Frustrated by lack of info

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I have to say, that having seen a urologist about my incontinence and bedwetting has made me feel a bit better. At least I can apply the OAB label to it and that takes some of the shame I've been feeling away. However I'm really frustrated by the world and medical community turning a blind eye to urinary incontinence in younger men.

I can find a million blogs, articles, etc on OAB in women. I can find a lot of info on OAB due to prostate in older men. But what about people like me? It's like we don't even exist. My urologist told me I'd be surprised by how many men my age have similar issues who, like me, have perfectly fine prostates. So what gives? WHY do I have OAB? I can't find ANYTHING on the internet exploring OAB. Almost every single info source just slaps the "prostate" reason on mens continence problems and then moves on. If it's not the prostate then apparently I've been in a traumatic accident and suffered spinal injury, or have MS or Parkinsons or other nerve damage.....Except NONE of those apply to me.

Any website that talks about OAB will have 80% of the content focused on women and a blurb about men, and again often older men. It's so frustrating.

If, as my doctor said, that more men my age than I realize suffer from this, then why is there no info about it?

 

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Mike,
I feel your pain. I was sure I had MS, which I don't. I have been diagnosed with Chronic prostitus. I don't have nerve damage. I am not sure whats wrong. I have not received OAB diagnosis, I am not even sure how they diagnose that. I am glad to hear you feel better about having a reason. I can understand that. I hope your able to manage and have a normal life. Keep your head up!

 

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My "diagnosis" was pretty much the doctor saying my symptoms check most of the boxes for OAB. Urodynamics was inconclusive. I don't always have urgency and leakage, it's only sometimes. Often my bladder fills slowly and the urge comes on gradually and I can hold it for hours. Other times the urge is sudden and extreme and I can hold it for minutes. This is pretty uncommon but does happen. The amount leaked is usually not a lot. I've started wearing Tena men's guards for my subway commute just in case. At home and in the office I feel like I can get to a bathroom in time, and have never leaked there. My primary complaint is bedwetting which is getting more and more common.

First thing the doctor said was "prostate" but the digital exam confirmed mine is not enlarged and the PSA results came back normal.

I have early type 2 diabetes and he said diabetic nerve damnage can cause incontinence but he thought that was a long shot since my blood sugar isn't that high and my diabetes is new. Very unlikely that I already have any diabetic nerve damage. So at the end of the day I think labeling it "OAB" was the best fit.

I have a crappy high deductible health plan and live in a very expensive (but very high quality - Boston) healthcare market. I don't even want to see the bill I'm going to get for all of this. He wants me to try exercises, lifestyle changes etc and then possibly OAB meds and if necessary repeat all this testing in 6 months. I don't want to go through all that discomfort and embarrassment and cost of all that testing again if it's just going to be inconclusive again.

 

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I've had some experiences where the doctor was sort of mailing it in and I was told to eat better, exercise and come back in 3 months. My GP suggested it might be better to see someone else. So... I lucked onto a PA who did a urodynamics and gave me a fairly clear idea of what was going on. I went to a surgeon who thought it was BPH but... I got that feeling from him that I got from the first dude that this was something being mailed in so I went back to the PA to ask for advice. She was quite clear that I ought to insist on a biopsy before assuming I had BPH so... I did and it was positive so I went from BPH to cancer surgery. Anyway - long story about finding a doctor (or PA) that you think knows what they are doing and aren't too bored with your problem.

Empathy. Kind of likely in women who work in the medical world and sadly it seems likely to be missing in male doctors.

How generalized is that? Ha. Anyway ponder seeing someone else. It sure saved my ass and currently is getting some years long problems addressed.

 

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I know exactly how you feel. Bowel incontinence caused by IBS is my issue. My doctor first recommended diet changes and of course I had already been there done that. Finally I got to gastroenterologist who performed a colonoscopy which was negative. So they sent me back to my pcm with IBS-D diagnosis and incontinence caused by that. I recently moved so I'm planning on starting over here.

One thing I could've done better, is be more up front about what was really going on. I tiptoed around my accidents, talking mostly about urgency and things like that. When I finally got over my embarrassment and just came out with it, that I was wearing protection because I was having so many accidents, they paid attention. I'm still not better, yet, but I'm pretty much over my shyness when discussing with medical people.

