DO you find your symptoms get worse or better over time?

[Archives1]

Hi, I experience urinary dripping 'every 5 minutes of every day' (if not more frequent) since early January. "Occasionally" it can subside for 3-6 hours but then goes back to dripping every 5 minutes. Curious - I know we all have different variations of urinary incontinence - but do you find that your symptoms:

A - Physically Get Better over time - with proper treatment (e.g. meds, device, diet, kegels, etc.)
B - Physically Stay the same but learn to cope (e.g. Pads, Pull Ups, learning to accept emotionally)
C - Physically Get worse (e.g. Symptoms get worse and coping get's harder).

Please feel free to elaborate. I'm having such a difficult time coping on all levels (physically and emotionally) and love hearing from the group. As I'm wondering what to expect long term...

 

[Archives1]

Have you been through a surgery or checked the possible cause of the problem?

 

[Archives1]

That depends on what is causing the problem and on the individual circumstances. In general, it does get better over time and most people do learn ways of coping which makes life easier. Many different ways of treatment depending on individual circumstances and the medical team. If one way doesn’t work, keep searching for a different way. My physical therapist who specializes in pelvic floor taught me how to train my bladder to hold longer and to manage fluid intake and types of fluids and exercises to strengthen pelvic floor. I was better gradually after surgery, then worse after later radiation, then better gradually again. And finally had sling surgery to get 99% dry. All that process took about 3 years. But more or less normal after all that.

 

[Archives1]

Mike
A look around the forum will give you a good idea of people’s experiences, we are all different and I don’t think you’ll find a direct answer to what you can expect, that’s what I find.

My own experience was I had a constant improvement to completely dry in about a year, then I started leaking again, just a bit but enough to drive me nuts. I am working hard to get back to where I was and once again it’s slow but progressing. Kegels and expectations have helped and I believe that I’ll get back to no leaking eventually. Not sure why I started leaking again, but reading the forum posts I am blessed as what I am experiencing is minor compared to what some folk are experiencing.

 

[Archives1]

It varies; sometimes I can have less symptoms and hold for longer periods of times - other times I feel like I have little to barely little control and have to self isolate or wear protection.

Tried medication, should try supplements and doing kegals but I figure if this is going to be my life- why bother.

Sincerely,
Honeeecombs

 

[Archives1]

With life long bed wetting, OAB and now urge incontinence, symptoms can vary in my experience. Some days can be far worse than others but in the long run, I probably fall under group B as my symptoms don’t really go away. I’ve just learned to cope. Having protection I can trust makes this not such a big deal. Getting checked out by the doc kind of put my mind at ease with regard to what to expect and how I am going forward managing my symptoms.

If I’m staying busy and keeping my mind off the fact I’m wearing protection, I go about my day like anyone else. Sometimes I make it to the bathroom and sometimes I don’t. For the most part, I’m like anyone else only sometimes I go to the bathroom to change vs. use a toilet. Days that aren’t as busy and I have time to ponder this condition, I can get down like anyone else… or at a bare minimum get tired of having to change all the time.

I’ve got a supportive wife who put some perspective on the matter recently. She said in reality, this isn’t so bad. I could be dealing with cancer or worse. This is more of a minor malfunction that just requires a slight change to my routine. I count myself lucky that leaks are my worst health issue.

 

[Archives1]

My experience is probably different because my problems started with a head injury, and damage done while catheterized- my urologist diagnosed oab and said it was permanent and would only get worse. However, it actually started to improve and when I told him this, he said that can happen- and that it may hold steady for as long as a decade. Unfortunately, that hasn't been the case- I haven't had a dry day in probably 8 years, and by that I mean that I have at least one episode of flooding per day. In the past year, I've noticed that there are some days in which I have 5 or more accidents and those used to be not more than once a month. Now they are more like every 2-3 weeks. Keep in mind that my case is not typical, and probably won't be your experience. Kegels didn't make any difference whatsoever, and I read (here, I think) that some people aren't helped by doing them, so I stopped. I have perfect control much of the time- sometimes not having to void for as many as 7 or 8 hours, but this is preceded and/or followed by unannounced accidents. This is typical of the other symptoms of my brain injury- vision problems, balance problems, memory issues, headaches that are often severe- and they all happen seemingly when they want to, and other days are not as bad, and sometimes almost unnoticeable. As for coping with, or accepting the problem, I had to remind myself that of all the problems I could have (especially from the head injury) this is far from the worst. I did, in fact, come to accept it. You will too.

 

[Archives1]

Somewhere between A and B. Because of Botox, I say A. But without Botox, I would be a B.

Good question.

As my lumbar spine continues to deteriorate and my spinal stenosis worsens, there’s a chance more of the nerves to my bladder will be cut off, and my symptoms could get worse, but so far that hasn’t happened, knock on wood.

