huge plus as he knows what he's talking about.