Probable IC

[Strode]

Hi, I'm new to the site and feel kind of funny since I'm a guy and I don't see too many on this site. Anyway, here's my story: Have had discomfort for many years in the lower abdominal/bladder area. Enough discomfort to wake me at night every few hours. Not an urgency to urinate, just enough discomfort to wake me. It's so disconcerting to wake up but there's really nothing to void! Urine stream is weak as well.

Started going to uro's and most thought I had prostatitis and put me on Cipro and other meds. Well, this just didn't help. After about 4-5 uro's, I went to one who was very thorough in his approach. Had a uro-dynamic test, ultra-sound lower abdomen, cysto, biopsy for bladder cancer, and water dilation(all fun stuff, yuck)!

The prostate was normal w/o any enlargement, PSA very low & safe. So everything pointed to the bladder, which the cysto showed had hemorrages, etc. Here I was thinking it was prostate-related all these years! A potassium test was performed, but it was negative & did not confirm IC(much to our surprise).

I was referred to an IC specialist within the same uro practice. After reviewing the records, he concluded it was most likely IC. I would agree. He has recommended the following strategies:1. keep taking cysto-protek, MSM, Arginine, etc. orally and see if that helps 2. water dilation in the hospital, 3. rescue instillations with DMSO, heparin, marcane, kenalog(please help me with these last 2, not familiar with them & probably misspelled).

I've on my 6th bottle of cysto-protek and I believe I'm at the point of diminishing returns with this product. MSM is DMSO II but probably much more effective taken as DMSO in an instillation cocktail. I have been drinking coffee and tea forever; this week I am going cold-turkey on coffee and tea and see what happens after a week. I have noticed coffee is a major irritant, with wine being #2(don't touch wine anymore).

Not sure about how to proceed, but I am pondering the rescue instillations, which would be once/week for 6 weeks.

[leelee88]

Hello and welcome...
I use to think the IC diet would not help me, but after being on it I realize now its a life saver with my meds, I need the whole combo for me to get relief. One does not work without the other.. Heres the link to our handbook you will find all kinds of great info in it, including the good foods and bad foods..Ummmm and coffee being a bad food..lol... But anyways glad you found us and yes we have men here to:smile tee

http://www.ic-network.com/handbook/

[charmedx3]

Welcome to the IC network ! you will find alot of supoort here. the diet is the best way to start, it does take a while to figure it out but it can help. I loved coffee! it just was one of the worst things I could do! I can have a cup every now and then but now it just doesn't taste as good!

[cc_orchids]

Strode,
I posted a thread a few days ago asking around for people with negative results in their Potassium Sensitivity test. Did you feel anything at all and scored low or you did not feel a single thing?

My doctor hasn't diagnosed me because I too was negative in the Potassium Sensitivity Test. I didn't feel a thing. I was hoping I would be in the 80% accurate range but it seems more and more that IC patients can have a negative result.

Do you have pain and frequency?

I'm glad you find this site. It is very helpful. The coffee will get easier if not, there are alternatives.

Claudia

[Strode]

Strode,
I posted a thread a few days ago asking around for people with negative results in their Potassium Sensitivity test. Did you feel anything at all and scored low or you did not feel a single thing?

My doctor hasn't diagnosed me because I too was negative in the Potassium Sensitivity Test. I didn't feel a thing. I was hoping I would be in the 80% accurate range but it seems more and more that IC patients can have a negative result.

Do you have pain and frequency?

I'm glad you find this site. It is very helpful. The coffee will get easier if not, there are alternatives.

Claudia

I may have been a false negative. Of course, with the cathether in there, it's not very pleasant, so you're not 100% focused on the pain/burning that is supposed to result(you're already in a lot of pain from that catheter). But the nurse said I would definitely feel it and they would know if it was a (+) reaction. But no it wasn't; I really wanted it to be an easy confirmation, and it turned out to be a disappointment.

I do not have the typical IC symptoms of pain and frequency; weak flow and sleep disruption are my main concerns.

[SharonA]

Strode...:hi: and :welcome: to the ICN.

I know you feel like you are in the minority around here, but remember one thing. We all have bladders. I don't think there are male and female ones. :lmao:

About the coffee, tea and wine. It could take longer than one week for the absence of these things to help. Stay with it for a few weeks. Let your bladder rest and calm down. Are you using the IC Diet to find out if other foods/drinks cause you problems?

[Charisse]

I think there are more men out there with IC but many are just misdiagnosed. The IC diet has helped me tremendously. It's a trial and error process that I'm learning can take people years to figure out but the important thing is don't feel overwhelmed when you see that list. There is really only a small number of foods from that list that everyone has to give up forever. Many of us can tolerate things from the "maybe" list and probably even a few from the "no" list -especially if given time to let your bladder heal a bit before re-introducing the foods. For instance I can eat tomatoes and pizza sauce just fine. I haven't been brave enough to try out pasta sauce yet but I think I'll be okay. I can also tolerate small amounts of salad dressing, ketchup and mayo. The hardest thing to give up was the coffee. I used to drink espresso everyday. I haven't had one in over a month now. I also cannot drink coke (especially diet) but I can have root beer and even sprite sometimes. Low-acid coffee that is majorly diluted has also been okay and only causes a little urgency however like Charmed said, I also lost the taste for it! I tested out Jamba Juice twice this past week and both combos I got caused pain (even in small amounts)! So never again. Amazing how juice is harder on me than low-acid coffee. It may take you awhile to figure out the diet. I've been playing with it for months now. But what I'm finding is the longer I am on it, the better I feel, and it helps to eat smaller amounts of the bad foods when you do cheat.