www.incontinentsupport.org

Hi from Washington State. I'm in my mid 30s, married with kids, and living a life full of joy and challenges
Thank you for creating this forum. I have read off and on over the past few years as I've experienced trouble with wetting the bed. Many discussions and answered questions have been helpful to me. But some recent developments in my life led me to create a profile to solicit some advice...and perhaps give some myself going forward?! I'd be grateful for any direction you'd be willing to offer.

The long and the short of it is that I saw my PCP regarding my recurrent bedwetting that has been going on and off for more than five years. He knew about it close to when it started, but I was too embarrassed to keep telling him about it again when it continued. I seem to be having wet nights about half the time, and then frequency that affects my sleep quality greatly the other half of the time. I've also begun to observe that I'm visiting the bathroom during the day like every hour and sometimes even shorter intervals. I remember times in my life where I could hold it 5 hours or more...but it feels like that's in the rear-view mirror. Maybe unrelated...who knows!? My primary referred me to some specialists back then and they all didn't seem very interested in my concerns and said it would pass. Embarrassment again kept me from going back. So a month or two ago he referred me to a urologist for more investigation/second opinion/treatment. My assumption is that it is urological related and not some other major health issue. My doc seems to think that based on my most recent labs, that I'm fine healthwise (other than peeing in the bed!)

So I have an appointment to see this new urologist here coming up soon and I'm just wondering if you'd give me some advice about what I should take with me, questions I would be wise to ask, what I should expect, etc. I'd like to make the most of the experience, but I don't want to overwhelm the guy or make him think I'm crazy if I come with tons of information/agenda/questions. (I know I might be over thinking this). I don't feel quite as embarrassed about the problem as I once did, so that helps. And I realize I could seek out another doctor yet if need be. But I live in an area that is rural, and so the local options are limited. My previous bad experience with a different urology guy leaves me feeling anxious, I don't want to end up with him again.

My current PCP suggested that I start keeping a bit of a journal and pointed me to this site for a template... https://www.nafc.org/diaries/ and I thought they were pretty good. My plan was to take a couple weeks worth of those with me to the appointment. And actually, keeping the journal led me to potentially recognize the daytime frequency I've been experiencing but just hadn't really appreciated - until this sheet kind of correlated it with night-time issues. I also wrote out details about my medical history, past procedures, etc. on a word document. I also wrote out a couple pages about my urine symptoms, observations, severity, history, possible environmental causes from my perspective, etc. I realize that the doc office will probably ask me about some of it, but I was worried I'd forget details, and so I wrote it out. I also have a series of questions on there about potential treatments, drugs I've been reading about, etc.

Do you think I'm nuts to take all this material with me? Will the doc think I'm high maintenance or not take me seriously? Should I hold on to it and kind of survey him before making a decision about trusting him with it?

What were your first appointments with urologists like? What happens? What should I expect him to do next after the appointment? Any red flags I should watch out for? What did you wish you had done, but didn't?

Thank you once again for your great site - and for any advice you can give me, especially if it puts me at ease

Questions for you:

> Has your PCP done a DRE (Digital Rectal Exam) to determine if your prostate is enlarged? If your labs have come back OK, and I assume you were tested for PSA level and that is within normal range (0 - 4 ng/ml), you may be experiencing BPH (Benign Prostatic Hyperplasia) which could account for your urinary problems. BPH is NOT prostate cancer but is a more easily treatable condition.

https://www.mayoclinic.org/diseases-con ... c-20370087

> Have you kept a record of the number of times you wake up needing to head to the bathroom? Frequent night-time trips to pee are called nocturia and this is important information for any competent Urologist to know. The journal your PCP recommended is a good idea.

> Did you wet the bed (primary enuresis) beyond the age of 5 or 6 as a kid? Some studies have shown that wetting the bed as a kid may make a person more likely to become a bed wetter as an adult. Here's an extract from one study done on that:

Childhood Bedwetting Predicts Adult Enuresis

GLASGOW—Bedwetting in childhood is a strong indicator of persisting enuresis in adulthood, researchers concluded.
That is the finding of an Internet-based survey to which 1,201 individuals aged 18 years or older responded. Daniella Marschall-Kehrel, MD, who is in private practice in Frankfurt, Germany, and colleagues placed respondents into three groups: nocturia (641 subjects), enuresis (217 subjects), or controls (343 subjects).

Seventy-four percent of enuresis sufferers reported having enuresis when starting school. Compared with controls, childhood enuresis was associated with a nearly 10-fold increased likelihood of enuresis in adulthood, according to findings presented at the International Continence Society annual meeting. Childhood enuresis also was associated with a nonsignificant 35% increased likelihood of current nocturia.

The researchers concluded that it is possible that the number of unreported cases of adult enuresis is higher than previously reported.

