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Penis - Advice and Encouragement

User
Posted 19 Mar 2020 at 16:37

Hi all, I'm a (previously) fit, healthy and happy 53 year old who was diagnised with Gleeson 7 PC about a year ago. I had (non rebotic) RP  eight months ago - in July 2019. I had double nerve sparing surgery and the surgeon said post op that 'they looked very good'. The operation went well, pads for a couple of months and (bar a couple of accidents) thankfully dry. My first PSA test was very positive ....I'm awaiting results for the second.

Really struggling though with the sexual side effects. I thought I'd be more resilient and robost - but the whole experience is getting me down. I'm not sure I was as informed or prepared as I should've been....

I'd be really pleased if those who are further down the line to give me some advice and the benefit of thier experience.

Here's my history / issues:

1. Flacid penis (never that big) seems considerably shorter, wrinkled and often seems to 'disappear'. Q - Has anyone else experienced this?

2. I was lucky enough to get a Soma pump device a month or so ago and use it regularly. Although find it quite a painful experience (don't get on with the rings at all) and the erection (if you can call it that) seems considerably shorter and curved/distorted than previously. Q - Is this usual / will it improve over time or get back to how it was? I hope so, there's about 1.5 inches missing somewhere.

3. There are no natural or drug induced erections, although some swelling does occur my penis remains quite flacid. I've been using Viagra  50/100 and Cialis 10 - with no noteable success. Q Am I an 'non-responder' and will this change over time?

4. I've tried the Muse type cream through the (J eye) applicator with some limited success. I acheived an erection of sorts, certainly not firm enough for penetration and (again) the penis seemed considerably shorter and noticably more curved than previously. It was also quite sore - more like a painful cramp than a normal erection. Q Has anyone else had this experience and do you think injections (I think they are called Caverject) would help or improve things?   

Generally, there's nothing wrong with my sex drive and I can acheive (dry) orgasms, which are only slightly less intense.

So there it is - I never thought I'd need to do this, but I feel quite isolated and my confidence has really taken a battering. 

Many thanks

 

User
Posted 19 Mar 2020 at 18:36

Hi Peabo,

Welcome to the forum.

8 months is too soon to start worrying about long term recovery - it can take up to 2 years.

Can you be more specific about when and how often you take the PDE5 inhibitor drugs (Viagra and Cialis)?
Viagra is an event drug, to be taken an hour or so before trying for an erection. Cialis can be used that way, but it's longer lasting, so there's also a daily low dose option. 10mg Cialis is a strange dose - it's an event dose for those who find the 20mg event dose gives them too many side effects. Normally, you would take 5mg Cialis daily, and possibly an occasional 20mg Cialis or a Viagra as an event drug.

The pump is an excellent idea until you are generating frequent natural erections. You should use it daily. The new curvature sounds like Peryonie's disease, and there are pump inserts for correcting this - go back to your ED clinic (or pump clinic) to arrange to get that. However, pumps used with too high a pressure or on blood thinners can cause Peryonie's disease, so you really should get back to the ED clinic to have that checked out.

The PDE5 inhibitors will only give you an erection when the nerves have recovered. The low dose daily 5mg Cialis is worth taking anyway, because it improves blood flow even in the flaccid penis which helps prevent it coming to damage in the absence of regular natural erections.

Muse, Vitaros, and Caverject are vasodilator drugs. These work differently and will generate an erection without working nerves, and even without any arousal. Caverject (and similar products Viridal and Invicorp) is the most effective, because they inject the drug directly into the corpus cavernosum, where it needs to be to work. Muse and Vitaros leave the drug in a different structure of the penis (corpus spongiosum), which may give you an erect glans, but it needs to diffuse across to the corpus cavernosum to work, so they are less effective at getting the drug into the right place. Vasodilator drugs can cause pain - with the injected ones, part of your ED clinic session will be to work out the minimum dose which works for you, which is likely to be the least painful afterwards. Most of the vasodilator drugs are Alprostadil based. If it turns out you just don't get on with that, it's worth trying Invicorp, because that uses a pair of different drugs.

You will probably have lost some length. removal of the prostate also removes the prostatic urethra (the length of urethra inside the prostate). In order to join the urethra back to the bladder, the bladder is pulled down into the prostate bed and the urethra is pulled in to meet it. Also, if you've gone some time without erections, the erectile part of the penis becomes less elastic. Achieving daily erections by whatever means (pump, vasodilator drugs, or PDE5 inhibitors) is important to maintaining the penis health, and may reverse some of the shrinkage, but very likely not all of it.

Wishing you all the best.

Edited by member 19 Mar 2020 at 18:47  | Reason: Not specified

User
Posted 20 Mar 2020 at 00:49
Unless you have the make of vacuum which requires the restriction rings to be used at all times, you will probably find it more comfortable to pump frequently to maintain penile health without using the rings. But if you are developing Peyronies, dtop using the pump until you have had advice from your ED nurse or doctor.

Otherwise, Andy's response is spot on apart from timing of tablets. In our house, John would need to take the Viagra in the afternoon to get an erection that evening, or at night for an erection the next morning. Also, important to take it on an empty stomach and if you are anxious, that affects whether it works as well.

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

User
Posted 22 Aug 2020 at 10:50

Hi there

Thanks for sharing so openly. I want to respond to your opening point and one of your questions (#2). 

About feeling less robust and resilient than you expected - yes, I can relate! I was super fit before the operation and actually my overall fitness is back there, but the loss of erectile function really hits me where it hurts. I did a lot of thinking and really spiritual work about "my erection is not the same as my sexuality" and "sex is not the sum total of my libido" but for all that, it just gets me down that I can't get it up.

It's long and it's slow - for me the last six months have been all about finding myself and my sexuality without erections. After all, I am still a sexual being and my body still responds to sensuality, even though one member doesn't respond much at all. These things are sent to try us. I am beginning to feel that as I let go of some of my old "hard wiring" I can enjoy life and sexuality just a bit more.

Also, about your Question 2: Yes, I think it is normal that at first, using the pump is a bit painful and produces pretty disappointing rubbery results. After some months I have noticed that (a) it is getting a bit better on average and (b) day by day it varies a lot - some days (particularly if I am tired or distracted) it simply doesn't respond much, other days (particularly if I am in a good mood) I am able to tune into erotic energy more and it grows encouragingly. (c)The mechanical nature of using a pump is very unsexy and I am slowly getting used to that. My wife is also supportive, but it has taken a long time to somehow be both sexual and mechanical at the same time.

Best wishes for your journey - and please let us know how it is going!

 
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