 

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I actually like this doctor. He was very thorough. In one visit I had a digital rectal exam, urinalysis, blood work, cystoscopy and urodynamics. Cleared for bladder and prostate cancer which was the most important finding for me. I guess I'm just disappointed that the urodynamics wasn't able to reproduce my symptoms and lead to a more definitive diagnosis. I misspoke if I suggested the doc mailed it in. He was actually very thorough and approached everything very matter of factly like all this testing is no big deal. I was as comfortable as I think I could be under the circumstances with him. I could never have gotten through that day with a female doctor! But that's just me haha.

After everything I've been reading about OAB which has included all the junk medical sites, to better sites like this, to peer reviewed journal articles, all I can come up with is OAB is a symptom complex with varying and often unknown causes. I think I'm just frustrated by that. I think I want a known cause. It's frustrating that the majority of web content for OAB focuses on women and what does focus on men just assumes prostate issues. It leaves me feeling like I'm a case that is slipping through the cracks.

What I really do like about this doctor is his conservative approach. He wants me to try exercises, times voiding, diet and exercise (which I'm already working on due to the diabetes), keeping a journal etc for a month or so and then on the follow up we'll talk about stacking a med onto the treatment plan. He says he likes to try things like this first to see if there's any, even little, improvement before adding meds.


Anyway just venting...thanks for your thoughts guys.

 

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Mike James,
I think you are on the right track. Once you have been following these exercises and journal keeping, etc. for a bit, I think you will be pleased with the answers and progress.
Sounds like you have picked an excellent doctor.

Regarding more articles for women than men, We just talk more to find answers. Men ca be more shy about this type of issue.
By the way, I think this forum is an excellent way to discuss issues like this.

 

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I have OAB Day Wetting and bed wetting. I went to a female doctor and she made me feel really awful, so much I nearly walked out crying. I never went back. Then I got sent to a male doc. He was so much better. It was discovered that I have a tumour on my kidney called an Angiomiolypoma. I also have Neurofibromatosis type 1 which has enlarged my nerve roots all down my spine, more so in the s1 s2 s3 s4 s5 region. This is the area that controls your bladder and bowel. He also said to me Adult enuresis is out there and not to worry. I also have been abused as I was growing up. But his attitude was so much nicer. I suppose you get the good and bad in both sexes. I work in the medical field and I listen to their attitudes, some of which I can't believe my ears what comes out of their mouths. So much that my opinion of them changes, and I start to dislike them just because of what they say. Sometimes if like saying what if that was one of your own or one of your mates. What then ????!!!!

 

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I know how you feel about 15yrs ago started wetting myself and the bed.The information I found was for women hardly anything about men, after several wks my wife strongly urged me to start using diapers to protect everything.

 

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even this site has some bad info for men. Under OAB it says "the causes are different for men". Simply not true. The causes MAY be different for some cases. While it DOES state that for men it's usually due to BPH, it's not always. Recent research suggests a paradigm shift based on an acknowledgement that while men have almost ALWAYS been treated first for Bladder Outlet Obstruction (BOO) due to enlarged prostate, MANY never saw results and that when these men start being treated instead for Detrusor Overactivity (DO), they see better results. This came from a peer reviewed journal article I just read. It said essentially that doctors need to STOP ASSUMING the prostate is the cause and instead LISTEN TO THE PATIENT to see if DO is more likely the problem. It suggested that aside from the prostate, urinary plumbing between men and women is not all that different and therefore it's reasonable to assume that Detrusor Overactivity can certainly be the primary cause in MANY men.

My prostate came back just fine. PSA normal, size was normal with digital exam. I have NO signs of obstruction (difficulty starting stream, stream stops and starts, post void dribbling) and even my urologist initially suggested the prostate. It wasn't until I spoke up and said doc, I really do not have voiding trouble AT ALL, I have urgency and leaks and I wet the bed. I don't believe my prostate is the issue unless my PSA comes back bad or you tell me my prostate is huge.

This site is awesome in general but it has a fair amount of updating to do on men's issues. I've been reading A LOT since this problem has reared its ugly head. I also have a science background and am not intimidated by scientific literature.

 

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@MikeJames

Have you looked over this parallel organization?

Home Page

www.simonfoundation.org

Lots to read there along with many sources.

 

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Hi Guys just to let you know I am a female. And I do feel for you males. I have had more in depth conversations with my Gp who is male than I have had with female Doctors. Some how for me they seem more caring. But I also wish I was a bug on the window sill to listen to what they say about me when I have left the room. I work as a R/N and I have heard discouraging comments said about patients once they leave. Bed wetting, day wetting, etc is such a taboo, that no one is willing to speek or deal with it. WHY ? ? When so many people are suffering. I don't understand.

