www.incontinentsupport.org

Hi,

My question, in case you don't want to wade through my introduction, is, after reading this and other forums it seems like a majority of people dealing with incontinence either end up in diapers/sheath catheters, or end up having to use catheters because of retention. A lot of my readings also seem to show a huge swing in percentages for success of treatment. Some sites and health boards claim that it can be cured for sure, but when i look at forums of people who actual suffer, the optimism seems to sink. 10%-40% improvement with drugs, up to 50% improvement with behavior therapy, training, and surgery. Is it really that bleak? Is there really only a 50% chance of getting better? Or, is there a LOT of people who have had the medicine, it worked, and then never posted anywhere. I ask because the vast majority of reading I have done seem to show limited results with kegels, medicine, and surgery and an eventual acceptance of incontinence for the majority of sufferers...

by way of introduction I am a man in his early thirties. I have had what I believe is OAB for as long as I can remember, which over the course of several years progressed. When I started work as clergy I started to wear protection for convenience because I could not get up every fifteen to twenty minutes to go to the restroom. I also served for a time as a driver to my bishops and could obviously not stop when I wanted to use the restroom, so I quietly endured. Now, whenever I am not protected I feel chained to the restroom. I have tried kegels but maybe I am not doing them correctly or I just did not give it enough time. I also tried timed voiding and double voiding, but my work schedule is not such that I can easily follow a schedule like that.

I never told my doctor about it until recently. This was at the behest of my wife, who I told about my issues before I got married and admitted I had not been formally diagnosed. When I went to my annual physical (it was a new doctor because I had recently been transferred) I put my OAB on my medical sheet and all he did was ask me some questions. How long I had been dealing with it, and if I wanted to pursue different treatments. I have naturally dry eyes and migraine headaches so I told him I was worried about the side affects of medication. He agreed with me and said he also had heard a lot of the medicines also cause dizziness. That scared me enough to say I did not want to do medicine. I also have read some horror stories of surgeries and the idea of going "under the knife" except for life threatening need is something I want to avoid, especially if the results are not a guaranteed 100%.

He seemed upset and sympathetic that I have to wear a "pad" as he called it, but he did not suggest anything more. He did not refer me to a urologist or ask for me to come back to do some tests. I mentioned I had had a polynidal cyst three years prior and that doctor checked my prostate (It was agonizing pain and I was terrified I might have cancer), but it seemed odd that my doctor did not want to look further. Given I have dealt with this for over a decade, it really has not negatively impacted my life. I have a supportive wife and I am active. Is that normal for a doctor to leave it at that? Should I be concerned?

Thus my question up at the top. Am I wrong to not ask for more options or is it really as bleak as it looks? Given the medical costs of visits, and pills, and still having to purchase protection, a part of me thinks it would be easier to just live with it if that is the ultimate outcome that most people find.

Thank you so much for your listening to me rant, and I hope that my question of finding a cure is not out of line or insensitive.

Tarlton R

Hello Tarlton ,

To answer your main question, I would say things are not that grim. You have to consider that if someone has a successful treatment, they normally would not go and seek support on an online forum and if they do it will only be at the beginning before the treatments and or medications have had a chance to yeald improvements. I think(and these are just my thoughts) that when someone can not find a level improvement that gets them back to normal, that is when they seek online support and become active there.
Me for example, when I came down with interstitial cystitis I was I was devastated. It was a total change of my way of life and there would never be a cure. I became active on an online forum for the condition but iI quickly learned what to eat and got on medications to help me and did see a lot of improvement in the way of pain. However the frequency and urgency symptoms continued and I eventually became incontinent from it. Once I felt fine with the IC I stopped posting there but the incontinence continued to bother me.
So the pointI am trying to make is if someone finds a treatment that works, they will likely no longer need support and will not post anymore. Those of us that stick around seem to be the few that treatments don't help and end up as the worse cases. Make since? Good luck with finding answers. There is a ton of information here and I'm sure if you have questions some of the other members will reach out with answers for you. Don't give up on your doctors just yet. You will need to swallow your pride and ask for formal help. Mentioning your OAB symptoms at a visit for something else kind of catches them off guard and maybe that is why they ddidn't look into treating you for it more aggressively. s

I agree with Rope. You ought to get the matter properly investigated. It will mean bladder tests (which are not much fun) and my include scans of your back as well to check for any problems with the nerves in the spike.

Although OAB is a generic term and can juts be a misbehaving bladder, it could be symptom of a more serious condition so needs to be checked to make sure.

I agree with all of the above. Folks whose incontinence is cured no longer need the support found here, so they leave. This site is populated by folks whose incontinence is still a challenge for them. If you find a urologist who orders a work-up, brace yourself for some embarrssing and invasive tests. If these tests lead to a cure, wonderful. We will bid you farewell with smiles on our faces. If a cure seems distant or unlikely, stick around; add your insights and support. Either way you are welcome.

