www.incontinentsupport.org

I started experiencing urgency and frequency issues and occasional leaking about two years ago after my second bout with kidney stones. Two urologists later, I still have no definitive answers. First it was the stones, then OAB, now it's an enlarged prostate.

I'm sick of constantly feeling like I have to pee. I'm sick of the painful urges. I'm sick of the completely random leaking. I'm sick of the drug side-effects, feeling like crap, going to the bathroom every 60-90 minutes, and anxiety about being more than a minute from a bathroom about an hour after I last went.

I'm self-employed and about once a month drive 5 hours each way to see one of my clients. After wetting myself several times because I couldn't get to a restroom in time, I gave up on trying to drive anywhere but local errands without protection, so I'm not completely un-used to wearing a diaper. The idea of wearing full time bothers me. It feels like giving up. It's not like I leak every day. Or even once a week. But the randomness I experience means I've wet myself many times. Usually at home, since that's where I work most of the time, which is at least private. But more than a few times while out and about: shopping, on the train to see a client, walking home from dinner with friends. On the plus side, things are mostly under control while I sleep. I've only had 4 night-time accidents since problems began, and each of them immediately following a cytoscopy or ESWL where my urinary tract was completely mad at the world.

I'm not sure why I'm writing this. Maybe it's just a rant to someone else who can relate. Maybe I want to know I'm not crazy. I've been lurking here for almost a year and I appreciate what you all have had to share more than you can know. In the grand scheme of things my problems are not that bad. Aside from this, my health is good. But it's hard to keep that perspective after pissing yourself without warning in front of friends and acquaintances.

Welcome.

The onset of incontinence can be a blow. Add to that the denial which leads, inevitably, to multiple accidents. The huge amount of shelf space the big box stores devote to diapers intended for adults should kill, murder, even, the stigma which so hinders us. There are tens of millions of us in the USA alone. Diapers enable us to get on with living. Find a competent urologist; while you're looking, wear the protection that works for you. Good luck and keep us informed.

Greetings, Mike. I can relate to the irritation and exasperation you express in your post. You write pithily about your frustrations with your symptoms, and about your frustrations with your options for managing those symptoms. Since you have been "lurking here for almost a year," you know that most of us have had similar feelings. Maybe, at some point, there will be a definitive diagnosis for you, along with an effective treatment. In the meantime, we are all muddling our way along the same pilgrims' path. It need not be grim, and can even be humorous and joyful.

There is little peace or joy in feelings of "anxiety about being more than a minute from a bathroom." Personally, I know exactly what you mean about that kind of anxiety. May I propose a small shift in perspective? Instead of planning your needs only around expected leakage, you might plan around what you need for your peace-of-mind. If wearing a pullup or even a fitted brief whenever you go out would give you a little more interior calm, then that is a very good reason to wear one. You will worry less. You will be less distracted. You will be more joyful.

Think of it this way. You have a free choice to make. You can accept the anxiety caused by incontinence, or you can accept the awkward feelings associated with wearing a diaper. The anxiety caused by incontinence, unfortunately, is natural and rational. But most of us find that, over time, we feel better than we once did about wearing diapers. As Patrick notes, it is very common for people to wear them. With a little humility, we can join the ranks of those who do, and feel ok about it.

Noe

It's getting better as I ride the train of wondering when I'm gonna get care, when I'm not gonna get care, what the actual problem is or isn't, figuring out protection and not being totally pissed at myself for this kind of stuff. But its becoming more routine as I get used to it. I switched to wearing heavier protection a couple months ago through suggestions on this forum (as the guards and underwear I used hardly cut it, and I didn't enjoy the fit of pull ups well.) I specifically hated how I had to go once an hour or more frequently and haven't found any successful ways to mitigate this frequency. Its absolutely frustrating dealing with it all, but it doesn't have to be.

Honestly, wearing the fitted briefs or diapers has been incredibly helpful for fighting random leaks. Its helped in situations where I could not possibly go to a bathroom due to a meeting or an exam. Its helped while sparring, and I'm getting to be physically active again through the help of protection, rather than not doing the things I enjoy because of my need for it. The more I'm working out and doing activities again, the more I'm feeling better about it really.

Its all in realizing that its actually helpful rather than harmful to wear the protection you need. Protection helps you take back control where control was lost, rather than giving up control or giving up hope that it won't be an issue. It helps not be too anxious about an accident in public because you have what you need to make sure you don't have an accident.
I guess I'm coming around to the idea too. I have my bad days and ranty days as well, but overall as someone with similar issues and experiences, the protection has really helped gain a sense of control back to my life and loosen the chain between me and the bathroom. I wish you good luck, and welcome.

Sorry for your frustrations, feel free to vent them here. We've all been there or ARE THERE.

_________________
When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

Hi Mike. Welcome to the group

It takes time to come to terms with having to wear diapers full time, but once you accept you have to wear it does get easier. Partick is right you should speak to a new urologist since the meds you are currently on are causing you side effects.

For me when I was first diagnosed I decided to skip the meds due to the possiable side effects and the fact I would stil have to wear as the meds shouldn't stop my accidents 100%. So if I needed to wear any ways why take the meds.

I can say after dealing with my OAB for just over a year and since switching to full tapped diapers it does get easier to deal with. Remember you are not alone in dealing with IC issues there are millions of us that are back in diapers.

This is a great site for information and the members here are great for support and important advice and we are all here to help each other deal with IC ISSUES big or small.

