Diaper shaming by doctors what's your experience ? I have mostly had a decent experience but not always

[Raven801]

I suffer from oab, painful bladder, pelvic floor dysfunction kidney issues and IBS. And the first urologist I went to as things got bad and accidents started being a frequent issue they kindly suggested a permanent indwelling catheter.. I tried it but it really set off the painful bladder...then they suggested diapers....I already was wearing most the time but didn't admit it because I was ashamed. Then I moved and had to get a new urologist and man she was totally against diapers. I tried to explain that try to hold it was extremely painful and she didn't seem to care she seemed more focused on getting me continent than getting me out of pain. After one visit where they did a cystoscopy which required the removal of my diaper I put my pants on and didn't put a diaper back on because she made me feel uncomfortable we talked for 25-30 minutes and we'll out of nowhere my bladder went nuts I went for the door and didn't make it 3 steps before I had an accident she looked at me like I just insulted her and was like ok we're done here go deal with ...that ...and we'll talk later. in a very patronizing fashion... I was mortified. Never went back to her .. instead found a new urologist who has been amazing he suggested diapers because I told him I had accidents and pain he said it's simple if your protected accidents aren't a big deal and further more don't sit there in pain pain is your body saying something is wrong. He said if you wear protection there's no shame in using it besides when you're in pain you tend to tense up and try to hold it through the pain your straining you pelvic floor which might be counter productive we need to get you to relax those muscles instead of them being strung like a piano wire and really and In the mean time let's try some therapy and medication to get you out of pain and figure this thing out ...once your pain is manageable well work on control don't be ashamed of yourself nobody wants to be in pain. He is so easy to talk to it's been incredible.just curious what others have experienced

 

[Angelapinks]

I suffer from oab, painful bladder, pelvic floor dysfunction kidney issues and IBS. And the first urologist I went to as things got bad and accidents started being a frequent issue they kindly suggested a permanent indwelling catheter.. I tried it but it really set off the painful bladder...then they suggested diapers....I already was wearing most the time but didn't admit it because I was ashamed. Then I moved and had to get a new urologist and man she was totally against diapers. I tried to explain that try to hold it was extremely painful and she didn't seem to care she seemed more focused on getting me continent than getting me out of pain. After one visit where they did a cystoscopy which required the removal of my diaper I put my pants on and didn't put a diaper back on because she made me feel uncomfortable we talked for 25-30 minutes and we'll put of nowhere my bladder went nuts I went for the door and didn't make it 3 steps before I had an accident she looked at me like I just insulted her and was like ok we're done here go deal with ...that and we'll talk later in a very patronizing fashion... I was mortified. Never went back to her .. instead found a new urologist who has been amazing he suggested diapers because I told him I had accidents and pain he said it's simple if your protected accidents aren't a big deal and further more don't sit there in pain pain is your body saying something is wrong. He said if you wear god protection there's no shame in using it and I. The mean time let's try some medication to get you out of pain and figure this thing out ...once your pain is manageable well work on control don't be ashamed of yourself nobody wants to be in pain. He is so easy to talk to it's been incredible.just curious what others have experienced

Amazing, so glad you are getting things fixed. My urologist was the same way at first and wanted to add more medications to my growing list. I told him that things had gotten worse since I started down this road and the last thing I needed was more pills. Then he admitted they don't work most of the time anyway. I told him I was losing sleep getting up every half hour to pee and that was making me irritable. I knew it was not ideal to start wearing a diaper at night but after a week I was glad I did. A few nights of great sleep and I was in a much better mood to deal with things and I was getting to the point where I never got a signal I needed to go, it just happened. I would sometimes wake in wet sheets and clothes and have no recall of going. Now after wearing for a few years I get 7 - 10 hours of great sleep but wake in a totally soaked diaper.

 

[slimjiminy]

...Then I moved and had to get a new urologist and man she was totally against diapers. I tried to explain that try to hold it was extremely painful and she didn't seem to care she seemed more focused on getting me continent than getting me out of pain....

