Is there sex after ADT?: A good review... - Advanced Prostate...

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Is there sex after ADT?

Tall_Allen profile image
118 Replies

A good review article on the current state of our knowledge, focussing on the entire spectrum of sexual enjoyment and not just erectile function. They make clear that the enjoyment of sex is a product of many factors, including pre-ADT sexual function, habitual sex frequency, testosterone (amounts needed vary widely), erectile function, partner enthusiasm, sexual aid use, non-penetrative intimacy, physical fitness, sleep, masculine self-image, depression, and novelty.

It is worth noting that Richard Wassersug is one of the most cited researchers on these issues. I hope he will comment.

sciencedirect.com/science/a...

(If you create a free sign-in, you should get free access for a couple of months. If that doesn't work, see Dr. Wassersug's post below.)

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GoBucks profile image
GoBucks

Hey Doc, will I be able to play the piano?

Kaliber profile image
Kaliber in reply toGoBucks

Yayahahahaya .... or “ junk in the box “ SNL ....

😂😂😂😂😂😂

Gearhead profile image
Gearhead

Tall_Allen: Do I understand correctly that, unless we have a Sciencedirect account, we must purchase this article in order to read it? And it's inappropriate for you to link to the full article if you have it? The abstract doesn't really summarize their conclusions. Thanks.

Tall_Allen profile image
Tall_Allen in reply toGearhead

Try signing up (for free) with Sciencedirect. When I click on the link, I get the full article.

Gearhead profile image
Gearhead in reply toTall_Allen

I think it requires more than just signing up. Perhaps when you click the link, Sciencedirect recognizes that an account is associated your address. Elsavier is in the business of selling journal subscriptions and not distributing journal articles for free.

Tall_Allen profile image
Tall_Allen in reply toGearhead

I didn't pay a dime. Try signing up.

tango65 profile image
tango65 in reply toGearhead

This is the link to the free full article. Hope it works

sci-hub.tw/https://www.scie...

Gearhead profile image
Gearhead in reply totango65

tango: Yes, that works for me. Thank you. Of course this isn't Elsavier or Sciencedirect. I thinks this gets into issues of research paper ownership and copyright, which is probably way outside the scope of what we should be discussing here. Any idea how Tall_Allen can access the Sciencedirect version by just signing up and clicking?

Tall_Allen profile image
Tall_Allen in reply toGearhead

Did you try signing up? Many journals allow a limited # of views/month or limited time access if you sign up for free.

Gearhead profile image
Gearhead in reply toTall_Allen

Yes I've been registered with Elsavier and Sciencedirect for some time, and I purchase research publications occasionally. They send me "You might be interested in these recent publications" emails about once a month. Perhaps this is the explanation: my limited-time access expired long ago.

Tall_Allen profile image
Tall_Allen in reply toGearhead

Hmm. I get access to the whole article (as pdf if I want it). I'm not sure why you don't. Maybe your cookies expired. Try deleting the elsevier cookies.

Boywonder56 profile image
Boywonder56 in reply toTall_Allen

I hate it when my cookies expire.....

tango65 profile image
tango65 in reply toGearhead

Perhaps he can access the abstract but not the PDF with the whole article. Using his link I could access the abstract and then using Sci-hub the whole article. I have an account with Sciencedirect and after signing in they wanted $ 35.95 for the PDF.

I believed you were interested in the whole article.

Max225 profile image
Max225 in reply totango65

Thanks, tango65. It did work.

Wassersug profile image
Wassersug

Hello Tall_Allen et al.,

As you know, I don't often post on this lists, but I do get energized to do so when I see my name mentioned. :-)

The article on "sex after ADT" was the product of Dr. Erik Wibowo and his colleagues in New Zealand and Australia. Dr. Wibowo was my graduate student and post doc, but the review that he and his colleagues just published was all their work. I saw a very rough first draft, but the paper grew greatly after that.

I personally think it is great paper for its breadth and depth. I have blog entry on it going up on the LIFEonADT.com and we plan to have the paper freely accessible on that site as well at least into September.

I agree with you summary of the paper. The core message is that complete loss of sexual interest and sexual performance is very common with ADT, but not inevitable. Various factors can help sustain some level of sexual activity for patients on ADT. These factors include the overall health of the patient, his age, his relationship with his partner before ADT, and the couple’s willingness to explore novel sexual practices and aids.

What I would add to that is that patients, who have a partner and are wiling to explore alternative sexual practice, read the paper along with their partners. Both patients and their partners have to be on board with exploring options.

Richard W.

Patrick-Turner profile image
Patrick-Turner in reply toWassersug

A good read about sex after starting ADT. First thing to happen are hot flushes and reduction of daily itch to either jerk off or have sex with a partner. I found desire to have a partner remained strong for about 3 years because Rodger still worked. But then Rodger could not feel any pleasure at all and skin joining head and shaft became fragile and prone to tearing sometimes without any activities other than leading a completely sex-free life.

Getting a female partner for me has been impossible for last 20 years, because female interest in sex dries right up at about 55, due to they "pause from men", ie have a menopause with hormone changes which can make them allergic to all masculine things in the world, especially to any man with a hard on, giving them the wink, and saying "How 'bout it darlin?"

After 4 years of ADT any capability to have a proper hard-on disappears, and the sponge tissue that inflates Rodger to a useful height fills up with fibroids and full erections are impossible, even though some parts of Rodger get hard, but shape of hardon is like brass garden tap and quite repulsive, so the only thing a man can do is go for a well done Muff-Dive, or wield a vibrator just how Miss Fanny likes it done, if she is at all capable of having an orgasm.

I now enjoy a good ride on a bicycle, and a ride on a woman is totally not feasible. I cannot find a woman who could cycle with me, and be friends, and who also could not care less about ever having sex again. Having this Pca pox means that few ladies would ever see me as a good catch for a relationship. OK, so, NO MORE women will ever be part of my life, and I really can't complain, because it seems natural; if a man has a good relationship before getting Pca and after, then he's lucky, but I found it impossible the get any partner who would "stay on the porch" and remain committed for many years. There are ppl over 60 who claim to be having sex, but maybe they are telling fibs. I discovered before I got Pca that I didn't need love. It sure may have been nice if that had happened, but it didn't, and that's how it is for millions of ppl. After my father died from melanoma at 60, my mother of 55 never bonked another man for her next 43 years of life. She was one of the sanest women I ever knew.

It should be a glorious day tomorrow for a 60km cycle ride, and I don't mind cycling alone, and maybe getting lunch at an Italian restaurant at about 1/2 way.

At least one of us at this group could not care less about sex.

Patrick Turner.

E2-Guy profile image
E2-Guy in reply toPatrick-Turner

Perhaps you should plan a trip to Thailand!

Shorter profile image
Shorter in reply toPatrick-Turner

My wife is younger than me and I had sex after 60. Until 62 to be exact. Then I had RALP. Rodger is still nowhere to be found, but still tried to have interest. Rodger just could not find his way out of the cave. ADT took care of the interest. As strongly as Rodger is being pulled into his cave, Thailand is not out of the question, just to relieve the tension.

Patrick-Turner profile image
Patrick-Turner in reply toShorter

I could have had sex until 3 years after start of ADT in 2010, at age 65 in 2013.

After that, basically not exciting at all, and by 67, with continuing ADT, Rodger became a drain pipe only.

Going to Thailand or anywhere in Asia to find a young lady to be a bride has never ever been an attractive to me. During my search for a female partner I met a few Filipino ladies who had married men twice their age, and when they were 50, their Oz husbands had died, so they were left alone to care for the 3 teenagers without a dad, and often kids were quite feral, and unmanageable and the ladies were a pale shadow of who they once were, and for me, partnering was about bonding with an equal in terms of education, ability to commit, zest for life with a man etc, and not with someone of a different race and huge difference in age. I did see some successes where the man was only 10 years older than lady, but real old guys marrying an Asian to be a sex slave and housekeeper-maid was never what I wanted. I had no aversion to doing all my own housework.

I made one exception to a lady I did marry because to implement any set of ideals with someone good enough was impossible, and she was typist on half my pay, working for Prime Minister's offices. We married when she was 21 and I was 28, and it worked fine for 18 months and then she completely melted down psychologically, and began to hate all things in her life, job, me, her mother, the house, house work, etc, etc, and she fled in terror to Perth, 5,000km away, to begin a new life and pretend I never ever had existed. That suited me. If she could not be a wife as she insisted, no use hangin' around. That told me to never marry anyone until they meet my simple humble expectations but at 30 I thought marriage was likely to never happen again and it didn't, and was not necessary for me to be happy, without the silly fights in courts over money.

