Would IC Get More Attention If It Were A Men's Disease Primarily?

[hdwadman]

After reading so much about IC lately, and reading the many stories here, I can't help wondering if IC would be treated differently if it were primarily a men's disease. I suspect that there would be more funding for research and treatments if it were. This is frustrating to me, as a man, and I bet it really infuriates the women suffering with this disease. It is ridiculous for gender politics to play a role in our health, but I suspect that as far as IC is concerned, this is exactly the case.

[april ryan]

Wow, this certainly is a very strong position!

You might be right, even if there is not any objective proof. What you say makes me wonder, though. But then, what about breast and cervical cancer? They get a lot of attention and research.

What I've always though, instead, is that I am very sorry for men with IC. As it is more common in women, research often is very slim and you get usually very thin chapters in IC books! This must be quite frustrating.

To come back to the main issue, think about IBS... it strikes more women than man, true, but with a lower difference; and still reseach is behind on that too, and the causes are still a blur, as for the IC. very complicate indeed.

April

[hdwadman]

I also think that the attitudes about IC in the medical community hinder research funding. Its like fibromyalgia several years ago. Many doctors seem to think that its primarily a mental health issue, and I believe that prevents research funding also. Even with obvious, documentable physical changes and abnormalities, many doctors continue to believe that IC is "a physical manifestation of a psychological problem". No matter if that's true, we still need viable treatment options and a cure! I haven't been dealing with this disease long, and I'm already angry about the way something so serious and life changing is taken so lightly by so many of the doctors that we trust to treat it. I have read so many stories about urologists who diagnose the disease, then don't treat the acute pain. My own urologist falls into this group. I know I'm venting, but the last few days have been really painful and upsetting for me. Without a prescription for pain meds for something unrelated, I don't know how I would have survived it. I have always felt that women's health issues, until very recently, have been ignored, or considered less important than men's. I feel like outdated gender attitudes play a large role in this. If it isn't something that goes on a death certificate, it can't be that serious, right? Baloney! From my own experiences with a very close friend who has fibromyalgia, and with the posts I've read here, it sounds like a lot of doctors still harbor the attitude that its just "female hysteria". And it makes me mad at myself to think that I might have bought into that outdated train of thought if I weren't experiencing this for myself! I'm sorry for the long post, but I just felt like I had to get some of these thoughts out there for your opinions and thoughts. I hope you are all having a great day, and that my diatribe here hasn't spoiled it!
DeWayne

[ICNDonna]

The idea that IC is a disease of "hysterical women" is very outdated and very few doctors subscribe to that theory now --- if you have managed to find one, I strongly suggest you make a change. There are some good, caring doctors out there. I have had two of my urologists retire in the past five years and I am on my third since diagnosis in 1975. All three have been knowledgeable about IC and all have been willing to prescribe pain meds for me --- however I don't need full time pain management --- if I did have the need, I would be under the care of a specialist trained in that area.

There is a lot of research taking place and we have made strides in treatments; life is much easier for IC patients than it was at the time I was diagnosed.

Donna

[systitis]

I think part of the problem is that IC is a "below the waist" problem. Many people find it difficult if not impossible to discuss urinary & other BTW issues. Even friends & relatives who are trying to be nice & who know exactly what I have can't bring themselves to even say the words "bladder" or "urinary tract".

Don't forget that THIS year newspapers refused ads for the play "The Vagina Monologues."

We ICers are paying the price of our puritanical past....

[VickiB]

I think another part of the problem is that unlike breast or cervical cancer, we're not at risk to die from IC. Even I have to admit that it's far more important to find a cure for many other diseases first.

But I too, find it frustrating how IC is sometimes brushed off as if it's nothing more than an inconvenience to those who have it. My uro will not give pain meds. I like the guy well enough, but feel he has no concept of what a flare feels like. I don't know if he thinks we exagerate the pain level, if he feels he's not 'up' on pain meds to safely prescribe them, if it's too much paperwork to do so, or what? Luckily, my flares tend to now be short, passing episodes. If I had to live in a flare 24/7 with no end in sight I don't know what I'd do!

Vicki