Diagnosed December 1st 2019 with advanced PCa, PSA 90, gleason 7 (4+3) in all 12 biopsies (up to 75%), metastases in 3 bones in pelvis, 1 rib and 4-5 (or more) lymph nodes.. I got on Eligard and Zytiga+pred. right away and currently I am undergoing radiation to prostate (AND the 3 pelvic bone metastases - I challenged them to do so and they agreed due to my young age).. Anyways... PSA has dropped steadily since: 90->33->3.0->2.1 (start day radiation March 4th). Only once I had T-level tested.. March 4th.. it was 0.3.
So... sex-desire is now 0%... erectyle disfunction is 100% (tried viagra, no effect), penis got smaller (and not vey big before !! so... ).. Have a wife (and kids 4,8,10 yrs old).. So at 45 years of age in the middle of life, it's tough to have to face the end of sex.. I went to see an MO specialized in sexuality stuff... penis pump or injections would for sure help me, I was told.. got the most expensive penis pump on the market recommended from the MO.... 500 USD (3000 DKKR)... and.. ta daaa.. no effect at all.. Is this "normal" that a penis pump (best on the market) does not have an effect in a situation as me? Any advice to actually get an effect of that pump? Or is it most likely just the end of sex for me? Does injections work better? I know I was only given 2-3 years to live, but I plan to show them wrong, so hope to have some sex again.. I can succed to have orgasm via masturbation, but not ejaculation and no erection.. Feeling a bit down right now
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ED meds like viagra only work along with libido - they do not work without mental stimulation. But it may have a protective effect on the penile vasculature, so it's a good idea to take a low nightly dose anyway for the next 6 months.
I'm amazed that you paid that much for a penis pump - is it made of gold? To get a vacuum erectile device to work, you have to be able to create a vacuum. That might mean shaving some pubes so that it makes a tight seal against the base of the shaft. It has to work because it doesn't depend on your ability to get erections - the vacuum draws blood into your penis. They have a compression band that you can roll onto the base of your shaft to keep the blood in longer. Doing this daily can prevent permanent atrophy of penile tissue (= size loss).
Trimix injections always work too, unless you have a condition called "venous leak," which as a 45 yo would be very rare. Injections are your best bet for "on demand" use.
After radiation on a 45 yo man, it would be very rare to have radiation-induced ED. I admire your spunk to keep it up in spite of ADT-caused loss of libido.
Thanks TA.. Yeah, it's expensive.. BUT.. l got it refunded from the state... That's how it is to live in Denmark with healthcare paid over taxes Anyways.. I did shave the pube hairs, also ensuring good contact by applying glidant creme... And it does create a very good vacuum... But nothing happens .. so the O-ring (several sizes) that come with it for the shaft has not even been used yet.. I will try to take viagras as you suggest to see if that somehow helps my situation... Only had radiation for a week (5 times) now, so the issue was there before that too....
But as I hear you... even being on Eligard and Zytiga... it SHOULD work with the pump?.... I will continue trying to make it work, more patience etc..... or in other words: try "harder"
No. But after some minutes, I have to stop, since it then starts to hurt where the cylinder touches the skin (due to the vacuum).. but only feel very little from the penis itself.
It sounds like your expensive device is malfunctioning or leaking. It should create an even vacuum all over the shaft. Is the release valve stuck on the on position?
The pump does create the vacuum. I can stand up, and the vacuum makes it stay on. It only releases when pushing the release button. It is an automatic batteri driven pump but also has a manual pump, and both create the vacuum just fine. My penis just dont react to it, hence my post here.
Perhaps you did too many kegels, and the muscles going into the penis have clamped shut, preventing blood flow. A friend of mine is learning how to do "reverse kegels" in physical therapy. Maybe this is something to show your urologist.
I have tried some more.. And I actually did get an erection.. but it seems that I need to do some stimulation and mentally thinking that I really want sex - then it tends to be working.. The device (not of gold ) works fine.. But my treatment really does it's work (almost too) well it seems... Thanks for the advice...
Last thing.. I will try the nightly viagra too.. I have 100mg.. is that what you would consider low dose?
No - 20 mg Viagra would be low dose. 100 mg is an "on demand dose."
