How Can We Help You?

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Hello Message Board Users!
Each month, NAFC strives to bring relevant and helpful topics to our blog and our website. We try to incorporate tips, advice, and motivation into these articles to help readers better manage their condition, learn about new treatment options, and become motivated to take action to treatment.

While we have a general idea of what we'd like to cover in 2018, we wanted to reach out to all of you to see if there is anything you'd like to learn more about, topics you think would be interesting for us to cover, or more information on a specific topic that you think would be helpful for others to know.

Please take a moment to reply to this thread and let us know what you'd like to see from us in 2018! We're all ears!!

Sincerely,
Sarah Jenkins
NAFC

 

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How about a stickies thread with things like bathroom apps for smart phones, reputable supply companies, product reviews, and other common questions.

 

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Percentage of success for different procedures and new procedures on improving incontinence

 

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Information about Botox bladder injections. I am a 63 yr old woman who had them done on June 9 by my urogynecologist. He told me on Monday that there is a possibility that I won't need any additional injections. I am doing extremely well since I had the injections. I don't know why more followers of this blog don't pursue this treatment.

 

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Sexual activity is given low priority in treatment and aftercare. Is this because it is of little interest to patients? Or because it is regarded as an optional rather than essential? Or because many people find it difficult to talk about? ....
It would be a difficult subject to deal with because there are several types of incontinence which would affect sexual activity differently, because there are many kinds of sexual activity and because even in the relative anonymity of the Internet many people would be reluctant to talk about their tastes and activities.

 

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@BarrySimpson94: You have concisely summarized a lot of thoughts here. Wide ranging, yet most conclusively listed. I've had these thoughts and I know others have had them, too.

Your basic premise (opening sentence) certainly is accurate in a number of situations: It was never presented to me. Only with connection to an incontinence support group later did this area eventually start to open. The big difference here was that ALL of us participating were the 'patients' and we were actually experiencing life with incontinence. Some of us were in relationships, some were not. Some experienced successful relationships, some did not. Life is what it is.

Even with a common interest in this area, it still was difficult for our group to generate an open discussion. Gathered in one room, we were anything but an anonymous support group of male and female participants with all forms of incontinence.

We didn't give up or shrink away from discussing sexual intimacies when dealing with incontinence. One might think that Internet anonymity would erase some of these barriers, but it frequently does not. Some continue to hold the notion that this is taboo territory and discussion of it is somehow evil. That does NOT appear to be the consensus here.

As to Barry's three questions:

1. I do believe there is substantial interest, though some may choose to opt out of the concept. I'm fine with that. 2. Optional vs. Essential: Sadly, a few would regard any discussions of our sexual option as odd, frivolous or even perverted. The support group I was in quickly debunked this notion and we scoffed at the 'optional body functions' theme. Humor entered to break the ice. We were in a peer support group -- 'PEE-er' -- support group, correct? Now we got down to talking. 3. We agreed that our health care professionals found it difficult to talk about incontinence because they did not experience our situation and they just didn't know how to advise us on sexual relationships. But some of us had 'been there' and we had the life experiences to share. We helped each other and we all learned a lot in the process.

Will it or can it happen here? Probably not, and for a lot of obvious reasons. But it is a subject worthy of consideration, in my opinion.

Thanks, Barry. This can be essential information for many new to this as well as we 'veterans'.

 

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Thank you for your valuable contribution Andy. I have not had any face-to-face contact with other incontinence sufferers on the subject, so your experiences are particularly valuable to me.

I have wondered whether an anonymous questionnaire such as Survey Monkey from the NAFC would help to focus on more precise issues such as:
whether in a relationship or not;
type of incontinence;
any other conditions impeding sex life such as spinal injury or MS;
what kind of sexual activity is wanted;
what problems are being experienced in achieving it.

 

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@ BarrySimpson94

Places such as 'The Survey Monkey' may be highly unscientific, but I will not
totally discount the questionnaire as possibly a way to open the door on this
rather private topic.

 

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Sur le suje des nuits difficult somell profonts mal formation crise douleure avec fierve perfect connesanse voila LA cose de mon incontinence urinaire je ne peu pas me fair soigne je recherche une solution.?