How it started for me.

[loram]

I am 37 now and didn't get diagnosed with IC until I was 35. I always had problems when I was younger getting an ultrasound. I could never hold the water, so they would pump it in me, and it was extremely painful and I would end up crying my eyes out. This went on for years, but I never had IC symptoms besides going to the bathroom a lot.

When I turned 35, I one day woke up with a terrible bladder infection (a real one.) I was bleeding like crazy. I went to the doctor and for two months I suffered trying different medicines. Eventually I had no infection but I still had symptoms of the bladder infection (urgency and frequency). This was probably IC. The doctor eventually gave me Noroxin and finally it went away.

Six months later, it came back again. I had all the testing done for VD (not that I thought I had it but had to be ruled out,) overactive bladder, etc... I begged the doctor to give me Noroxin, and it went away within a few days. A doctor finally sent me to a urologist who did a cystoscopy and found that I had IC. He gave me a prescription for Noroxin and Elmiron to take any time I flared. I refused to take it after a month because I didn't know if I would ever get pregnant being in a new marriage. I started reading up on IC and found a diet on an IC website. I'm sure you have all seen this (low carbonated drinks, caffeine, no nuts (accept a few kinds), no citrus, etc... I would follow the diet until the symptoms went away and eventually would bring some foods back into my diet.

I did have a bladder infection here and there along the way and would just tell the doctor to give me Noroxin. It always seemed to take care of the problem.

Now I have symptoms again (urgency and frequency) and another new doctor (who is not a urologist.) In addition to the IC symptoms, I had inflamation in the bladder area and my lower back hurt, but there was no infection. This doctor gave me tetrcycline and I went back on my strict diet. After going back to him four days later with no relief of the urgency and frequency, he prescribed me Detrol. So, that is what I'm trying now. Once the symptoms go away, I will get off the Detrol and stop the strict diet.

How do I think my flare up came back this time? Well, I recently started eating beef chili for lunch which had tomatos (this is a no, no), I was also taking a lot of bathes which causes me to have a yeast infections, I also switched our toilet paper to an offbrand that seems to leave little particles on me which could have gotten up into my bladder, I also switched to a new kind of soda which at the time I didn't read had citrus. And, last but not least, I ate a bunch of chocolate cause I'm a chocohaulic. I believe this combination of things caused my flare up.

I guess we all have to figure out what is causing our problem and what procedures or medicines you can take to make you feel better. I realize that some people are more serious than me, and I feel for those people. I go crazy just after a couple of days of that urgency and frequency feeling. I know eventually it always goes away for me, so that is my only good outlook. I hope the real causes and cures will be available soon.



[This message has been edited by loram (edited 11-30-2000).]

[ICNDonna]

First of all, I'd like to welcome you to the IC Network. You'll find a lot of supportive people here, as well as a lot of good information. If you haven't found it yet, here is the link to the Patient Handbook on this site: http://www.ic-network.com/handbook/

I'm glad you have found things you can do to keep your IC under control. It can take a long time, but most of us do finally get there.

If you have questions, please post them. We aren't physicians, but are willing to share our own personal experiences.

Sending healing thoughts,
Donna

[christina]

Welcome to the ICN! We are glad you found us and that you were willing to share your story.

Somedays I think that I am in control of my symptoms too and then something happens like with you and I am back to figuring things out again. It is nice to know I am not alone with that.

Sending you a welcoming hug,
christina

[loram]

Thanks you all. This website has helped me realize that my bladder is very sensitive. My husband use to be a chemist and would break out from chemicals, so he switched careers into computers. The only thing I can do at this point is stay away from irritating foods and keep with the Detrol till the feeling goes away again.

It is nice to talk with someone who also feels what I feel. Most act like it can't be that bad because I'm not rolling on the floor crying. But, I deal with the pain by trying to ignore it most of the time. This is very difficult though as you know it can get quite painful when your up and walking around. I feel fine mostly when sitting down or sleeping at night.

Lora

[icmdk91]

Hi Lora:

Welcome...I know what you mean by trying different things to make the pain go away. I've had the symptoms for IC for about 10 years, and was finally diagnosed about 1 year ago. It is hard to hide the pain, but you will find that there are many brave women and men on this site that do a great job just getting through a day!!! Don't worry what anyone else thinks about how you act. I wouldn't wish IC pain on anyone. I believe it has made me more empathetic of others with chronic pain. Keep your chin up and come here often for advice and encouragement, you will be glad you did. Mar

[loram]

You know it was really strange today, I felt terrible all day and drank water all day, then late afternoon, I drank a caffeine free Pepsi, and now I feel great. Go figure. You would think that could be the worst thing, but maybe there's something in the Pepsi that made my bladder feel better.

[loram]

Well, the Detrol worked wonders. I'm already feeling better just after three days on it. It works much faster then Elmiron, which is what the doctor claimed.

[ICNDonna]

Elmiron takes up to six months or longer to be effective. For those who get relief from it, it is well worth taking it. I'm very glad the Detrol is offering some relief in the meantime.

Donna

[loram]

I suggested Elmiron, but the doctor said Detrol works much faster and doesn't make your hair fall out.

[loram]

Well, my doctor gave me Detrol samples and told me to call him back if they made me feel better. I called him back and said go ahead and prescribe them cause I felt a little better. He never did. So I called the off hours doctor and asked him why wouldn't he had done this. He said he probably just didn't get the message. He prescribed one month supply. So I called my doctor the next day to have them extend the supply because one month is not a long term plan for maintaining this disease. He never called me back or prescribed anything again. So, since my doctor does not call me back, I'm left without any help. So, I went to the drug store and bought about 10 vitamins and herbs recommended on this website and some others. I'm hoping they will help. I'm also switching doctors. My doctor obviously is not interested in my case and doesn't care to help me maintain my health so as to not flare again. I hope the vitamins help. I can't believe a doctor is so rude as to not call a patient back and tell them why they are not going to prescribe you a drug or at least send me to a urologist to have them treat me. I asked twice to go to a urologist and he totally ignored me. God will punish those who are cruel to others in one way or another. I don't seek revenge, because God knows who has done bad deeds.