 

[Archives1]

Mine has slowly worsened. I kept telling my urologist and finally had to be insistent on it. Medication help for some time thin started to fade. An additional med helped for a very short time and then I had an interstim test. That showed some improvement. Doc says OAB. My symptoms are light compared to most and guess I am early in this. I have had problems more severe with long road trips. But I haven't had one of those for a long time. In the past I would just not drink anything on the road trip until I reached the end of the day.

 

[Archives1]

@rmconversion It’s insane how many of us just accept the ineptitude of our Urologist and of urology in general. They just use generic words that tell us that we have certain symptoms, like “overactive bladder” - no sh*t, doc, WE ALREADY KNOW THAT! But what’s the *diagnosis*? What’s causing that OAB?! What’s the ***real*** reason for the affliction, and where the h*ll are the CURES???????? Where are the medications and procedures that actually work, forever?!

I would so much rather take a pill every day than go through the ordeal of Botox injections every three months! I don’t understand why this field of medicine is so backward, as if it’s 1850, and considered by everybody in the medical community as inconsequential. Voiding the body of toxins is *far* from inconsequential! Rather, it’s incredibly serious and a crucial part of living to every animal!

As most of you know, I’ve survived more than my fair share of physical and emotional trauma, but Neurogenic Bladder, particularly Nocturia, is one of the worst, most challenging things I’ve ever had to survive, and that’s really saying something! If I was really wealthy, friends, I would donate a ton of money just to bladder research to help all of you and those that follow, because it seems like there is next to zero bladder research actually going on.

I would love to see the NAFC advocate for more funding for this kind of research.

This is also how I feel about pain research; they keep taking away all the pain medications, but they’re not replacing them with anything because they’re not doing any research into better pain medication nor pain management. They also don’t research the number one cause of chronic pain, which - both globally and nationally - is Osteoarthritis and Degenerative Disc Disease in the lumbar pain. Pain is another thing that doctors consider inconsequential because most of them have hearts made of ice. You can find a good one here and there, though. But most of them could care less about how you feel; they’re just in it for the money. The less time they have to spend with you, the better, as far as they’re concerned.

Anyway, I just wanted to say I feel really sorry for those of you who don’t have a solid diagnosis nor a solid solution. My symptoms would be much harder to manage and to understand if I did not have a firm diagnosis and a significantly helpful treatment solution (Botox and pull-ups).

 

[Archives1]

For me it's clearly the "B" - combined urge and dribble IC since about a year. With a quick increase in the first 4 weeks, since then more or less constant - not getting worse, seldom having some better days. I found the correct protection for my IC, and got comfortable with wearing and using.I accepted my condition mentally, acknowledging that it's much less worse than I thought at the beginning. IC is nothing which prevents me from living and enjoying my active and social life!
I also have a supportive and accepting wife who doesn't make a big deal out of it and has no problem that I wear a slightly different kind of underwear. We simply integrated the (very few) changes in our daily routines!

 

[Archives1]

For me it’s seams to be better over time. I had many different doctors meds and pt. Sometimes it’s ok not needing as many diapers or sometimes it’s get bad. Have tried a clamp devices never liked them and still needed to wear something like pads or a pull ups. I had incontinence from a early age just started as bad wetting and has gotten worse over my life. I have come to accept it but never stop trying different doctors or medical advice. Hopefully one day I won’t need diapers or pull-ups to get though the day but accept it.

 

[Archives1]

I'm about 2 months out from RP and can say that the dripping is less in the morning then gets progressively worse through the day. By evening it's sometimes as though I have no control at all. I'm training myself to use Kegels just prior to getting up which sometimes gives me a bit of time to make it to the bathroom but still soaking about 5 pads/day - mostly in the afternoon/evening. Pretty dry at night but then again, there is no gravity pulling down on the sphincter. Hopefully things will get better but it sure can be frustrating. Certainly beats PCa though. Good luck, and as the Shakira song goes: "Try Everything!"

 

[Archives1]

for my area of the country it seems my doctor may be ok with life threatening conditions. With the ones that aren't they seem to ignore them if you are self pay on your insurance. Can't blame them a lot for it I guess as they don't work for free. If insurance says you aren't going to get paid the group they work for is going to steer away from any treatments and training. Things really very a lot in healthcare treatment from state to state. I just started Medicare a year ago and there was a change in my doctor wanting to do tests and procedures.

 

[Archives1]

@rmconversion Such a shame.

 

[Archives1]

In my experience coping/adjusting gets much easier with time but my overall incontinence stays pretty much the same.

 

[Archives1]

@CES97 That’s how I’d sum my lumbar spine pain, too, though days really stand out after certain activities.