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No Progress at Urologist visit
http://www.incontinentsupport.org/phpBB3/viewtopic.php?f=7&t=2468		 Page 1 of 2
Author:  MikeJames [ Tue Sep 13, 2016 11:03 am ]
Post subject:  No Progress at Urologist visit
Had a follow up yesterday. Told the doctor that the myrbetriq wasn't giving me satisfactory results and that the side effects were still obnoxious even though better than oxybutynin, toviaz, Detrol etc. He told me there's still a few I haven't tried and said he'd write a script but I told him to hold off. Nothing's been working and I'd prefer to just take a break from pills. He seemed disappointed. I like this doctor a lot and think he genuinely wants to help me but I just don't want to keep spending all this money on pills to feel like crap and still wet the bed anyway.

He kind of bluntly asked if I was planning on just resorting to "pads" and giving up. I reminded him he's the one who told me to keep "padding up" at night until we get this resolved. He said the goal is to not have to rely on them and then he wanted me not to use them long term. I kind of just said look, I don't want to use them either but none of the meds have worked and even if they worked well we both know the best they're going to do is shave a few nights a week off. If I'm still wetting the bed 3 or 4 nights a week then it's either keep using diapers or go back to the nightly routine of waking up, cleaning up, sleeping on towels, and washing a pile of towels and bedding in the morning. The whole reason I chose diapers was because that routine was grating and exhausting and made me feel dirty. Diapers are embarrassing but I'm sleeping better, it's easier, and more hygienic. He said he thinks he can help me and doesn't want me to give up. I told him I'm willing to try just about any treatment but I just need a break from the pills for a bit.

He told me to schedule a 3 month follow up and we can run another urodynamic study and to call any time in the meantime if I want a script. I agreed, but I don't know if I'll even bother. I already did a urodynamic study and the results were not conclusive. I'm kind of just sick and tired of taking pills and being poked and prodded with invasive tests. I'm not very optimistic at this point that I'll get out of diapers any time soon. I guess I just have to accept this and move on. Maybe after a bit of a break I'll consider trying some other meds, but it seems to me they're all much the same. Similar molecules working the same pathways all with little variances in side effects and efficacy.
Author:  B Brian [ Tue Sep 13, 2016 1:27 pm ]
Post subject:  Re: No Progress at Urologist visit
I really feel for, and have SO been there myself. I know first hand if you don't empirically rule out EVERY pill then EVERY urologist you ever see is going to get hung up on whether or not this one or that one pill would have worked. They will be unable to move on to other (more definitive) treatments until then.

Like you, I would get tired and discouraged of yet another pill, and just stop going to that urologist. Usually within another year of nothing getting better I'd go see yet another urologist and have to start the whole process over again. This went on for over a decade for me, until I eventually realized it's much easier, and way faster, to just jump through their useless hoops so I could eventually move on and finally start making real progress.

I'm sorry to say, but you're probably going to have go through their hoops as well. Do not give up though. There is an eventual end to the pill crazy urologist, even if it is a long journey.
Author:  jeffswet [ Tue Sep 13, 2016 4:03 pm ]
Post subject:  Re: No Progress at Urologist visit
I'd be tempted to ask my urologist what he would do if it was him losing control (if he was critical of diapers). Fortunately, my urologist hasn't gone there with me. All I know is that I wouldn't have a life if I refused to wear that level of protection.
Author:  MikeJames [ Tue Sep 13, 2016 4:24 pm ]
Post subject:  Re: No Progress at Urologist visit
jeffswet wrote:
I'd be tempted to ask my urologist what he would do if it was him losing control (if he was critical of diapers). Fortunately, my urologist hasn't gone there with me. All I know is that I wouldn't have a life if I refused to wear that level of protection.


Yeah I don't get it. I think that people who aren't experiencing these issues first hand just think "I would NEVER wear a diaper". Oh how fast that mindset changes when you're suddenly in need of them.

I think it has to do with the fact that probably anyone older than the youngest in today's generation were toilet trained with heavy doses of shame (do you want to use the potty like a big boy/girl or wear diapers like a baby). They probably think throwing pills at things is more dignified than wearing diapers. Also they think of success in relative terms. To me successful medical treatment would have to be 100% cessation of symptoms with tolerable side effects. To them success is "I've helped you, yo only piss yourself half as much now". Well cool bro, but what about the other half of the time? :)
Author:  B Brian [ Wed Sep 14, 2016 10:24 am ]
Post subject:  Re: No Progress at Urologist visit
I couldn't agree with that sentiment any more. I've had way too many urologists think that even a 10% improvement is great. I just tell them it's a 90% failure, which is absolutely horrible.

Needing diapers even half of the time is still needing to be diapered all of the time since we can't predict when that other half will occur. In this regard it is only a complete success, or a complete fail. If no medication can give people a 100% improvement then what's the point in taking them....
Author:  PB&J32 [ Wed Sep 14, 2016 8:35 pm ]
Post subject:  Re: No Progress at Urologist visit
Pills are just not worth it for a couple of dry nights a week. If it's not 100% wear the diapers and get over it.
Author:  ScottK [ Sun Sep 18, 2016 1:50 pm ]
Post subject:  Re: No Progress at Urologist visit
I also have had no real progress at my last 2 or 3 urologists visits. But my lack of progress just might be the fact that I am "dealing with" these issues. And I am "OK" with how things are proceeding at this time. And for the most part, I am ok with how things are going with me during the day. So what I am trying to say here is; as long as I can tolerate, live with, handle and or deal with my incontinence, the doctors will be good with the amount of care it takes to maintain that level.
Author:  RoadPirate [ Sun Sep 18, 2016 4:58 pm ]
Post subject:  Re: No Progress at Urologist visit
Wouldn't it be nice to find a urologist who had experienced either personally, or with a relative, just what you are going through? Doctors are rarely allowed enough time to get to know you and what you are feeling. A shame, but under today's healthcare methods it just isn't in the cards and I cannot see it getting any better.
Author:  Wetters [ Sun Sep 18, 2016 6:25 pm ]
Post subject:  Re: No Progress at Urologist visit
I'm guessing that diaper companies don't give out perks to docs for prescribing their products. I think that's why even premium diapers cost less than pills, and why doctors discourage the use of diapers. What doctors should do is run the tests to find out what's causing the bladder dysfunction, and provide the appropriate remedy based on the test results (like they would for any illness). If pills are expected to be a fix but don't work or the side effects are too problematic, then the doctors should get on board with diapers as a means for incontinence management. That likely won't happen, though, since managing well with diapers also does away with the ongoing medication management appointments.

W.
Author:  Patrick [ Sun Sep 18, 2016 8:06 pm ]
Post subject:  Re: No Progress at Urologist visit
Wetters, your insight is right on. Medicine can save lives, and it can wreck them, when the profit motive rules.
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