Penial shrinkage

Penial shrinkage

User

Posted 22 Mar 2016 at 20:07

Hello,

I have a problem which is getting increasingly worse and causing me a great deal of stress.

Had radical prostatectomy in 2014 which in general was successful and thankfully, I've remained clear of cancer since. Had the usual challenges around incontinence and ED and have taken many different tablets to try and get an erection with no effect whatsoever. I use Caverject 40mg which gives a little election but not really enough to be useful. Been using the vacuum pump off and on for about 9 months with limited success and during the last 3 months my penis has shrunk down to become almost nothing! I find it very embarrassing and emotionally I feel emasculated.

When I last saw the ED specialist he said that the pump was probably the only remaining course of action and didn't suggest a follow up, but it's not really working. Any ideas?

User

Posted 01 Apr 2016 at 19:33

Hi again,

A quick update - I've been using the pump every few days (had man flu which stopped things for a while) and it appears to be working better

I had got into a bad habit of just pumping up and leaving it for 20 minutes while I did other things, so now I have to make an effort to release and pump again several times.

Its certainly made peeing a bit easier as its difficult when you've got a little acorn which could go off in any direction!

Thanks for your help and I will keep on pumping!

Tony

User

Posted 13 Apr 2016 at 20:55

Hi 80.......9 I have seen the urology nurse today and one part of the conversation was ED (she is ED nurse as well) I explained that I had a couple of mini erections recently and she gave me a request for my GP to supply 20mg cialis tablets to be taken twice a week to help with and prevent penile atrophy, she also suggested that I use the pump regularly so I will be seeing the rep on May 6th to organise one. I did discuss the fact that my tadger was now a little tadger and she said it will help with regular use but not to expect results overnight.

Try talking to your urology nurse as well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 13 Apr 2016 at 22:02 | Reason: Not specified

User

Posted 13 Apr 2016 at 23:35

I have written on here before about penile health for men on HT - should be easy to find using the search function. Men who lose their libido while on long term HT should be offered a pump and should use it in much the same way as a man post-op, ie at least once each day. Daily Cialis is unlikely to help with atrophy while on HT as its purpose is to draw oxygen to the nerve bundles and on HT it isn't the nerve bundles that are compromised.

CC, I think there are men who can hang their hat on it but they are possibly in the minority. John has in theory made a full recovery but it is shorter and thinner than it was before - some positions are no longer possible for us. But no problem with firmness at the base :-)

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

User

Posted 22 Mar 2016 at 20:55

Hi Tony,

What sort of RP did you have?

What other medication are you on?

What exercises have you been doing to the penis and groin area since your operation?

Is the loss of size the same throughout the year?

Bear in mind it's winter, and everything shrinks in the winter, well mine does. Actually, nipples get bigger, go figure!

Sorry for bombarding with questions, but they are relevant and may assist others to give advice and support?

dave

Edited by member 22 Mar 2016 at 22:10 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 22 Mar 2016 at 22:57

Due to an never ending problem with a stricture my penile rehabilitation was very hit and miss with an embargo on the pump. I am 23 months post RARP and have only used the pump on a regular basis for the last 10 weeks, you will no doubt get advice to use it more than you are doing. I did suffer from a small amount of shrinkage but it recovered. With the pump I can achive a pre op size.

Are you using the pump correctly, one of our ladies gives a very good description and some good tips.

I take two blood pressure tablets and my surgeon asked my GP to prescribe daily 100mg of sildeafil. Although this does not achieve anything like a full size penis it does create tumescence numerous times a day and has helped get things back to something like normal.

I use muse pellets and although I cannot seem to get consistent results I have had some very successful and rock hard results.

As CB has said in the past it does sometines need some vigorous stimulation to get things working.

Thanks Chris

User

Posted 22 Mar 2016 at 23:36

The getting smaller is called penile atrophy - the spongy cells in the penis die if not filled with blood / oxygen regularly. But it isn't so long since your op that you would be beyond any help so need to work on that pump technique my friend - if you don't get on top of it now, the shrinkage might become permanent.

It isn't really possible for the pump not to work - were you taught how to do it properly by the ED consultant? Did you get the brand that provides a DVD? Do you get an erection in the tube or not?