A VED should not require any mental thinking to blow up your penis like a balloon. It's purely mechanical. Something is wrong. It sounds like you can't relax the muscles that prevent blood from entering the penis. I recommend you show your urologist.
Oh ..... too bad you paid all that money for a penis pump ...... I would have given you one or free. Just needs a little clean up and it’d be good as new , no biggie.
Yayahahahaya yayahahahaya ... right about here is where I’d usually launch Into some of the accessories... ( his and hers ) basically triggering a Darryl intervention and killing another thread yayahahahaya ya. 😂😂😂😂😂
Welfare you say ...can you ask for a couple of those long tall blondes masseuse to be sent over for your “ welfare “ Yayahahahaya sounds right to me .....😊😊😊
I agree with TA, there should be some impact on the penis from the pump... sounds like you have some pressure if it’s hurting at the base. Does the pump stay on if you stand up and don’t hold it?
Also, what were your erections like prior to treatment? I’ve been told poor erections prior to treatment are the biggest predictor of erections after treatment. What T A days is very true... daily ED meds to increase blood flow, and some form of stimulation is important. As for desire, It is work... I find if I can focus on the enjoyment of my husband, even though I miss the full enjoyment myself, I can get some pleasure. Also, including toys in play can help... they always stay hard enough.
Does your wife participate in the pumping? Some get turned off by it... some embarrassed... I feel if you can make it part of play, it can help...
Also, my experience so far is that oncologists have not been open or able to talk directly about sex. Maybe it’s more about gay sex... I have found that other providers, and therapists have been more helpful... also reading books on prostate cancer and it’s impact on sex can help you (and your wife) feel less alone.
Just some of my thoughts ... keep talking! It helps!!
The vac pumps is only to bring health blood flow into your penis. Unless you use a restriction ring it will go back soft immediately. My therapist had me use the VAC 1/2 hr a day and use tri-mix injections every 5 days to keep my penis healthy. The injections will make you hard. As the URO removed all my nerves, and I had an allergy to the tri-mix I got an implant. Agree with TA, as a VAC that does the job is $40.00. Hand operated pump.
Mate, I was 43yo when I was diagnosed in Jan '17 with G9 S4 terminal prostate cancer (see my bio for extensive list of horrendous treatments). I tried all the ED equipment and non worked adequately.... I eventually had an implant (which was the worst operation I have ever had the displeasure of enduring) and whilst I am now able to get an erection whenever I want, I have absolutely no desire for sex so it is pointless. My advice, however hard (no pun intended) it is to accept, is that PCa is also a death sentence for your sex life.... you can still enjoy life without sex, once you accept this fact.
Hello Johnny, the point of a forum like this is to share our advice and acknowledge that it is obviously from the individuals' perspective, designed purely to assist when someone asks a question. I don't want to hear what you think about my advice and if you're stupid enough to read into my response that I believe everyone is in the same boat, then cancer is probably the least of your concerns. Congratulations for being the first person ever to have annoyed me on a "support" network. Gold star for you!
Kind of mean spirited don’t you think. Calling me stupid and the gold star stuff. The poor guy needs encouragement and hope and you told him that “prostate cancer is a death sentence for his sex life. I stand behind my statement that this is bad advice and he shouldn’t have to accept that his sex life is over. I’m living proof of that, sex once a week and I’m on Xtandi, Lupron, xgeva, megace, etc. My wife and I have figured out ways to have a satisfying sex life. For you to tell him Pc is a death sentence for his sex life is totally irresponsible. Guessing there are others here who are also defying the odds and getting it done. You write advice here is “designed purely to assist”. How are you assisting him by giving him advice that is obviously inaccurate? Sorry you’re butt hurt because I disagreed with you but I think your response was very reactive and emotional (hormone therapy?).
Lastly, did you even read my reply to him? It was full of encouragement and hope, and ideas. Isn’t that what he needs?
Hey Johnny, very happy you can maintain your “vigorous sex life”.... some of us can’t, and my “advice” was purely based on my experience... I wish I hadn’t wasted so long trying to get a sex life that could never be adequate after the treatments I endured. I didn’t call you stupid, but I’m leaning towards that being a fact. Let’s not engage anymore on this site. If you do want to continue things, let’s take it of the support network as I’d be more than happy to discuss our different viewpoints on a phonecall. Mate, the “butt” comment is great.... PM me, gold star, you tool!
