help?

[Fairyduster]

Hi-My name is Jess and I'm 28 years old. I originally went to a urologist about 10 years ago and I believe I was diagnosed with IC at the time. Back then, I was going to the bathroom practically every hour, if not more. He put me on medication at the time and it helped, but after the refills ran out I never went back. I'm not one for pills and have simply dealt with it the past ten years. Starting over the summer I started to have the feeling that I was getting a bladder infection. Little feelings that would come and go. Last month they got worse so I went to a Dr and they said I didn't have a bladder infection and sent me to a urologist. I went this week and was officially diagnosed with IC. The problem is the pain has gotten worse. My period last week was painful and I'm having pains ever since. I made an appt with my gyno, but can't get in until next week. I understand that pain is part of it, but have never experienced pain until the past month. I'm panicked and worried that perhaps it's something else. My question has anyone else experienced the same thing I have? Frequent urination for years and then pain seemingly coming out of nowhere? I have prescriptions for Elmiron and Urelle but I'm a little freaked out to take them. I have this crazy fear that the pain is caused by something else. I'm sorry if it sounds like I'm babbling but that's probably because I'm scared.-Jess

PS-I just wanted to add, as if you couldn't tell by my freaked out post above, that I suffer from anxiety that can get pretty bad at times and it's definately not helping my situation!

[Tami4Kaylie]

Hi Jess

Calm down honey. Go to your appointment next week to see your GYN, You need to do that anyway. In the meanwhile follow directions of the urologist , And stay on that anxiety med, Or perhaps go for a second opinion. And may I suggest read the stories of all the IC patients on this site. You will cry and you will laugh!! And you will find some have a very mild case and others are very severe. Some go into remision , Some really have it under control by diet and some live through HELL. It has helped me tremendously to understand what my daughter is going through. Best of luck. :)

[ICNDonna]

:welcome: to the IC Network. You'll find a lot of support and information here. Since you've already been diagnosed with IC, I do agree that taking the medications ordered by your urologist is a good idea.

I also suggest that you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- beginning with the section on DIET --- and begin an IC diet today. That single step may help substantially with your pain.

It's not unusual to have pain with interstitial cystitis, but the vast majority of us feel good most of the time. My IC was diagnosed in 1975 and one thing I would like you to know is that there is life with IC. Like most ICers, if I eat or drink a trigger, or if I don't drink enough water, I experience pain --- but if I stick to the diet and drink six to eight cups of water daily, I do well.

Warm healing thoughts,
Donna

[Fairyduster]

Thanks for the responses. I'm about 50 times calmer right now. The pain last night was really freaking me out. I know pain is part of IC, but the thing that gets me is I've had this for 10 years and have never experienced it. It's like this terrible pain came out of nowhere. Does that happen often?

[traceann]

Hey there fairyduster and welcome to the gang! Mine started out as mostly frequency, then some discomfort started, then I had a UTI and wham, the bladder pain started. I too was scared, any kind of pain is a scary thing! ;)

But, I have to say that, usually the time around diagnosis is the worse, as your bladder has had time to get irritated for gosh knows how long, and now you have to start over with the medications, etc. For me, the first huge flare I was having that got me my diagnosis, was the only one that bad. The rest of the time, while waiting for my medications to kick in was not something I couldn't handle with watching my diet and home-remedies to help me out. (heating pad, a tsp of baking soda in a big glass of water - but be careful if you have any salt sensitive health issues, etc)

So, definitely keep your chin up, and take your meds! :) The Elmiron helped me out greatly and has helped quite a few, so give it a shot! But, it's not a quick immediate fix - it can take 3-6 months to feel some benefits/improvements, and 6-12 months to feel full benefit of the med. So, for me, while in that time frame, diet was a HUGE tool in controlling my symptoms and keeping me comfortable! ;)

Hope you are feeling better soon!!!

[DoulaSue]

Yes, my pain came out of nowhere. I've always had a very active bladder, it's the joke between all my friends that I always need to be near the bathroom, wherever we go. However, one month ago I started peeing ALOT of blood and it hurt like crazy, seemingly out of nowhere. I just woke up one morning and BAM, crazy pain. The pain has lessened over the past month, however hasn't gone away completely (I'd describe it as uncomfortable now more than painful, but maybe I'm just used to it now), and I'm seeing a Urologist today for the first time. Terrified that it's IC, terrified that it's not.