Main Problems for men with Urinary Incontinence
Posted , 6 users are following.
Hi all,
I was told by my doctor after I had some treatment last year that I had a greater chance of developing prostate cancer in later life. I have just been doing a little research into this condition and what it can cause. Incontinence seems to be high up on the list.
I just wanted to ask any men out there who have or have had incontinence issues, what were the biggest difficulties you have faced? and how has incontinence affected your lives?
I realise that there are many types of incontinence. I would appreciate hearing about any experiences or challenges men have had out there.
Thanks.
0 likes, 21 replies
zdzislaw gary84626
Posted
Don't let doctors scare you.
I have had prostatr cancer for 17 years now, the first 10 years of watchful waiting. Developped incontinence after TURP (earlier on I had retention...). There are many grades of incontinrnce, the worst is probably constant leaking. I don't have that. I wear pads during the day and so called external catheters at night. But, mind you, I am 78 this year and I had no such problems 2 years ago. Think about Kegel exercices, good diet, sports, good chances you will be ok. Zdz
gary84626 zdzislaw
Posted
Thank you very much for your response.
I tend be in favor of avoiding invasive/surgical procedures when at all possible. You mentioned some great alternatives such as Kegels. How successful were these for you? How long did you train for in these exercises and did you see a physical therapist?
And in terms of the incontinence, what was the biggest bug-bearer or most challenging part of having that for you?
Many Thanks.
monico09005 gary84626
Posted
gary84626 monico09005
Posted
Thank you very much for your response. I really appreciate your advice.
As I mentioned in a previous reply to another post contributor, I like to try conservative approaches when at all possible. Thank you for sharing the advice on supplements and pads. In general, what do you find as the biggest challenge when using pads, in terms of your lifestyle and quality of life. Or do you find that you can still do everything that you would like?
I was wondering if you tried exercises, like Kegels? or if you had any physical therapy?
Many Thanks.
glenn77 gary84626
Posted
I became incontinent at a very high level after GreenLight laser surgery for median lobe BPH, done in March 2016. That same doctor did a second procedure two months later (Gyrus TURP) to clean up a lot of debris left by the GL. I did some months of PT (Kegel exercises, etc.) that didn't help the incontinence. I went to another urologist who discovered that I had complex strictures through the external sphincter, caused by the first doctor, but never divulged to me.. There was no possibility that I would regain natural continence. I would go through 6 to 10 heavy duty Depend pull-up per day, and hated it because I could put on a new one, and 30 minutes later have this wet thick mass between my legs. After some months of this, I resorted to external condom catheters and a leg bag. These were better for me than the Depend pull-up, but not the way I wanted to live. After lots of exploration, I found that the Hollister leg bag with a soft silicone tube, mated with Conveen Optima condom catheters worked the best. I used a skin prep on the skin of the penis to make removal of the condom easier. I had tried a Conveen condom that had an adhesive that included Aloe. They were terrible as the adhesive would not release. Some nights, I would spend 45 minutes working to remove the dang condom without tearing the skin.
I pursued having an AUS implant, but several attempts were aborted because attempts to resolve the strictures didn't work. (The standard protocol is to have a dilation or urethrotomy, and then wait 90 days to see if the urethra is patent (open)). Finally, my new urologist and his fellow decided on a plan of doing a urethrotomy, have a large (Fr 22) Foley in for a week, and at the end of 6 weeks post urethrotomy have surgery already scheduled. That worked as I was "wide open after 6 weeks. I had the AUS implant on November 15 of last year, the device was activated the first week of January, and it has given me a large part of my life back. Just being able to wear shorts in the summer again is wonderful. (I couldn't think of doing that with a leg bag between the knee and ankle.)