“if you're stupid enough to read into my response that I believe everyone is in the same boat, then cancer is probably the least of your concerns.”
“I didn’t call you stupid, but I’m leaning towards that being a fact.”
Yes you did call me stupid, and then you basically did it again. And then the slam about cancer being the least of my worries. I was an aerospace engineer for 31 years. Maybe not the smartest bloke but...
As I said before, keep your emotional insults to yourself and don’t post discouraging and disheartening advice to people looking for hope and encouragement.
All the advice above has some merit - my two cents worth is that we have all enjoyed sex so much and found it to be so reliable, that the shock of it not working together with the loss of desire, something we never believed could ever happen to us, is really mind blowing - PTSD is a really overworked term, but I reckon it applies here.
I surely don’t have the answer, but I will say that I hate vacuum devices (funny how getting your shrunken testicles sucked into something will do that!!) - I suggest you give Trimix a go. It’s very life-affirming to see things on the move again, even if you can’t really be stuffed doing much with it!!
In the longer term, I think Cam73 has the rights of it - there’s a lot more to life than sex. But it’s good to get to that place under your own steam, rather than feeling a total loss of control.
When In see beautiful ladies about who in another life could be a partner for me,and me for her, the thought is pleasant but 72 after 10 years of ADT, chances of any relationship with ant female is zero, part from nurses at hospitals.
I was 62 when sex began to fade after start of ADT. Hardons became less possible, orgasms faded to nothing, then skin between Rodger's head and his shaft became very fragile, and finally the shaft filled with fibroids preventing a proper erection.I still get erections, but its like brass garden tap, and points down to ground, and totally useless except as a drain pipe.
The urologist mentioned a Rodger pump 10 years ago but I bet he has never tried one. I know of nobody who has, and I have never heard a good true report. But some men can have orgasm without erection or hardness, and it they ain't using a vibrator or Mahstah Bayting, then one could surmise they have rare partners with a huge amount of patience, maybe able to give an exquisite bloe-johb.
Many women find that there's only really one thing that finally satisfies them until next time and its a real man with a fully working Rodger. But then again, many women find men quite tedious, absurd, ridiculous, objectionable, horrid, uncool etc, etc, etc, and for them a vibrator kept under the pillow does all they need.
I found the end of sex easy to accept because but well before Pca and at 40 I found nobody out there willing to be a partner who did not have a litany of sexual, self esteem and mental problems herself.
But for a devoted young wife, and for a loving male partner, Pca is a disaster at 45, and it is a real test of character.
In 2009, at 62, at Dx I had a Gleason 9 high risk aggressive young man's type of Pca cells, and it was a lousy time, thinking I may not last a year. But I am fairly well now after a lot of treatments. But for me to expect to be able to have sex again is simply expecting too much.
Even though I am fit and healthy and moderately intelligent and financially independent, the thousands of ladies screaming for a man on dating sites just ain't interested. Of the thousands, maybe 3 or 4 in my area are supposedly available, and most want a younger man with all parts still able to work.
For a huge % of the men and women of the world, sex ends when the couple have had the children they wanted, and in fact the sex that they did have was anything but erotically pleasing. Huge emphasis in western nations has been placed on the having of sex, or prospect of having desire quenched with mutual pleasure, and the imagery used to sell products of many sorts often get men's attention because its a sexually provocative young lady promoting the product. So men think where's my plate of sex today?
After Pca, maybe your sex is like eating, and a well done Muff Dive to please a wife if all you can do.
There's nothing in it for the men, except that you have pleased your partner rather than leave her desire unfulfilled. I have known a couple of men whose wives left as soon as their man got Pca diagnosis. What of all the young soldiers who went away to war? Many came back to find their GF or wives were not interested, especially if the man had various parts missing.
