www.incontinentsupport.org

I agree. The support and insight I get here are beyond valuable. If my family and friends were forced to listen to all the feelings and complaints I vent here, they would soon find me tiresome. The stress of dealing with a bowel accident in public is not something they should be asked to understand; here, it is understood. Discussions about the latest disposables, about dealing with skin infections and urinary tract infections, and urinary and bowel surgeries would leave my family and friends exasperated. Here, these are common issues we all must deal with. Schoppy has made this possible, and the rest of you, my friends, I owe much. Thank you.

Thank you for the suggestion, Patrick, and I already have a referral, but I'm just not willing to go see a urologist yet.

I suppose that feeds into my sense of guilt as well. I know I'm not doing everything medically possible to "cure" this, even if I'm very doubtful that it can be cured. I have no desire to even try any medications for this since it seems that even if they have some positive effect, none will completely solve the problem and all of them appear to have significant side effects.

I thought I was dealing with my issues when, a few months ago, I first ordered diapers for night use (not for bedwetting, but to try to sleep through the urges and frequency that significantly contribute to my insomnia) and male guards for day use (for the post-micturation dribble that I finally acknowledged I was having). Then shortly after that I had my first loss-of-control event with accompanying quite painful bladder spasms. Thankfully I was at home and happened to have diapers on-hand (what timing!), but that wasn't what I expected to use them for. Then again, I also never expected to be laying in my bed in the early evening while my bladder repeatedly emptied itself involuntarily, my bladder and surrounding muscles kept having painful spasms, and my lower back was partially arched up off the bed due to the spasms. I only had a few repeats of those events and haven't had them for many weeks, thankfully, but I have had a steady increase in my pelvic pain level and a more rapid degradation of my control. I've now arrived at the point where I'm not sure when I'll feel confident again leaving the house with only a male guard in my underwear. I've tried a few pull-on products and they have not fit very well, some of them cause me pain to wear, and they don't work for a full-bladder release, so that has meant tape-on diapers.

I'm in my mid-30s, apparently otherwise healthy except for some chronic mental health and neurological issues, and I'm wearing g****m diapers nearly full-time. Yeah, I'm angry about it. And it feeds into my chronic depression and anxiety issues. It's humiliating and now every time I leave the house my self-consciousness is through the roof and I worry that others will see what I'm wearing underneath. That anxiety causes me to involuntarily clench and makes the pain worse. It's physically and mentally exhausting. I keep reminding myself that I'm doing what I need to do one step at a time but I also can't help but wonder how I ended up here and how I so quickly lost so much trust in one of my body's basic functions. I keep doubting that my loss-of-trust is justified only to be reminded rather quickly why it is indeed justified and why it's either strapping a giant absorbent pad to my crotch or spending much of my day parked in the bathroom. That still doesn't make it feel any better.

This post ended up a lot longer and with more, and stronger, emotion expressed than I planned. I suppose people here, of all people, understand these things. Maybe this weekend I'll get a little retail therapy by getting some slightly larger jeans since I've found that adding additional padding to my already protruding posterior isn't working so well with my existing jeans.

outofmemoryerror,

The frustration you experience with bladder spasms interrupting your sleep and your waking activities, your embarrassment, and anxiety are all too familiar. When I was similarly situated, my current urologist started experimenting with anticholinergics, all of which carried side effects that were worse than the incontinence. Coming to terms with incontinence, for me, meant accepting, even embracing, the sphincterotomy that ended years of pelvic pain, at the cost of never again having bladder control. I would do it again with no second thoughts. Ten years ago I was diagnosed with gastroparesis (a paralyzed GI system), which in its own way can be as threatening and painful as bladder incontinence. The advice to diaper up and get on with life is the tippy-top of a large pyramid made up of pain, embarrassment, humiliation, frustration with medical professionals who are incompetent at dealing with our issues, guilt, frustration discovering which protections work and which ones don't, and the frantic search for a handicapped friendly restroom in strange venues, to name just a few.