I am just about totally dry. Only a strong cough will cause a small bit of leakage past the AUS. Otherwise, I don't use a pad most days. If we're going out for a social event, such as a concert or church, I wear a light pad as a precaution. Sometimes, I don't even do that. Sex is essentially over for me, as I can't achieve a full erection, even with Cialis. I work to accept that, as I've had a good marriage and life. Oh, I do miss bike riding, something that I did a lot of before the Greenlight. The bike saddle horn would depress the cuff of the AUS causing leakage, and possibly damage the AUS. I can, however work out with a recumbent exercise bike with a wide seat that I have.
gary84626 glenn77
Posted
Hi glenn77,
Thank you very much for your response and for sharing your experience.
Sorry to hear that you can no longer enjoy bike riding, and sexual function, but great to hear that you have found something that works for you in the form of the AUS.
I am interested to hear that PT/Kegels didn't work for you. I realise that this was probably never going to work for you due to the previous surgery effects as you explained.
I am interested to know how long you tried Kegel/PT for ? and what exactly did that entail? ie daily practise? and what did the practise involve? I love exercising and keeping active so if I can use exercise to assist in preventing complications in later life then that sounds great to me.
Many Thanks
glenn77 gary84626
Posted
Gary,
The PT and Kegel work I did was directed by two different specialists at the first urology center where I had the GL surgery for BPH that started all my problems. Until then, I had never had a moment of ED or incontinence. I had the surgery because a cardiologist I visited for a check learned of my getting up 4 to 6 times a night, and referred me to the urologist, who convinced me to have surgery. (I had slowness, wasn't emptying fully, but never had a blockage issue.)
The specialists had me do core exercises along with Kegels. They made sure I was able to isolate the Kegel contractions from other exercises. During my visits, they used instruments to measure the Kegel contractions, with attention to the strength, rise time, hold time, and the relaxation time of the contraction. I did around 10 per hour. I would do them when stopped for a red light, for example. I was using Depend pull-ups during this period, and they would ask how many per day I was using to determine any progress. I told them that i though that with my high level of leakage, it was the wrong metric, and that the weight of the wet diapers I had to put in the trash each day was a better measure. (The bag of wet diapers weighed 4 to 5 lbs each day, and the tare weight of the dry Depend is extremely light, only a couple of ounces I estimate.)
After about two months, there was no improvement so I moved to a second therapist who specialized in electro stimulation of the Kegel muscles using a STM-10 device that attached to an anal proble. I did that for over a month, gradually increasing the level of the stimulation, with no improvement. (I continued the core exercises and office visits too.)
In desperation, I went to a new urologist in a neighboring city, about 30 miles away, as he specializes in AUS implants. Unfortunately, he found that I had complex strictures in the area of the external sphincter. That allowed me to understand why I had pain when the sphincter contracted, following the GL surgery. It also explained why I was leaking, as all the scar tissue was leaving leakage paths, not matter how strong the pelvic floor muscles were.
I spent a lot of money flying to the west coast and paying out of pocket to see a specialist who does only urethroplasty for men. He did x-ray studies for me with contrast fluid pushed into the bladder through the penis. I've attached one of those images to show what a mess was created by the botched GL surgery. We concluded that the risk of that long surgery at age 78 was not worth it. So I returned to NC, and followed an approach of having a urethotomy, a week with an uncomfortable large sized catheter, and going to surgery for the implant only 6 weeks post urethrotomy. It has worked so far, and my flow when I open the AUS is good (about 30 cc/second average). I think that having the part of the urethra where the strictures were under constant pressure must keep the stricture from reforming.
Sorry to be so long, but I thought someone might want to see how strictures can cause incontinence.
Glenn
gary84626 glenn77
Posted
Wow Glenn, it looks as though you've been through a lot.
So from what I can gather, it was the strictures that were the core issue with your incontinence. Good to note that this can occur.
Good to hear you're having progress. Thanks for sharing, and for providing the xray which was fascinating to see.
