Men vs. women with IC

[Mountainman]

I've read that 90% of IC cases are women (although I've also read that it's probably closer to 70%). At any rate, does anyone know why this would be? I realize that men and women are built differently which probably is one reason why, but I've been wondering if there are other factors. It just doesn't make sense to me that perhaps only 10% of IC cases are with men.

Could it be related to the occupations people have somehow or another? Most women work indoors....a lot of men do also, but the majority of outside jobs are performed by men. Has a study ever been done on people with IC to see if those affected have similar kinds of jobs? This is definitely a shot in the dark......I'm well aware of that, but could IC be related to occupations where people sit a lot, or maybe occupations indoors where people are under flourescent lighting all day long?

Also, is IC something that is becoming more common or has the percentage of people diagnosed with it been fairly constant over the years?

[crkshnks79]

I dont know the ans to men vs women but there was a post on occupations to see if there was a correlation before ... I believe nurses and teachers were on the top of that list . The list also included hairstylists ( thats where I fall under ) and other jobs . Heres the link to that post if your interested

http://www.ic-network.com/forum/showthread.php?t=47884&highlight=occupations&page=6

[ngazerro]

My doctors says men are affected almost as much as women but takes longer for a right dx. I never read any research on the facts..

[hdb1982]

I don't think there are good statistics on the men vs. women theory.
My thoughts on this subject are as follows:
1) Most men have to be half dead before going to a doctor; I know all the men in my life are that way.
2) When/if they do go to doctor most will not talk about urgency/frequency as they seem to be more modest about discussing things like that.
3) If a man does go to a doctor and do the above it is most often attributed to a prostate problem even if the testing says otherwise. A lot of women often get diagnosed with generalized hormonal problems when a doctor can’t find the real root of the problem.
4) If they do go and get the preliminary diagnosis of IC, most will not go back and have the testing to confirm it.
Anytime you mention to a man going near his penis with a cath, camera, needle or whatever they stop thinking rationally at that point. My thought is “Okay, yeah this will be painful for maybe 2-3 minutes but then I will know if this is what is causing my constant pain/urgency/frequency and can move on to the next idea if it isn't. I would rather go through 2-3 minutes of increased pain and know for sure than to not do the diagnostic testing and not know.” Now, my husband thinks the exact opposite of me in regards to this. He just came in and read this and asked what the thread was about and I told him. I said to him what I just quoted above. He said “Hell no, there is no amount of pain in this world that would convince me to allow a dr to shove a camera up my ****” Then he had the nerve to say "Heather you just don't get it. It would be very painful." Okay, go through 12 hours of labor WITHOUT ANY DRUGS and deliver a 7lb 6oz baby through your penis then tell me I don't understand!!!:evilsmile Well, knowing he didn’t have a good argument for that one, he then hung his head in defeat and walked away without another word. :evilsmile
Wow, I really rambled on here and turned a short thought into an essay. I guess to sum my theory up is to say I don't think the numbers are "wrong" per say. Maybe the case with men is there are more undiagnosed/misdiagnosed cases than in women. Just like with STD's and other illnesses. Sometimes the margin between men and women is tremendous but most often the gap in numbers is do to a lack of diagnosis, and frequently, misdiagnosis or unreported cases.

[elitynski]

I think there is a lot of overlap between IC & CPPS. If you look at the IC board it is mostly women, if you look at the CPPS board it is almost 100% guys.

I think the fact that these are diagnosis of exclusion yet have very similar characteristics means that it is easier to label a woman as having IC and a guy as having CPPS. Yet, both of them can find treatment that is similar and makes their symptoms better - diet, exercise, anti-inflammatory medication, etc.

I think the best thing is to find out which protocol works for you and stick with it. That is the hardest thing is to find out what is actually working and then to keep working it.

I know for me I have had symptoms change and that makes it tricky as well. Some of it has to do with male / female anatomy, hormones, etc.

Also - look at the women's posts on here. Some of them have ulcerations in their bladder, some of them show nothing, some of them have bladder pain, some have none. There isn't one consistency that says - EVERY IC PATIENT HAS THIS.

So - keep plugging away. THat is why I hit both boards because I learn something from each of them.

I would also say that some people get better because they work at it, are disciplined and so on.

I also think that there are people that want to get better but haven't found the resolve to adhere to the things that improve - ie. no caffeine, eliminating diet sensitivities, finding the right exercise.

The other thing that makes a huge difference is the mind body connection. Some people allow the negative and catastrophic thinking to keep them sick while others use positive thinking to help them move forward.