Good luck finding what works for you, as soon as possible.

outofmemoryerror,
It sounds like your incontinence and increased pelvic pain has been progressing. That is a serious situation that you should address ASAP. If it is degenerative, getting help from a urologist sooner rather than later might arrest the progression and perhaps reverse it a bit. Denial and doing nothing is not a solution and may leave you in worse condition than you are in now.

Outofmemoryerror,
I concur with Steve M. I would highly advise against ignoring your issues and just resorting to diapers. This can be dangerous. Yes, the meds have side effects, but they may not be the only solution to your problem. Yes the tests can be embarrassing, but they may help get to the bottom of what is going on. It may be a minor issue that’s easily corrected. You may not even need the meds. It could be something else entirely. I’m not trying to scare you. Incontinence is oftentimes a symptom of something else.

Don and Steve M., I feel your advice is good and very valid. My post did not give a more complete story, however, in the interest of the thread's topic and the post length. So I'll risk going off-topic to explain a little more.

I visited my doctor nearly 2 months ago and he had me do a blood test, urinalysis, pelvic CT scan, and ultrasound. The great news is that nothing particularly interesting showed on any of it. If anything, it showed that I'm quite healthy. He gave me a referral to see a urologist to investigate things further.

For over 15 years I've had numbness and sometimes a burning sensation in my upper right thigh and in the groin area. For nearly as long I've had occurrences of significant groin pain also on the right side, which I recently figured out that part of that is actually muscle spasms. Since my right-side inguinal hernia repair surgery 6 years ago I've had incidences of severe pain that felt similar to another hernia, even if not exactly like it. The pain was enough to nearly bring me to tears and I could feel it at times in my back. The best way I've found to deal with it is to simply lay down and relax. I've had increasing urinary frequency and urges over seemingly much of my adult life. It happened gradually enough to where I simply adapted over time. The worst effects were really on my sleep and that's not something I acknowledged until fairly recently. I first noticed what I now know to be post-micturation dribble a few years ago and it became more bothersome over the past year or so. I also started noticing an increasing frequency of issues with getting a urine stream started and the strength of the urine stream, especially when I had any pelvic pain.

Placing what's happening to me now in the context of looking back, I see it as more of an evolution of symptoms of something that has existed for a while. It is very likely neurological and probably due to something physically irritating certain nerves. The pelvic CT scan I had recently had noted "density along bilateral proximal inguinal canal" which may explain my oldest pelvic pain symptoms since a little research showed that a nerve passes through there that connects to those exact areas. The bladder and surrounding muscles might have had their nerves irritated by my more recent hernia and/or the repair for it. That area has simply never felt quite "right" since then. If this is neurological, of which I'm strongly convinced, then I feel a urologist isn't going to be able to do much except tell me what it's not. I'm sure a urologist will want to run their routine, and expensive, tests to aid in ruling things out. I fully expect to have to battle an insistence on trying medications which I have very good reasons to not want to try. All to get to what will amount to a "I don't know" as far as a cause. Still, I know I "have to" visit one at some point and I do plan to do so.

As mentioned before, I have chronic neurological and mental health conditions I deal with already. I'm not trying to ignore my urological issues right now. Instead, I'm trying to actually figure out what my body is doing both so I can describe it to doctors and so I can try to regain control while not making the pain worse. I'm also trying to deal with the impact on my mental health. I do hope that somehow all this stuff can go away, whether on its own or via medical intervention, but I also know I need to adapt to the situation that I'm dealing with now.

