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erection / lack of !!!

User
Posted 21 Mar 2020 at 17:03

Hi all,

After trying everything including the kitchen sink and therapists ,I am still struggling with erections 4 years on.

today saw consultant re implant but all negative re going that route was his response.

over the years I have tried invacorp which left me in a lot of pain, next was cavajet which was the same , then offered cabaret drops which did jock all ( as the consultant told me today "That doesn't work" .The pump does work of sorts but goes numb within 5 mins and after 15 mins trying to get it to a state of use leaves you in a distracted state. Tried 2 different psychosexual councillors.

Due to my none nerve sparing surgery I'm left with a break up of my relationship so what to do going forward, I'm just starting a new relationship with a broken todger at 55 years old .Have asked to try invacorp again but not holding much hope.

Anyone else having issues.

User
Posted 21 Mar 2020 at 22:03
After 4 years, if you have not been managing to get regular engorgement it is less likely to be successful now than before. What do you mean, the consultant said negative re going down the implant route? I don't think he has a right to close down your option that easily?

Hopefully Ulsterman will come along and tell you where he is being treated; I think maybe you should ask for a referral elsewhere for a second opinion but you may have to go to London.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Mar 2020 at 08:48

Thanks for reply Lyn,

The consultant was very negative from all angles( issues like how long it will last , infection, wrong sizing, failing units, complications and with no way of repair if it damages anything ).

He emphasised that invacorp injections I tried ,I was the only person who has ever said they gave pain !! sort of calling me a lier ( I did try to argue but felt it wasn't worth it ). It's hard when someone in that position isn't sympathetic to the reason you are asking for help with getting an erection. 

My last relationship ended because I got depressed about not feeling like a guy who could share intimacy in the "normal" way. I'm just starting a new relationship with a long standing friend who knows quite a lot of may journey but not got too the level in the relationship to discuss my ED.

I'm not depressed with it anymore but am frustrated . Trying to meet a new partner at 55 with ED is hard ( pardon the pun ). ;-).

User
Posted 22 Mar 2020 at 10:45

Mr Ben

Please feel free to private message me, but I'll post here what is my understanding of the assessment process for eligibility for a penile implant.  This is very much based on my experience and so may not in fact be 100% factually correct as far as NHS procedures go.

You and I have followed more or less the same treatment pathway.  My prostatectomy was in December 2016, non-nerve sparing.  Followed by radiotherapy and 18 months hormone therapy (bicalutimide).

I have not had psychosexual therapy which you have had.  This should be a plus point in your assessment for an implant in the sense that you really have tried everything to help yourself and nothing has worked.  Your age may or may not be a factor.  I'm 50 in August.  I told the consultant that as a young man I wasn't psychologically ready to give up hope of a sex life.  He agreed.  Some say age is a factor, some say it isn't.  However, I do think telling a 50 year old they can't have an implant is different to telling an 80 year old the same thing.  Sorry to all those sexually active 80 year olds.

In August 2019 I asked my oncologist what the procedures were for requesting a penile implant.  She didn't have a clue.  My cancer nurse said I needed to be referred to Mr ***** who would assess me.  7 months later, the appointment finally came through.  I was asked what treatments I had used.  Told him the only thing that partially worked was Invicorp but it was a bit hit and miss.  Sometimes a satisfactory erection was achieved, sometimes not.  Mad facial flushing though whether a successful erection was achieved or not.  I also said that 5 erections per month on the NHS wasn't particularly good for my emotional well-being as a young man.

He immediately told me he was supportive of the application for funding.  He also explained that there are very few surgeons who perform this surgery.  He used to but has stopped and so said I would need to be referred elsewhere.  I immediately told him I wanted to be referred to Mr ****** at UCLH.  He asked why.  I told him I attended a PCa support group in Chorleywood and that Prof **** had recommended Mr ******.  He told me he was a personal friend of Mr ****** and that he would gladly make the referral.