Once you find the right premium protection that works best for you and you learn to trust your diaper to do its job random peeing in front of people will become no issue as you will no longer react to the accident or worry about leaks.

Hope you find a new urologist and he can help you with your IC ISSUE.

Hi Mike, and welcome!

You will fit right in here as most of us have experienced exactly what you are going through and understand the anxiety and frustration.

As the others have said, it does get better - much better. It takes time to accept the "new normal" and to experiment to find the right combination of protection, whether diapers or other, that works best for you personally. This will not occur overnight. Eventually, managing your incontinence will become just another daily routine and you will get on with the more important aspects of living your life.

--John

Hi mike and Welcome,
I cant speak for everyone but for me finding a great urologist has been the hardest. I have two now and they are great. Far as diapers I had no choice at the time but to wear them. Now I have a choice, just depends on what I'm doing. Frustration makes thing worse because you cant think to make good choices. You will learn how much have I drank, how long have I had it on and is it time to change yet. Back pack is were I carry all my protection and it goes with me every place I go. I always carry enough for two days incase I land in a hospital. We are all here to help and the primer is a great place to start. It will get easier !!! Mike

New member here. I have a long history of multiple incidences of kidney stones that started in 1997 (age 24). Each time, I passed several large stones during urination. Since the ER had provided me a strainer basket, I was able to catch them and have them tested by the urologist. After each occurrence, I went through the battery of urological tests, and the answer was the same: everything is normal. I will admit that I probably wasn't drinking enough water, so I have to make a continuous effort to stay hydrated. Furthermore, I eliminated caffeine and soft drinks from my beverage choices.

The last bout with kidney stones occurred during a camping trip in 2011 (age 38). I was sleeping in the tent when it started, so I got up and went to the restroom. I managed to pass the stones after several excruciating hours of nausea and severe back pain. I cut the trip short and returned home the following morning. I ended up with a UTI, plus the doctor though that I had an enlarged prostate, so I was put on Flomax and antibiotics. However, I couldn't tolerate the Flomax (dry mouth--already a problem for me at night due to chronic sinus congestion, dehydration, and headaches). Plus, I had no problem urinating when needed. Rather, I had the opposite problem: not making the restroom in time.

The incontinence started after that last bout of kidney stones. Leakage, frequency (sometimes every 30 minutes), urges, and very little warning before it was time to visit the restroom. After researching this issue for over five years, I was unable to find anything on the subject. But, here is my theory:
*Kidney stones are almost always made of calcium, so they are as hard as rocks.
*Kidney stones often have very sharp points and edges.
*As the kidney stones pass through the urethra and the urinary sphincter, scarring, scraping, and cutting occurs (which will result in bleeding and possible
UTIs)
*Kidney stones can become stuck in the sphincter or the urethra. Once there is enough hydraulic pressure (full bladder) behind the stuck kidney stone, the
pressure will force it out. (I concluded that this happened to me in 2011).
*When this happens multiple times, permanent damage to the sphincter and/or the urethra can result. The sphincter is weakened, and cannot hold back
as much urine in the bladder without leaking. Furthermore, nerve damage may occur, making it more difficult for the brain to receive a signal when it is
time to empty the bladder. Sometimes, that signal comes too late, as the sphincter is no longer able to hold back a full bladder.
*When someone is susceptible to kidney stone formation (I am), the need to stay fully hydrated at all times means that a lot of urine is being produced in a
very short period of time. Given that the useful capacity of the bladder is effectively reduced by a weak or failed sphincter that cannot hold a bladder full of
urine, the result is incontinence, often an urge flood.

I haven't given up on using the restroom, as I will use it whenever one is available in order to reduce the number of diapers I go through each day (saving on money and laundry). I wear pads or diapers during the day as a backup in case I can't make the restroom in time. My urge incontinence occurrences are usually floods. The level of protection depends on where I am (as it relates to restroom availability) and what I'm doing. I always wear diapers (disposable) when traveling or when attending events where restroom lines can delay my ability to get to the restroom in time. I also wear diapers (cloth) at night since I typically don't wake up to go to the restroom until it is almost too late. I won't go into too many details about my diaper and pad choices here, given that there are other threads in the forum dealing with diapers.

This site was one of the first I found in summer 2011 when I was researching options for incontinence management. Over the past five years, I have found this site to be the most useful source for information. After wearing diapers for five years, I have built up the confidence to not feel embarrassed or ashamed about it any more. It was extremely awkward at first and I felt extremely self-conscious, but now I often forget about the diaper until I need to plan to change. Diapers can be inconvenient, especially when it is necessary to change away from home, but I would rather lead an active life in diapers rather than be stuck at home, primarily in the bathroom.

Welcome to both new Mikes. It's good to hear from you.

Mike in SF,

You've received a lot of excellent advice. The two worst things about incontinence are visible accidents that occur in public and worrying about the possibility of such accidents. Both things are really bothersome, but the worrying can turn you into a recluse or a shut-in if you let. As most of us here have learned, wearing a good diaper can provide wonderful peace of mind. When you're wearing a diaper, you don't have perpetually to keep track of the location of the nearest bathroom and worry about whether you can make it there if an urge strikes. You can attend a movie or sporting event without having to interrupt your enjoyment of the show to race to the bathroom. In short, you can stop letting your bladder manage your life and get on with doing whatever you need or want to do. Once you truly get your head and your emotions around the idea that diapers are part of the solution and not part of the problem, you can lead an essentially normal life; and incontinence becomes not much more than a minor nuisance that you can manage effectively.