IC and Men and Frequency

[michaelh]

I am a 27 year old male and I believe I have Ic. My symptoms have been going on 7 years, the last two have been the worst. I have been unable to work and my quality of life is interesting to say the least.
My symptoms are a reduced bladder capacity and a constant urge to urinate (up to 30 times a day, average 50ml). I have no pain, just an ever present urge to void, which I cannot ignore, and trying to fight only heightens the urge to go. Does any man or female have similiar symptoms (without the pain associated with IC) I would greatly like to correspond regarding your treatment attempts and how you cope.
I have tried Ditropan, probanthyne and Elmiron and had a Biopsy. The biopsy revealed numerous glomerulations in all quadrants and a "mild to moderate chronic inflammatory cell infiltrate within the superficial stroma"(whatever the hell that means) I have recently persuaded my Urologist to perform a Hyrodistention, with Heparin..... (fingers crossed)
Again if you have similiar symptoms please respond it will be greatly appreciated.
Michael

[ICNDonna]

Welcome to the IC Network. It does sound like you might have IC. Since the word "interstitial" means the disease is within the bladder wall, it sounds very much like that might already be your diagnosis. I suggest you ask your doctor to explain specifically what the words in that diagnosis mean.

Sometimes it takes ten years of training to be able to decipher what doctors mean when they write things down, but if you ask they will usually explain.

Sending healing thoughts,
Donna

[Cawaggi]

I can't say that I have pain. Before I started treating the IC I had some urgency that seemed pretty painful, but it was always just a really strong urgency. I still always feel it so some degree now, but it's not so bad...I can live with this if it doesn't get any worse, but I'm just in the beginning stages so I'll have to wait and see what happens.

[Teri]

I do have pain with my IC but that didn't come until years and years into the disease for me. For 10 years I was treated with hydro's and had GREAT results with the urgency, frequance and that constant urge to go. I also suffer from retention and they helped with that....give it a try. At this point, what do you have to loose?
My mother always taught me to make a list with the positive effects and the negative effect and a line down the middle of the paper. And, when the positives beat the negatives, it was always time to move on with my life.....no matter what chapter I was in.

Wishing YOU the very very Best~

[Jim in San Antonio]

Michaelh,

I've had symptoms similar to yours for over 3 years. What I used to call "urgency" is really more correctly referred to as a constant "sensation of incomplete bladder emptying." Like you and Cawaggi, I don't have the classic "pain" of IC, but the "feeling like your bladder's going to burst" pain. (Apparently a small percentage of IC patients have only that symptom.)
I was "diagnosed" by two "pain medicine" specialists (a sub-speciality of anesthesiology) as having IC. My first 3 urologists wouldn't even "consider" the possibility of IC in a man; the 4th did urodynamics with potassium leak test, which was negative for IC. But the medical literature has recently shown a large number of "false negatives" for that test.
The 5th urologist eventually found prostate cancer. I had radical prostatectomy a year ago; but it had no effect on the sensation of incomplete bladder emptying. I've found that non-chronic-pain people don't understand when you have pain without the docs "finding anything diagnostically." But mention CANCER and they're all concerned. Personally cancer was "a piece of cake" compared to this other thing...
Had my 2nd hypogastric plexus block last month; it gave 15 days of major relief. Will start acupuncture this week. (Also had 2 epidural steroid injections since a disc fragment showed up on MRI and they thought it could have impinged on sacral nerves to the bladder.)
A group at NIH recently suggested that the criteria for diagnosing IC are too narrow; so maybe more of us "have it" without officially being diagnosed by a urologist via potassium leak test or hydrodistention.

Best of luck.