Regards.
glenn77 gary84626
Posted
monico09005 gary84626
Posted
I tried every diaper brand on the market. From europian design to amercian made products. I am an active 20 year old young college student. All the other products that I ever tried held me back greatly. They cause rashes they were low quality or claimed to be better then what they were. I've spent thousands on empty promises by big and small incontinence solution companies that really didn't meet what I was looking for. I have tried oxybutin which was prescribed by a doctor and that only made my incontinence worse. I have done kegles and I run and exercise daily, however, the more I workout out I my bladder strength still in on the decline. I believe that the reason I have incontinence is because I have had lactose intolerant issues all of my life and with constant constipation and pushing on my abdominal muscles I believe has permanently weakend my bladder and sphincter and nerves all together. I currently am on a high fiber diet which is helping the constipation however the bladder control is still declining as I get older and the more stress and agility I put on my body. I have stopped drinking caffeine and sodas. And have stuck to nutrisous juices. Which has changed my bodies health greatly. I do not smoke and stick to natural and a high protein diet to keep the rapid decline of my abdominal muscles at a standstill. I cannot stop my bladder from weakening I will not do any kind of surgical procedures or injections of any kind to improve this problem. There are to many side effects applied to most treatments held today in the world evolutionary beginning of medicine. I do not trust certain health treatments because of the lack of understanding and proof that most medical treatments work without harming the body. I highly recommend using align underwear I just tried it for the first time this week after using varieties of diapers and not wearing real underwear for the last 2 years. And this by far was the best investment I ever made. I never felt so confident ever before. It i is think padding super absorbent feels like underwear the brand has plenty of awards it truly is gonna change incontinent individual lives someday i highly stand by my beliefs
monico09005 gary84626
Posted
I tried every diaper brand on the market. From europian design to amercian made products. I am an active 20 year old young college student. All the other products that I ever tried held me back greatly. They cause rashes they were low quality or claimed to be better then what they were. I've spent thousands on empty promises by big and small incontinence solution companies that really didn't meet what I was looking for. I have tried oxybutin which was prescribed by a doctor and that only made my incontinence worse. I have done kegles and I run and exercise daily, however, the more I workout out I my bladder strength still in on the decline. I believe that the reason I have incontinence is because I have had lactose intolerant issues all of my life and with constant constipation and pushing on my abdominal muscles I believe has permanently weakend my bladder and sphincter and nerves all together. I currently am on a high fiber diet which is helping the constipation however the bladder control is still declining as I get older and the more stress and agility I put on my body. I have stopped drinking caffeine and sodas. And have stuck to nutrisous juices. Which has changed my bodies health greatly. I do not smoke and stick to natural and a high protein diet to keep the rapid decline of my abdominal muscles at a standstill. I cannot stop my bladder from weakening I will not do any kind of surgical procedures or injections of any kind to improve this problem. There are to many side effects applied to most treatments held today in the world evolutionary beginning of medicine. I do not trust certain health treatments because of the lack of understanding and proof that most medical treatments work without harming the body. I highly recommend using align underwear I just tried it for the first time this week after using varieties of diapers and not wearing real underwear for the last 2 years. And this by far was the best investment I ever made. I never felt so confident ever before. It i is think padding super absorbent feels like underwear the brand has plenty of awards it truly is gonna change incontinent individual lives someday i highly stand by my beliefs
gary84626 monico09005
Posted
Hi Monico09005,
Thank you very much for responding. I must say that I was surprised by your age - so young to have such issues. I think that's more a reflection of my ignorance about incontinence. I assumed that it affected older men and/or men who have had prostatectomies/ prostate issues.
I wish you the very best with your management of this situation, and am delighted that you have found a good solution to your problems.
Can I ask if you have tried more general body strengthening work? like squatting and lunges? I realize that it may take a while to be able to build up to this level without having any leaks, but I am curious to know if you have tried anything like this in addition to the more specific kegel exercises given the effect that such body strengthening has on the core/pelvic floor and abdominals?
By the way, you mentioned that you have tried other big and small incontinence solution companies - what were they offering and was it costly?
Regards.
glenn77 gary84626
Posted
gary84626 glenn77
Posted
Thank you for sharing glenn77. Good to know the different price ranges.