Did the Caverject produce an erection when the ED consultant injected you? There are men on here for whom Caverject was a complete failure but have had success with Muse pellets or the new cream (I forget what that is called)

Sorry .... that's a lot of questions but I bet we can help you

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

User

Posted 23 Mar 2016 at 18:15

Some potentially interesting advice above. Has me in tears at the thought.

Some good advice above, works for Lynne!

A minor change or to, worked for me, for you to consider?

I would shave the pubic chair completely, with a razor, wet or electric. Maybe not wet if you have had some beers! Better still get a "friend" to shave it for you. May assist with the stirrings, did for me. And stirrings actually makes the shaving easier, although you might get distracted? And, added bonus, a shaved area makes everything look larger, works for porn stars, works for me.

Pump for a couple of minutes??? FFS NO!!! Hold on, read the instructions first. The Erica (Osbon) that I had suggested pumping a few pumps, that might take 5 or 6 seconds. Then rest. Allow the body, your bits to move into position, become engorged and start to fill the tube. THEN pump again. You may get a feeling of being "stretched" in all and every angle at the same time, it starts out being a bit painful. But if you stop pumping as the pain gets to your threshold, it eases, and you can pump a bit more. You soon get used to it and, even like it, a bit, maybe? I am not into BDSM, or any pain especially where it is inflicted on me, but the pump was a weird feeling, that was quite curiously pleasurable, still is.

If you just get on and in and pump for 2 minutes you are likely to explode. It might be the best feeling ever but it might be the last feeling ever?

What do the instructions say?

Have you tried weights? Twirling? Centrifugal force assisted growth?

Give it your best efforts now, as often as you can. But don't blow yourself up FFS!

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 13 Apr 2016 at 21:00

If you are not getting natural daily erections , yet want to keep penile health and hope for future natural recovery , then get a pump and instructions and create a daily erection at least once per day , or ask your doctor for daily Cialis. Use it or lose it as they say !! I'm 9 months post op and have had zero recovery despite being 48 with double nerve sparing , yet I battle on daily with the pump having been denied Cialis. Yes , I'm getting VERY VERY bored and losing faith , but what choice do I have ? Best wishes

Edited by member 13 Apr 2016 at 21:01 | Reason: Not specified

User

Posted 13 Apr 2016 at 21:07

Chris (and 80.... Etc)

You're joining the club at long last. Seems a high dose of Cialis though. I'm on 5 mg daily as you know. I see the vac rep at week's group session at the ed clinic. That should be fun.

I can say that my GP is very supportive and she said it's necessary to avoid atrophy. Almost 3 weeks on Cialis and I'm pleased to see a much improved fella. Increased length and girth - not so little now.

Side effects not completely gone though. Residue buttock pain but again improving.

For us on HT not much seems to be posted about ED on here, it seems to be mostly for the RP crew! About time we had a look in. !

Keep well,

John

User

Posted 13 Apr 2016 at 21:20

Hi John, yes I agree it seems to be avoided and only the mention of loss of libido from having HT but there is no general discussion or even being told what that there might be a long term problem and what to do to prevent it. There is no linking up with the fact that HT treatment and it's side effects need to be dealt with during the treatment and that the concerns from men are as valid as those that have had a RP.

I will keep you posted with PM's John, I was going to let you know but this posting prompted my input.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 13 Apr 2016 at 21:35

Chris ,

Yes my GP said that the RT patients she sees are so often overlooked and her RP patients have gold star service for ED in comparism. No one ever spoke to me about ed at all during treatment. I was told about loss of libido etc from HT but that was all. It was only from this site and a RP friend that brought it to my attention.

No mention of atrophy nor the cardio vascular problems it can cause.

I've had several natural erections but short lived - nice though ....

So better late than never. And you've only 12 months to go on HT - 24 in all ? I'm minimum 36 so my need is greater than yours !

Keep well my friend

John

User

Posted 13 Apr 2016 at 22:10

Hi guys.

I am almost 2 years post da Vinci and I am prescribed daily 100 mg sildeafil. For various reasons l am only taking 50 mg a day. I use the pump when I can but never seem to find me time. I do get some tumescence without stimulation. I often see reference to stimulating the penis. I have found stimulating the base of the penis has far more effect on swelling than stimulating the end of the penis.

