urethral issues

[Mary Ann Maurer]

:confused:So after 3 years of this urethral stuff off and on I just about have had it, I am back to starting my urethral suppositories again,it seems a few people here post this as issue, I'd rather take bladder pain than this, it also adds to my vulvodynia, my doctor told me yesterday it seems after a combo of medicines most people do get better and it resolves, he said I'm the toughest one yet, I mentioned atarax he said most of his patients complain of being really tired on it , it may help I'm worried about weight gain and being tired I stopped the elavil and neurontin for that reason I get so sick of feeling drowsy. my next appt is in 3 mos. just needed to vent.

[elamar]

Have you tried these yet? The first ones I used were called Traumeel. They come in little pre-filled syringes (no needles) and are injected directly up the urethra. They were made by a compounding pharmacy. Then we changed to chromolyn. Same deal with the syringes and pharmacy. They didn't stop my urethral problems, but did heal my VV. I work with Dr. Whitmore's office in Philadelphia, maybe your doctor can contact them for ideas. I have recently started taking cantharis which is a natural supplement you can find at whole foods market. It's a vial with tiny pills and you take 5 three times a day. I have had better luck with that, than anything else. And please IC Donna, don't freak out that I posted this here instead of the alternative treatment thread. I am posting a mix of ideas for people, and always encourage everyone to always check with their doctors first.

[Mary Ann Maurer]

Thanks Elamar how long have you been dealing with urethral issues? it's 3years for me I had a year of remission, I will have to give the cantharis a try.

Take care.

[elamar]

My IC started very suddenly with a uti about 2 years ago. My urethral pain didn't start until about 4 months into it. I still struggle with the urethral issues and pain. I get swabbed every month and samples sent out by my doctor, but basically she tells me my urethra is "clean as a whistle"!. There is no infection present. I have much better pain relief in a reclined position. If I could just stay off my feet all the time, I'd feel great! The cantharis does work for a while, but I can tell when it's wearing off. I've recently decided to go gluten free for a while to see if that helps. I've never been tested for celiac, and really don't have any symptoms, I've just read some stuff about inflammation in general and sugar and wheat can really trigger off reactions in the body. So far the gluten free diet is far easier than I would have guessed. I'm still not as good with the sugar! I have a terrible sweet tooth. I have cut down on most days on the amount of sugar I eat overall. Anyhow, I hope you have luck with the cantharis.

[Mary Ann Maurer]

my symptoms are more of that burning sensation no stabbing, after I urinate I have that weird feeling that last for awhile, I have seen many of your posts in the past about your'e urethral symptoms, you and I are odd balls since most people seem to get better with that as a issue. I would prefer to have bladder pain sometimes than my urethra. I am a big sweet eater too! always have been, I am curious to read about what you mentioned in your'e previous email about wheat and sugar.

Take care

[elamar]

I was in my public library a few months ago and saw this book "Inflammation for Dummies" on display. I read through it and alot of it makes sense to me. I am so frustrated with all this IC stuff. I have no other symptoms except burning bladder/urethra. All my x-rays, mri's, cat scans come back totally normal. All tests for diseases including vd and lyme, normal. Only maybe once a year my urine comes back postive for bacteria, but usually not. I passed the potassium test no problem, my hydroextension was filled to 950 cc's of water. I had a few spots of pinpoint bleeding - but I always believe it was due to the stretching. My biopsy just showed "inflammation" as my doctor put it. DUH! They never tested for mast cells. Anyhow, I do think this bladder stuff is some sort of inflammation issue within my body as opposed to "real IC". I'm not trying to be in denial about IC, I just don't respond to many of the IC meds, and actually get worse with instills and Elmiron. One of the things I read in the book above is how sugar and wheat are really not natural to our bodies and your body responds by creating inflammation. It kind of goes back to the caveman days, just think to eat like a caveman! Mostly meats, and stuff they could forage like fruits, veggies, nuts and berries. Wheat and Sugar didn't really come along much into man's diet until after the 1700's. Anyhow, just thought it was interesting and feel like I'm sort of on my own with this IC. I guess the only thing I can control is what I put in my mouth! I have a had a couple days here and there when I've been "good" and not eaten wheat or sugar, I did feel less burning. The wheat is no problem, it's the sugar for me! I am still working on that! Good luck to you.