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I am 32 years old and was diagnosed with IC about 5 years ago. I actually started having symptoms in high school (1994) and it kept getting progressively worse. The message that I heard over and over again from doctors was, "I don't see any bacteria, but your white blood cells are so elevated that it indicates a UTI." So, they would give me antibiotics and Pyridium and send me home. It got to be so frequent that I asked to be referred to a Urologist in 1999. He did an in-office cystoscopy (most painful medical experience in my life) and told me that he didn't see anything but inflammation. He gave me a prescription for 6 months of Septra (antibiotics). That stuff gave me so many yeast infections that I finally gave up 3 months into it. I was still miserable and just kept going through the cycles of going to the medical clinic and getting more pyridium and antibiotics about every 3 or 4 weeks.
Then, about 5 years ago, I got a different message from my doctor. This time he said, "I don't see any bacteria and you have elevated white blood cells, but we can't do anything for you anymore without seeing bacteria." They told me that there was nothing wrong with me. I am a nice person, but I started crying and yelling at my doctor, "There IS OBVIOUSLY SOMETHING WRONG WITH ME! THIS IS NOT NORMAL!" I went home in so much pain with nothing to make me feel any better physically or emotionally.
I started researching as much as I could and found information about IC online. (Thank you ICA and ICN!!!) I printed out the info and went back to my doctor with it. He referred me to a new (younger) urologist. I had to start over again with "proving" that there was something wrong. For my next 30 flares, I had to get a urine culture at the hospital before I could take anything, but at least he gave me access to pyridium and some stronger pain medication for emergencies. Out of all the cultures I took, only 1 was a UTI.
I have learned a lot about my diet triggers. When I first started having these problems, I had absolutely no idea that I was hurting myself so much. Now, I haven't drank cola in 14 years, stopped drinking tea (which I used to love), stopped taking vitamins (who knew that was hurting me so much!), stopped taking cold medicine when I get sick, quit eating spicy foods, etc. It seems like my list of off-limits food and drinks continue to expand. The latest one I found was peanuts!
For me when I flare, it actually hurts the worst while I am urinating and right after. My urethra hurts and burns so badly and then it starts spasming. With each spasm, my whole bladder contracts and I get stuck on the toilet trying to pee out nothing every 30 seconds until pain medicine finally kicks in. It feels like I am getting stabbed repeatedly with a knife into my urethra.
When my pain is less than 5 on the 1-10 scale, a hot pack (rice pack that I put in the microwave) helps a lot. I go to sleep with it on my belly 90% of the time to help my muscles relax. When the pain is over 5 on the scale, pain medicine is the only thing I have found that gets the spasming to stop. I try to head it off when the pain is still manageable and I try not to take the prescription pain medicine unless I absolutely have to.
The other weird thing that happens when I have flares is that my whole belly swells up. My belly is normally not flat by any means, but within 20 minutes I go from having a little extra room in my size 10 pants to not being able to fit in size 14's. I have read about IC belly, but I wish I knew what was actually swelling.
My doctor has me on 10 mg of Toviaz for the bladder spasming and 50 mg of Hydroxyzine (Atarax) to combat the histamines. Both are helping a lot because if I am even 2 hours late in taking the medicine, my bladder starts to hurt.
I have been successfully using Propoxyphen (Darvocet) for emergencies when my pain gets completely out of control. I just read that they recalled it in November, so now I am not sure what I am going to do. (I only have 3 pills left in my emergency kit.)
So, that is my story. I am getting by, some days better than others. I am interested in trying the Botox procedure when insurance decides to pay for it, but otherwise am in a holding pattern right now. I am curious if anyone on this forum has any recommendations for effective emergency pain medicine that I should ask my doctor about? I am also curious if anybody has figured out how to help with the belly swelling?
Thanks for listening!
Then, about 5 years ago, I got a different message from my doctor. This time he said, "I don't see any bacteria and you have elevated white blood cells, but we can't do anything for you anymore without seeing bacteria." They told me that there was nothing wrong with me. I am a nice person, but I started crying and yelling at my doctor, "There IS OBVIOUSLY SOMETHING WRONG WITH ME! THIS IS NOT NORMAL!" I went home in so much pain with nothing to make me feel any better physically or emotionally.
I started researching as much as I could and found information about IC online. (Thank you ICA and ICN!!!) I printed out the info and went back to my doctor with it. He referred me to a new (younger) urologist. I had to start over again with "proving" that there was something wrong. For my next 30 flares, I had to get a urine culture at the hospital before I could take anything, but at least he gave me access to pyridium and some stronger pain medication for emergencies. Out of all the cultures I took, only 1 was a UTI.
I have learned a lot about my diet triggers. When I first started having these problems, I had absolutely no idea that I was hurting myself so much. Now, I haven't drank cola in 14 years, stopped drinking tea (which I used to love), stopped taking vitamins (who knew that was hurting me so much!), stopped taking cold medicine when I get sick, quit eating spicy foods, etc. It seems like my list of off-limits food and drinks continue to expand. The latest one I found was peanuts!
For me when I flare, it actually hurts the worst while I am urinating and right after. My urethra hurts and burns so badly and then it starts spasming. With each spasm, my whole bladder contracts and I get stuck on the toilet trying to pee out nothing every 30 seconds until pain medicine finally kicks in. It feels like I am getting stabbed repeatedly with a knife into my urethra.
When my pain is less than 5 on the 1-10 scale, a hot pack (rice pack that I put in the microwave) helps a lot. I go to sleep with it on my belly 90% of the time to help my muscles relax. When the pain is over 5 on the scale, pain medicine is the only thing I have found that gets the spasming to stop. I try to head it off when the pain is still manageable and I try not to take the prescription pain medicine unless I absolutely have to.
The other weird thing that happens when I have flares is that my whole belly swells up. My belly is normally not flat by any means, but within 20 minutes I go from having a little extra room in my size 10 pants to not being able to fit in size 14's. I have read about IC belly, but I wish I knew what was actually swelling.
My doctor has me on 10 mg of Toviaz for the bladder spasming and 50 mg of Hydroxyzine (Atarax) to combat the histamines. Both are helping a lot because if I am even 2 hours late in taking the medicine, my bladder starts to hurt.
I have been successfully using Propoxyphen (Darvocet) for emergencies when my pain gets completely out of control. I just read that they recalled it in November, so now I am not sure what I am going to do. (I only have 3 pills left in my emergency kit.)
So, that is my story. I am getting by, some days better than others. I am interested in trying the Botox procedure when insurance decides to pay for it, but otherwise am in a holding pattern right now. I am curious if anyone on this forum has any recommendations for effective emergency pain medicine that I should ask my doctor about? I am also curious if anybody has figured out how to help with the belly swelling?
Thanks for listening!
to the ICN Morgen!
I wanted to add my welcome. It sounds like you are gaining control of your IC and if you look around here on the website there is a lot of information to be learned. Also go to my signature line and you will find our area on the diet. That may give you some guidence of some foods that may be ok and some to avoid or approach with caution.
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