Introductions - New Members - Start Here!

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Hello All,
I've been watching and reading prostate posts for a few weeks now but just now introducing myself. I had robotic prostate removal on Nov. 2, 2021. I visit my urologist for the first time on my 3 month anniversary Wednesday. My readings of men in similar situations leads to me to believe that my incontinence symptoms are somewhat normal. And it gives me hope and some confidence that this will resolve eventually. But I'm still not back to normal, and fear I may never actually be completely 'normal' again. I have experienced what I feel are incremental improvements, but at a snail's pace. My pathology shows that I am cancer free, which is a blessing, and I'll see my latest PSA test results shortly before my upcoming appointment. I am also completely leak free at night, and stay dry while sitting. Any activity starts it up however. Gravity is a real pain! But it's a minute by minute, day by day situation that I'm continually dealing with. Usually I am managing okay, but sometimes, especially evenings, I almost feel like I'm regressing. And I won't even go into ED. That seems like a distant memory at the moment. Anyway, my symptoms seem to be normal for my recovery timing and overall situation. I'm told I'm still early in the process of recovery, and patience and proper exercising seems to be the order of the day. Thanks to all of you that have experienced or are experiencing a similar surgery and healing scenario. Appreciate knowing I'm not alone.

 

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@BRENDA I am in periods struggling with fecal incontinence. I am here because I also have urine issues (OAB and bedwetting issues). I have IBD (inflammatory bowel disease) and when I have flares, I am back to having incontinence issues due to frequent need and very little response time. I can go 20-30 times a day in my worst periods. When my medication is ok - i still go way more frequent than normal people (5-8 times daily) and even in good periods I have accidents - when the urge is hitting strong and I am not able to find or get to a toilet.

I am also in some support groups on facebook for IBD and bowel related issues, but my issues might be different from yours. For me it was a big and humiliating step to accept diapers in my bad periods, but it was the only option for me to leave the house. The products for fecal incontinence are different (bigger) - there are no special products for fecal - it is just that most research is directed towards urine - to find discrete products with sufficient protection. The diapers that works best with fecal incontinence - I find is the thinner tape style briefs. We don’t need the extreme absorbency, but the tape briefs are bulkier and not as discrete as the pull ups. I use pull ups frequently to give a decent protection and less bulky solution. I try to hide or camouflage my diapers as best I can - but I don’t think people in general are spotting my diapers - and if they do - they are ok with it. I have never had any bad comments due to wearing them. Much more embarrassing to have an accident unprotected. I have had my share of those, and they are horrible…

 

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Alan 75 Does any body make pull-up underwear for a 75 yr old man with a SMALL ass....every pair I buy is baggy in the BOTTOM...I hate that!!!

 

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does anyone here deal with fecal incontience? it all seems to be urine.

I'm new here, but I have both - lucky me! :/

 

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My name is Terry. I am having a radical prosectomy in two days. I found out that I have prostate cancer almost two months ago. My last PSA was 17.85.I know that is incredibly high and although my doctor says the cancer is contained in the capsule of the prostate I am still fearful of the doctor finding that it has spread. My doctor had told me after the biopsy that I have advanced rapidly growing prostate cancer. Just the word cancer scared me and adding to that rapidly growing and advanced.
I have been experiencing manic mood changes along with depression. I understand why my prostate has to be removed but to lose the ability to ejaculate, have probable ED issues and incontinence are making me feel like I'm losing a part of myself that Ive had since I was 13 yrs old. Im a 62 yr old gay male and I have more sex in the past ten years than I had throughout my entire life. Now this. I feel like I will be losing what has been a part of me for so long but also like I will be losing a part of I am as far as how I feel about myself. I'm scared of the surgery itself and the after effects and the recovery which I have been reading about and it all seems like a life changing events that have come from so far out of left field that I'm still in shock. I know the upside is that hopefully I will be cancer free. I have never had a catheter. My first and only surgeries were plates and screws from when I broke my ankle seven yrs ago and hip replacement surgery three yrs ago. This is different on so many levels. I don't want to scare myself but knowing what to probably expect is better than not knowing or understanding what will probably happen. I will be losing a part of me and I have no idea what it be like but I know my self-confidence, self-worth have already taken a hit. I'm about so many things. Here I am two days away from the surgery and the reality keeps smacking in the face but I still haven't come to terms with how different my life will be. Writing this is good for me because I haven't really expressed my total anxieties even to my therapist.Im scared on so many levels and I can't even express all of my fears and feelings to myself. It's like a part of my brain hasn't accepted any of this yet as my new reality. If someone out there can understand some of what I have described and can give me some advice I welcome it. I feel so incredibly alone and vulnerable right now and I don't know how to fix that or manage it all.