It seems like it could add up financially, but I guess if they are doing the job for you, then they're worth it?!
monico09005 gary84626
Posted
Oh no worries Gary It's not a big deal. This is a very stressful subject and I completely understand. I am only 150 pounds. I have been and athlete ever since I was young. I wrestled for 8 years. I played football for 11 years. I currently train in boxing but have not faced anyone I just do vigorous training to heighten my strength and in increase my reflexes and security defense. I currently run every night. I focus a ton on my core and I eat right. I am a dietician in self improvement. I am writing a book on human anatomy. I took number one in my contemporary health issues class in college. I currently work a lame ole side job and go to school fall and winter. I maintain my bodies health and anatomy very healthfully. I work my legs my core and my upper body every day. I stay away from weight lifting to prevent leaking doing so prevents faster damage to my bladder walls. I mainly focus mainly on agillility and cardio. And the last few months I have converted to higher water intake as my drink of choice. But orange juice and other juices aren't off the table. I have tried everything to strengthen my bladder. Nothing has worked. I have my first appointment with our families adult doctor in 10 days. No more pediatricians. However my anxiety that I have has been getting worse and worse I am afraid I am gonna have to take something very strong because I nearly stop breathing do to my chest constantly and randomly tightening up. I have add and adhd. Too I have token multiple medications as a child so I am gonna have to convert to something stronger like Xanax. IDK yet I honestly am hoping I get a prescription for it because it is the only thing I ever tried that actually works. What Xanax will do to my incontinence and how it will affect it I don't know what it may do. But I am at the point in my life where the things I can't control they need to be controlled in a strict manner.
gary84626 monico09005
Posted
Hi Monico,
Thanks for sharing your experiences. It sounds like your lifestyle is not an issue anyway, and it sounds like you are well educated on all health matters.
I genuinely don't mean to sound as if I am trying to lecture you or say I know best. My reasoning tells me that strength work may cause leakage initially - however - if you build up the resistance slowly and can train in an environment where you can just let leakages occur (like in your garage or at home) and not worry about it, you may see progress in the form of less leakage when lifting then it may help to control your bladder. I understand your reasoning about weakening the bladder further, I would just love to see how you go over the long term. Also, lifting has been shown to be a real winner when it comes to dealing with anxiety - I can attest to this! I weight train 5 days a week - not as a 'meat head' , but just to build up my strength, and I can honestly say that mentally it has been hugely beneficial in dealing with stress and anxiety, but also in sexual health/control/ejaculation - which would tie in with bladder control from my understanding. - "you can't go wrong getting strong".
As I said, this is just my reasoning. I'd be super interested to see if you had positive outcomes from some long-term (3-6 months) of gradual resistance training - especially squatting, lunging, deadlifting - I'm not trying to lecture you, just super interested and would love to see you making progress in this regard.
Sorry to hear about your anxiety issues. I hope you get on well with your doctor and can find the most conservative method possible of handling your symptoms instead of having to rely on heavy meds.
Best of luck with everything and thanks for sharing.
By the way, how much are the pads that you currently use? in monetary terms?
Regards.
monico09005 gary84626
Posted
It is protective underwear. They are by Alyne you can find them on the Alyne website. For a case of 68 I payed 59$. However it was my first time buying so I got 5$ off my first order. They came in 2 days with expected shipping and they are the best product I have ever used. The thinneness is unbelievable. They are very masculine. And can tackle day and night. They have premium leak guards. They feel like how underwear should feel. But better and more breathable all the way around. And I've spent 1,000's on others. Highly reccomended
gary84626 monico09005
Posted
Great to hear that you found a high quality product that does the job for you. Thank you for your responses.
Regards.
gary84626 monico09005
Posted
Hi Monico09005,
I hope you are doing well. Just thought I would check in to see how you went with your Family's Doctor as mentioned in your last post.
And how are your incontinence levels going?
Regards,
Gary