Finally Diagnosed

[brandym]

To start with, I am 24 and I have had bladder infections since i was 9. I was at the doctor every other mon for infetions. My parents didn't have insurance and it just so happened that my aunt was a doctor. Shes' treated me since I was a child. If you've ever had a doctor in the family you know how family docs treat you. They just put a bandaid on it and you go home. I knew it had to be something more than just "infection" for all those years. But hey I was a kid; what did I know? I got married at 18. As you all know when you get married you have lots of sex. Well, then it really started getting bad. I had infections every month, hurting almost all the time, and sex was really painful. At 20 I was FINALLY reffered to a urologist. Well is was in his office for a total of 20 minutes and he ordered a CT on me. He got the results a few seconds later, said it was all clear and sent me home. So in my mind I was thinking "well great theres nothing seriously wrong with me it is just infections." Well the following month I woke up in the middle of the night vomiting and had severe pain in my mid back. It was so bad all I could do was sit in front of the potty and just cry. My husband found me and took me to the ER. They immediately put me in the hospital. I had a really bad kidney infection that had gotten into my blood. I was spiking fevers as high as 103.8. I got out and nothing else was ever done. I was just put on Macrodanton every night at bedtime. I sufferedf with this every month for about 2 years. I finally had my fill, I couldn't take anymore. So I went to a local rehabilitation center in my home town. I had no insurance so this would probably be my best bet. They refered my to a urologist about 2 hours away from home. I went to my first visit and he just knew he I had kidney stones. He ran the tests and no stones. Next he tried running the scope on my bladder. As soon as he inserted the scope I almost jumped off the table. I tried so hard to take it but I couldn't. He pulled it out and he did get a glace of the inside of my bladder. He said it looked like someone took a torch to the inside of my bladder. It was completely burned. He performed a biopsy about 1 week later. When I woke up from the procedure he told me what all he found. He diagnosed me with IC right then and there. My lining was completely gone. All the years of infection has damaged my entire bladder wall. He also took out a lot od dead cells that were built up along the tip of the urethra. After healng from the biopsy I actually felt better. I went about 3 months with no infection or pain. After the 3 month the symptoms came back. This time worse than ever. He decided to start me on Elmiron Cocktails. I done those for about a year and a half. They never worked for me. Although the flare ups weren't as bad after the fifth treatment, it started getting worse again after the nineth one. I still got an infection every week right before my period. He said it was because I always kept bacteria in my bladder but for some reason the bacteria only sticks to my bladder wall right before my period; therefore it causes an infection and a flare up. Let me remind you "I HAD NO INSURANCE". But he was wonderful he never once asked me for a dime. He put me on Elmiron, Macrodanton, Detrol LA, Pyridium Plus, Lanacain (with a surenge to insert directly in my urethera) and Bactrium. I have recently moved to VA and am in desperate need of a great urologist. I now have insurance so I can get the best of the best treatment.

[traceann]

Welcome!

Hello and to the gang! Glad you found us It's a great place for all kinds of information and support - and finding out you're not alone.

I am so glad you finally got a concrete diagnosis, that had to be at least a relief to finally have a name for it and way to proceed with regards to treatments etc. I too know what it's like to start IC diagnosis/treatment with no insurance, it's scary to say the least, lol. I too was glad when I finally had good insurance to help with the monthly Rx's!

Once again, let me say welcome to the gang!! (oh and there's information here on locating a medical care provider, here's the link to the page:
http://www.ic-network.com/md/ )

Hope this helps a little bit!!!

[stacyY]

Welcome to the group Brandy;
Wow what an experiance you have had you poor girl. Only 5-10% of my bladder is effected, I cant even begin to know what you hvae been feeling threw the years. I am happy to hear you have insurance now.
BEfore did you ever try to get from the state insurance, like medicaid? Thats all i have now for my self. My doctor made me go to get it and iw as lucky to get on the program becuase I have had 4 differant things done.
Have you managed to work with your situation? OR have you filed disablility? I cant imagin that your able to do much. But if you do wow i give you credit.
I am glad you where able to get the right diagnosis though. But who on earth did you manage to get a scope done with out being put to sleep? I have not had a urologist do such a thing or even surgest it. I think i would been screaming.
Well i wish you the best dear, and i hope you will be able to get better soon, and somer relief also. take good care
stacy