 

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Hello,
My name is Bob. I'm 65 and had a prostatectemy about 4 weeks ago. I just started reading other posts and felt as if they were telling my story. I knew inconstinece was a side affect of this surgery, but I didn't realize the extent. From the point my catheter was pulled, I felt I might have made the wrong decision (my wife believes even with the incontenent, I still made the correct call). Initially I was constantly dripping. I beleve the dripping now only occures when I'm walking around. One of my biggest problems is when I stand up. Anything in my bladder (or most of it) is released. I go through many pads each day. My bladder still empties at night. I usually wake up immediatly prior to it happening, or just after. I suspect I may also be dribbling some at night, especially if I move. I've been told by others improvement will take time, but when your in the middle of the situation it's difficult to imagine the future of not being wet. Thank you for your support, and helping me realize I'm not only.

 

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My prostatectomy was 4 years ago and I still leak a little. I will be seeing my urologist today to discuss a sling to hopefully take care of the leaks. Keep doing your kegel exercises and it will get better over time.

 

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Hello All. My name is Chris. I'm a 64 year old male. Until recently, I would consider myself to be active.

I'll be reviewing this site for support and hints/help. I may come back with some specific questions. I had TURP robotic surgery in August of 2023, and there have been many complications (one life threatening). To this day (January 24, 2024) I remain very incontinent. I am just now able to resume my various kegal exercises and I'll be resuming my PT appointments next week.

I would call myself a heavy leaker. I've been trying different brands of adult diapers. Does anyone have a suggestion as to the best brand that they have tried? I remain hopeful that I will eventually recover and not have to use diapers, or at least, not as much as I do now, but I'll admit some days my attitude is not as bright as others. Thanks in advance.

 

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Hello All.

I'll be reviewing this site for support and hints/help. I may come back with some specific questions. I had TURP robotic surgery in August of 2023, and there have been many complications (one life threatening). To this day (January 24, 2024) I remain very incontinent. I am just now able to resume my various kegal exercises and I'll be resuming my PT appointments next week.

I would call myself a heavy leaker. I've been trying different brands of adult diapers. Does anyone have a suggestion as to the best brand that they have tried? I remain hopeful that I will eventually recover and not have to use diapers, or at least, not as much as I do now, but I'll admit some days my attitude is not as bright as others. Thanks in advance.

Welcome clangley; i would recommend a brand called Tranquility - I’ve been using there overnight briefs for a while now - but just changed over to buying online through Northshore care - there GoSupreme Pull Ons would be good for out and about- but I would recommend a tabbed brief if you lay down a lot or sleep on your side.

Hope this helps,
Honeeecombs

 

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Thank you for the suggestion!

 

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Hello All.

I'll be reviewing this site for support and hints/help. I may come back with some specific questions. I had TURP robotic surgery in August of 2023, and there have been many complications (one life threatening). To this day (January 24, 2024) I remain very incontinent. I am just now able to resume my various kegal exercises and I'll be resuming my PT appointments next week.

I would call myself a heavy leaker. I've been trying different brands of adult diapers. Does anyone have a suggestion as to the best brand that they have tried? I remain hopeful that I will eventually recover and not have to use diapers, or at least, not as much as I do now, but I'll admit some days my attitude is not as bright as others. Thanks in advance.

Welcome clangley; i would recommend a brand called Tranquility - I’ve been using there overnight briefs for a while now - but just changed over to buying online through Northshore care - there GoSupreme Pull Ons would be good for out and about- but I would recommend a tabbed brief if you lay down a lot or sleep on your side.

Hope this helps,
Honeeecombs

Thanks!

 

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Dont laugh but I use Poise, and I am careful my uhuu is right in the middle of the pad. I dont leak much and cut the pad in half.

 

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You have a good point there, regardless of who you are or what fixtures you have. All my leaks/wet clothing came from positioning issues.