 

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Another thing I find annoying is a lot of websites don't suggest wearing absorbent products. I've seen several bedwetting pages suggest everything BUT diapers. I get that settling for diapers on day one might not be the best idea but until a treatment option is available, diapers bridge the gap. IF treatments don't work or don't work sufficiently, you still need to protect the bed. I have a mattress cover now, but if I didn't wear a diaper I'd still wake up in soaked pajamas, sheets, and blankets. I would much rather get up in the morning and throw a diaper in the trash than do a load of laundry before work....and then have to come home and make the bed up again...every day.

Incon resources should be working to reduce the stigma of needing to wear. But excluding diapers as a viable treatment option in their lists, they're just adding to the stigma. I'm glad this site includes absorbent products in all it's treatment suggestions for all different kinds on incon.

 

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Hi Guys just to let you know I am a female. And I do feel for you males. I have had more in depth conversations with my Gp who is male than I have had with female Doctors. Some how for me they seem more caring. But I also wish I was a bug on the window sill to listen to what they say about me when I have left the room. I work as a R/N and I have heard discouraging comments said about patients once they leave. Bed wetting, day wetting, etc is such a taboo, that no one is willing to speek or deal with it. WHY ? ? When so many people are suffering. I don't understand.

I suppose, some make the implication that since a person with incontinence has 'lost control' of bladder and / or bowels, then it must be tied to some other loss of control we have chosen to exert over our lives. In other words, WE are responsible for our own condition, we have chosen it; we 'should' be able to control it.

 

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I agree. The very first time my wife became aware of my bedwetting, I soaked the bed big time and couldn't hide it. She asked in the morning what I thought it meant and when I said "I don't know it just happened, what do you think?" she said, "maybe you're regressing to a child like state from stress or something"....NO I'm not regressing. I didn't do this, it happened to me!

The stigma sucks. She gets it now. I'm wetting several nights a week and she can tell how unhappy I am about it and that I'm not doing it, it's happening. A lot of people don't get that though. People think relying on diapers is lazy or "giving up" but it's just practical management in my opinion.

Believe me, if I could stop this it wouldn't be happening!

 

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I'm surprised that your hearing comments in a hospital by people working there. Is it unprofessional or someone just lacking empathy? Or most likely its the end of a really long day and someone is stuck mopping up a mess.

That said - I take my hat off to the nurses (and doctors) for doing the job which can be all shades of nasty. And for having saved my ass more then once.

 

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All I can say is I feel really sorry for the teenagers we get through the Paediatric Surgical Clinic aged 13yrs and above. More so for the boys, they seem to be the most riped off in the treatment of enuresis and wetting problems. I try and match them with a gentle / easy going level headed male doctor if I can. The treatment is still poor. If their genitalial is considered sound including their kidneys, they are generally discharged to Physio for exercises or to the peditrician. This is because their problem is not a surgical fix. So their problem usually rolls into their adult life. So so sad.

 

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Sorry I'm kind of late to the mix but I can sympathize with not finding information as to why. I'm a 21 woman and have ALWAYS had issues with day time and night time wetting. At first it was "you'll grow out of it" then it was getting berated by my parents for being lazy. I finally switched doctors and talked to her about it when I was 17 and she gave me a prescription and sent me on my way. They never ran tests to try to figure out why it happened and that is so frustrating. I think I'm finally going to get referred to a urologist by yet another new GP who has been listening to my problems but I'm not hopeful that they will give me any new information. I'm sorry that things are so inconclusive for you as well. As for medical professionals being less than professional, I went to the ER last year for what I thought was a kidney infection and when I told them what medication I take and why the nurse charted it then left my door cracked. I'm not sure if she forgot or what but I got to see and hear her tell the other lady at the front about it and laugh. Needless to say after my IVerizon fluids were done I let them discharge me as fast as possible and I waited out the pain for a few days until my regular doctor could see me.

 

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I guess my comments were pretty sexist. Maybe its just that male doctors have been less empathetic to me as a guy. You know "Walk it off. Be a man." And I really worry when its a super short visit and here take this drug and nothing in the way of "If this doesn't work here is plan B." at least.

Information is really important to have and while there is a huge amount out there it takes a lot of sniffing around to find things that aren't just patient opinions or are off planet weird health type stuff.

 

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I can tell you I am a R/N Health Professional and her conduct was disgusting and you should of had her up for Code of Conduct. All I can say I hope she suffers some form of incontinence and that someone treats her the way she did to you. You should of put a complaint in about her. Nurses like that make me sick..