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Can you talk to your primary care physician about incontinence?


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Seriously, can you talk with your primary care physician about your incontinence?  That is a pretty intimate topic and I have had widely varying experiences in that regard.

One of my doctors was so embarrassed about the topic that he almost could not talk about itūüėĪ and could not provide any useful recommendations.

Another was so ill informed on the subject that he could not provide any useful information.  At least he knew enough to say that I needed to see a specialist.

Another said that "we did not learn much about that in med school."

What about y'all?  What were your experiences?

--John

Edited by John Davis
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  • John Davis changed the title to Can you talk to your primary care physician about incontinence?

Yes.Usually about once a year to get a prescription for various needed supplies, so that if I ever get questioned on FSA or other expenditures I have an actual written prescription showing need.However, not too much beyond that.  Prostate check and general discussion on incontinence gets deferred to the Urology appointments....

First time was when the acute onset of secondary nocturnal enuresis hit when I started a set of medication to knock out a sinus infection.  After hearing that I had (only a few) incidences of bed-wetting as a child, he figured it would "go away on its own" after the treatment for the infection was done.  I couldn't get across that I felt something had changed....  As I kid, it only rarely happened, max once a night, and not on consecutive nights.  Long store short, once I was off the medications, I figured out how I "sensed" things had shifted for the second time as an adult, and this time it changed occasional nocturia into occasional secondary nocturnal enuresis...  Doctors still don't have a good set of tests for checking how a person senses pain, smell, touch, etc.  I've known since elementary school that how I sense things (starting with pain) was different from "normal".  I did get a urinalysis out of it (showing no UTI, etc.) and if my memory serves right, a short prescription for oxybutin which didn't help, and if wanted, a referral to a urologist.  I ended up spending some time at the local university medical library on weekends (when parking was free) researching the available research on incontinence / enuresis at the time and really only found studies of (a) women with what I considered small bladders (8 oz holding) and (b) children (mainly boys) that still had issues with enuresis and the success / failure rate to overcome that.

A later primary care physician balked when I wanted a prescription for diapers for the bed-wetting (prior to planning to use FSA funds).  He went off the deep end on the fetish side.  Needless to say I found another primary care doctor.

Due to current insurance, currently have two primary care doctors (and need to transition to a third before retiring).  One comes at no cost to use, the other was my primary care prior to the current employer opting in to a plan that has the zero cost primary doctor visits at a specific clinic.  The older one has no problem with my discussing prescription needs, and that has included disposable diapers not originally designed for medical....  but do work better for me when cloth isn't the best option....  Reminds me its about time for my approximately annual discussion again...

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Of course you can, and should. Your primary care physician should know the big picture of everything that effects your health, incontinence included. The don't necessarily need to know all the details, but should know enough to look out for medication interactions, and also be able to refer you to a special urologist.

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@John Davis

On 4/16/2023 at 7:28 AM, John Davis said:

Seriously, can you talk with your primary care physician about your incontinence?  That is a pretty intimate topic and I have had widely varying experiences in that regard.

One of my doctors was so embarrassed about the topic that he almost could not talk about itūüėĪ and could not provide any useful recommendations.

Another was so ill informed on the subject that he could not provide any useful information.  At least he knew enough to say that I needed to see a specialist.

Another said that "we did not learn much about that in med school."

What about y'all?  What were your experiences?

--John

Yes, my doctor and I had that discussion in 2018 and in 2019. When I ended up having problems with my incontinence diverticulitis and IBS, the subject was broached again when I ended up having these problems. I asked him for help, he gave me the help I needed, and when the diapers that were prescribed didn't work, I asked him for better ones, and he helped me write the script that helped me to get them, in the state was able to cover them. My doctor is 100%. aware of my incontinent, and I'm glad that I was able to talk to him about that. There are people that probably are embarrassed about their incontinence or other conditions, but wearing diapers is something that I will, because I don't want to fight my body, and I'd rather change my diaper when I need to, rather than to worry about the fact that I might use it.

It's too bad that we have the stigma that diapers are bad: some people don't want to talk about that particular problem because they feel embarrassed or have issues dealing with the situation. unfortunately, if they don't wanna talk about it, they might not get the help that they need, so it's important I did what I needed to do in my situation. I'm glad that I was able to talk to him and be able to deal with that. I've been informed that my doctor will retire in the summer, and everything has been set so I don't even have to worry about anything, and everything will stay the same, and my medical provider will continue to provide the highest level of great health care that I have been used to, and I don't have to worry about having to rebroach subjects that are already on record. if I have to talk to my doctor about anything, I would rather talk to him rather than to try to hide it, because the doctor works for you, and if you tell him something or not tell him something that is important, he might not be able to help you with your deal you're dealing with something that you need help with and you do not disclose it.