I worked in building trades, and I rarely ever met many women, except in pubs, and most women who went to pubs were tarts.

It seemed to me western women wanted complete freedom under feminist ideology and I didn't mind all that, and insisted I would not have a joint bank account because I insisted they maintain their financial independence, and I did not need them to pay one cent toward the expenses of buying a house and renovating it. But what comes with women's rights in marriage is their duty of care, after the deal is made at the alter, and that's where all the ladies I met failed to consider, let alone practice like their mothers and grandmothers. So leaving town late at night was a breaking of contract, so for about $1,100, I pursued divorce and property settlement which she accepted OK. Back in 1979, that expense was about $20,000 in today's dough.

I offered her 1/10 of the value of house when I bought it with my money. Her lawyer and mine agreed it was a good deal. She bought a new motorcycle with the loot.

We did not have any kids.

But I found I could enjoy company of some ladies who were more settled in my town of Canberra, and without any of the contractual obligations, and one of the best relationships I had was someone my age at 40 with whom I spent 3 years, and it was like a fun filled 3 years with plenty of sex, and we both helped each other live better, and there was not one fight. Parting was amicable after I got poor when a couple of things went bad in my business, but she got pregnant to some other man, so we never could restart our affair.

After 45, the ladies became less and less able to relate to any man, let alone me.

The pickings were very ordinary.

Groucho Marx once said, "There's nothing wrong with masturbation, you meet the best class of women.."

I got through my youth without being completely ripped off and destroyed by divorce that seemed to be endemic in my peer group.

I never had an obsessive compulsive need to bonk women. I never went to a brothel. I'd be rich if I had $100 for all the girls I knocked back. They just did not make me feel desire by the way they thought, acted and felt about all things needing to be taken seriously about life.

And none of the ladies I met liked riding a bicycle. A few liked being pillion on the motorcycles I had but they "grew sick of that" as well, and turned out to like to ride around on bikes of other men. Bye-bye darlin.

Youth was never completely happy time in anyone's life; everyone wanted a lot, and struggled to get it, with many not getting it, and floundering about with drugs, booze, and bad financial choices, and bad partner choices.

There was a fog an hour ago, but now its Bloo Sky, and I'll get out later to do a nice little 60km cycle ride. And I don't expect much company, and am happy alone, and its nice to be alive.

Patrick Turner.

Shorter profile image
Shorter in reply toPatrick-Turner

Patrick, I was making a joke but not entirely. My Rodger can't get itself out of the cave it has pulled itself into. A trip to Thialand would mean something different for me. The urethra part of my Rodger had too much removed to be male again. The title "Shorter" should probably been "Gone"

Tall_Allen profile image
Tall_Allen in reply toShorter

Has nothing to do with how much urethra was removed. It shrinks from lack of innervation and blood supply.

Shorter profile image
Shorter in reply toTall_Allen

Tall-Allen, I respect you a lot. On this one I have to respectfully disagree. You have to have enough downtime for that to happen. I was having spontaneous erections before surgery and at 4 months post surgery. I aggressively tried to get it back. Believe me I have pressed my urologist to the point he tried to get my PCP to give me an anti-depressant. He took out over 3 inches of urethra. I was not a porn star to begin with. The last time I tried to use a vacuum pump and cock ring and keep an Erect Rodger at slightly over 3 inches while pulling my legs up to about 30-40 degrees from horizontal I bled the next 2 bowel movements. (The reason I did this is because horizontal I could still get an erection almost to my original length. The problem is much much worse when I bend over or sit. I don't sit down much anymore) Anyway after doing that I had shooting pain inside my gut for 3 days . I had pain in my hips and back for about a week. My gut up to the stomach level felt like something was torn for a month. I had successfully got Rodger to almost 3" several times previous, but 1/4" more was too much. Rodger literally wants to pull inside out. I have had this problem from the day of my surgery March 2018. I have seen someone who does implants and was not given much hope. I have read about and talked to hundreds on Frank Talk. I have turned over every rock I could think about including the Thailand one. When I explained what I am experiencing to my PCP, he literally turned white, told me to come back in 3 months, and left the room.

Tall_Allen profile image
Tall_Allen in reply toShorter

You are ignoring basic anatomy. Gravity pulls the bladder down - it does not pull the penis in no matter how much of the urethra is taken out. Don't believe me - believe John Mulhall, the foremost expert about these matters:

"Several theories have been postulated, some with and some with no scientific foundation. One of the commonest explanations given by urologists to patients is that the extirpation of the prostate results in shortening of the urethra by several centimetres, which results in penile shortening. However, the urethra is fixed at the urogenital diaphragm and cannot easily be retracted inwards, and the bladder is in fact brought down to the urethra at this level to create the vesico‐urethral anastomosis. The reasons for penile volume changes can be readily explained by appreciating four concepts: (i) penile structural anatomy; (ii) cavernosal nerve injury‐associated structural alterations in the penis; (iii) cavernosal hypoxia‐induced structural changes in the penis; and (iv) sympathetic hyper‐innervation (competitive sprouting)."

bjui-journals.onlinelibrary...

Maybe set up a phone consult with John Mulhall at MSK.

Shorter profile image
Shorter in reply toTall_Allen

I have read all this before Allen. We have discussed it before. I have studied the anatomy part of it to death. I believe there is a point beyond which the urethra will not stretch. For almost a year after my surgery I couldn't sit down without wetting everything. I believe from pulling against the urethral sphincter. I would squirt when I sit down and squirt again when I raised back up. I could feel the urethra pulling inside me. I had no other incontinence issue. The pain started almost immediately after the surgery until now. My tunica has not shrunk, at least not before ADT 4 months ago, because I could get almost to my original erect length with a vacuum pump as long as I lay flat on the bed. Bending any at all pulls it in even with a battery operated vacuum pump pulling on it continuously. I have talked with 2 shrinks and driven my local doctors nuts. I think my surgeon is a afraid of a lawsuit. I have a consult with a doctor in Kansas City in October and have a green light from both shrinks to do WHATEVER is necessary! Suicide is my only other way out and I refuse to go there! I want to live, and will not stop being the squeaky wheel until this gets resolved. Sorry for my rant.

Tall_Allen profile image
Tall_Allen in reply toShorter

You seem to ignore some basic anatomy. The urethra does not pull the penis in - the bladder, which is unsupported, moves down. Look at Google images of male genitourinary anatomy to check out what Mulhall is saying. If it were only because of urethral shortening, why would ADT have made it worse? If it were simply the penis moving up, there would be no change in girth. But, judging by other men I've talked to who experience the same problem, the loss is both in length and girth - for one guy, there wasn't enough to point down into the toilet - he can only pee in the shower or in a urinal.

Have you tried a traction device? I've read varying reports, and it's a lot of work.If you can't get a consult with Mulhall, try Irwin Goldstein in San Diego.

Shorter profile image
Shorter in reply toTall_Allen

The erections before kept it stretched part of the time and not as much time pulled in under under tension so to speak. Tadalofil helped that happen even more often. ADT has only hurt because it stopped the part time relief. It is worse now because it is pulled in and under tension almost all of the time. I used traction for almost 9 months, 5 to 6 days a week, 2 to 4 hours each day. I had to buy a stretcher made to accommodate a micro penis, and it almost would not work.

I have the same thing with the toilet. I have to lean forward or put something in front of it to divert the stream down. A urinal is almost useless. I wet the inside of my pants, even if I lean forward. I also use the shower sometimes. My girth is not less when erect, maybe a little when flaccid.

I will get some relief from where I am going, even if it means removal and a urethra reroute. I am to the point if it takes selling my house to pay for it, so be it.

lewicki profile image
lewicki in reply toTall_Allen

Was able to open this and print it.

This link worked.

Patrick-Turner profile image
Patrick-Turner in reply toShorter

I didn't have an RP, because too much Pca was outside the capsule, so penile urethra remained at same normal length and able to painlessly stretch with a hardon until effects of long term ADT caused cavenosum to fill with fibroids and prevent dick length increase.

Your post illustrates the possible real problem men have with ED after an RP. Many men have no idea this shit will happen to them after an RP. Tall Allen is right about other causes of dick shortening and penile deformity because blood flows are altered. Even though dick it may get hard, so its a useless drain pipe and a displeasure for a man to behold, and no matter how the offending appendage is handled or stimulated, no pleasure is possible. The complex nerves required to trigger an orgasm seem to be disabled.