I asked about the funding and if there were likely to be any issues.  He told me that funding was dependent on how supportive he was of the application.  He said he was very supportive and that he really did not see any issues.  I would have the surgery and it would be dependent on UCLH waiting lists and coronavirus impact on the NHS.

So now I await an appointment at UCLH.

Your consultant was right to be cautious though.  My consultant told me that all surgery carries risk, but this is a particuarly problematic surgery.  Infection can happen and if the implant fails, a replacement may be possible, but not always.  In short, he was saying stick with what you have at the moment - at least it partially works.  Or, go for a risky surgery which could leave you with a 100% useless penis from a sexual point of view.  Of course, he did also say that the surgery can be a life changer.  I am actually more anxious about this than the prostatectomy.  

My GP when I spoke to him about the implant didn't have a clue about anything to do with it.  

All of my doctors, nurses and my GP have been nothing but excellent over the past few years.  But I did tell them they need to brush up on their penile implant knowledge.  No one had a clue about referral mechanisms and funding. 

If I were you, I'd still be pursuing this.  Your consultant is possibly being overly cautious.  Speak to the PCUK nurses to ask about how you get a second opinion.  If your near London, ask for a UCLH referral.  I can give you the name of the recommended consultant there.  Others on the forum have used him and are happy with the results.  

Hope this helps.

Ulsterman

User
Posted 22 Mar 2020 at 12:06

"He emphasised that invacorp injections I tried ,I was the only person who has ever said they gave pain !! sort of calling me a lier"

Clearly, his lack of empathy means that he doesn't actually ask or listen to his patients' experiences. After-pain is a very common side effect although I have to say John is having no side effects at all

Edited by member 22 Mar 2020 at 12:07  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Mar 2020 at 15:14

Yes Lyn, listening is very important.

Thank you also to Ulsterman , glad you have had a positive outcome.

I am going to give Invacorp another go. Cavajet was deffo like someone kicked me hard in the groin.

It was around 16 months ago I last tried it. 

I suppose there's nothing new coming onto the market soon. 

Mr B

 

User
Posted 22 Mar 2020 at 15:14
I think you should give Invicorp25 a few more goes and pay special attention to injection technique and area. I used Caverject and Viridal a few times with only partial success but immense after pain. But with Invicorp it was 100% success with zero pain. Just saying you may have injected wrong. Good luck

If life gives you lemons , then make lemonade

User
Posted 22 Mar 2020 at 18:07

Also look at Drayton - he has had the implant and has posted about it

User
Posted 10 Sep 2020 at 11:47

Hi Ulsterman

"However, I do think telling a 50 year old they can't have an implant is different to telling an 80 year old the same thing.  Sorry to all those sexually active 80 year olds."

I am 81 and 3/4 years old and I  gracefully accept your apology!  I had RP 9 years ago, having been using a pump with great success. If you can master using a pump it is such a good solution: no side effects, erection on demand, erections can be maintained for up to half an hour, no leakage of urine during orgasm, oral sex without ejaculate/semen/urine. What is there not to like!! This post is a little tongue in cheek!!

 

User
Posted 10 Sep 2020 at 14:28
But Mityana, if they offered you surgery to implant a metal rod or inflatable reservoir in your penis, a major op requiring general anaesthetic, would you do it?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Sep 2020 at 18:38

Hi Lyn

My wife had I had considered all the options involving surgery and we decided to go for the pump and as you can see in my latest post we made the right choice.

User
Posted 12 Sep 2020 at 22:34
My dad is 83 - he never really got on with the pump but still uses Caverject on special occasions :-/ I only worry that his heart will give out long before the cancer gets him!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Sep 2020 at 08:10
Just saying, Caverject is strong stuff and in my experience I was prescribed almost 10 times what I actually needed (20ml v 2.5). Once I got the dose right it worked a treat and was pretty painless.
User
Posted 24 Sep 2020 at 16:11
Herbal snake oil. Stick with the tested & approved treatments, Mr Ben :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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