I have asked this question before and not got an answer, do guys who make a full recovery actually get an erect penis with strength where it joins the body, or in simple terms can they hang their hat on it.

Thanks Chris

Show Most Thanked Posts

User

Posted 22 Mar 2016 at 20:55

Hi Tony,

What sort of RP did you have?

What other medication are you on?

What exercises have you been doing to the penis and groin area since your operation?

Is the loss of size the same throughout the year?

Bear in mind it's winter, and everything shrinks in the winter, well mine does. Actually, nipples get bigger, go figure!

Sorry for bombarding with questions, but they are relevant and may assist others to give advice and support?

dave

Edited by member 22 Mar 2016 at 22:10 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 22 Mar 2016 at 22:12

Hi Dave,

Complete prostate removal by robotic surgery and some nerve sparing. (Not sure how much)

No other medication for prostrate but high blood pressure tablets. I've been doing pelvic floor exercises since operation which has been quite successful and I only leak a little now. I use the pump 3/4 days per week about 20 minutes each time.

Yes, definitely smaller when it's colder but never been this small!

Also, I'm 61 years old and in good health otherwise. Just very frustrated!

Tony

Edited by member 22 Mar 2016 at 22:13 | Reason: Not specified

User

Posted 22 Mar 2016 at 22:57

Are you using the pump correctly, one of our ladies gives a very good description and some good tips.

I use muse pellets and although I cannot seem to get consistent results I have had some very successful and rock hard results.

As CB has said in the past it does sometines need some vigorous stimulation to get things working.

Thanks Chris

User

Posted 22 Mar 2016 at 23:36

It isn't really possible for the pump not to work - were you taught how to do it properly by the ED consultant? Did you get the brand that provides a DVD? Do you get an erection in the tube or not?

Sorry .... that's a lot of questions but I bet we can help you

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

User

Posted 23 Mar 2016 at 10:12

Thanks for your responses, I didn't expect them so soon!

The thought of Penial Atrophy gives me the willies! I must get this sorted quickly.

The pump is a Somaerect and although it gets it up, I wouldn't say it was really erect so this evening I will look for the information it came with and check I'm doing it right. (I was expecting a call from them to set up a training session but they never rang and as I find it a bit embarrassing, I didn't chase them.)

Caverject partially works but I do find it tricky to use and it leaves a dark mark where I inject each time. I don't find it a good experience and I feel like a drugie using a needle!

I think I will also arrange another appointment with the ED specialist to discuss Muse and cream as it sounds like that my be an alternative to injecting, but it is only temporary and I guess the pump is longer term.

Thanks for your advice.

Tony

User

Posted 23 Mar 2016 at 16:02

One of the joys of an online forum is that no-one can see us so embarrassment is removed. I hope the following is helpful:
- trim pubic hair as short as possible
- put KY jelly (or the lube that came with the pump) on your pubic area and also all around the edge and up the inside of the tube
- it might be easiest to sit on the edge of the bed so that you can rest your arm on your thigh when necessary
- press the tube firmly against your pubic bone, ensuring your scrotal sack is well out of the way
- start to pump, ensuring you don't wobble and break the seal between the tube and the flesh
- pump for a couple of minutes and then rest to allow blood to flow into the penis, then pump again, rest again, pump again etc
- when you think it is as big as it is going to get, release the vacuum by breaking the seal with the skin (tip the tube sideways a little)
- then start again
- John was told to do this 5 times, three times each day - for example on waking, at tea time or before an evening shower and then bed time
- to begin with, he could only get up to the first E on ESTEEM written up the side of the pump - once he had the technique right, he could get past the third E

Is that fairly close to what you are doing? No point worrying about the rings until you have got this bit perfected but given time, who knows :-)

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

User

Posted 23 Mar 2016 at 18:15

Some potentially interesting advice above. Has me in tears at the thought.

Some good advice above, works for Lynne!

A minor change or to, worked for me, for you to consider?

If you just get on and in and pump for 2 minutes you are likely to explode. It might be the best feeling ever but it might be the last feeling ever?

