Sorry, here comes a novel:
I like that NAFC presents all of this stuff in a non-stigmatized way. I found the site very informative at the beginning of my journey and it helped immensely to know that I was not so alone. The message board area is a huge help too...sometimes it just feels good to talk to others with similar problems.
One area I wish NAFC, and really the entire medical community would improve upon is how it handles men's issues. I'm a 38 year old man with OAB and urge incontinence that is not at all related to my prostate. Almost EVERY online resource about mens incontinence says prostate prostate prostate...if OAB it's still probably prostate related to bladder outlet obstruction. NO. My prostate is FINE. I have OAB...the same kind of idiopathic, probably nerve related, OAB that women get. But there's almost nothing anywhere online that discusses non-prostate related OAB in men.
Another example. Go to any drugstore in the incontinence aisle. There are 20 different products for women and like 3 for men. Women can chose from 5 or more brands or styles of pullups, always, depends, tena and store brand in my area. Men? Depend and store brand. Why?
Even the NAFC 'Mens Conditions' page completely fails to mention OAB. Why? as many as 16% of men have OAB, yet it's absent from the mens conditions page....Yet if you go to the OAB page on NAFC, it does acknowledge that men get it.
As a man with OAB, it's almost like having another layer of stigma because OAB is seen as a predominantly woman's problem....And the stats certainly indicate that it's more common in women, but in no way is it a woman only problem.
I read a journal article recently where the urologist author did make a point to suggest that automatically assuming prostate for men with OAB/urge incon is probably leading to a lot of misdiagnosis and faulty treatment paths, but so much more light needs to be shed on this.
Additionally, I want to talk about diapers. Most online resources don't even mention diapers/pads/absorbent products as a treatment option. NAFC does so kudos....but the diaper stigma needs to go. Seriously. All the OAB treatments talk about behavior mods (guess what, they don't work unless you have very minor symptoms), meds (guess what, they have horrible side effects for a lot of people and/or DO NOT WORK for many of us), nerve stim (again, bad efficacy...even with significant symptom improvement, it's effectively no different to me if I have a wetting accident 10 times a day or 3.....I'll still need to wear protection all day every day.), and lastly invasive surgery (bladder augmentation has tons of complications, and still won't cure most people....and urinary diversion tell me how a stoma and pee bag is better than a diaper).
Point is, it's like the whole medical community refuses to even acknowledge diapers as a long term solution. Of course a medical goal should be a cure and the goal should definitely be to get people out of diapers. I agree with that 100%.....but for so many people that have not had any luck with medical treatments, all the articles just stop at that point. There's no medical opinion in any article that says, "and hey if none of these work for you there are many products available blah blah blah". This just makes the diaper stigma so much worse and makes people who NEED to wear them feel even more ashamed because they are made to feel like they shouldn't be using them.
I'm just so sick of the anti diaper mentality and how it's not ever even discussed as a valid method to manage long term. I've tried everything almost except invasive surgery and I'm done with it. I wear diapers, i live well, and because of them I have my problem under control. Diapers are the ONLY THING I've ever tried for my incontinence that actually gave me a feeling of control.