[Sandy M]

Hi Michael I have IC with no pain..... massive frequency and I can live with it so far. Tired all the time, dont know if thats the IC, though. Ive been told my bladder is "small". My son goes a lot and Im praying I didnt pass this on to him, Good luck, Sandy

[michaelh]

Thankyou for your repsonses. The main reason I wanted to hear from people with similiar symptoms is that maybe they have had some luck and tell me about it so that I can make suggestions to my Urologist and maybe fast track my treatment. I am unemployed(due to my condition) and have no family support in regards to my conition. I am going through a public health system, where I wait 4 months for any procedure which requires a hospital bed. There is also a 5-6 week wait to just see a Urologist.
I need to form a life time stategy for my affliction, obviously with cost and time being factors. I am going to be trained to self catheter and I am hoping an instillation might provide the relief I need(with the added bonus of being able to do this at home)
Has any one had any results with the various instillations on a condition similiar to mine. If you could tell me about dosage and how many times you intsill etc..
Has anyone had any luck with herbs or herbal teas with a similiar condition to mine. I am currently trying Pennywort tea for the Gotu Kola benefit"fingers crossed"

One thing I have noticed about the public Urologists(at least in my case) is the lack of effort given. I walk into the office every 3 months or so and hope just once that he might have actually thought about or looked into my condition a single second since I last left his office, NOT yet but I am hoping. I am not just a number or a quota for the day. A little effort on a Urologists part equates into hope for a patient. Just knowing that someone trained is really trying his/her hardest to help you can make a world of difference in the eyes of a person with this condition. Especially if the Urologist is smart enough to work out if your there in a public hospital you have no other professional to turn to but him.....
A little effort on a trained professional is better than no help...just.
Just about every procedure and the actual IC condition itself, I have had to first propose to the Urologist myself. (thank god for this site and ones like it)
Well theres my rant for the day......
Try talking like this to the Urologist himself and they think your crazy and depressed and will offer you anti-depressants, which will slowly turn your brain to mush. Oh well at least you wont complain so much if your a drooling vegetable, you can just go right ahead and wet yourself. No one will mind because your stress and depression have been cured..........
If any one can provide some info please post it.
Reagrding pain, when I refer to not having it I am referring to the burnning sensation some IC patients have.I do not have this pain.
Although I do think a constant urge to void is a form of pain in itself. If I could just not have the urge for 55 minutes and go every hour I wouldnt mind. Its just this constant sanity eating urge which is always there, even after you have just gone......

Thank you again for all your reponses and your future ones. They are very much appreciated.

MIKES QUOTE FOR THE DAY
A doctor says to a Cancer patitient "My dear fellow you are depressed, have some anti-depressant medication"
"But Doctor what about treating my Cancer" the patient replies.
"If we did that my dear fellow you wouldnt be depressed and these anti-depressants would not work"

[Kara]

Mike,

This page may help a bit:
http://www.ic-network.com/men/
It's ICN's Men's Resource Center

On the ICN patient handbook there is a section called Living with IC - Pain & Flares
http://www.ic-network.com/handbook/

And here is a poem I like that makes me feel like someone understands us!

"Chronic Illness”

"Chronic illness sometimes is unseen by others.
Others cannot feel what they cannot see.So if sometimes I look well, but I tell you I am in pain please do not judge me, I wish I "was" well again. Illness is not my choice it's what life dealt to me. For you to disbelieve me or doubt me, breaks my heart. For you are my Family, Doctor or even a Good Friend Must I earn your "trust" all over again? Chronic means on and off but always there. Today I may be able to do something, tomorrow maybe I can't
I have to try hard to work within my limit
Or the next day I may wind up at the clinic.
Funny how when you have a chronic illness and you finally adjust. You find that it has led to another and you must handle that too.
Sometimes you have two or even more, oh my what a chore. Some even tell you, You can't walk anymore. All of these illnesses robs me of my life. I can never be normal like you again.
It is hard for me to accept what I am going through. I don't need the extra stress trying to convince you. At times, I have mood swings, I may snap at you. If I do I am sorry, Please understand, I am angry at "me." I try to do what I've done before perhaps even a simple chore
But then I find that my muscles don't seem to work anymore. I want to be that parent, grandmother or friend. The one I "lost" when this illness came upon me. The one I tried to be when I was there for you. The one I "was" when I was able to do. Every time I say no to you, don't be angry at me. Every No I have to say reminds me I am "not" normal anymore. So please, don't doubt me, just try to understand.
It was not my choice! It is just God's Plan.”

Written by: JoAnn Kranik

I hope you get the help and answers that you need!

I will keep you in my thoughts and prayers!

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