Announcement

vm · 10-21-2002, 09:08 AM

I have really never had "pain", so to speak with my IC. I have had great discomfort, but have been lucky enough to avoid pain so far. The worst for me is feeling like my bladder is full all the time and not being able to relieve that feeling even after going to the bathroom. So, if you are asking if you can have IC and no pain - the answer has been yes for me.

I have been on Elmiron for a year now and it has helped immensely with the frequency and feeling of fullness. I say that as I sit here thinking I may have an infection - going to ask for a culture tomorrow... Neverending... But I USUALLY feel really good these days. And the diet helps with my symptom relief, too.

**Derrick** · 10-22-2002, 04:55 PM

Hi,

I'm a male that was diagnosed in Aug 2000 at the age of 30 with IC after undergoing cysto/hydro with no biopsy. My symptoms began shortly after my 25th birthday in Feb 1995.

Since 1995, I urinate anywhere from 15 to 20 times a day. I wouldn't really say that I have pain, just a general feeling of discomfor as my bladder fills up.

Most folks seem to feel that their is a food component to IC and the associated flares. I haven't been able to identify any trigger foods.

When my symptoms began in 1995, frequency was my only complaint. But as the years have gone by, I have become worse in terms of having developed erectile dysfunction a few weeks after I turned 30.

I realize that this might be a difficult subject for a mother to discuss with their 16 year old son, but it's important for him to let you and/or his doctor know if he's having problems with that part of his body.

Since undergoing my initial cysto/hydro, I've also had numerous other tests and procedures in an effort to pin point the cause of my disease and reverse my erecticle dysfunction.

The things that I've tried include the following:

1.) MRIs done from the top of my head to my pelvis. Nothing was found with the exception of a small disc protrousion at L5-S1. After long discussions with a neurosurgon, I was told that this was not the cause of my bladder or erecticle problems. He didn't recommend that I try epidurals to see if we could get the disc off of some descending nerve roots that do play a role in bladder and erecticle functioning.

2.) Bladder cocktails and DMSO bladder installations. Absoultely nothing came of these treatments. I now believe that this is a quick and easy way for doctors to make money off of insurance companies.

3.) Undergone SSEP and CAV-VAS procedures. Urologist was puzzeled after completing these tests as to why I was having erecticle dysfunction. Said that I "passed with flying colors."

4.) I've tried Elmiron and didn't get any of the benefits that most people seem to rave about.

5.) I've seen an endocrinologist and had a complete work up done. Upon getting my results back, this doctor was puzzled as to why I have erecticle dysfunction and bladder problems as well.

6.) Tried Dr. Fuzzy in South Dakota. This was a complete waste of money. I still can't believe I mailed a urine AND sperm sample in the mail to this guy. Just goes to show you how desperate some of us are to get our lives back I suppose.

7.) An ungodly number of urinanalysis and sperm tests. The only information I got back from urine tests is that they couldn't culture anything. Sperm test results said that some of my sperm were "swimming funny." Whatever that means.

8.) Submitted myself to another cysto/hydro where they took biospy samples and performed PCR testing to see if they could find traces of bacterial DNA. They found absolutely nothing.

9.) Subjected myself to two different tests to determine if the cause of my frequent urination and erectile dysfunction was actually prostatitis instead of IC. Test results came back somewhat mixed, but doctor still thought that I definately had IC.

10.) Back in March, I enrolled in the BCG study at Stanford Medical Clinic in Palo Alto, CA. After flying down and completing all the BCG installations, I don't think that BCG is the answer for people with IC. I have my last follow up visit on Oct 30.

In your post you ask if this is going to get worse for your son. We are all so different that it is impossible to answer that question.

I guess it would depend on how long your son has had this problem. Most of the doctors that I've seen have told me that I have pretty much "bottomed out" as they put it given how old I am now versus when I first started noticing problems.

Probably the best thing you can do for your son is research whether or not there is an IC Support Group in your area and attend the meetings. I'm a member of a small group here in Seattle, and it's great to actually meet face-to-face with others who have this condition. I'm probably one of the youngest and one of two males in an almost all female support group.

Good Luck!