As everyone knows, diapers are ONE WAY to deal with incontinence, and there are other ways, but as much as we deal with medicines and everything else, I would think the best thing would be to use diapers if that is what you want to use. I'm not saying anybody else has to use diapers either, and that's their decision one way or the other whether they use one solution versus the other. but I'm glad that I am I am able to talk to my doctor about the subject, because it is important. All we have to do now is let people know that it is not a bad thing to talk to your doctor about incontinence, as long as your medical providers and people that help you know what's going on, they can help you a lot better.

Brian

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  • 1 month later...

Yes, of course - I usually ask my GP first. Maybe it's something special in Germany, but we have something called the "Hausärzte Programm." That's basically a program run by the health insurance companies, where the GP (or rather the specialist in general medicine, because you need a special qualification for that) takes on the role of coordinating doctor and suggests which specialist should be involved. One decides for a doctor who should take over this task and then stays with him.

This is a good thing when you have found a good doctor, because he collects all the diagnoses, medications and recommendations of the specialists and can then see, for example, whether medications prescribed by different specialists may be contraindicated. In addition, he has a complete overview of the situation and can speed up the diagnosis, for example, by involving several specialists at the same time.

In my case it was quite practical, because while the urologist with his BPH treatment did not really get further, I had neurological examinations and a referral to neurourology / neurochirogia from neurologists already after several MRI's, which then after the UD and a few other examinations also brought the corresponding depressing results. 

If I had waited for the urologist alone, it would probably have taken years and my back problem would probably have gotten worse.

 

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On 4/25/2023 at 6:54 AM, John Davis said:

Those who have a well-informed and supportive PCP are very fortunate.  However, Iken's PCP may be taking support to a new level with his diaper checks.

--John

My PCP is the biggest advocate for why I am in diapers. He's also the one that's comfortable with me being kept in diapers and not on any Incontinence meds. It's why he never had me be potty trained again and has kept me in diapers instead. 

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  • 1 month later...

I just had an interesting conversation with a new urologist, so thought I'd share.

For those who don't know, I previously had a severe urinary blockage (neurogenic dyssynergia), coupled with sever urge incontinence. And yes, it was painful and the complications from it were even a little deadly. A whopping 16 surgeries later and now I'm functionally incontinent, with dripping all the time.

Except recently I've sometimes been retaining urine in my bladder. Given my history I figured it would be best to look into why that's happening. So my pcm referred me to a new urologist. I'm a disabled veteran, and get my primary care at a Navy base hospital, and my urologist referral also ended up being on base too. And he is an active duty Captain.

So I started him off with a brief history, where I should be with my functional incontinence, and what's been going on. And as expected he ordered a cystoscopy for a later date so we can figure out what's changed. But then he starts asking me how I've been dealing with all my problems, sex life, and managing my incontinence! Like, no other specialist has EVER cared enough to even ask this stuff....

On the topic of managing my incontinence we ended up talking about how difficult it was for me when I first started wearing depends 24/7 (In the 90's). And how bad they were with leaks. How even now the only thing dependable with Depends is they absolutely will leak. But I've since found much, much better online that is also cheaper.

Intreagued he asked me what I use now, and I told him Betterdry (just to keep it simple, even though I actually use Crinklz). That yes they cost 3x as much, but they also last 6x as long. They don't leak, have better acquisition and therefore feel dryer for longer, need changing much less often, and therefore cost less on a cost-per-day basis. And he was really happy to hear all that. I just wish I also told him about LLMedical, which sells them with a military/veterans discount. Lol, or maybe this website too.

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Slomo, you are fortunate to have found a urologist who cares and has some interest in incontinence management.  And good for you for educating your doctor about management.  My urologist is a good practitioner, but has zero interest in managing, vice curing, incontinence.

In contrast, my SCI rehab doc has shown such a great interest in the management aspects that I regularly have a "show and tell" session with her at the end of my appointment.  When I showed her a Megamax she asked whether she could keep it to show the other docs. We similarly discuss enema equipment, etc. As a SCI rehab specialist, she is into the practical side of diapers, laxatives, enemas (now commonly called "irrigation"), enema gear, etc. (more than any other physician I have met).  Bowel management is a critical health issue for quads, paras, and many others with severe spinal trauma.

--John

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That's like mines as well. I have a PCP who cares and has interest in Incontinence management. It's why for mines, when I got see them for my checkups, as part of my checkup, he checks my diapers to make sure I am using them and not developing any diaper rashes. It's also the same for my dermatologist as well, she checks my skin around my diaper area to make sure I am using them. It's also why my doctors and nurses that take care me all have great interest in what I use to manage my incontinence. I even show them the diapers I wear on a daily basis. It's why they know I prefer diapers over pull ups and they know I wouldn't last a day in a pull up. On top of that it's good to show the medical staff that their is nothing wrong with being in diapers and using diapers to manage your incontinence. 

Plus being an EMT and having to do calls to Nursing homes and assisted living facilities, I even get to educated those folks on better diapers such as Northshore's and even showed their website on my phone. Which often results the Nurses ordering them for their clients and has done wonders for them. The stuff they use for their clients in the Nursing homes and assisted living facilities would make me cringe.

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