Outofmemoryerror,
I’ll venture slightly off topic as well. As far as neurological conditions, you’ll have to see a neurologist. They are going to ask you some questions and will ask you if you’ve seen urology. I would call urology tests unpleasant. I’ve done several. They were uncomfortable but did not hurt. I have an inguinal hernia repair as well and I can understand where you’re coming from. I had surgery in 2014 to fix it. Now, on topic. My incontinence started with bedwetting and what was thought to be overactive bladder. I first saw a urologist back in 2008 who conducted some routine exams and made a simple diagnosis of OAB and recommended anticholinergics. Like many others, they didn’t work. I let it be. I resorted to diapers too. It was just a nuisance. Then, in 2010, something started to happen. I started having a lot of diarrhea and occasional stool incontinence as I just couldn’t make it. I went to my primary and told him what was happening. He sent me to a gastroenterologist who ran his own tests. Diagnosed IBS. Again I thought it was odd. I became very curious. I asked for a referral to neurology and talked to them who did not find sufficient evidence of anything neurological. They ran no tests. Basically a history and physical. In 2016, my problems multiplied exponentially. I’m not sure what the trigger was. I took my concerns to my primary who talked to me for 30 mins and went over what I was experiencing. The evidence was astounding what was happening to my body. She immediately sent me back to neurology who after talking with me for 15 mins and describing all my symptoms diagnosed me with an autonomic neuropathy. It’s severe nerve damage to the involuntary functions of the body. It controls everything you don’t have to think about. I have heart and breathing problems, issues with digestion, inability to sweat, problems controlling heart rate and blood pressure, & complete incontinence just to name a few. There’s tons more. I was sent to the Mayo Clinic in 2017 for thorough evaluation which confirmed my diagnosis. Some neurology tests do hurt. I’ve had a lot of them. But they’re doable. Oh yea, my neurologist drew 20 vials of blood on my first visit. That wasn’t pleasant. Neurology tests can yield a wealth of information and combined with urology tests would probably lead you in the right direction. At least you’ll have a starting point. With my neuropathy, I usually add a new condition fairly often. It all started with bedwetting. I am by no means implying this is what you have, I am just trying to say it is worth investigating.

Don, I'm very sorry that you are having to deal with all that. I can't imagine the frustration, to say the least, of having to wait so long and after it got so much worse to get a proper diagnosis. Were your doctors ever able to attribute your autonomic neuropathy to something like an injury or family history, or does it appear idiopathic?

I do realize now that there might be more learned from at least some urological tests than I acknowledged at first. At least it might give more detail to what I'm experiencing. But I have to get ready for both the emotional cost and financial cost of continuing the journey I've started to figure out what is going on. I am trying to disabuse myself of any notion that a complete cure will be found since that really does seem incredibly unlikely given that I can trace parts of this so far back.

A good amount of my pessimism about the medical field comes from my experience with migraines. It was less than a decade ago when I realized that the sinus headaches I had been experiencing in increasing frequency since just before I was a teenager were actually migraines. I just thought, and so did my doctors, that I was just especially prone to sinus headaches and sinus infections. Figuring out that I was dealing with migraines allowed me to focus on how to try to mitigate their impact on my life and to pursue treatment of them with my doctors. Unfortunately, the migraines have only gotten worse over the years and have progressed to have a significant impact on my daily life. I have been prescribed a migraine abortive medication that helps roughly half the time and I adequately tolerate its many side effects. I also have recently started an anti-CGRP medication that has made a significant difference in the severity of my migraine symptoms and allowed me to have more relatively good days than before I started it.

Dealing with my migraines is a big reason why I'm trying to handle these urological symptoms mostly as just as more stuff to deal with and am in no huge rush to see medical specialists. Right now my main goal is to find a way to cope with this stuff and mitigate its impact on my daily life. I do not like wearing and dealing with diapers or other absorbent products and I am more than a little bit ashamed that I've resorted to them. I also don't know of any better solutions, which seems to put me in good company on these forums.

I feel guilty for wearing. The amount of waste induces anxiety. I think maybe I should buy a few pairs of reusable incontinence underwear but am afraid they will not be adequate. Or maybe cloth diapers. I don't know. I'm not ashamed or guilty about having issues, per se, rather the consequenses those issues have for the planet.

_________________
Linja-autojen ja rakkauden perässä voi juosta tai odottaa seuraavaa.

While it is good to be mindful of consequences, the amount of waste created by using diapers is actually not as bad as you might think. Recent studies have showed that plastics tend to disintegrate much faster than previously projected when exposed to sunlight. Further, most companies can make fairly durable plastics that are impermeable but also degrade quickly. The shelf life of a diaper is quite short, and I imagine it'll get even greener.

That said, cloth diapers do require washing and drying. You can save on energy costs by drying them in your shower when it isn't in use.