Long ago, in my mid 30's to mid 40s I did meet women for whom sex was not very important because they felt very little pleasure, did not orgasm, and one of 33 I met got tetchy when I didn't propose marriage within a month. Her parents urged her to seek a man she could care for, and not give any thought about silly things like sex. She married an Navy man who had been a recent Navy plane crash and damaged so much, and sex was not important, and he got a huge pay-out from Govt, so the financial security was far more important than anything else. I didn't mind breaking up with her, at 30+ I needed someone I could have orgasmic sex with, and who could talk about anything, and not dominated by parents, who probably had a terrible "love life" .
I felt the same way at 55, but by then the options dwindled.
I am alive, not dead, and I don't feel bad because I didn't have very much to do with women in my life compared to many other men. Sooner or later you will find out just how tolerant your partner is about you getting Pca. And after 45, many women get Brca and have other problems like the menopause, so life is handing you quite a trial to deal with.
I worked for 20 years as a self employed builder specializing in house extensions and I dealt with mainly successful couples who had coped with adversity, and not all had a perfect marriage, but there they were, holding hands and signing a contract with me, and I felt so honored to work for them.
Right now, a nice one hour bicycle ride is better than trying to have sex with anyone.
I was diagnosed too late with inoperable Pca, but Psa was low, and I should have been diagnosed 4 years earlier, then an RP may have been possible with enough nerve sparing in RP that may have allowed me to retain my sexuality. Some surgeons could spare all nerves wrapped around PG, and these control sex functions. But I might have not had ADT, if the RP was fully successful. Unfortunately, even those of us who had regular Psa checks each year for 10 years before Dx, can find they are going to have a long fight with Pca. I don't know anyone here who had a successful RP and they never have any more bother with Pca.
I wish you the the best in working out your bother with your sex life and partner.
Hi Don’t give up. The trick is to pump a bit an release a little. Repeat.
Inflating it step by step. Training helps. Use the device everyday for 20 minutes or so in the beginning.
Your penis needs to adjust to being inflated this way. Gradually it will expand and get back close to former size. But it take some time, so don’t give up.
You may get some bruises, afterward in the beginning.
Even after your get familiar with using the device it may still take up to 5 minutes to get it fully erected and hard. (Pump and release a bit, pump and release a bit -so the penis tissue expand gradually)
It’s not like normally inflating something like a car tire of a beach ball.
Remember the rubber bands to keep the blood in the erection (so it stays hard) takes some time to get used too.
Newer use the pump to inflate your penis while having a rubber band on at the same time.
In DK Trimix is not an option but Caverjet is. Use the pump device a bit before doing the injection itself. It makes the injection easier. Start with the lowest dose and see what happens. Beware of erections longer than 4 hours.
A walk or ice can sometimes shorten it if you have long lasting erections)
(Yes I now walking in that state seems awkward...)
Check out franktalk.com -the users there are very helpful with advice.
There should be a set of rubber rings that change the size of the opening. Use the smallest opening possible and lube...without the lube, it’s difficult to get out of it (kind of like a Chinese finger trap). But if the opening is to big, the results are very inconsistent...
I started with a penis pump and you have to be careful you do not over pump! I just did not like the whole concept.....So I went back to MD Anderson and got a penile implant pump....You end up with three balls instead of two....it is a hoot.....you can take a snooze just make sure she knows which one to squeeze to let it back down....! Blue Skies....Sky King and Penny (woof) Being in the USA MD Anderson got medicare to pay for it...(standard medicare)
Hey Denmark! I did the pump, injections, suppositories, all of it for a few years. None of it was 100% and eventually the pump broke down the veins at the base of my penis and began pulling them into the vacuum chamber, then when the snap ring came down it hurt! I was diagnosed at 47 so this was very challenging for my wife and I as we had a very vigorous sex life in our 25 year marriage (at the time, now 30).
I bit the bullet and had the state of the art 3 piece penile pump put in. Best thing I ever did. Ya it’s painful, and irreversible, but it is sex on demand within 30 seconds and pain free. Not quite as long but hard as a rock and consistent. My wife is happy. As far as people saying they have no desire, Ive been on Lupron and Xtandi solid for 3 years and off and on for 8 years. I don’t have the same desire as I used to but stay with it. We have sex once a week and I still orgasm most every time because organs is in your head. Oral sex is very helpful. Who can’t get at least a little excited after going down on his wife and getting her off. Don’t give up! And my advice, see about the pump. Best thing I ever did.
