How Can NAFC Better Support You? We Want to Hear From You!

[Administrator]

Hi everyone,


I'm Sarah Jenkins, Executive Director here at the National Association for Continence (NAFC). First, I want to thank you for being a part of this amazing community. Whether you’ve just joined or have been with us for years, your presence and participation are what make this space so valuable.


We’re always looking for ways to better support you in your journey with bladder or bowel health—and the best way to do that is by asking you what you need most.


What would be most helpful to you right now?
Are there resources you wish existed but haven’t found?
Would you like to see more?

Educational guides or downloadable tools?

• Video content or step-by-step training?
• Product recommendations, reviews, or discounts?
• Live webinars or Q&A sessions with experts?
• Support groups or community events?

No idea is too small, and no suggestion is off-limits. We want to meet you where you are and provide the resources and support that truly make a difference.


Please share your thoughts below—we’re listening and excited to grow with you.


Warmly,
Sarah
Executive Director, NAFC

 

[CalebKrawdad]

Something that's really piqued my interest is "patient advocacy". Providing my voice and experience has been a somewhat cathartic experience, and I'd definitely be interested in doing more of that.

 

[Administrator]

@CalebKrawdad - Thank you! This is something we have talked about as well and are actively thinking of more ways for patients to get involved.

 

[snow]

Hello Sarah,

I’ve basically stopped using the forum because 1) I can’t stand the way the new forum is set up compared to the old one, and 2) there are only one to two active females on the forum. I would like to see the NAFC find a way to reach out to more women and encourage them to join. Women are the majority of the population, by far, that have incontinence - not men! - so why aren’t there more women on this forum? Yes, in general, women are better at coping alone, but I don’t tho k that explains it away. Please make sure to get NAFC pamphlets in every urologist’s office, every gynecologist’s office, and every primary care physician‘s office. I think urogynecology is an incredibly important place to place your pamphlets. And please make sure all of those physicians are aware that the NAFC even exists. Incontinence is such a unique condition because it is such a lonely condition. It is so socially crippling, unless you find a forum like this, and this is the best one I’ve ever found, with the exception that there are not enough women active. Two years ago, I went through and counted how many female and male members there were and there were only 11 female members, and only three of them were active at the time. Now there’s only two that are currently active any more thanks to everybody leaving after we were forced to switch to the new forum.

Basically, this isn’t even really an incontinence forum, this is a men’s post-prostate-surgery forum. Sometimes I think you should change the name of your organization and the name of the forum to reflect what it really is. The things those men discuss don’t have anything to do with the problems women encounter, and the different products and procedures that women use compared to what men use are pretty different. Yet what’s talked about are what men are doing after prostate surgery. It’s incredibly frustrating and incredibly boring. Every time I’ve posted a question asking about a female procedure, I never get a reply. So why bother participating anymore? Men and women don’t even wear the same kind of diapers so even discussions about male diapers and pads aren’t relevant to women.

There are very few areas of overlap between male and female incontinence. I think the primary area of overlap is for patients like myself who have the condition of neurogenic bladder following a spinal cord injury - which can happen to a man or a woman. Another common crossover between men and women is the use of Botox. But hardly anybody utilizes Botox nor talks about neurogenic bladder so those are barely extant crossover topics.

Cystoscopy and urodynamics could be a crossover topic, but a man’s experience with a catheter is completely different from a woman’s experience with a catheter and we experience very different levels of pain during such procedures so it’s really barely a crossover topic either.

So basically, in summation, I just really would like to see more women participate. I’ll see them join here and there, but they quickly figure out that this is a men’s-post-prostate-surgery forum instead and they leave quickly. So we need to get a lot of women to enroll and then they actually need to be welcomed, encouraged to stay active, participate, and support one another.

The final thing I would like to see are discounts from Depends, specifically for their Night Defense products. I imagine everybody would like to receive discounts for whatever their brands of diapers are which I think is probably every brand because so many people use so many kinds of diapers for so many different needs.

Thank you very much for asking for our input; I really appreciate it.

Take care.

 

[Peter_A]

Well, I'm trying to reply to Snow's post, but I'm not sure where this is going to go. It is unclear how I'm supposed to reply. I think the old version was more intuitive. Obviously, there is more of a learning curve here. Snow, it's good to see you here. I enjoyed your discussions before, and, perhaps, will again.

For me, personally, we've moved in the interim. New (different) house, different community, different part of the state, and the move has not gone smoothly! So I have just been lacking time to spend here, and getting used to the new system. Hopefully, that will improve with time. Regards,

 

[Peter_A]

Well, I'm trying to reply to Snow's post, but I'm not sure where this is going to go. It is unclear how I'm supposed to reply. I think the old version was more intuitive. Obviously, there is more of a learning curve here. Snow, it's good to see you here. I enjoyed your discussions before, and, perhaps, will again.