My experience is rather limited in this regard. But I'll say that my urologist and nurse made no judgement or disparaging remarks about my pull-up at last summer's appointment. After the catheter was inserted, I was going to rip the pull-up off when the nurse offered instead to help with a glued on attachment to hold the catheter to the leg, to remove the tension. Then the pull-up was pulled up to hold everything in place.

Before that appointment, I had an ultrasound performed, and in that case, I sensed some unfriendly treatment. But I couldn't tell you if it was the pull-up or whether he just hated his job. My bet is on the later, because he was unfriendly from the get go from the waiting room (in total contrast to other technicians that were serving at the time).

 

[Abdlchriscrinkle]

I've also been shamed by doctors for just using diapers instead of a bunch of useless side effect inducing meds.

Once, a doctor said I didn't try a prescribed med long enough for their liking, and I said ''what good is this if I'm either constipated or having explosive diarrhea mixed with migraine headaches and dry mouth?"
To which they replied ''well at least you're not wetting your pants anymore''
I flat out told them off to their face and walked out, straight to another practitioner (sadly she wasn't much better).
Hopefully I find a better doc in the new town...

 

[OnePiece]

My experience with doctors aren't great. Not that anyone has shamed me, but several has let it shine through
that diapers are the absolutely last option.
Like others I've been through different types of meds that didn't work and with side effects that was much worse that my leaking bladder.
Seems like many doctors want to find a way to cure one symptom, creating other problems, and no-one has been interested in finding
the root cause.

 

[CheshireCat]

My bladder quit working over night. I woke up in retention and 8 hours later lost control. I have a neurogenic bladder and there is no medication that will fix or help it. Some meds will help it not spasm, but not regain control. So no urologist has ever given me any issues about diapers. My orthopedic surgeon was adamant that I stayed out of diapers until the scars healed following both hip replacements, and obviously that made sense.

 

[Edgewater]

Like story, but better urologists.

There seems to be an every growing belief that medication is the proper method and damn the side-effects!

I have long ago come to the understanding that just like all other professions, the vast majority do not graduate at the top of their class and one has to be willing to stand-up for yourself!

I have never had any problems with attitude regarding my wearing diapers from urologist and their staff. But, the further one gets from that specific medical group, the responses can vary. I had a recent Type 2 review and the nurse was a bit uncomfortable that I was wearing a diaper. A couple of jokes from myself had her a bunch more comfortable. I am thinking it is an exposure thing. Once the edge was off, the rest of the appointment went very well.

Regarding, the top of the class thing, never be one bit shy about looking for better care! Life is way to short to put-up with a doctor that believes that diapers imply a rejection of their course of action.

 

[Zeke]

My GP is great about my wearing diapers, but then she knows that I’m dual ic so I guess that should be expected. The three female ultra sound techs were very good about it as well, but were quite curious about my cloth diapers and snapon plastic pants being of the younger generation that hadn’t seen them before. Then there was the urologist and his trainee that was observing. They both were rather dismissive and aloof about my wearing diapers which seemed to fit well with their snobbish manner. It could be that they saw diapers as a failure of their specialty’s ability to cure my incontinence. They do love to use their prescription pad and scalpels.

 

[Raven801]

My GP is great about my wearing diapers, but then she knows that I’m dual ic so I guess that should be expected. The three female ultra sound techs were very good about it as well, but were quite curious about my cloth diapers and snapon plastic pants being of the younger generation that hadn’t seen them before. Then there was the urologist and his trainee that was observing. They both were rather dismissive and aloof about my wearing diapers which seemed to fit well with their snobbish manner. It could be that they saw diapers as a failure of their specialty’s ability to cure my incontinence. They do love to use their prescription pad and scalpels.

 

[Raven801]

I love the end of your comment the scalpel and prescription pad and snobbish attitude...I wonder is we had the same urologist at one point lol

 

[PupSpaz]

Having adult continence issues presented by a lot of frustrated / embarrassed patients everyday would probably wear on anyone. Humanity has all types, and some doctors are much more interested in making your life better vs. pushing patients through as quickly and perscriptivly at possible - and everyone has a bad day from time to time. It's frustrating too hear the negative experiences and a reminder that shopping around for a more understanding doctor is also usually in your power.

