Newly Diagnosed

[Cen]

I probably have had this problem for a few years. I'm only 16/17 years of age. I'm male. For the most part, it began with just painful urination. Pretty mild and I thought it would just come and go. One day last year during the summer I was in immense pain (probably an IC flare) and could not sleep. Warm tub baths seemed to help and I eventually fell asleep. I learned to live with the mild pain and thought it was normal. (Big mistake)

I went to my G.P the next day and she said I had a UTI. Gave me antibiotics. Worked for the first day (probably because of the anti-inflammatory effect) but the mild penile pain came back. I was attending school during the year and went back 2 more times to my G.P during the year, all of which ended with a prescription of antibiotics which didn't work.

Eventually my parents asked for a referral to a uro. The first appointment I was given Ditropan XL for "urge incontinence." I took it for about 3 weeks and never really made a difference. I went back and we tried Uroxatral to relax the muscles, did not help either.

Yesterday I had a cysto with hydro (with a rigid cystoscope, hurt really bad) and was officially diagnosed with IC. I was given this big package with information about IC (led me here) and was put on Elmiron100mg 3/day. Little did I know there would be excruciating pain post-procedure. However, after I unloaded all the water my uro put in, I felt a lot better. Symptoms seem to have gone away for most of yesterday. I also slept all the way which I haven't been able to do in a long time.

I then took Prosed for the post-procedure pain and I noticed after looking around on this site that dyes irritate the bladder and Prosed has a blue dye on it. I also ate a bowl of cerial. I'm assuming those two mistakes have caused the mild pain to return.

My uro has ruled out all other possible diseases except the prostate which I will ask him to check in the next appointment next month.

The pain I've had now is mild and bearable for the most part. Frequency and urgency are pretty annoying though. Coupled with Nausea and pelvic pain.
The post-procedure pain is still there but is diminishing slowly. I'd also like to add that I've held urine a lot over the years and this probably cause the "protective layer" on the bladder to break down. If this is the cause I hope Elmiron will help me, I plan to attend college soon.

[SharonA]

:welcome: to the ICN. I hope that you have had the opportunity to look around this site at all the great information available to you. Jill has done a superb job putting all this together for us.

The first thing that stuck out from your post is your age. I am so sorry you are having these problems at such a young age.

The next thing was "Yesterday I had a cysto with hydro (with a rigid cystoscope, hurt really bad)". Were you awake when you had this done? If so, I am so sorry that your doctor had you go through this without giving you anesthetic and having you asleep. Many, many of us here were diagnosed with a Cysto/Hydro but we were asleep. My heart aches that you had this done while awake.

Please take the time to check out the IC Diet available in The Patient Handbook. Many here have much relief after learning what foods/drinks can trigger their symptoms to flare. I can not eat/drink citrus except in very small amounts after taking Prelief. It is a OTC product that works to reduce the acid in foods/drinks in your stomach. You can learn about Prelief here, also. You can order it here or...I get mine at Walgreens.

You probably already know this, but it takes from 6 to 12 months for Elmiron to work. Although there have been some who have posted that they were helped by it in less time. It is one of those meds that you have to let work for the long haul before you decide if it is helping you or not.

There are many meds/treatments available to you. You can find out about them in The Patient Handbook.

One very important thing to remember at this point. There is life with IC and your hopes, dreams and desires for yourself are not over. Keep trying everything you can until you find the meds/treatments that work for you. Don't give up on yourself.

I wish I could tell you to do this or that and it would work. That's not the way it is with IC. IC is a very individualistic condition and there is not (at least for now) one thing that works for all of us. Hope is there that, one day, this will not be the way it is...That someone will discover the cause for IC which will lead to a cure or, at the very least, the "magic pill" that will help us all.

We have several young people here who post. There are some men here, also. I am sure that one or a bunch of them will come along and reply to you. Reach out to them. They have been where you find yourself, now.

Take courage, all is not lost. There is help and there is hope.

:) :) :)

[Cen]

Thanks for the support. Yes, unfortunately I was awake when he did this. Most of the procedure was just mild discomfort. He then said he was going to attempt to stretch the bladder out with water. A few seconds later, the pain was as if someone just stabbed that area with a knife and I had to endure a few seconds while he took the scope out so I could go relieve myself.

I also noticed that my flow has gotten better after the cysto. Don't know if this is related, though.

As of right now, there is still that mild penile pain but nothing that makes me go to the bathroom 60 times a day. Maybe once an hour. I also started the IC diet a while ago, when I suspected that I had IC but was not properly diagnosed yet.

[VickiB]

OMG, having that done while awake must have been excruciating!

Sharon covered it all so well. She's right, there is both help & hope, so hang in there!

Welcome to ICN,

Vicki