 

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@Toddboi Hey Terri Im wondering if you had your surgery.I feel you man, I really do. I found out last may my psa was 9.75 , did a second one and it was 10.5, did a biopsy in october, and it was like you high risk , so I opted for proststectomy fast and it was out by November. My psma scan, have you had one?) showed no spread, and still localized. After surgery however there was some epe and one pos margin. not great news but feeling grateful that I caught it when I did. My psa post surgeey two weeks was 0.34 , post surgey 7 weeks 0.04 which is undetectable and going friday for my 3 month fingers crossed. I have experienced everything you have and at 54, and being very secislly active before this, to peeing on myself, and ed, well it has been rough my friend, but ill take it over oc anyday and twice on sunday, still does not make things easy. Ive learned alot about this and happy to talk to you whenever, I chose to keep this private and have not told anyone even family. My choice. You are not alone brother, keep up your spirits. Cheers

 

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Hello. I just joined. I am in the early stages of prostate radiation for cancer. I did not find any threads on radiation versus surgery. So I will start one.

 

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Hi im post laparoscopic prostatectomy 11/15/23. So 3 months. Im hoping Im cured and monitoring psa but I had a high gleason score so being very watchful.
Im not sure to be honest if I made the right csll but knowing myself I wanted it out regardless. My leaking is pretty bad and secual functiin is zero for the moment. Surgeon keeps saying dont worry that things will get better. Frankly if I stay cancer free It is what it is but it is very hard to deal with. Radiation is prob better choice for most depending on all the factors of course. Good luck on this very interesting journey my friend.

 

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So this is my introduction here, I am sorry it took a little while. I wanted to have my Urodynamic Test and Cystoscopy before the introduction.

I will start with my story. I have ADHD and an arachnoid cyst on my brain from my childhood. At the age of 2, I woke up to a Dry diaper and was found to have a stricture. They did some type of intervention for this, which I honestly do not remember what it was. I then had retention at age 17 due to Appendectomy surgery, as well as multiple bad UTIs. My bladder control and fell of full bladder when down through the years, as well as bowels acting up as well.

I was finally able to go to a PCP on 11/13/23 after having a UTI. He suspected I have Neurogenic Bladder. I was also officially diagnosed with IBS. He sent me to a urologist, who decided to do tests.

On February 12 of this year, I had a Urodynamic and Cystoscopy. The results for the Urodynamic was Detrusor instability with urinary incontinence, equivocal voiding. The Cystoscopy showed everything normal except a tight bladder neck. I now need a Renal Ultrasound to make sure my management is going well.

I manage the Neurogenic Bladder with Diapers, Condom Catheter, and Intermittent Catheters. The IBS is managed with Suppository and Enemas of all types, being the IBS will cause a lock up of the bladder.

Sorry bout the long post. I was just wanting to introduce myself.

 

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So this is my introduction here, I am sorry it took a little while. I wanted to have my Urodynamic Test and Cystoscopy before the introduction.

I will start with my story. I have ADHD and an arachnoid cyst on my brain from my childhood. At the age of 2, I woke up to a Dry diaper and was found to have a stricture. They did some type of intervention for this, which I honestly do not remember what it was. I then had retention at age 17 due to Appendectomy surgery, as well as multiple bad UTIs. My bladder control and fell of full bladder when down through the years, as well as bowels acting up as well.

I was finally able to go to a PCP on 11/13/23 after having a UTI. He suspected I have Neurogenic Bladder. I was also officially diagnosed with IBS. He sent me to a urologist, who decided to do tests.

On February 12 of this year, I had a Urodynamic and Cystoscopy. The results for the Urodynamic was Detrusor instability with urinary incontinence, equivocal voiding. The Cystoscopy showed everything normal except a tight bladder neck. I now need a Renal Ultrasound to make sure my management is going well.

I manage the Neurogenic Bladder with Diapers, Condom Catheter, and Intermittent Catheters. The IBS is managed with Suppository and Enemas of all types, being the IBS will cause a lock up of the bladder.

Sorry bout the long post. I was just wanting to introduce myself.

No need to apologize Ronin, welcome to the NAFC. I suffer from urinary spasms and neurogenic bladder as well - my urologist explained there something wrong with my wiring from my bladder to my brain.

Some days I can hold for 45 minutes to an hour - other days I can only hold for 5-7 minutes; I wear diapers for it as well.

There is a good group of people here for all sorts of issues - I’ve been suffering for four years now.

Sincerely,
Honeeecombs

 

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Nelson: thank you.

Ronan: well detailed. You have a significant understanding of your multifactorial symptoms. Good luck.

 

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Nelson: thank you.

Ronan: well detailed. You have a significant understanding of your multifactorial symptoms. Good luck.

Thank you for that. I have been trying to do it on my own for 20+ years. It is great to finally get a diagnosis and prescriptions for catheters (condom and intermittent)