The idea of vacuum pump and cock ring is completely repulsive to me.

But a urologist suggested I use these silly things which I bet he's never tried on himself.

So, men should be prepared to be a real man and Just Give Up Sex when the time comes after an RP or when he has years on ADT. I have known men whose wife left as soon as their man got diagnosed with Pca. The man is better off without such a woman! Would you leave your wife if she got breast cancer?

But getting another new woman from Thailand is also problematic, because what she may want is a good regular rogering to be happy, and denying her that is cruel to me; but she may get to live in USA instead of Thailand and have a better living standard.

I could never tolerate a loveless marriage.

Tall Allen mentions more grisly details below about penile dysfunction causes and is right.

I used to be a very hot rooster, OK, But now I am just a feather duster.

But unlike so many men my age and unlike all the women my age, I can cycle 200km a week, and its better than sex, and I have no other co-morbidities apart from Pca,

Women suffer huge reduction of their sexual capabilities as they age and their hormones changes. Basically, all our sex bits shrivel up and become non usable, and a mature man should forget about what does not work and focus on what does work, and not hope for some miraculous extension of time for dick use.

There are prosthetic solutions to ED bothers, but these may not work for all men who have had some dick shortening ( often 25mm ) after an RP. But even with erectible prosthesis, nobody has ever explained to me if the sexual dick use is still able to feel any pleasure or lead to an orgasm, so why spend $40,000 on prosthesis? However, I have known men to get a prosthetic implant to give them continence, where they are incontinent after an RP. I had EBRT and IMRT to that area down below and I am still fully continent, but that could change, as the long term effects of RT begin to have effects. In effect, my Pca treatment to premature aging, and any surgical solution to my lack of sexual function or future incontinence may be a waste of dough, and leave me worse off.

Long ago, I could hold 600ml of pee without bursting, but for last many years I need a pee with 250ml and I get up at night 4 times. The disturbance down below makes me pee more. Its another thing I cannot change much. I take Tamulosin to stop swelling of my existing PG which is a radiated mess of a thing, or else it takes too long to pee, and bladder has to work too hard to expel pee.

I can handle all the things that have happened without whingeing much; one gets old, and body changes, and docs cause some of it, but they have got me living a lot longer past my natural untreated use-by date. I sure don't need a woman in my life. It would be nice to have one, but they are UnobTanium and/or Knot Interested, and I see no reason to make a fool of myself by wanting anything else other than a happy simple life where I know being 30 again is utterly impossible.

Patrick Turner.

Shorter profile image
Shorter in reply toPatrick-Turner

Hi Patrick, Thanks for the reply. I know I almost sound like a lunatic, but I would give away my house if I could get back to within 25mm from where I started. I lost almost 3 times that much. I understood the possibility for loss of sex. I can live with that. It is the flaccid length I lost that is driving me nuts. I can't ride my motorcycle anymore because of the pain, almost can't ride in a car. I don't even sit down much anymore. At least when I stand it is tolerable.

I really don't know what was done inside me during the surgery. I also know there are not many with it this bad. I have talked to a LOT of people on a LOT of forums and in person. My best friend and my wife's sister were nurses for many years. I just can't live this way much longer. It is a long drive to Kansas City, but I am getting no hope locally. It has to stop. It was already bad before ADT, but now it is worse. Another year like this I may well become the lunatic I already sound like.

Two Letters from shrinks are required to do what may have to happen. I have one letter and the other shrink says she is going to write the second one. I am praying Kansas City contains some relief.

Tall_Allen profile image
Tall_Allen in reply toShorter

I had a thought. Maybe you had an adhesion or an anatomic abnormality that is preventing your bladder from descending. It's easy to find out. Just drink a lot of water (or an iodine contrast fluid), and have a fluoroscopy done while standing. If your bladder is being caught on something, it will be easy to see. If so, it may be surgically correctible.

Patrick-Turner profile image
Patrick-Turner in reply toShorter

That's a sad story, for sure, about a bad medical outcome. Methinks you not insane, but victim of a lousy surgeon. Maybe Tall A is right about getting CT scan with iodine contrast agent to see what might be cause of pains. Maybe MRI might show something wrong down below. I have never met anyone who has had RP with your problems. You do need to sort it out, because it sounds like your QOL is badly affected. From what I have read, many men lose 25mm after an RP, but 75mm? Of course all the men I know who had RP also had ED.

One man was so fearful that his Pca was going to spread after being diagnosed he had penile urethra terminated low down, bladder removed, and both ureters from kidneys joined to a stoma on low side of abdomen, so a plastic bag could be fitted to collect pee, so his time in a toilet was very much reduced. And he could hold a litre before needing to empty bag. And no getting up 5 times at night to pee, and no pains. No RP or RT or ADT or chemo because these things have a high failure rate. It probably cost a lot, but I spoke to him 5 years later and he didn't want to discuss it because it had worked out so well and talking about it again took him back to a time of pain and anxieties.

I used to cycle for a few years with a friend who had RP that went fairly well. But he was not fully continent, and would leak a bit. Most men don't talk about it, or having to wear a nappy. But my friend stopped cycling at 70 when he got a bug after spending a month in Europe, but he still needed RT later when Psa crept up from 0.01 to 0.4 over many years. He's 80 now, and OK. He's had one knee joint replaced, now wants the other one done, and all that went well, like mine did, so there are good medical interventions, they ain't all bad.

Patrick Turner.

Shorter profile image
Shorter in reply toPatrick-Turner

Tall-Allen, I have not had a flouroscopy while standing. I may ask about that. The real issue I have with this is when I bend over or sit. Don't have much protruding when standing, but everything pulls tight when I bend over. I have a Grand Marque that I drive. I have to lean the seat way back to be able to do it. If I sit straight up, I couldn't stand it. I now let my wife drive if she is with me and lay the passenger seat almost back to a bed position. This also precludes flying anywhere. I used to fly all over the country. I had a free fight to Israel last year I didn't take. No way can I make it in an airplane.

Patrick, I had a Axumin PET scan and a CT scan when they were setting up for the salvage Radiation. I complained enough about the problem that they all knew about it. None of the scans used Iodine, unless it was part of the Axumun scan. Local doctors are a waste of my time. I don't have any incontinence issues, but when I have a bowel movement, I can't control it and have to lean forward so I don't shoot out on the floor. It doesn't matter if I empty my bladder first.

I don't want cancer to return, but at this point I am where the person you mentioned that had it all removed was. I want my life back. I am ready for an extreme fix, if that is what it takes! I am trying to set up an appointment with a urologist several miles to my North, but my real answers may well come from Kansas City.

Thanks to both of you for trying to help!

Tall_Allen profile image
Tall_Allen in reply toShorter

I wasn't clear, I guess. Getting Xrayed while standing and with a full bladder is the only way for you to know if your bladder is not coming down as it's supposed to. You believe your bladder is pulling up your shortened urethra. The only way that can happen is if something structural is keeping your bladder from descending. Drinking water or iodine contrast will normally make your bladder descend. If it doesn't, the fluoroscope will tell you why.

The scans given while lying down, like a CT, MRI, or PET will not show this. Only a standing up scan will. It doesn't matter if it is worse when you bend over or sit. You insist your penis is being pulled up. That is normally impossible. I'm showing you a way to prove that it's true.

Frankly, I doubt it, but I think you owe it to yourself to prove or disprove your perceptions.

Shorter profile image
Shorter in reply toTall_Allen

Thanks Tall_Allen,

I will ask about this procedure at a new urologist. I am DONE with the old one. My robotic surgery was supposed to take 3.5 hours while strapped in and upended. It took 5 hours, so I don't know what really happened while I was operated on. The urologist I am trying to get in to see is in a pretty big Oncology center North of here where I had my PET scan done, so they should be able to do it. I've had several surgeries including neck surgery. I have never had a surgery as LIFE CHANGING as this! I am fully prepared to do whatever it takes to get past this.

Tall_Allen profile image
Tall_Allen in reply toShorter

You can probably get this done in your local PCP's office. This isn't complicated and it's not rocket science. It will take 5 minutes and is very low tech. If it is a group practice, many have in-house X-rays.

Shorter profile image
Shorter in reply toTall_Allen

Ok, thanks again.

Shorter profile image
Shorter in reply toTall_Allen

Hi Tall Allen,

I don't know if you will still receive this after 2 weeks, but here goes:

I had a visit with my new Urology Oncologist a couple days ago. I explained what I am going though, let him read this post for what you and I have discussed and then he examined me. He was able to see the problem firsthand.

