28 and just diagnosed with IC...

[MVH4012]

I'm 28 and have recently been diagnosed with IC after 4 years of being told I have chronic epiditimytis and chronic prostatitis. My follow up appointment is tomorrow and I really don't know what kinds of questions I should be asking my doctor. He has already put me on Elmiron, but I'm not quite sure if it's helping or not since I still get moderate to severe pain in my testical, severe pain in my abdomin, and the need to urinate sometimes 15 times inside of an hour. Can anyone guide me along?
Thanks,
Mike

[Romanqueen1]

Mike,

I would ask your Dr. about the possibilities of having IC? It sounds like it or maybe it is just a
UTI? I am not a Dr. but can't hurt to ask. I wish you well soon. You aren't alone.

Lots of hugs!!!!!:-)

[Romanqueen1]

Mike,

I would ask your Dr. about the possibilities of having IC? It sounds like it or maybe it is just a
UTI? I am not a Dr. but can't hurt to ask. I wish you well soon. You aren't alone.

Lots of hugs!!!!!:-)

[marsha crawford]

Sorry your hurting, I know how it feels. You'll probably have to have them look up in your bladder to see what shape the lining is in to get a proper diagnosis, then take the Elmiron and you will get relief after a little while. It worked great for me for 4 years. Drink baking soda water - 1/2 tsp in 6 oz water to alkalinze your urine, eat the IC diet. There are lots of things to try... I'm still trying new things when I get desperate. Hang in there. Let us know what works for you!

[autumn2]

Mike,
I am 28 as well and was diagnosed when I was 23. I have yet to find a treatment, but will be starting DMSO instillations in about 3 weeks. I would ask your uro about Prosed if it still burns when you go to the restroom, I have been taking it the last 4 weeks and it numbs my urinary tract so that it does not burn and hurt as bad. Just listen your doctor and do what he/she says. You want to discuss a hydrodistention as well, that helped the first time with me.
GOOD LUCK and know that you are not alone.
HUGS! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Mrs Thompsen]

Hey Mike,

I'm much younger than you but I have been dx with IC for over five years. Recently I was taken off Elmiron due to severe side effects that made me so ill after a dosage increases eight months ago. My advise to you would be to do as much research on your own as you possibly can. You will need to listen to your body and hear from others what they have gone through in order to better use your Urologist. They can only do so much for you if you do not know what to tell them about your struggles and the changes you notice after starting certain treatments. Watch out for side effects of Elmiron and be patient with it also, it takes up to several months to "kick in." I have had great success with Cimitedine, an acid reducer purchased over the counter that my Uro suggested. It prevents and calms flares and is not nearly as expensive as Elmiron! [img]rolleyes.gif[/img] I haven't heard many people mention it thought so you should ask.... I wish I could think of more right now, but I'm kinda in a rush. I hope to keep tabs with you, let us know how things go with your follow up and what kind of new questions are raised.

GOOD LUCK!!

[Rob]

Welcome to the ICN. This is your first step in understanding IC. Read everything and do some research. You'll find that everyone's experiences are different. For example, I have a lot of problems with driving or being in anything moving. Others are fine with driving. Foods will be the same thing. You'll have to discover "trigger" foods on your own.
Doctors will vary as well. Due to the fact that no one really understands IC, there are different views on how to attack it. My doctor refers to it as the shotgun method. Throw "a little a dis' and a little a dat'"at it and see what happens.
I'm sorry that you have to meet all of us, because, well, that means you have a challenge as the rest of us do. However, we're glad to help out and you'll find everyone here is extremely helpful.
BTW I was diagnosed when I was 28 as well, just last year.

[scottiea42]

MVH, best of luck. My father has been dealing with symptoms of IC, but he has yet to be diagnosed with the disease. My family and I have been trying to research as much as possible so if we can provide you any insight I would be more than happy to help as much as I can, but we are still new to this as well. I just purchased some books online for my mom and I to read and if they are worth the money (one book was about $100)I will definitely let you know.

Wishing you the best....

[Jim in San Antonio]

Mike,

Have you considered a hypogastric plexus block? The doc who did my last one had good success with another guy that had chronic testicular pain (the block helped for about a year).

I haven't been "officially" diagnosed with IC by a urologist (potassium leak test was negative). Was told I had chronic prostatitis; then my 5th urologist found prostate cancer. Appears not to be prostatitis (since I don't have a prostate anymore!).

How were you finally diagnosed? Hydrodistention?

Maybe try a specialist in "pain medicine" (they're trained as anesthesiologists, then had more training with nerve blocks and steroid injections), along with the urologist?

[LT]

There are a group of us that believe chronic "non-bacterial" prostatitis is IC. There is a clinic in Tucson that is going back to the old treatment of prostetic massage and then checking urine samples. After days of "massage" (which is actually very painful) these men are showing up with bacteria in their cultures, are then treated accordingly with antibiotics and getting better. A woman was recently treated at this clinic who has IC and had the same results (yes, women have a prostate gland also, along the para-urethral glands). If you do research on biofilms you will understand how this is possible when standard urine tests show no bacteria. If you want to check it out, the url for the clinic is: http://www.prostate-usa.com/

[Kara]

Hi Mike, you are not alone. I am 26.

I would encourage you to read this article on doctor patient relationships. It's on the ICN's patient handbook web page.

Here is the link: just double click below

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

I also encorage you to look at the Men's Resource Center:

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


I hope these 2 links can help you out before you see your doc again.


Best Wishes,


Kara <img src="graemlins/blink.gif" border="0" alt="[blink]" />