What do the instructions say?

Have you tried weights? Twirling? Centrifugal force assisted growth?

Give it your best efforts now, as often as you can. But don't blow yourself up FFS!

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Mar 2016 at 19:02

Originally Posted by: Online Community Member

I would shave the pubic chair completely, with a razor, wet or electric. Maybe not wet if you have had some beers!

......... removed ........

If you just get on and in and pump for 2 minutes you are likely to explode. It might be the best feeling ever but it might be the last feeling ever?

CB, how on earth do you bear the shaving rash afterwards (bane of my life)?

John's instructions were definitely to pump for 2 - 3 mins at a time. But perhaps you had a much more frenetic action while he has always been a slow and steady kind of guy :-)

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

User

Posted 23 Mar 2016 at 19:20

"CB, how on earth do you bear the shaving rash afterwards (bane of my life)?"

I have no rash. My skin is soft and smooth, I moisturise. ;-) But then, I am a mere youngster!! :-)

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Mar 2016 at 19:54

Thanks both,

Interesting advice! I may have been doing it slightly wrong.....oops!

Lynne, yes, I've been keeping things trimmed but I've been pumping it up and leaving it on for 20 minutes without releasing. I've also been using the smallest sleeve in the pump kit which I've just found out I don't really need, my penis is bigger than I thought! It may have been restricting things.

From your advice CB, slower is better and its seems to be working already this evening, its got bigger than it has been for a while.

I would have trouble doing this five times a day unfortunately. I leaving for work at 05:30 communte 80 miles into London and get back around 19:00 usually exhausted! And, I definitely won't be taking the pump into work!

I will persevere now and give it a few days. Will let you know next week if its having the desired effect.

Thanks again

Tony

User

Posted 23 Mar 2016 at 20:17

No no .... using a vacuum pump on the tube to work is probably an offence anyway! I meant get it erect and then release and repeat 5 times - not do the whole lot 5 times every day. You wouldn't have any time to do anything else :-) Morning & night or morning, tea time and night would be sufficient.

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

User

Posted 23 Mar 2016 at 20:18

Originally Posted by: Online Community Member

my penis is bigger than I thought!

It's not often you see a comment like that on here :-)

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

User

Posted 23 Mar 2016 at 20:37

Originally Posted by: Online Community Member

my penis is bigger than I thought!

It's not often you see a comment like that on here :-)

Ha! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 01 Apr 2016 at 19:33

Hi again,

A quick update - I've been using the pump every few days (had man flu which stopped things for a while) and it appears to be working better

I had got into a bad habit of just pumping up and leaving it for 20 minutes while I did other things, so now I have to make an effort to release and pump again several times.

Its certainly made peeing a bit easier as its difficult when you've got a little acorn which could go off in any direction!

Thanks for your help and I will keep on pumping!

Tony

User

Posted 01 Apr 2016 at 23:22

Excellent news - now you need targets to aim for like marking how far up the tube you can get. Makes it easier to prove to yourself that progress is being made and therefore easier to stay motivated

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

User

Posted 13 Apr 2016 at 20:27

Can i ask...does this penile shrinkage apply to us guys on HT for at least 2 years......should i be getting and using a pump...the little fella really does not need a diet.

User

Posted 13 Apr 2016 at 20:55

Try talking to your urology nurse as well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 13 Apr 2016 at 22:02 | Reason: Not specified

User

Posted 13 Apr 2016 at 21:00

Edited by member 13 Apr 2016 at 21:01 | Reason: Not specified

User

Posted 13 Apr 2016 at 21:07

Chris (and 80.... Etc)

You're joining the club at long last. Seems a high dose of Cialis though. I'm on 5 mg daily as you know. I see the vac rep at week's group session at the ed clinic. That should be fun.

Side effects not completely gone though. Residue buttock pain but again improving.

For us on HT not much seems to be posted about ED on here, it seems to be mostly for the RP crew! About time we had a look in. !

Keep well,

John

User

Posted 13 Apr 2016 at 21:20

I will keep you posted with PM's John, I was going to let you know but this posting prompted my input.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 13 Apr 2016 at 21:35

Chris ,

No mention of atrophy nor the cardio vascular problems it can cause.