For me, personally, we've moved in the interim. New (different) house, different community, different part of the state, and the move has not gone smoothly! So I have just been lacking time to spend here, and getting used to the new system. Hopefully, that will improve with time. Regards,

 

[Peter_A]

Well, I don't know why I have two copies of this post. It seems I'm having difficulty using this new system.

 

[snow]

Thank you very much for your vote of confidence, Peter Best wishes for settling in following your move. I moved 2.5 years ago alone (for the first time alone in my life) and it was really hard. I still have some unbuilt furniture and unpacked boxes, lol! I need a man to come help me because my joints are such a mess!

 

[bcarr]

I have been a member of the NAFC forums for 4-5 years now. I had a prostatectomy in 2022 and have continued a very slow recovery to about 90% continence since then. The very good news is follow up tests show PSA undetected. Regarding your request for feedback and suggestions, my primary response is to make this site easier to use. As mentioned in an earlier response, the old site format was must more intuitive to use making it easier to navigate. One of my bigger frustrations is looking for archived posts that I found valuable from specific forum participants. In the current format when I conduct a search to look for an archived post, the results I receive are old messages in the general subject area of my search but forum participants who posted the messages are not shown, only the identifier "NAFC Archived". The ability to search for posts from specific participants is a valuable benefit and is currently not available in this new format.

I also agree with Snow regarding this forum being primarily oriented toward male incontinence and prostate cancer procedures (radiation or prostatectomy) and experiences. This may not be by design but has certainly been the reality historically. It would be great if more women are able to use this forum in a way that is accessible, comfortable, and informational!

Thank you.

 

[Administrator]

Thank you all for your very thoughtful replies! It's great to hear and I encourage everyone to please weigh in.

Just wanted to address a couple of the mentions above...

1. Regarding the format of the forum - we hear you. This has been a learning curve for all of us and the reality was that the old forum had many limitations that prevented us from being able to do some of what we wanted to do. I realize this has not been an easy transition for everyone, but I appreciate you hanging in there and learning to use this new forum as best as we can...for now.

2. Regarding women participation. I agree 100% that women are not well represented here. This was not ever by design - the forums are open to everyone. However, the men experiencing issues have just been more vocal and willing to share here for some reason. It's not easy for everyone to put themselves out there when talking about these sensitive issues. Part of why we wanted to move to this new format was to create a separate space for women to give them a better sense of privacy to talk about their independent issues. It's still been a struggle to get women talking, but we are working on it. That said, this is a forum for anyone experiencing incontinence and incontinence from prostate cancer is extremely common in men and deserves it's place too. Just because incontinence is more common in women does not mean that men's issues should be ignored. I realize it may seem like men are the focus here, but it has been a natural evolution due to the men here being more willing to speak up. I truly hope we can get more participation from women and encourage more conversation amongst them.

3. We'd absolutely LOVE for our materials to be in more offices. Part of our struggle is that it is very costly to print and ship to every office. However, we are trying to find ways to provide more info and perhaps more digital offerings/downloads via QR codes, etc.

4. We love providing coupons when companies are willing to share them - that's unfortunately not always the case. But we definitely pass them along as often as we can.

5. Our main mission at NAFC (for over 40 years now) has been to provide education, community, and support to those living with bladder and bowel health conditions, and their caregivers. We do that mostly through our website, our podcast, with our newsletter, and also here, on the forums. What else in your eyes is missing here? Would more localized events be of interest? Live webinars with experts? Real-time chats with folks from the message boards, monthly product giveaways (or gift cards to absorbent companies)?

Thank you all again for your feedback. We want to make this a great and supportive place for everyone so we truly appreciate it!
Sarah

 

[snow]

I would love to attend a local support group of some sort. I’ve only ever seen three members from the entire state of Utah and the other two are totally dormant.

 

[sj2016]

When I've tried using AI search tools, I've often seen NAFC left out as a source for the United States, and I get links for the UK or Australia. It feels like something is missing.

The podcast is a great start, I just wish News channels like NBC, CBS, or the other stations would speak up about this beyond just the usual commercials for Depends or a medication. Including during World Continence Week or when rasing awareness for disabilities like autism, that can contribute to Incontinence for people of any age, children, teens and adults. It can be hard to fit it in a small 2 minute news story, an in-depth longer story with different perspectives could be more valuable.

Too often on social media, I can get Advertisements from companies that make incontinence products, and it can be embarrassing if my friends see my interactions with these brands, but if someone tries to make posts opening up about it, it can be automatically flagged as inappropriate and have a smaller audience reach.