Thank you all for the insight and it does make the prospects a little brighter. I will definitely follow up with my doctor, but I am a little worried because the last tests that I figured were just routine for a different/more serious concern ended up costing several thousand dollars and forced me to shell out seven hundred dollars to cover what my insurance would not. For those who have had these medical tests, what was the cost to you wallet? I have read a urodynamic test is very invasive, very costly, and often doesn't reveal much. I have also read that many people have had to go to multiple urologists and each want their own urodynamic test. I don't think my finances could take that big a hit, but on the other hand I do see the need to make sure that there is not a sinister underlying cause that could be life threatening.

Truth be told, after living this way for about twelve years, it has become habit, and while a cure would be nice, I am not going to cry myself to sleep. I have the attitude of "sometimes life is hard. Sometimes life throws you lemons." The way I explain it to my people (please forgive me if this is too preachy), "We do not get to pick the crosses we are given in life to bear, but we do get to choose HOW we carry them." I accepted this as a cross to bear a long time ago, primarily because just as clergy aren't supposed to reveal things in private ... but they do, doctors also share things in private. I mentioned this fear to my new doctor and he agreed, saying while he found that practice deplorable, he had been witness to it many times.

When you are clergy or a ceo, people automatically give you celebrity status, and like celebrities there are tons of people looking for any form of dirt or gossip to sling. My wife has said, "I want people to see you as a good priest, not the priest in diapers." This fear of exposure, that would travel much wider than just the city I live could have potentially major negative consequences (in the Church of all places? Yeah, I know, right?), and has made me very fearful of going to a doctor who could potentially say to his nurses, "Oh, you know the priest from XYZ parish? Yeah, he was in to see me today, and he wears protection," and one of those nurses says to someone to someone to someone... I know it is a stupid fear, but it has kept me from seeking help.

I will stick with my current doctor for now. He has helped me on a few other non-related health issues and I am grateful to him and therefore loyal. I will discuss it further with him on my next visit, and I guess get the ball rolling.



I have been a long time reader of these boards (as you can tell ) and respect the advice given, especially this forum. I only posted now because of financial concerns. Between my medical bills, my wife's medical bills (Thyroid, veracose veins, ADD, severe spinal trouble for which she is seeing a chiropractor), her multiple medications, my medications, my protection, and to add more to that seemed a bit much, especially with the new bills that I did not expect from the hospital, so I want to see if help is viable or a myth. Thank you so much for leading me to believe that there might be light at the end of the tunnel!

Hi there,

First, I want to give you a glimmer of hope regarding attaing dryness.. I say glimmer because as fate would have it in the past weekend i find myself having leaks and wearing protection...but...some doctors are VERY good at getting to the bottom of the inconteince and finding a solution. In my case it was a urologist at U of M that made the suggestion that it was catapres and inability to relax my pelvic floor.. that kept me dry for 4 years with no diapers whatsoever..and now..at work i had huge blotches of urine on my underwear and more than a slight spot on my pants..i had a stream going down.. they were not drenched..but could have been had i not clenched the sphincter.. needless to say i bought a pack of briefs the next day and have been wearing protection since..and im hoping its just a UTI..hang in there!

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Tarlton,

You obviously are a survivor. You have learned how to coped very well on your own for years, despite your circumstances. Please visit that urologist. You always can back out after the first visit or so if you feel that you are not receiving a good return for your money. If you read the messages here, you will see that it is likely that you will have at least some positive progress.

--John

Thanks again for the hope, guys. I appreciate it.

Tarlton, I wanted to add my voice to the others already here. I am living with what I believe to be OAB. I am going 15-18+ times per day. I have no problem holding it, or making it on time, so I am good there, but after I am done urinating, I leak for a while, sometimes a little (like a silver dollar sized) sometimes like the size of a lemon......I have been dealing with this for a comparatively short time, only since February/March time frame. But I am up most nights AT LEAST once (sometimes 2 or 3 times a night) now that the Vesicare I was prescribed quit working abruptly a couple weeks ago......I have been wearing diapers/pads/pull-ups depending on the day pretty much all the way through this whole several months ordeal. I am lucky in that I can get away with a pad/pull-up but usually prefer a regular diaper when I am at home. Now, at work....I am a firefighter, I work 24 hour shifts. I wear a uniform and it is a physically demanding job, and I am in close proximity to my co-workers and we live in the firehouse when we are on shift. Firefighters LOVE to gossip....So I am trying to keep this a secret at work. My crew knows that I have a "bladder issue" but knows no more than that. I haven't expanded on that and that's all they need to know. So I feel your pain as far as having issues, dealing with work etc.....You need to go see a doctor. You don't need to see one in the town you work in. You could go to a nearby town. You also don't need to reveal what you do for an occupation should you not feel comfortable talking about it. As far as the tests. You will lose any shred of dignity you ever thought of having. I have had the cystoscopy, uroflowmetry, DRE, Post Void Residual ultrasound......etc.....I didn't like the first urologist right off the bat as soon as I met him. I have made the switch to a new guy, but haven't yet seen him....In the meantime I am still taking the vesicare, though it is doing nothing. I am still peeing up a storm and having accidents......but I am surviving and you will too.....good luck....keep us up to date.....we're here to help.....