He said so many times how sorry he was that I had to endure this that one would have thought he did the surgery. (He is also a surgeon) He said most men lose about an inch, but not this bad.

He agreed with what you wrote and believes either my bladder has adhered to something or is blocked. He said what you suggested would prove it, but not fix it. Anyway, he didn't seem to have any better idea how to fix it than what is probably going to happen in Kansas City. I have a consult with a doctor there mid October.

I know I am an outlier, but I have talked with a few others on forums over the last 2 years that have lost about 2". In hindsight, they probably have an issue like mine.

Tall_Allen profile image
Tall_Allen in reply toShorter

If you know what is blocking the bladder from moving downwards, it can potentially be fixed surgically. The first step is to get the fluoroscopy done while standing. Fluoroscopes are widely available and only take a couple of minutes. My GP and my orthopedist have one in their office - all hospitals do. Why not have it done?

Shorter profile image
Shorter in reply toTall_Allen

Hi Tall Allen

I appreciate what you are trying to do, I really do. I have been looking for a way to fix this for almost 2 and a half years. I have probably been to every English speaking prostate cancer website there is and had discussions on them. I talked to several people on FrankTalk. I have talked with several doctors, including one that does implants. Everyone has tried to tell me I don’t understand anatomy and what I describe can’t actually be happening. They all look at me like I have 2 heads. What I am going to say here might seem like a madman, but the ones that get to decide that don’t think so.

I tried researching what land mine survivors and what female to male transgenders do, looking for the cure. There isn’t a stone anywhere that I could think of that I didn’t turn over and look underneath. You probably don’t remember it, but we had this conversation several months back, except for the Fluoroscope suggestion. What you just wrote finally got a doctor to believe me and do a proper exam, minus the scan. Thank you for that. Even a year ago, I might try harder to get a doctor to do what you suggest. If I lived in a big city this might all be different.

About a year ago I almost got back to full length in a vaccuum pump. The experience I described above made me stop trying. At this point I figure with where I was before ADT, and how long I have been without erections now it, would be like resurrecting the dead. I don’t even care about sex anymore! There is no guarantee that after a second surgery I would be 100% better or that this wouldn’t happen again. I will absolutely NOT have surgery done in Fort Smith for anything ever again!

If I could get a doctor to do what you say it would probably also mean an MRI and who knows what before they actually open me up to look. I am extremely claustrophobic and barely withstood the radiation I did this year. I thought I was going to lose it during the axumin PET scan I had earlier. I did climb out of one of the CT scans they gave me. I was never before as claustrophobic as I am since the surgery or experience panic attacks before it either.

I know full well the path I am on is a very extreme one. Where I am going with this requires that you either are, or appear to be transgender to 2 different shrinks, regardless of whether you are or not. (both of my shrinks know the real reason) They have to access your sanity for months before you can get in line for this surgery . I am already in line to get the fix. If I get out of that line the whole process starts over and then they wonder why you backed out. I am going to have trouble waiting until I can get surgery as it is.

The surgery I’m getting is completely cosmetic from what they normally do, but it does reroute the urethra. I actually found out about this surgery on a Eunuch website. Like I said, I’ve been everywhere online. By the way, my wife is onboard with this as well as my preacher and friend who used to be a nurse.

I don’t expect you to understand it, but this has to stop! My only alternative is suicide. I have an 8 month old grandson I want to spend time with. At present, I can’t even enjoy that.

Like Popeye used to say “I’ve had all I can stanz and I can stanz no more!”

Sincerely,

Mike

Tall_Allen profile image
Tall_Allen in reply toShorter

Not an MRI or a CT - I'm suggesting a very simple fluoroscope (which is just an Xray) - you have to be standing and your bladder has to be comfortably full. You can drink an iodine contrast. This isn't a big deal. I don't understand why you haven't done this already. Any hospital has them, so do many orthopedists and PCPs. Just call your PCP and tell him you want a fluoroscope of your full bladder while standing. If he doesn't have one at his office, he'll let you know one nearby. It takes about 5 minutes and the tech will have the results instantly. Once you know what is obstructing your bladder, you can figure out how to deal with it.

Shorter profile image
Shorter in reply toTall_Allen

Tall Allen,

Getting into most doctors here takes awhile. What I said about the MRI is because every doctor has told me that was what they would have to do. A couple said that and then said they didn't think they would find anything. They don't believe me and act like I am crazy. Everybody only loses an inch, right?

As you said, it probably isn't that big a deal doing a flouoroscopy. HOWEVER, getting a doctor to do it seems to be. I have been looked at like I have 2 heads by enough doctors, I am tired of trying. I truly don't think talking to 10 more local doctors will do anything but waste my time, and I'll still be headed to Kansas City.

Like I said earlier, if I lived somewhere else, maybe this could have taken a different direction. I've made peace with what must happen.

You are the first person of maybe a thousand people (in person or online) I have talked with that actually came up with something valid. Even you didn't believe it in our first discussion.

I'm tired of even explaining it. I can hardly stand a drive across town. I am not interested in long trips and can't sit up straight enough to fly in an airplane. I almost lay down to use my computer. One or 2 trips to Kansas City will be pure hell!

Somewhere I HAD to draw a line in the sand for my own sanity! I will have to live with it. Of that I am well aware. I told both shrinks that all I wanted was my life back. If I have to sit to pee, so be it. What I have now is almost that.

Mike

Tall_Allen profile image
Tall_Allen in reply toShorter

Did you ever ask any doctor to do a fluoroscopy of your bladder while standing?

Shorter profile image
Shorter in reply toTall_Allen

Not until the last one. I didn't know about it until then.

Boywonder56 profile image
Boywonder56 in reply toPatrick-Turner

Dont get patrick started.....please....

E2-Guy profile image
E2-Guy in reply toShorter

I moved to Thailand shortly after my RP…will hopefully (God willing) be celebrating my 16th RP anniversary in December. My decision to relocate from The States was not sexually motivated since I really never felt deprived. Weather…can enjoy outdoor activities almost every day, a relatively low cost of living, a slower lifestyle pace, affordable oceanfront condos, no property taxes, HOA fees at a fraction of America’s, many friends from all over the world, a government that doesn’t tolerate violence and looting in exchange for votes, unlimited dining choices 24/7, the possibility of sincere companionship, and affordable quality medical services were all factors of consideration. Coincidentally, "Thailand just ranked number one on the Global COVID-19 Recovery Index", according to Johns Hopkins University data. Currently we have only 3304 'reported' cases with 58 deaths in a country of 66,000,000.

Obviously not everyone finds Thailand to be Utopia; however, I am more content here than I have ever been in The States. I consider myself fortunate to have met a Thai lady (34 years my junior…new profile pic) that I ‘believe’ genuinely cares about me. We have been together for 15 years and I’m relatively sure that she will be here for me until my expiration. She doesn't drink, smoke, never worked in a bar, and has no children; she was a tour guide when we met. We share numerous common interests including raising tropical fish and our extensive succulent/cacti collection. I’m not much of a loner and do enjoy her company, ‘most of the time’.

She cannot go shopping without picking up my favorite items, will get up if I return home late at night and make a scrumptious dinner for me if I am hungry, is an excellent housekeeper (unlike my ex), calls me (sometimes too often) to check on me, speaks English, is in her final year of law school, is more concerned about my health than I am, and doesn’t ’appear’ to have a problem with ‘Rodger’ who has been asleep for years!

Of course our relationship is not one-sided. I have provided a comfortable lifestyle which is a departure from what she previously knew, and assisted her financially, albeit at a cost far below what would be required to keep most western women satisfied.

Not every day is bliss since she can frequently get under my skin, and I’m certain she finds the same to be true. That being said, would I ever consider moving back? Not a chance! I have many friends here that have also found fulfilling relationships; however, as in every country, there are exceptions.

I thought about including a pic or two, but I guess there is no way without creating a new post. Oh well.

ITCandy profile image
ITCandy in reply toE2-Guy

Sounds like a great place to be. I have a neighbor who does exactly as you only comes back to Canada from June to September.

Some men got it all figured out.

E2-Guy profile image
E2-Guy in reply toITCandy

The weather was a biggie after spending way too many years in Chicago.

E2-Guy profile image
E2-Guy in reply toE2-Guy

One other thing that I forgot to mention above with regard to Thailand's health care system is that they provide free HIV testing to all Thais. If positive, they provide daily antiretroviral drugs every three months at a cost of about $1.00...may as well also say 'free'.