Derrick

**Carla Lyn** · 10-22-2002, 04:59 PM

Your son's symptoms sound similar to mine. I have always had frequency. The urgency started in my 40's. But still no pain unless I couldn't find a bathroom, then I would have retension, spasms and burning when I went. This is when I decided I needed to get serious about a diagnosis, but I went to an md and they ran tests that said everything was functioning properly. The freq and urgency were getting worse, and finally I found a uroligest who diagnosed me with IC. Will he get worse? Everyone's experience with IC is different, you will hear that alot and it is true. Your son is lucky to KNOW so soon what his problem is, so he can properly deal with it... I was always just told I probably had a small bladder.
I had a little tenderness after my hydro, and alittle blood, off and on for a few wks, some blood after is normal and they also told me not to lift for several wks.
As Far as diet goes, I don't notice much of a difference in anything I eat, it is mostly everything I drink. When I was his age I would notice some things would cause more frequency then others, but without pain or urgency, I would overlook it. Now I notice more what triggers it, so my advice would be for him to shy away from anything that might be irritating his bladder. For me it is caffine and citric acid and fruit juices. He'll start to know... If he is into soda, like most teens, try A&W root beer, it has no caff or cit acid, also Sam's cola has no cit acid and low caff. I use Stevia in my juice and it works great for alot of IC'ers also.(natural sugar found at health food store) You might also research msm, alot of us are having luck with that. It is found in vit. section. It's a dirivative of dmso. I just got done with dmso treatments and am almost back to normal because of it, there again, I had very little reaction to it pain wise, while others have terrible burning from it.
Hopefully your son will continue to stay pain free also! Ask ques., research everything, and don't assume the first ans. you hear is right, research it thoroughly. The IC network is a great place to get answers! Good Luck! Lyn <img src="graemlins/angel.gif" border="0" alt="[angel]" />

**michaelh** · 11-17-2002, 11:39 PM

I have very similiar sympyoms to your son and they started about the same age. I always went more often often than others, it became more noticeable around 17-18, about 10- 15 times a day. At first it was just a frequency but over the last 8 years the constant urgency has crept in with the frequency hovering around 20 times a day. I am only voiding on average 75ml a time, under anaesthetic I only hold 300-400ml and have glomerulations and (biopsy showing) inflammation of the bladder lining. I have found nothing to control my symptoms yet. It is frustrating and hard for a male especially when young. Send me a private message if you wish to compare more.....

**Brianna** · 11-24-2002, 02:34 AM

I know how difficult it is for a really young person to deal with this disease. I really believe you can have IC with no pain even though that is my main symptom. I have a daughter that is 21 and is going to my uro next week. I know she has IC. She has had it from birth or just about. It did not cause her pain until recently and since I didn't even know what it was---I took her to uro after uro and NEVER a word about IC. When I was diagnosed a couple of years ago--she was in remission of her symptoms. I didn't push anything since she was feeling fine. Well now she has the IC symptoms with her cycle. She has endo and they are stopping her periods so I am anxious to see if that helps the IC. I am kinda insisting she go get diagnosed so she can start on elmiron and I think it will keep her from getting worse and even get her better. Hopefully she can take it orally, as I couldn't and do instills but it has made a hudge difference in my life. If she can start repairing this young, I hope and pray that she will never get to where I was.

I only take pain meds and atarax orally as far as pres meds. She has been cathed a few times in her life and she comes unglued. We all know it is not a pleasant experience but her reaction futher confirms my belief she has IC. It is heartbreaking to read these stories of all you young people, male and female that have this but I truly believe if you can get your bladder holes, pin points, irritation ect--coated and lining repairing at a young age, you will be WAY better off than us older people in the long run. If we knew what this crap was and could have avoided the irritants at a younger age, I think our bladders would be in better shape. Just my opinion.

As moms, we can't make our kids stay on the IC diet but I have brought it to my daughters attentions so now when she drinks a mt. dew and then in a few hours says mom, my bladder hurts---BINGO, she knows. She has quit the sodas at least. I doubt I will ever get her to drink as much water as I do but hopefully she will never get to the point I was 2 years ago with all the pain. Endo is causing her enough pain.
As moms it just breaks our hearts.
hugs
brianna

Announcement

16 year old son diagnosed, but check out symptoms!

16 year old son diagnosed, but check out symptoms!

Comment

Comment

Comment

Comment

Comment