And it's also certainly true that many doctors and surgeons see every issue through the lens of the prescription pad or scalpel... If all you have is a hammer, everything looks like a nail...

As apparent from this forum, a lot of continence issues don't seem to have fixes, just aids that may help relieve symptoms or resigning yourself to some form of protection.

It's a wonder urologists aren't better at being honest and upfront when diagnosing and providing treatment options - check for something correctable, and treat that if there's something that can be fixed. If nothing can be identified or fixed, discuss aids or therapy that may be helpful including medications and be honest about using appropriate protection and living your best quality of life. Simply prescribing a medication with low or incomplete success rates and miserable side effects and telling the patient to come back if it doesn't improve seems disingenuous yet appears to be the standard of care often shared on here.

Perhaps some surgical or implantable aids are sometimes helpful, but certainly doesn't seem to be available to everyone or perhaps even practical or very effective. New treatments will invariably appear in the future that may be more effective, but fighting for small improvements at all costs seems silly and detrimental to overall well-being when the expected outcome isn't full continence or still involves a reduced quality of life. Pain isn't acceptable either, many of us would take full time diapering 100% over being in constant or even sporadic debilitating pain.

I'm fortunate right now, I have a good relationship with my primary care physician, he's willing to work with me and my needs instead of imposing his expectations. Good doctors exist and good doctoring is known, just not all doctors are at that level for various reasons. Having a medical industry in this country (USA) hell-bent on maximizing profit and sucking as much $ as possible out of the patient doesn't help, nevermind the shortage of front line staff.

 

[munkey]

I had to go talk to my doctors about my issues with urianry incontinence and walked out with a prescription for Northshore Megamax and have some test coming up… so I have no issues.

 

[Raven801]

I had to go talk to my doctors about my issues with urianry incontinence and walked out with a prescription for Northshore Megamax and have some test coming up… so I have no issues.

Wish my insurance would cover some mega Max's unfortunately that's not how it works..... I'm stuck with tranquility arms and boosters but they are paid for by my insurance

 

[Edgewater]

The main issues with medications is that near all were designed to treat other ailments and as part of the clinical trails some level of urinary relief was noted. Add to that the variations client to client (there are those that they work well with) as a result older medications have known percentages where newer are more a crap-shots. The side-effects really vary client to client across a wide spectrum from zero issues to debilitating.

Adults wearing diapers is problematic on all levels as there is no line of individuals at the Doctors office asking to become IC. As a result the profession looks at diapers not being plan B, but some place way down the list.

As you state, the doctors are forced to keep the appointment to a very limited time line set by the Insurance companies and the government. Writing a scrip is a quick solution that the insurance company and government wants. Fast and cheap!

Point being, we need to be assuring our doctors understand our wants and needs, plus what is acceptable (diapers) if the medications or blade is not working.

 

[Angelapinks]

I've also been shamed by doctors for just using diapers instead of a bunch of useless side effect inducing meds.

Once, a doctor said I didn't try a prescribed med long enough for their liking, and I said ''what good is this if I'm either constipated or having explosive diarrhea mixed with migraine headaches and dry mouth?"
To which they replied ''well at least you're not wetting your pants anymore''
I flat out told them off to their face and walked out, straight to another practitioner (sadly she wasn't much better).
Hopefully I find a better doc in the new town...

I have to admit I have a team of pretty good doctors and my family doctor of more than thirty years was also a friend who made sure I got the best help he could find. I have a great doctor who treats my back problems and the last time I went to him for a surgical procedure I told him I needed to wear a pull up to prevent accidents. He told me no problem just do what you need to do to feel comfortable and the O.R. nurses were just as understanding and helped me get comfortable before and after the procedure. I now have a new family doctor after my friend passed away and he is young but just as caring about the patient.

 

[PupSpaz]

Adults wearing diapers is problematic on all levels as there is no line of individuals at the Doctors office asking to become IC. As a result the profession looks at diapers not being plan B, but some place way down the list.

