Misdiagnosed?

[Butler]

Unfortunately I believe the laundry list of symptoms for men with IC is too long and many of the symptoms can be attributed to other causes. All the reading I’ve done so far has men experiencing pain in many ways that is foreign to me.
I’ve had arthritis in my lower back for an unknown number of years but it was only recently (approximately10 years ago) that I developed problems emptying my bladder along with increased frequency. At that time my doctor (General Practitioner) believed it to be prostrate problems, prescribing Cardura along with a low dosage of Norvasc for my high blood pressure and even going so far as to recommend Viagra even though I didn’t allude to any sexual problems. This went on for a number of years until getting up at night to use the bathroom almost every hour became too much for me. I finally went to an Urologist and he did a Cystoscopy on me and while he was there expanded my bladder by Hydrodistention and later explaining to me I had Interstitial Cystitis and my bladder was about the size of a baby’s lol. He put me on Flavoxate HCL 100 MG 4 times a day along with one 15 MG tablet of Enablex at night. He also said the pain in my back was consistent with IC. Now I am just wondering how many men were diagnosed with IC that actually turned out to be prostrate problems instead, if these men just drop out of IC treatment finding out they actually have prostate problems then how are we to know? I think there needs to be long term follow up studies on men that have been diagnosed with IC to confirm they still have it and it wasn’t misdiagnosed to begin with.

[bob04951]

Butler,

This is unfortunately so very true. Many men are diagnosed with prostate problems only to find out it was IC all along, and vice versa. Many times the two go hand in hand, along with IBS and many other ailments. Think you will find a lot of the guys here have prostatitis (or have been diagnosed with it). Bob had 1/3 of his prostate removed and his symptoms got much worse, and all the uro said was "didn't think that was going to help." He suspected all along it was IC, and indeed it was, and a very severe case. We must be our own advocates and protect ourselves, and always question and investigate. Indeed it would be interesting to see some figures on the prostate and IC, sure if we research a bit we could probably find that somewhere online.

Sure you will see that just about everyone with IC has some other medical condition. Perhaps it is the weakened immune system, or that illness was there before and led to the development of IC. No one really knows, golly if we did we could cure this thing. It is a great mystery, and you are correct, the laundry list of symptoms is extensive and no two people are alike.

Wish you well in your journey to relief. Be patient, do your research. Hopefully you will find that one thing that gives you a big AHHH. Some folks are lucky that way and have long spells of remission. Stay positive, be a detective and take care of your body. The diet is most helpful if you are not already on it.

Try not to stress too much, it's tough to say to a man, but try to pamper yourself whenever you can. Power naps are most helpful if you are up and down all night. Bob will grab 15 minutes here and there throughout the day, as he practically sleeps on the toitey every night. Exhaustion is not a good way to live, and it is not a sign of weakness. Hopefully you have a support person who is standing by you and will go to doc appts with you. It is helpful to write your questions to take with you, and even print out relevant materials for the doc (not a novel). They usually appreciate that, it saves them time.

There are a lot of guys out there with this, they are not all on here (you guys hate to type). If there is a support group in your area you may want to give that a shot. Support is so essential with this, especially because everyone thinks if you just drink some cranberry juice you'll be all better. If you just have one person who "gets it," you've won half the battle.

Best of luck to you, please keep everyone updated. Jill, wife of Bob

[ICNDonna]

It's not unusual for a man with IC to be first diagnosed with prostate problems. There's some thought that this may be the reason interstitial cystitis is thought by many to be primarily a female disease. It sounds like you have found a knowledgeable physician.

There are many treatment options available for IC. Are you following an IC diet? If not, I suggest you begin today. You'll find the latest food list at the link in my signature below.

Sending warm healing thoughts,
Donna

[statesboro]

I figured I would give you a welcome fisrt of all. I will state that we are both males as well. I was diagnosed back in 1997 while it was still being called a womans disease. Yep! I was told the prostate must be inflamed at first.(2 months of antibiotics) I went back without getting any better first of all.(2 more months on different antibiotic) I went back without noticing any improvement so far. (2 more months worth) I actually stopped taking short of 6 months as I could tell the problem must be something else. OK. I went back again. I said I was about ready to ballistic and that I was not taking antibiotics any longer.(or sleeping enough usually) Oh! I did get cystoscopy with hydrodistention. OK. I did view a picture of my bladder a week later.(yucky) Flavoxate HCL seems like a new one to me. (and not fimiliar) I have read about dudes being told prostate and learning it ended up being IC, but I am not recalling any IC diagnoses that were really prostate trouble right now. I may have read that for all I know. I am tired and in pain right now. (and took pain med around 11:00) I will just state my reason for taking the pain medication happens to be degenerative disc disease instead of the IC. (as I even walk with a cane often) Yep! Oh, well!

[Zygala87]

So Sorry Butler. I do think men have a much harder time getting a correct diagnoses. I Pray you find relief soon. Hugs, Ziggy

[Butler]

First of all I’d like to thank all of you for commenting….I know this is called a support group but that’s really not why I’m here, I’m here to try and find out as much as I can about IC in men. I’ve heard many men talk about pain but things get a little cloudy when it comes to where they are feeling this pain and if they are describing pain as a feeling of a full bladder. I don’t have pain before of after sex and have very serious doubts about that kind of pain being related to IC. Some say they have pain in their testicals, which is also hard for me to believe is related to IC. As we all know prostrate problems can be deadly serious so all I’m saying is I think clearing the air about these symptoms should be the number 1 issue. Officially, pain before or after sex is an IC symptom….I’d like to here from these guys, where are they and has their diagnosis changed?