Patrick-Turner profile image
Patrick-Turner in reply toE2-Guy

I have heard your kind of story from a few other men who in past went to Philippines but Thailand is the place to escape now. I saw TV show about Thai train travel where it showed the areas well away from built up places in Bangkok where many here have been to for holidays, cheap surgery, cheap women or cheap drugs.

So I discovered there is a lot more good about Thailand than being anywhere near Bangkok and the teeming millions in crowded cities.

I'm too late for all that, and where could I cycle without fear? At 30, my answer to the neurotic, difficult, and expensive woman of my own race and age was to assume marriage would be a terrible idea to pursue, unless proven otherwise.

After my well managed divorce at 29, I remained a hot rooster, so I dallianced with women who were fun and liked sex, insisted on paying 1/2 the cafe bill and who could be faithful for longer than a week. When their parents insisted I wasn't good enough or they became irritable or bossy or bad tempered, I'd just not use the phone. Leave them alone, with a thank you very much for the good times.

It seemed to me Asian men treated their women so badly due to endemic poverty that some Asian women can be forgiven for never wanting to marry Asian men, and when they meet good western men its like going to heaven. We just don't see Western women queuing up to marry Asian men.

I'd say you have got a real good lifestyle where you are, but I guess you'd want to be able to fly out if something went badly wrong with politics or yourself which could not be fixed where you are.

Patrick Turner.

E2-Guy profile image
E2-Guy in reply toPatrick-Turner

Patrick,

You are five years younger than I am and I agree with most of your assessment; however, it's not "too late"! I have a number of 'old' mates from 'down under' that have found happiness here. My 73 year old friend Phillip Oates for example, who is a retired jockey from Adelaide moved here 15 years ago and has never gone back, not even for a visit or medical reasons. He is married to one of the sweetest, young Thai girls that I have ever met. He suffered a stroke a few years back and Khun Hong takes care of him like a devoted mother. I have several other mates that have relocated here from Melbourne, Perth, and Sydney.

We live about two hours south of Bangkok on the east side of the gulf so we don't have nearly the traffic and hustle & bustle of big city life. As for cycling, most of us have cars; however, bicycles and motorbikes are the favored way of getting around.

You are absolutely correct regarding your statement about Thai men. Many Thai girls have zero respect for the majority of them and choose to date and marry only western men.

Regarding our political situation, we have been under the control of the Thai military for over five years now and I feel much safer here than I would feel in America. I have also been quite satisfied with our medical system and the only reason I would go back to the The States for major treatments is because Medicare pays for nothing outside of the US. Health care here is a fraction of the cost of what it is in America; however, something major would still cost more than my Medicare copay. My PSA, ALP, T, and E2 blood tests cost me about $28 and I just walk into the hospital and ask for the blood draw.

I'm not trying to talk you into moving here, simply dispelling the many myths about expats living in Thailand.

Cheers and be safe,

Ron

Patrick-Turner profile image
Patrick-Turner in reply toE2-Guy

I have never been a firm believer in myths, and in fact I feel that all religious belief is just a product of human ability for imagination, and many can be led to imagine the same thing, and this leads to religious intolerance or racism, or whatever is very bad about many societies.

I have heard that quite a few Australians have moved to Thailand and other Asian countries to enjoy better weather and to get loved by women, with freedom from all the other societal mumbo-jumbo mythical religious and political stuff. It seems Thailand is strongly ruled, allowing your stable life.

I have seen some men living here who married Filipinos and sure they got loved either either a lot, or a little, and some soon ended up in a sex free existence after the lady had a child, and she got to know our legal system and her rights. Love died, as it so often does, so they then seemed to live in a sham marriage of convenience and I would not have enjoyed that. Desire is such a fragile thing. Finding lasting love seemed to me to be all too much trouble and expense so I gave up well before I got Pca, which I expected to get, because I'd witnessed so much cancer in my close relatives. And I had a very bad pair of knees for many years before doctors agreed to replace both joints, so romantic walks along tropical beaches was agony, and I could not be romantic, and my income was very low, so moving anywhere just was not an option. So I just cannot be persuaded to go elsewhere to live, or spend much money.

But since getting diagnosed in 2009 for Pca at 62, I have never felt secure about staying alive for more than 2 years at any time because Psa kept going up until some other drug was tried and now I am up to Lu177, and after that I dunno what I'll get to keep Pca level low and allow a good QOL.

Up to when I did get diagnosed, I expected to be able to have sex with any lady who had the ability and desire stay with me, so when I lost my sexuality, I just never considered moving to a new country would solve anything, and I became able to be happy in what is the coldest winter city of Australia.

Its another cold winter day here with cold foggy morning. But it should fine up enough later to allow me to have a sandwich at a local cafe then cycle 60km. There's an athlete in me that needs the work out.

I have grown so used to not having any love from any woman that I probably could never really addapt to any female, certainly not in any way like I used to, and I see that there's so little that is special about myself so what's the point of getting some lady to believe there is? I once was a "fine catch" for many women, but not any more, and I am just an old barstud, and diseased, and the idea of having some young dame of 50 with me is just not worth any time dreaming about. I'll see my remaining time out on Earth with nobody with me. I've learnt how to survive well without personal support from anyone, except that of nurses and doctors. I just don't think I'd fit in very well to the Thailand scene. I have a few friends here, and that will have to do.

Enjoy your Thailand,

Patrick Turner.

E2-Guy profile image
E2-Guy in reply toPatrick-Turner

Thank you for your replies Patrick. I'm sorry to hear about what you have been going through with health issues and the disappointing past romances. I assume by your reply that you are currently receiving the Lu177 treatments? If that is the case, I certainly hope it works for you and keeps your PSA way down.

Three years ago I went down to Melbourne in May for a 68Ga PSMA scan at Peter Mac. A US$750, eight hour flight from Bangkok as opposed to a $1200, 20 hour flight to the States was a no-brainer. The scan was US$600 as opposed to $2750 at UCLA. The trip was fine with the exception that I froze my butt off at night with 9 degree celsius temperatures 'in the house'! I forgot that May 'down under' is winter. I had planned on staying a week, however, I took only one sightseeing tour (The Great Ocean Road Tour), and was so cold that I rushed back to Thailand after just three days. What a waste since there is so much more to see in AU. I saw only one koala who was so high up in a eucalyptus tree that he was barely visible, and zero kangaroos. Oh well, maybe I'll buzz down there again some December or January.

My best to you,

Ron

JuliesHusband profile image
JuliesHusband in reply toPatrick-Turner

Coming in late to the conversation here, but I'm curious how often you produced an erection over this time. The thought being that frequent erections are needed to bring in enough oxygenated blood to maintain erectile health.

Patrick-Turner profile image
Patrick-Turner in reply toJuliesHusband

After beginning first 2 years of ADT, I could still function OK with no ED, but orgasms were dulled and fleeting. I paused ADT to see if the 2 years of ADT + 70 Grey EBRT had worked, and Psa went from 0.08 to 8.0 in 6 months and all sex function returned as Testosterone levels went back up to 20 in a normal range between 8 and 38. I was keen cyclist then in 2012, and my average speed went back up by extra 4kph. But I was 65, and had zero chance of meeting any lady capable of having sex and being a partner, so I didn't care about sex function. It was obvious that Testosterone was my enemy.

But when I went back onto ADT in 2013, erections slowly faded down, and I had no pleasure at all from any manipulation of Dear Rodger. Then in 2015, most of the erectile sponge tissue in Rodger became clogged up so when I did have erections, Rodger was hard, 1/2 normal length, and with bend toward toes, and I found info online which suggested long term ADT makes Rodger fill up with fibroids and basically shrivel up. Rodger seems to depend on Testosterone to function, and without T Rodger dos not know if he's Arthur or Martha, and has to settle for being just a drain pipe.

So at 65, it was farewell to my dear friend, his days of poking around in Miss Fanny were over.

Going for a good bicycle ride was actually better than having any sex.

Patrick Turner.

JuliesHusband profile image
JuliesHusband in reply toPatrick-Turner

You are correct. The erectile tissue needs frequent doses of oxygenated blood to remain healthy, otherwise the erectile tissue will atrophy and fibroid develops. In good health we have several erections a night that take care of oxygenating. I believe that post op patients are encouraged to produce at least 3 erections per week.

I find that all men on ADT need an outside reason to produce erections as there is no testosterone based drive. Usually this is to satisfy the needs of a loved one or, as in my case, a determination to be available. After seeing the post op program I forced myself to have at least one very high quality erection a day if my wife was not in the mood to give me a boost.

With long term ADT keeping after the daily erection would be a real grind.