I've had several natural erections but short lived - nice though ....

So better late than never. And you've only 12 months to go on HT - 24 in all ? I'm minimum 36 so my need is greater than yours !

Keep well my friend

John

User

Posted 13 Apr 2016 at 21:39

Chris J,

Keep the faith. I follow your progress - you're amazing. !

John

User

Posted 13 Apr 2016 at 22:10

Hi guys.

Thanks Chris

User

Posted 13 Apr 2016 at 23:35

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

User

Posted 14 Apr 2016 at 11:35

Lyn, any idea who I should speak to abou a pump? My GP possibly/

Shaun

User

Posted 14 Apr 2016 at 12:19

Depends where you live Shaun - in most areas, there is an ED nurse or andrology clinic so ask your GP for a referral to that. If you are unfortunate enough to live in an area where this service is not offered then yes, ask your GP for a prescription. If s/he is not particularly knowledgeable about HT, penile health and NICE guidelines s/he may struggle to know which pump to prescribe - somewhere on this forum there is a thread with the prescription codes* for the Farnhurst Elite and the Osbon Erecaid Esteem. These seem to be the most popularly prescribed.

If you are really unlucky and live in an area where the CCG has decided not to fund vacuum pumps (despite you being entitled to one under NICE) let me know - we have a spare one (sterilised of course)

*Note added - Osbon Esteem NHS order code is XX-50 and PIP code is 289-0713

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

User

Posted 14 Apr 2016 at 12:29

Thanks Lyn, much appreciated.....had my 2nd chemo yesterday so I am laying low for a few days.....after my 1st I felt so good I was out and about round asda the same night.....got a chest infection that floored me....I will take the info you have given me to my GP in a few days...He is usually very good with stuff so hopefully I can get the little fella his gym kit lol.

Shaun

User

Posted 14 Apr 2016 at 15:13

I had rp and no sparing of nerves, so cannot get erection. Tried pump nut skin on penis was too soft and it caused bleeding and infection. Tried cream, and muse, but not with any success. My wife and I are grateful I was caught before it spread - Gleason 9 stage 3 - but would have liked to continue having full sex, but have elected for whatever we can do. I can mastubate to climax, on a soft penis, but takes a while. Not sure about implants, as I don't really want anymore surgery. I had to have a circumcision to clear up foreskin infection from pump use. Anyone else having this problem? By the way, that the surgeon said about loosing 10 to 15mm off penis length... More like 30 to 40mm!!

User

Posted 14 Apr 2016 at 15:19

Wow that's a lot to lose!

User

Posted 14 Apr 2016 at 16:14

My foreskin is longer than it was but it was caused by the foreskin not being pulled back over the gland(bell end). The foreskin came up like a ballon. The first time was after not pulling it back after a shower, I rang my Uro nurse who told me to put a bag of frozen peas on it until the swelling went down then pull the skin back over the gland. I did ask if they needed to be garden or processed.

The second time was post op were the foreskin and not been put back after an op. I asked the nurse for an ice pack and got crushed ice in a surgical glove.

I think using the sheath system aggravated it when try to pull it off even with the use of adhesive release spray.

I sometimes think i might need a circumcision but other times it is okay. It can have the advantage of catching a small leak, but keeping it clean is a must.

Link to page.

https://books.google.co.uk/books?id=jsU3IsgiaO8C&pg=PA128&lpg=PA128&dq=flaccid+insertion&source=bl&ots=wIalSMDe0_&sig=CYNdFSMWb0UXT03LC-8UbXwkX5I&hl=en&sa=X&ved=0ahUKEwjviM7quI7MAhUB2xoKHTobDrkQ6AEIHDAA#v=onepage&q=flaccid%20insertion&f=false

Above is a link to a page,you may need to copy and paste it into your browser. I would copy and paste the extract but I suspect that may not be allowed.

It describes a technique for having vaginal intercourse with a soft penis. It works for us.

Thanks Chris

Edited by member 14 Apr 2016 at 16:30 | Reason: Not specified

User

Posted 14 Apr 2016 at 16:20

Russell, did anyone ever let you try caverject injections?

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

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