Incontinence and Interstitial Cystitis

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Hello, i'm a 45 year old man. I have long time bladder issues that go back till my childhood. First i always had bedwetting issues. Up till the age my early 20th i wetted my bed 1 to 3 times a month. Between the age of 20 to 30 it got better with only 3 or 4 accidents a year. In my early 30th bedwetting got worse again, and up till now i almost every night wet myself.

Second issue i had was daytime incontinence. As a child i often felt sudden urge to pee that came along with heavy cramps and pain. Only on brief occasions i really couldn't hold it and wetted myself but the pain was dreadful. This pain and urge also increased in the period when i was in my twenties but it hit me back hard when i was in my early thirties. I had to seek professional help and was diagnosed with overactive bladder, urinary retention and, since a year Interstitial Cystitis. After reading about IC things fall in to place for me. Because as i child i already had all the symptoms of IC. Things got worse over the years, because of the bladder infections that often occurred but seldom recognized, up till my situation now, were my bladder has no function anymore.

I have to live with constant pain which not only affects my bladder, but also my prostate, pelvic muscle, bowel and testicles. No need to say that my condition has a big impact on my life now and in the past.
Although incontinence is not typical for IC patients i would like to know if there are some here with the same condition.

 

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Hello,
My bladder also does not work although it is possibly for reasons other than yours. I had radiation in the prostate in 2002 for a small tumor and the aftermath

appeared to me 15 years later. Maybe that's why maybe because of studies done in the area, cystocopies etc that ruined my bladder. Who knows? Now studies in that area are negative but I have lickeo 24 hours a day although I also have a urinary catheter in the penis. So apart from the lickeo the collection bag is also filled. It's very uncomfortable for me and I don't know what to do and I still can't find the urinary underwear that suits me. How are you solving that part? Greetings.
Sammy

 

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I have incontinence but I don't think I have had Interstitial Cystitis

 

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I have interstitial cystitis and do deal with some incontinence. I make the bathroom nearly 100% of the time but leak like crazy after a bathroom stop. I’m peeing 20-40+ Times a day and leaking for 10-20 minutes each time, so it adds up to a fair bit of incontinence. My pain is usually fleeting, so it doesn’t usually last long. I have been using a Foley catheter for the last 5 years and live nearly 24/7 with a foley in.

 

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I have the problem of leaks too. The 24 hours of the day. I also have a Foley catheter and before there was only urine out there but now the continuous leak was added .. I will consult with the urologist next week ... he will surely tell me the usual thing that the bladder is completely destroyed. Is there any solution for that? There is the option of a urostomy but my oncologist is not convinced. Any comments on this operation?

 

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I have the problem of leaks too. The 24 hours of the day. I also have a Foley catheter and before there was only urine out there but now the continuous leak was added .. I will consult with the urologist next week ... he will surely tell me the usual thing that the bladder is completely destroyed. Is there any solution for that? There is the option of a urostomy but my oncologist is not convinced. Any comments on this operation?

I have had any possible treatment, from medication, physiotherapy to botox and neuromodulation but unfortunatly without any success. I am out of options beside an urostomy. It's quit a step to take but i think to urge my urologist to make this step

 

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Eden98, so sorry not much helps you, I also have tried many things that you mentioned.What is the urostomy, and did you try the Interstim. Its like a pacemaker in your Hip area and you control it with a hand held little ipod or machine that controls the amount of stimulates that you need.Keep trying there might be something out there yet for us.

 

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@Eden98 I get some pain when I don't go right away, but nothing like you're dealing with. Have you tried diapers or catheters so you don't have to try to hold it?

 

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@colin13 yes i have tried the interstim device. It was implanted 2018. Within the test period it was clear it didn't work out for me, so after 6 weeks it was removed again.Unfortunatly i'm out of options now. All that can de done now is pain management, and even the first medication for that didn't bring me any relief. So i'm pretty much depressed now.

 

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@Squander i catheterize several times a day, but still i have multiple bladder cramps with leakage during the day. Last weeks were so bad that i had to catheterize 8 to 12 times a day to bare the pain. My urologist inserted a foley catheter last wednsday, and this works out fine for me. Unfortunatly, she is not very keen for this option and only does this by exception, because the risk of infections is very high. From my point of view it can't go any worse because i already have constant infections, and with a foley catheter at least i have no cramps.

 

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Eden98 Sorry the interstim didn't work. It will be my last option. Since I am female it might be different. I had some Blotox done 2 weeks ago and it has helped quite a bit. Please don't give up, try a different Dr, that's we I did and she helped me. The only bas thing is she is a little over two hours away. But she has given me some hope, She is a urognocolgist.Please take care and don't give up. I will pray that you find relief.

 

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Are the Botox shots in the bladder painful?
And if so can they use a numbing agent 1st?
Just curious

 

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@jrpoorman they sting a bit, but I didn't find them painful. I found the worst part is getting the injection instrument past the external sphincter. Phil

 

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@colin13 thank you for your kind words. I surely won't let this condition get me down, but i would do anything for some relief.
Two weeks it's very short period to know if botox is helpfull for you or not. It's a good sign it helped you already. When it was your first botox treatment it can take a while to find the right dose. I wish you well, and hope you don't need the interstim treatment.

 

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@jrpoorman i agree with Physlink, the shots are not very painfull. For me the pain started as the botox did what it does: paralyzing the bladder. I couldn't urinate anymore but the pain cramps remaind. I had to catheterize several times a day to ease the pain.

 

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@Eden98 I also had to self catheterise several times a day, but for me the painful spasms are less frequent with the Botox and I leak less than before.

 

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Thanks for the insight guys. I was thinking about the injections and if they would work for me so I could get rid of one of my prescriptions. May just give it a go. I like using a catheter instead of a full diaper. Just works well for me I guess. Uti has only happened a couple times and I got on an antibiotic quickly and took care of it.
Thanks again all.
Jim