Patrick-Turner profile image
Patrick-Turner in reply toJuliesHusband

With long term ADT lasting more than several years, the dick not only becomes deformed, and totally unable to generate any pleasure, the skin joint between head and shaft of Rodger becomes so fragile that you can get tears in the flesh which may take a week to heal fully. Some men who have a successful RP and get remission may still have ED because of nerve damage in RP, but at least they have their testosterone so pleasure may still be possible, and maybe erections with help from Ciallis or Viagra, and a surgeon once recommended use of a penis pump. I bet that surgeon had never tried such a horrid device.

One man who had an RP did have ED but his wife was able to bring him to orgasm without an erection. I just didn't ask him to explain what she did. I could not imagine how an orgasm is possible without an erection AND when the head is also fully inflated with blood, and nerves can create pleasure with manual, oral or intercourse stimulation.

After age 50, I just never ever met any woman who wanted to care about me and her together, and develop some sense of my value. At 59, I did meet a lady of 57 whose menopause began at 35, but that only lasted 2 months, and we had to deal with her severe vaginusmus, her dyslexia, and very bad temper, and her proneness to get depressed, and I found it impossible to maintain desire, and she was so pissed off about that she could not just be friends and forget the boyfriend girlfriend stuff and silly expectations. So by the time I was diagnosed at 62, I didn't mind the ADT and almost complete lack of interest in having sex with myself or anyone else. I just have not had a date since 2006, and women I see at local cafe are all over 60, with not the slightest inclination to get any thing going like they did at 25.

My mum became a widow at 55 when my dad died at 60 from melanoma. She was in fairly good shape, but after having sex with only one man in her life, and for 29 years she never ever even kissed another man. But she had more friends than anyone else I ever knew, and had gatherings at her house where she very gregarious. So between 55 and 98, she didn't mind being alone.

All I can say is that sex worth having needs a good body, and ability to love someone else without putting on agony and style, or expecting a partner to be someone else.

We all start trying to find The One, but I found that was a painful search for a needle in haystack, and when I did get so far with someone, they'd back out to travel etc because they hated commitment.

I now prefer a good ride on a bicycle rather than trying to have sex of any kind, or prefer a good productive day in my crafting shed. But soon, my Pca may put an end to such simple delights.

JuliesHusband profile image
JuliesHusband in reply toPatrick-Turner

My wife has physical issues so in deference to her, I have not had intercourse for almost 25 years. My choice. We men don't own all the issues. When I was diagnosed with prostate cancer I became very angry that I would lose my option to make that choice and that has driven me to continue through my 6 month stint with ADT.

Now I think we will work towards a non intercourse intimacy. We are closer than we have been in many years.

In experimenting during ADT she pushed and tried intercourse, but I was too concerned about her to be able to remain focused enough to remain erect. There are non intercourse moves that I find extremely erotic, but I can't expect her to be involved every day so I got a vibrator and found it is quite effective.

Patrick-Turner profile image
Patrick-Turner in reply toJuliesHusband

I wasn't married for very long, only 18 months after some years dating and living together, and she was 23 and I was 29 when she vamoosed after having changed into some I didn't know and could not talk to or reason with. She was unhappy with herself, and didn't know why and had seen a psychologist ( funded by Medicare )to figure things out. It led nowhere, so she sacked the man. But she enjoyed sex right up to the day she left. I knew she was leaving, but didn't know when. Months later after she fell into poverty and fighting with all others she met, she admitted she's had sex with someone else after she'd left, and said she felt suicidal after that. So I figured out I had a real nutcase ex-wife, and I had to find someone else to marry, if marriage was what I wanted, but when I looked around the bars at night, there were many women on the prowl, but when I dated them for long enough to evaluate them I found many were quite crazy, and would not make my simple life any better, or theirs, or the life of their kids any better if they came to live with me. So years raced by and I never remarried. Sex with any woman was often based on them being driven by lust, and any ability they had to love anyone was about zero. I was not sure I could have ever been married and denied sex for 25 years, because lust chased me around as well.After diagnosis with Pca, I never thought I'd live long, and never met any women anywhere, so discussing any sexual "terms of a treaty" were never undertaken, and I have assumed that most women who really want a man want to have sex, and expect the man to be complete, and to have a fully working Rodger, and to approach them with a vibrator would be quite unacceptable. A large % of women cannot orgasm, and for them, sex is nice, but they don't mind if they don't have any sex, and then can drift into thinking men are beasts and sex is dirty, but continue with marriage.

If had a dollar for every time I heard about a married couple who had a sex life that was full of dysfunction and problems about sex, love, emotions, self esteem, weight, hobbies, neurosis, personal habits, I'd be a very wealthy man. Hardly anyone hasn't got problems when with a partner especially after kids arrive and the couple ages.

Anyway, real lasting closeness was never to be had, and I cannot offer much advice because I have had very little experience with being with women.

I do know quite a bit about Pca treatment, cycling, and retro electronics with vacuum tubes. Apart from these simple things, I am humble enough to say I am quite dumb, especially about Eternity and Infinity, or why the Universe exists.

As my sexual abilities faded down after beginning ADT, I got to understand what it was like for women who could not have orgasms, no matter how hard they tried.

Lust also vanished without testosterone, so desire vanished.

Anyway, I found a bicycle did the trick for me to enjoy life better; I just did not need any partner. I could exist very well without what so many other ppl found essential.

I never ever went to a brothel, or had sex with a machine, ie, vibrator.

Once the testosterone is gone, my life was that of a eunuch.

All the old ideas about "lerve" and togetherness I shared with most other healthy ppl at 30 have become a pile of BS now, totally not needed now at all, and the last lime a younger woman "touched me deeply" was when a lady registrar of 30 poked a finger up me bum to feel how big my PG was before I had EBRT in 2010.

Being touched by anyone else rarely ever happens, but that became normal well before diagnosis in my years after 35 because so many women had so many problems and all that was automatic and natural before 35 had vanished.

I get blood tests next week, and get to talk to doc at Theranostics Australia about how Ra223 might be going. It could be real bad news. There's always the lurking fear about the future.

I tried to phone Astellas Pharma who make Xtandi, to ask why I should keep taking Xtandi with rapidly rising Psa. All docs I know cannot say why I need Xtandi now.

Its not working.

Anyway, I phoned the1800 number, and spoke to a young woman in Singapore, and her english was only so-so and the audio quality of the phone line was just terrible, so I had to ask her to talk very slowly, and I did, but she knew nothing, and after 30 minutes I finally got my question across and she said someone would email me soon about dangers of taking Xtandi for too long after it stopped working.

I really don't expect a reply from what is an almost entirely dysfunctional "support service" of a Big Pharma company. If I read common info about Xtandi, its wise to stop taking it if Pa rises rapidly. Medicare is supposed to stop funding continued Xtandi when it fails to keep Psa low.

I'll try the Astellas Pharma website today.

But its a very nice day to spend in my shed today, re-building a tube amp.

I did have a back problem due to pick and shovel work 2 weeks ago and a break from the bike is appropriate, but next week I should be just fine.

Patrick Turner.

JuliesHusband profile image
JuliesHusband in reply toPatrick-Turner

I also experienced injury to the skin at the circumcision scar line and the posterior top of the corona. I went to my urologist about it, but she hasn't even accepted the idea that castrate men can have sex and so has not had experience with the injury.

Using a vibrator provided enough non damaging stimulation to allow the injured areas to heal.

Patrick-Turner profile image
Patrick-Turner in reply toJuliesHusband

Well, I am castrated, and sex is completely impossible, so your urologist is about right.But there's a time between being a Hot Rooster before ADT and when ADT and the radiation destroy all sex ability, and docs don't know much about that, and I never ever found any doctor able to talk about sex. Most have weird sex lives, or only had sex to make babies, and after that, have no sex with anyone, and we have to guess that many doctors masturbate alone after 35, without their wife's knowledge. What would doctors really know about sex? A sex therapist might know more, in this age where transgender and queer ppl have so many problems there's a good living to be made trying to help them. A urologist is more like a plumber, and his/her job is made more vexing by the presence of sexual functions of sex organs placed within the plumbing, and most doctors just don't have time or expertise to deal with sex function that is not necessary at all for ppl to stay alive and have a good life. Docs are about life or death. They just ain't able to guarantee there won't be serious side effects of what they do to keep ppl alive. There are women who have had both breasts removed for Brca, or whole vagina removed due to cancer, most have to forget all about sex. Or their self esteem makes them avoid ever having a partner again. I saw what happened to my two sisters, and very many ppl just have to just get used to being fully de-sexed.