In their study abstract, the investigators stated: “Surprisingly high is the number of adults in the total study population suffering from enuresis. Typical is the reported restriction of fluid intake in the evening, which is a well-known coping strategy that is also adopted but to a less extent by people with nocturia.” Nearly one quarter of survey respondents with enuresis reported restricting fluid intake at night.

“These results call for the prompt and targeted treatment of enuresis, which might not only reduce the rate of adults with this condition but also the number of people with nocturia,” the authors stated.

I had my first DRE and PSA blood test about a year ago. I should have had that done years before my enlarged prostate became cancerous and needed to be surgically removed. I had also been a chronic bed wetter into my late teens. Between my boyhood history of enuresis and my prostate cancer surgery I am now totally incontinent and wearing diapers day and night. Because of a very high PSA count (24+) and a high Gleason Score (4+3) I am also now at a 35% risk of what is called "biochemical recurrence" of the cancer even though I no longer have a prostate gland. A common treatment for that condition is Androgen Suppression Therapy (aka Hormone Therapy) which is a less scary way of saying chemical or surgical castration. You do NOT want to have to make the kind of decision I may have to make in the near future because I delayed in being properly examined. (Hmmmm...have my nuts shrunk by chemicals or cut off - or die? Great choice - - not!)

Do NOT delay on this and check out the literature available through reliable sites before seeing the Urologist. That way you will know what to ask and will be able to determine whether he or she is competent to treat you. Here's a couple to start with. There are many more but try to avoid the sites that are really just click-bait for disguised ads.

http://www.cancernetwork.com/prostate-cancer

https://www.niddk.nih.gov/health-inform ... oblems-men

EDIT: I forgot to add this in response to whether your Urologist will be annoyed if you come prepared with lots of information and questions: Not if he or she is competent. On the day I had my RALP/LND surgery I was in a Family Waiting room with other family members who came to support me. It was a little awkward sitting there in just a hospital johnny but a nurse gave me a blanket to put over my lap so it was OK. When the surgeon came into the room before I was wheeled off to the operating room he asked me if I understood what he was going to do. Having done my research I told him exactly, step by step, what was going to happen, and I used the terms I had learned from various Urological sites. He looked at me, smiled, and said "You are ready to go! Let's get it done!"

Any competent Urologist - any competent doctor for that matter - appreciates a patient who is well informed. If not, go see someone else.

It sounds to me as if you are well prepared for your visit to the urologist. By all means do take and give to the urologist the summary of your medical history that you say you’ve prepared. Something written out in advance is better than trying to remember everything on the spot when you’re nervous. Insofar as the exam is concerned, I agree that the urologist will probably perform a digital rectal exam to see whether your prostate is enlarged. If s/he has the right equipment in the office, he may also ask you to pee in a special toilet that can measure the strength of your urine stream and then afterward do an ultra sound of your bladder to see whether you’re bladder is emptying itself completely. Your symptoms sound like an overactive bladder, something for which there are several kinds of drugs that may help. If you read this and other similar forums, you’ll find that these drugs don’t help everyone. However, they do help some people, and the people that they help don’t usually post on incontinence forums because they are not incontinent. Finally, the urologist may refer you for further testing at a hospital, but my guess is that s/he will likely want to try you on the drugs first.

Hi, thanks so much for replying. My PCP has not ever done a DRE on me. Maybe because I’m under 40 still? When I did see a urologist a few years ago when the bed wetting started, he did one. I remember him remarking that one side might be larger than the other, but that it wasn’t “enlarged”. At the time, I was embarrassed and a bit surprised that he did that exam...and like I said, I didn’t return.

I’m anticipating at this upcoming appointment, that will be part of the work up. I plan to let him know about those past comments...

I don’t recall having my pSA tested before, and that’s probably typical for a youngish male I’m guessing. Maybe it would be normal to expect this urologist to order that test too?



I have been keeping a diary for night time issues over the past couple weeks as my PCP said it might be a good idea to do. I’ll do a couple of 24hr logs though as well. Sounds like that is kind of standard information a urologist would want to know.



This is something I’ve heard and read as I’ve researched my current problems. I do not remember having issues with bed wetting...and I’m guessing that If i did, it was before 6 years old, and not very frequent. I haven’t mustered up the courage to talk with my mother about it. I do know that I have siblings who all had issues with bedwetting well into school years. And so I do share their genetic code. This is something I want to ask the urologist about...



Thanks for this, it is affirming. Gives me confidence.
I’ve had my fair share of docs who seem threatened by me or (if they are docs of family members) others bringing information/research to the table... Kind of like they roll their eyes and think, “here’s another one coming in again after having done ‘internet research’ and think they have self-diagnosed themselves...etc.”

It sounds like we might have some similarities though. I just want to be well informed, advocate for myself, and not just have this blind trust in whatever medical person. They’re human, they miss things, they can be led astray by wrong assumption or blind spots or whatever. I’m kind of a bit of a perfectionist by personality so I tend to dot all my Ts and cross all my Is wait...