While I agree that diapers are way down the list - based on other commentary from some of those suffering physiological issues in this forum, they do often end up being the most prudent and quality-of-life oriented solution while being looked down on by some doctors - many aren't prepared or knowledgeable about incontinence management, just incontinence "cures" and pharmaceutical crap-shots. Some Doctors are more concerned about you following their agenda and biases than addressing your personal needs. Hopefully bad doctoring is a small minority, but definitely have heard stories here and elsewhere (and of course bad-experience stories stick out) about Doctors pushing asinine personal morals or values on patients that had nothing to do with the outcome the patient would prefer while still being medically sound.

If you're going to leak, diapers & pads work well and are generally available, but have a stigma attached that can be difficult for some to overcome - double that when your own doctor looks at you in disgust when you mention using them. Leg bags, penile clamps, catheters and other medieval-tortureish devices have their place and work well for some (and may even be necessary!) but of course have their own unique set of challenges.

 

[slimjiminy]

While I agree that diapers are way down the list - based on other commentary from some of those suffering physiological issues in this forum, they do often end up being the most prudent and quality-of-life oriented solution while being looked down on by some doctors - many aren't prepared or knowledgeable about incontinence management, just incontinence "cures" and pharmaceutical crap-shots. Some Doctors are more concerned about you following their agenda and biases than addressing your personal needs....

I believe that the real issue is that doctors don't like the fact that they can't really help you. The ego side of medicine. All meds do this or that, but none are a 100% cure. And isn't that what we need? And then add all the side-effects from the meds and no wonder people say no.

 

[hbic60]

It's so good to see not being alone with my thoughts and that others have similar experiences! I'm lucky having a doctor who is listening to his patients and sees himself more as a counselor in medical matters instead of being a "god of medicine" who knows everything best. He listened carefully what I told about my continence issues, made necessary examinations to exclude serious health damage, told me the results and discussed possible treatment options - being so honest to tell me that he couldn't cure my IC, everything any treatment could do is giving only some enhancements in my continence but also telling me all about side effects and asking me if I wanted to accept those. He fully accepted my answer telling him that I don't have any issues wearing protection to handle my IC - rather than having to live with side effects of medication and still needing to wear some kind of protection, even if it might be lighter ones. He left it to my decision to come back to him whenever I'm not comfortable any more and want to give other options a try. He gave me a permanent prescription for IC supplies, and done.
He openly told me that urology isn't ALWAYS an exact science where it is easy to find an exact cause and giving a treatment as a result, but it's often "trial and error" - and this might be a long (and sometimes painful) path and not always successful. I decided for myself - as I have no pain or other strong issues with my combined urge and dribble IC - not to go this path and simply manage it with wearing according protection.

I absolutely blame no-one who is fighting against his IC, trying everything to keep as continent as possible, trying out all treatment options - maybe if I would be 20 years younger I might also go this path. But I'm meanwhile comfortable with wearing my diapers, they work well, I feel no shame having to use them, I can continue to live my active and social life as I did before, my wife is fully understanding and has no issues how I deal with my IC and loves me and doesn't see me as a different person no matter if I'm diapered or not - so what?

 

[mickdl]

Doctors treat according to guidelines. The guidelines prescribe a specific sequence of treatment - from conservative, to medicinal, to invasive (surgical) therapy. The same applies to the examination methods, which are graded from non-invasive to invasive.

In addition, there are also clear recommendations regarding continence aids. In the first line, pads or urinary aids should be used, and only if they are not sufficient, diapers should be used.

So if a doctor asks whether diapers are really necessary, it will rarely be a personal opinion and he will not "scold" about it, but he will simply follow the guidelines.

I have also been asked this - but it is a simple question that can be answered easily. I said: Look - that's why I'm here - I don't want these things either. How do we get a handle on the problem and do you have a better solution for me? Then we looked at the options and in the end it stayed with the current solution for the time being.

 

[jdinvirginia]

I have a good relationship with my urologist and he has been supportive. However, it is apparent that he regards me as his "failure" as I remain in diapers after a period of years.