Patrick Turner.

JuliesHusband profile image
JuliesHusband in reply toPatrick-Turner

No the urologist is not correct about castrate men not having sex. Some or most who get past lack of interest and give it a try find they can have sex. The mechanics of sex while castrate are very different than when testosterone is driving it. I'm thinking about writing a manual on how to masturbate and have intercourse while castrate.

I was fully functional over my 6 months of being castrate. Longer term would be more difficult. To have erections often enough we'd probably have to treat it the same as brushing our teeth: not particularly interesting way to spend time, but necessary for health.

I find doctors are not comfortable talking about sex. I became irritated that someone who is dealing with my genitals can't talk about what they are used for and several times became snarky with my urologist.

Patrick-Turner profile image
Patrick-Turner in reply toJuliesHusband

Maybe we will have to agree to disagree about urologists being wrong by assuming men on ADT can't have sex.I've had ADT since 2010, and I simply cannot have sex. I get hard ons but length is short, 1/2 what it was, and with a bend toward toes, and I don't have pleasure and having sex could injure me, and penetration would be very uncomfortable for me and totally inadequate and a big turn off for most women. As a fully castrated man, sex is just not on unless I confine it to oral sex on the woman, or using a vibrator on the woman.

Most women I have met over my time before 50 needed a man to be WHOLE, not with bits that didn't work. They enjoyed seeing m naked, and ready for anything. The shy women hiding under the bed sheets were often overweight, and with very poor self esteem, and some heavy women smoked and drank too much and turned me off. I didn't chase after any of them. The good looking women married the good looking men with money. Or married very ugly men.

Marriage and having sex is all tied up with social and economic status. 3 things are important to most ppl in life, Sex, Money, and Aggrandizement. As many women move into middle age, sex hardly matters, but the other two things dominate.

Jerry Hall is / was married to Rupert Murdoch. Lord Noze what sort of sex life that couple gets up to, but They have nothing that makes me jealous.

I can ride a bicycle 50km at average speed 24kph. Why is it that almost no woman over 25 can do that? I have preserved my athletic abilities, but and it would be real nice to have a lady who was completely asexual like me, but who like to cycle. The other thing that makes sure I can't have sex with any woman is there are none to meet who don't don't mind getting naked with an old man well poxed up with Pca who is likely to die soon.

But there would be men who have had few side effects from ADT and other forms of sexual extermination such as radiation, and thy can still get it up enough to be attractive to a woman. There's a number of men who have RP and that's the end of their trouble with Pca, and don't need ADT, but have testosterone but have ED, and for them a prosthetic implant can cause a nice erection.

But I have never ever discussed what its like to go down that path because so few men can be completely open about sex, along with anything else personal, political,

religious, or about lovers other than their wives, and how much they earn.

So afaik, a bloke with gadget to get an erection may be able to please a woman, but what's really in it for him? I kinda think that the sex would not be erotic, its duty, and the gadget sex probably is just not very good compared to when he was 30.

I'm quite happy the whole business of relating to a female partner is not part of my life. I look after myself better than any woman ever could, and I'll die alone, and I don't care about that either.

I don't seem to have any choice in the matter.

But I very much enjoy the few friends I have, and two men have endearing caring wives who have stuck with these blokes in sickness and in health, to love and to hold and with exclusion of all others, until death doth part them. Sometimes these men have hard things to say about women when not with their wives, and I have to tell them they have a wife at home, so what they say about women in man to man conversation is pure bullshit, because there are so many wonderful women around. But I missed out getting a good woman, and its pointless trying to say why, its all too late for anything.

I had a real good day in my shed.

Cool autumn is here, and my dreadful postural hypotension has vanished.

I'll get back onto bike next week. The break from bike to do yard work instead was good.

Patrick Turner.

NOCanceros profile image
NOCanceros

Hello Tall

Thanks for these informations.

G

Rich_Rad profile image
Rich_Rad

Thanks TA and Wassersug!

I am in the treatment group of the RESTORE study, and I can attest to what the findings suggest. The convergence of so many factors! I am blessed to have a husband along with me on the journey, and as both of us are social workers, our consistent efforts at effective communication have been invaluable.

It’s a long journey, and I am only half way through 18 months of Lupron/Zytiga. The pumping, pills, masturbation, dialation, and kegels have helped. Not waiting to feel “in the mood” has been a very important skill. With zero drive, I have to work at acceptance of the difference in my emotional stare and remember that sexual activity is not just to please my husband but to be ready for the day when my interest will come back (hopefully).

Thanks for all you do, and bringing up the topic!

Rich

sharpcut profile image
sharpcut

Thank You. TA. !! VERY INTERESTED in this article. I have deleted cookies and still unable to access If anyone has a copy they can send me I would appreciate it !

sharpcut6 at gmail.

. I am partnerless. So I am still challenge dosing 100 mg with slidenafil (viagra)and using trimix 2-3 X a months to keep the little guy alive. Otherwise he is dead as can be

Not sure if I am doing the right thing but want to get back in the game (seeking a partner) sometime soon.

Finished Radiation Treatments July 6th. and 4 months of ADT (Lupron) . Next PSA test Oct

Appreciate the Brotherhood !

Tall_Allen profile image
Tall_Allen in reply tosharpcut

See Wassersug's post, above

mrscruffy profile image
mrscruffy

I have been on Lupron and Zytiga for 15 months. I am 56 and will be celebrating my 19th anniversary this September. I have started using trimix as Muse became temporarily unavailable. I think the key is to have a partner that still wants sex and my wife does. While sex is no longer spontaneous it is still super satisfying for both of us we just have to plan it and usually go away for a weekend to do so. So there is hope of a semi-normal sex life which is way better than no sex at all.

Survivor1965 profile image
Survivor1965

I feel like I want to share on this. Dx 2011 RP in 2012. Gleason 9, cancer in nerve bundles, peri-prostatic lymph, and seminal vesicles. I was 46 at Dx. Been on ADT off and on since. Been on Lupron/xtandi solid for 41 months. Gave up on Viagra, muse, injections, and that darn pump. Had the 3 piece penile implant installed 2017. Best decision we ever made. Been married 31 years and we weren’t about to give up on sex. We try to have sex once a week. She gets off every time and me 9 times out of 10. There IS sex during ADT. I feel like it saves my sanity.

dadzone43 profile image
dadzone43

Thank you. But $40 for a read seems a little --um -- stiff.

fluffyfur profile image
fluffyfur in reply todadzone43

You can read it here for free hun. sci-hub.tw/https://www.scie...

dadzone43 profile image
dadzone43 in reply tofluffyfur

Thank you. The men in my support group cannot afford $40 but they can enjoy access to the pre-proof!!!

Karmaji profile image
Karmaji in reply tofluffyfur

does not work....some error in url

fluffyfur profile image
fluffyfur in reply toKarmaji

Do you have Adobe Acrobat on your computer? This is a PDF file.

Karmaji profile image
Karmaji in reply tofluffyfur

I get following message...

maybe not accessible from France

This site can’t be reachedsci-hub.tw’s server IP address could not be found.

Try:

Checking the connection

ERR_NAME_NOT_RESOLVED

Max225 profile image
Max225

Thank you, Tall_Allen. This is helpful.

afab profile image
afab

I’ve been on a combination of Lupron and Xtandi since 3/2014, age 74., now 80. The drugs have killed sex in addition to my libido. My wife is 7 year’s younger and very understanding; used options for satisfying her for several years.

I feel so bad for the younger guys who have been robbed of one of life’s great pleasures. ...so focus on some of the other joys in life like a good cigar and 2 fingers of single malt scotch; growing a garden, etc.

timotur profile image
timotur

After 15 months of ADT, I can say I feel like what Dog the Bounty Hunter said after losing his wife Beth to cancer, and the prospect of dating again, "sex is a thing of the past". I don't even think about it now, except for a few nocturnal erections, there is no "there" there. We'll see what happens after my last Lupron shot in September. Wife is very supportive though, so that counts for a lot.

Fuzzman77 profile image
Fuzzman77

Seeing that I am now trying to push a wagon uphill with a rope the only choice is to look for alternatives.

j-o-h-n profile image
j-o-h-n in reply toFuzzman77

Want it done? Let you wife push it.............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/29/2020 7:08 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Yayahahahaya

Kaliber profile image
Kaliber in reply toFuzzman77

Well adding a few adult tools can go a long way towards helping out. I’ve found buying a gasoline powered back pak leaf blower, powerful wet- dry shop vac, 12X12 black rubber sheets and a restaurant sized jar of mayo a great start.