My advice is to be embarrassed about telling your doctor about all the problems you are having with it. The more information the better to help diagnose the problem. Also, they may want to do some test that you will find very personal. The nurses and doctors have done it many times and you are not the first nor the last.

Thanks. Yep, I kind of have noticed a similar thread in some of the forums I've perused over the years. And I've also wondered the same thing. Does it seem like the drugs don't work well because the people who are predominately on forums online seeking solutions the ones for whom the drugs are not working? Are the ones for whom drugs are effective self-selecting out?

I am anxious to at least try something assuming that my problem is purely urological and not some other diabolical thing... I'll certainly report back here if I find that something helps my symptoms.



I was going to ask this..., thank you What order of things should I expect on this first visit? Will I likely walk away with a prescription? Aside from the physical exam in the office, will he likely order any other testing? Should I suggest or press for any specific tests myself? Paul (I think) mentioned above getting a PSA level - which I think I might ask about.

Another question, do you have an idea about how long a standard test/trial period is for sampling out a medication, before going back to see the doctor again? Is it a couple weeks, a couple months, etc.? How soon after this first visit should I expect a follow up?

Thanks again for your help!

Thanks batman, I appreciate the advice. I definitely feel less embarrassed about all of this than I did 7 years ago when I first started experiencing it. But still, I am sensitive to criticism or feeling like I'm being judged or written off. Oddly enough, I'm kind of worried in this that I'm otherwise normal physically and that these symptoms are being caused by psychological stuff: anxiety, ptsd, stress, etc...which feels like a possibility to me. WHen I was seen briefly before, the docs did very little testing/evaluating on me, and offered no drugs or other treatment -- they called my problem "nonorganic" which I guess means that there was no physical cause. That kind of made me feel like they had written off the problem as all between my ears. I found it embarrassing enough to go into the docs office in the first place -- but then to essentially be told that I'm just mentally broken felt like kind of an insult and was discouraging. I've done a TON of therapy since then, and feel better overall, more confident etc.

Thanks again...

wwboy

You should take a list of:

All current medication both prescription and over the counter ones.

Any medication you have tried in the past and did not help.

Any allergies to medication, and what happens.

Any surgeries or medical procedures.

Write down any questions you have for the doctor. There is a good chance you will not remember.

Remember the doctor is working for you. If you do not understand an answer to you questions ask him/her to explain it in simple terms. When you are told to disrobe for the exam ask them if you should remove your diaper (you are there for incontinence). They may or may not require your diaper to be removed. Do not be embarrassed, they do this every day. For them it is “just another day at the office.”

_________________
RetiredRN

Wwboy,
I know what it is like to be written off as just anxious. I was seen by the VA for years. I complained about numerous conditions that were seemingly unrelated. I got diagnosed with an anxiety disorder. But I kept at it. Eventually, I got really sick and was struggling to breathe. The VA told me “we can’t see you. Go somewhere else!”. Not once...not twice, but three times. I kept trying to get in with my VA doctor. I was told no. Due to lack of treatment, my illness progressed. I ended up in the ER getting medication and breathing treatments. I found a new doctor outside the VA. I described my myriad of symptoms. This doctor listened and didn’t write me off. She agreed something was amiss. I was sent to neurology where it all came together. After a huge battery of tests. I was diagnosed with a potentially life threatening neuropathy. It turned out to be incurable. But it was missed by doctors who wouldn’t listen. All my new doctors can do is treat the symptoms in hopes of making my life better. I do go to therapy to talk about health issues. It helps me process things. I’ve learned good skills that help me relax. I’ve made peace with my condition. It is progressive. But I do the best I can. So I guess what I’m trying to say is don’t give up. Be your own advocate. It may not be all in your head. Sometimes, you have to be adamant and look out for your own self interest and push back. I try to be diplomatic, but I will look out for me. After I got all my tests done and received a formal diagnosis, I went back to that VA doctor and gave him the whole 100 page file. Hopefully, after seeing he was wrong, he doesn’t repeat past transgressions. Take care of yourself.

Thank you for your feedback. Yours, as well as others' on here, have helped me feel convinced that it's not weird, or even a good idea to bring the information I have put together.

Interestingly enough, as I've been filling out a couple of 24/hr records of input/output, I have realized that my frequency during the day is even more frequent than I had estimated on my medical history sheet. So that is at the very least, interesting to me...

Do you have any thoughts on specific questions I ought to ask? I mostly have a couple regarding medication options...and also generally: "what do you think is happening to me, etc.?"




Luckily, my incontinence has primarily been at night. So i'm not having to wear pads or a diaper during the day. The only issues I'm having during the day is frequency and urgency - with some rare minor leakage.

Thanks for your encouragement though...just talking about it makes me feel embarrassed enough as it is!!