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Struggling with it all

User
Posted 09 Feb 2020 at 11:05

I’ve just joined the group today. I was diagnosed 8 years ago and had a prostatectomy followed by radio therapy. Since then my PSA has been close to zero so what’s the problem? I’m now completely incontinent and sex is gone forever.

Reading the plight of some people on the forum makes me feel like a fake as their problems are life threatening and I’m only pissing myself. But still I’m depressed at times.

User
Posted 09 Feb 2020 at 15:17

Surgery and radiotherapy definitely take their toll.

Sometimes I get quite low about the side effects I’m left with.

I am taking solefenacin which has helped with continence in my case. 

Ido4

User
Posted 09 Feb 2020 at 15:23
Each person’s problems are as important as the next, whether they are life threatening or not , so rant away. Maybe take action to revisit Uro to solve the incontinence problems , and see your GP about ED. There are injections like Invicorp 25 that work on most men. It’s really not that difficult to inject the side of your penis whatever you think. Good luck

If life gives you lemons , then make lemonade

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User
Posted 09 Feb 2020 at 15:17

Surgery and radiotherapy definitely take their toll.

Sometimes I get quite low about the side effects I’m left with.

I am taking solefenacin which has helped with continence in my case. 

Ido4

User
Posted 09 Feb 2020 at 15:23
Each person’s problems are as important as the next, whether they are life threatening or not , so rant away. Maybe take action to revisit Uro to solve the incontinence problems , and see your GP about ED. There are injections like Invicorp 25 that work on most men. It’s really not that difficult to inject the side of your penis whatever you think. Good luck

If life gives you lemons , then make lemonade

User
Posted 09 Feb 2020 at 16:41

Jim,
Don't dismiss the possibility of improving both those situations.

Go to your GP and ask for a referral to an ED clinic, and also to a Pelvic Health Physiotherapist.

The ED clinic will go through your options for sex. They might initially try you on PDE5 inhibitors just to see if there's any chance they'll work (Sildenafil/Viagra, Tadalafil/Cialis), but it may be that there aren't enough working nerves after your treatments for these. In that case, they'll try you on vasodilator drugs (Caverject, Invicorp, MUSE, Vitaros), and a pump with construction rings. The pump can also be used to try some penile rehabilitation.

If none of these work for you, you can be referred for an penile implant to generate erections, and most people who have those are very satisfied with them. Given a long period without erections which will have damaged the corpus cavernosum, it might be that this is the only option, as it replaces the corpus cavernosum.

For incontinence, a Pelvic Health Physiotherapist will do a detailed investigation of where the issue is, and refer you on for appropriate treatment (unless it can be fixed with just simple exercises). There are a number of surgical procedures, all probably better than they were 8 years ago, so make the most of the opportunity.

You were treated to extend your life, and that includes having a reasonable quality of life if possible, and you are entitled to have these investigations and any treatments they throw up. Don't feel guilty or a fake - you aren't.

User
Posted 09 Feb 2020 at 17:42
Jim, if you have uncontrollable incontinence, have you considered having an artificial sphincter fitted? A number of men on this site have reported great success with them. There are several threads about them which you'll find with a search. Basically they're a valve that's surgically implanted that you turn on or off manually.

Best wishes,

Chris

User
Posted 09 Feb 2020 at 19:18

Thanks Chris. I had one fitted and it worked well but infection meant that it had to be removed. I’m waiting for an operation to refit one and it may work long term this time. Fingers crossed! It’s the only thing that may help. My initial surgery was very extensive. A lot of tissue beyond the prostate was removed and my surgeon  had to refashion a bladder neck . A few plastic surgical clips were used and one by one they have migrated into my bladder. I’ve had numerous operations to remove them so my insides are a bit of a mess! Getting your prostate removed is not always simple! It’s good that i can share this information on this forum. It may help others make a decision regarding surgery. Cheers!

 

User
Posted 09 Feb 2020 at 19:24
Very sorry to hear that you've had so many problems, Jim. Fingers crossed that AUS #2 will be a permanent solution for you.

Best wishes,

Chris

User
Posted 10 Feb 2020 at 13:30

Oh Jim

You have definitely not been ‘cut any breaks’ in this journey.  Firstly to be in the agressive diagnosis camp and then the side effects of the treatment.

In these circumstances your feelings seem perfectly normal to me.

Fingers crossed you get an improvement.

Thank you for the honest share. It’s important for others  to be aware of the myriad outcomes and variety of circumstances.

Clare 

 

 

 

 

User
Posted 10 Feb 2020 at 15:05

Jim

Best wishes to you and don’t feel like a fake. All of your issues are real and need to be lived with. More knowledgeable people than I have given you information and I hope it helps. I’ll just give you my moral support and hope it all goes well.

Rob

 
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