Thanks for your post. I think most men on here have been through one form or another what you’re experiencing post RP. Unfortunately, we often don’t get the memo until the realities of failed launches occur and we’re left disappointed or ashamed. I felt tremendous guilt that my wife was with me in her sexual prime and even said I’d understand if she needed a hall pass. She smacked me up side the head and ultimately we decided to get an implant. It’s not perfect but it’s good enough. It’s a guaranteed hardon and I’m ready to go in 5 seconds. I no longer have orgasms but she does and we both enjoy the intimacy. I’m cool with that and accept it’s not all about me. I like the saying “happy wife, happy life”.
Again, thank you for your post. I feel it’s important to give your grief a voice and process your pain in order to find your way through this ordeal. Now get busy living. 😊
Just adding to what others have said. I bought a pump at a sex shop for $30 USD. You have to either clip or shave your pubic hair. You have to put a ring of gel lubricant on the rim of the pump to get a good seal and create a vacuum. Some devices have a rubber band to slip down on your penis once it is full of blood. That holds the blood in to allow penetration or masturbation.
I am currently trying injection. In the doctor's office I got an erection that was good, rigid (and lasted five uncomfortable hours--what a total waste!!!) Today I received my syringes so I can give that a try, too.
Two men in my prostate cancer support group have had implants are are very happy with the results. Their partners report happiness too.
You're not trying to use the pump lying down are you? I found it totally ineffective then, sitting up works fine for me. The injections work way better though, and are less hassle. I way prefer them, but pump up occasionally on the off days just to try and overachieve.
Had RP and Radiation. Tried the pump but as others said, it's just to get the blood flow going, not really for sex. Tried it and it does not work. Trimix did the trick and I haven't looked back since. I am now 54 and have been using it for 2 years. I use an autoinjector which is easy to use and i'm ready to go in a few minutes. And, I don't have to worry about losing the erection. Best thing i ever did.
You sound like a great dude. My advice Is forget the sex ( you can still be loving and sexual with your Partner. I am 74 with a 36 year old girl friend. That's more efective than a pump, but I still can't get an errection. Work out as hard as you can and give lots of affection to your lady.
Hi all - and thanks to everyone for taking time to reply to me (both the encouraging and the opposite). I know that my treatment is a chemical castration and hence killing more or less everything wrt. libido, sex, erections, ejaculations etc. and might at some point have to accept this. But at 45 years of age, I am not resigning without a fight.
To answer some of the things that came up - also for "networking" I can say that:
1) I actually have managed now to get erection using the expensive "gold" pump. I don't know why it started to work, because I didn't change anything as how to operate it. The only change was that I tried to "warm" it (the Jackson) up a little bit first and mentally imagined having sex.. Seemed to do the trick.
2) The pump set included many things: Both manual and automatic pump function, 5-6 O-rings in different sizes (even though mine is not very big, I took the largest one and I cannot imagine how to use the smaller ones - they must really hurt!!), it has a couple of different "attachments" (one more rubbery - sorry about my English, bear over with me ), lubrication gel, a nice rocket-like tip to facilitate putting on the O-ring etc.
3) I also shaved off pubic hair.
So the whole thing about my post here was that it was weird that it did not work to get an erection effect. But - as mentioned above, I found a way (warming the penis up and mentally thinking of sex)..
I know that sex will never be the same anymore, but I want to try see how far I can get things to work. I really appreciate the advice and inputs regarding injections and implants. It kept me thinking that this might be something I would try to approach too since it is actually not very sexy to sit and pump before sex and see a blue weener and kids finding the device and have to bring it on vacations etc. There the other options seem be more convenient.
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Anyways.. I did shave the pube hairs, also ensuring good contact by applying glidant creme... And it does create a very good vacuum... But nothing happens .. so the O-ring (several sizes) that come with it for the shaft has not even been used yet.. I will try to take viagras as you suggest to see if that somehow helps my situation... Only had radiation for a week (5 times) now, so the issue was there before that too.... 
) works fine.. But my treatment really does it's work (almost too) well it seems... Thanks for the advice... 
Another positive lymph node
ADT not working?
PSA and Testosterone update
Time to radiation treatment