[Mountainman]

I don't think there are good statistics on the men vs. women theory.
My thoughts on this subject are as follows:
1) Most men have to be half dead before going to a doctor; I know all the men in my life are that way.
2) When/if they do go to doctor most will not talk about urgency/frequency as they seem to be more modest about discussing things like that.
3) If a man does go to a doctor and do the above it is most often attributed to a prostate problem even if the testing says otherwise. A lot of women often get diagnosed with generalized hormonal problems when a doctor can’t find the real root of the problem.
4) If they do go and get the preliminary diagnosis of IC, most will not go back and have the testing to confirm it.
Anytime you mention to a man going near his penis with a cath, camera, needle or whatever they stop thinking rationally at that point. My thought is “Okay, yeah this will be painful for maybe 2-3 minutes but then I will know if this is what is causing my constant pain/urgency/frequency and can move on to the next idea if it isn't. I would rather go through 2-3 minutes of increased pain and know for sure than to not do the diagnostic testing and not know.” Now, my husband thinks the exact opposite of me in regards to this. He just came in and read this and asked what the thread was about and I told him. I said to him what I just quoted above. He said “Hell no, there is no amount of pain in this world that would convince me to allow a dr to shove a camera up my ****” Then he had the nerve to say "Heather you just don't get it. It would be very painful." Okay, go through 12 hours of labor WITHOUT ANY DRUGS and deliver a 7lb 6oz baby through your penis then tell me I don't understand!!!:evilsmile Well, knowing he didn’t have a good argument for that one, he then hung his head in defeat and walked away without another word. :evilsmile
Wow, I really rambled on here and turned a short thought into an essay. I guess to sum my theory up is to say I don't think the numbers are "wrong" per say. Maybe the case with men is there are more undiagnosed/misdiagnosed cases than in women. Just like with STD's and other illnesses. Sometimes the margin between men and women is tremendous but most often the gap in numbers is do to a lack of diagnosis, and frequently, misdiagnosis or unreported cases.

I can't argue with you.......but I understand what your husband is saying completely!!! Your husband sounds like a very wise man... Let me guess, he said, "I'm sorry.....you're right dear" before he walked away, right? Or if he didn't, he probably wishes he did..:smile tee

[ICNDonna]

It used to be the thought in the medical community that IC in men is very rare --- but bear in mind that it was also thought that IC is a disease of neurotic women!!!!! At the time I was diagnosed (1975) my uro told me I didn't fit with the "neurotic" theory --- I asked him if he thought women developed IC because they were neurotic, or if they became neurotic because they have IC. I'm just glad he was understanding.

I brought that up because there is now some thought that IC is not as rare in men as it was formerly thought to be --- and that many are just not being diagnosed. It's still something of a mystery.

Donna

[leelee88]

I was talking to my URO about a month ago about this. Because in the pamplet you know they have sitting in the office area there was an article about men and IC. She said that so many men have been miss Dx with prostate problems and are getting no relief on these new meds for prostate problems and are now finding out that it is really IC. She said men being Dx with IC is on the rise!

[elitynski]

I had no idea that IC was once seen as a disease of neurotics. I feel badly for all those women who have suffered needlessly because the medical community wasn't willing to acknowledge IC.

The good thing is that IC is being taken more seriously and that there are Men who are now going to their Drs and hopefully finding Drs that are progressive thinkers.

In fact, most of the UROs I met with recently don't even talk about "prostatitis" as a diagnosis. They consider it a junk diagnosis.

With that said there are still varying ideas as to how to treat and test for things.

For me - my mandate is anxiety management and weight loss. So this morning - I did some hamstring, glute and hip stretches. I did a 15-20 minute walk, ate some applesauce and took some naproxen.

Most of those things I wasn't excited aboutl but I knew that I was MORE likely to get better by doing them than not.

As I was doing some relaxation breathing in bed this morning I was getting panicky, and I just had to remind myself not to embrace fear and anxiety, but to focus on the healthy things to move forward.

So whether it is IC or PFD or CPPS or whatever....it all depends on each of us doing the work - consistently & daily even when we start to feel better.

PS. I did have a camera insterted inside me for a cystoscopy and if it turns out I have to do the same thing for Urodynamics I will do that as well. My health is m ore important than some momentary OUCH!

[Mountainman]

I was treated for a couple of years for prostate problems before they decided to take a look at my bladder. I had the microwave procedure done on my prostate to shrink it (even though the UR didn't think it was all that large), was on antibiotics for prostatitis, etc.... It wasn't until I started seeing a lady urologist that a bladder problem was identified.