Just say’in

j-o-h-n profile image
j-o-h-n in reply toKaliber

and you're Just say'in FUNNY.......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/29/2020 9:38 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Common man ... I know you have a big pneumatic nailer tucked under your bed .... wink wink nudge nudge ...

Boywonder56 profile image
Boywonder56 in reply toKaliber

Lmao.....ty kaliber..bw

j-o-h-n profile image
j-o-h-n

Unfortunately for me.... A D T = A Dead Throbber.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/29/2020 7:17 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

You know those black plastic orthopedic leg immobilizers , the ones with all the Velcro straps. Get One of those and a bolt of mole skin wrapping ..... you’d probably be surprised at how fast that could work ... also see the adult tools I mentioned above, the gas powered back pak leaf blower and an industrial wet vac ..... think outside the “ box “ I say.

Just say’in

j-o-h-n profile image
j-o-h-n in reply toKaliber

Nevermind I'll just try the restaurant sized jar of mayo.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/29/2020 9:40 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Yayahahahaya probably A wise choice .... the other ones can land you in a body brace yayahahahaya.

Mayo leaves your skin soft, smooth and looking years younger. Scoop up the excess and use it on that BLT for lunch tomorrow. Think I saw that in Martha Stewart’s show or maybe 50 shades of gray. Dunno .....

🙂🙂🙂🙂

j-o-h-n profile image
j-o-h-n in reply toKaliber

I only wanted the jar, not the mayo.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/30/2020 6:44 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Yayahahahaya I save mine too , by the bed at night. 😂😂😂

j-o-h-n profile image
j-o-h-n in reply toKaliber

After dumping the Mayo..... I have my cat (named COPY) lick the inside of the bottle clean and then I put notes (to women) in them and throw them in the Bethesda foutain in Central Park.....

Most of the replies unfortunately are from the Park's maintenace crew.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/30/2020 8:06 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Well that “ is “ one way to go about meeting ladies or at least trying to .. maybe throw a few in the river and even ocean. Or .... Google “ best dating apps “ .. there is something called dating apps that you are likely to have more success with. Yayahahahaya yayahahahaya

j-o-h-n profile image
j-o-h-n in reply toKaliber

I tried that already but most of the women I was looking for were all dead from old age...........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 12:21 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Ewwwwwwwwww .... hummmm ....but still ....

j-o-h-n profile image
j-o-h-n in reply toKaliber

Naw for necrophilia.... tried that once but she was too active........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 1:11 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Yayahahahaya still ewwwwwwww tho ... maybe if you still had some of that giant mayo jar .... just thinking out loud.

Kaliber profile image
Kaliber in reply toj-o-h-n

Sick as a dog right now. Had the third surgery on Monday morning on that cancer on my forehead. Got a 5” row of staples that looks like a zipper. One and a half hours under the scalpel ... got my bandage off this morning.

Said they finally got it all this time , third time is charm. Entire face swollen up far beyond recognition , eyes just started opening up this afternoon ... real monster face this time. Had to hold an eye open with my fingers to see anything. Guess I’ve got a little infection in the wound, started a course of antibiotics this morning ...

dunno if it’s the antibiotics or what but I’m pretty sick right now ... very unpleasant. ..... yayahahahaya. Have a Zometa infusion Monday, don’t think I’m in shape to handle that right now. Too much at one time. The good news is I’m back down to just one kind of cancer. Seems trippy to think I’ll be glad to be back just dealing with my “ normal “ adt side effects sickness yayahahahaya. Yikes ....

Peace brother ✌️✌️✌️🤢🤢🤢

j-o-h-n profile image
j-o-h-n in reply toKaliber

Man oh man.... Bro you have been through the mill..... It must have felt like they were digging a ditch in your forehead... One and half hours... thats a long fxxking time. Just take all your meds and especially the antibiotics and REST... Lay down on your back porch and listen to the birds tweeting....Have a nice cool drink and think about the good old days when we thought we were invincible.. Too bad I'm not there to b.s. with you and keep your mind off of feeling shitty. Hang in there Dusty.... (now Rusty)....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 12:18 PM DST

treedown profile image
treedown in reply toj-o-h-n

Your doing a pretty good job of b.s.ing through the forum. You two are a hoot !

j-o-h-n profile image
j-o-h-n in reply totreedown

shhhhh.... just want to let you know, that Kaliber and I (j-o-h-n) are one and the same person........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 1:19 PM DST

treedown profile image
treedown in reply toj-o-h-n

So he's the twin brother you mentioned ?

Kaliber profile image
Kaliber in reply totreedown

I talk to him when I’m looking in the mirror in our bathroom ... clearly I’m much better looking.

j-o-h-n profile image
j-o-h-n in reply totreedown

My twin brother had a six hour dickgonefromme operation and now she's my twin sister...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 5:04 PM DST

treedown profile image
treedown in reply toj-o-h-n

It probably wasn't doing him good anyway if he was on ADT.

j-o-h-n profile image
j-o-h-n in reply totreedown

You're right..... but you should see the line outside my house now....She put up a banner that reads "Back Sides Matter"..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/31/2020 6:23 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

Haaaaaaaayyyy .... you’re not supposed to tell people about “ us “ .... people at our medical confinement facility are the only ones supposed to know ..

Kaliber profile image
Kaliber in reply toj-o-h-n

Rite on brother ... moved my Zometa back a week til the 10th . Went to the blood lab for my end of the monthlies ... had fun there ... people staring at me , got up and gave me their seat , asking if I needed anything ... etc. yayahahahaya. Got to say stuff like “ shudda seen the other guy “ ... any my favorite” mannnnnn, this Covid is hell isn’t ? “ .... yayahahahaya I can clear out a whole side of the waiting room with that one yayahahahaya. Since I have a biker persona ( long pony tail, HD clothes, the boots etc. ) , one guy asked if I was in a bike crash ... I said nawwwwww, this is what happens when you talk back to your biker babe ole lady ... my wife standing there ( pushing me around on one of those carts ) glaring at me, said wait til we get back in the truck ! Yayahahahaya yayahahahaya she has a good sense of humor. She doesn’t even want to look at me looking like this.

I’m keeping an eye on that infection in the wound, sometimes it’s the stuff that you don’t expect that gets you. Its the weekend brother , hope you chillax and have some fun. I was gonna put my folding chair out near the sidewalk waiting for the little kids to walk to school ... party pooper old lady reminded me that there is no school right now yayahahahaya oh well. ....

Thanks for the good thoughts buddy, I got this ... just a little rough spot , no biggie yayahahahaya be real glad when I move past this tho. Have a good one ...

Best wishes ...💪💪💪🤢🤢🤢

treedown profile image
treedown in reply toKaliber

I kind of feel like you put a face to the fake name :)

Kaliber profile image
Kaliber in reply totreedown

I’m the real me ...he’s the fake him ... Kaliber is the top end .... j-o-h-n ...... well that says it all ... yayahahahaya

😂😂😂😂

Boywonder56 profile image
Boywonder56 in reply toj-o-h-n

You two like laurrel and hard on...you should take your schtick to the catskills....in the winter....good laughs

j-o-h-n profile image
j-o-h-n in reply toBoywonder56

We tried to but the winter was all booked up for the Christian retail sales convention....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/01/2020 12:13 PM DST

treedown profile image
treedown in reply toKaliber

Here's to a fast and complete recovery

Kaliber profile image
Kaliber in reply totreedown

Thank you brother , I appreciate the nice thought.

💪💪💪✌️✌️✌️

Gearhead profile image
Gearhead

An interesting item in the article about a fellow who had intercourse infrequently: "...a PCa patient, who had sexual

intercourse six times daily before castration, still reported having sexual intercourse twice weekly at 30 months after castration." Six???

pwallace profile image
pwallace

i feel bad reading all of your replies (almost like i was reading your journals), but omg some of them made me LOL! 😂 especially patrick’s! thank you for that! we are about to enter the world of lupron/zytiga (most likely), so this topic is very timely for us. we still have such a good thing going, so i’m shaking in my boots a little. thanks for sharing this, allen.

Roscoaus2000 profile image
Roscoaus2000

I am happy that I deferred any treatment from when at age 65 I refused recommended biopsy when psa was 7. It rose quickly from 7 to 1300 over 10 years. At that stage I decided to do nothing until I had symptoms. My sex life had been good for those ten years and I slept well , rarely waking up during a seven hour sleep. In the next year I started to have impotency, rheumatic pain in back and waking up to pee. The sex didnt worry me because my wife was also having difficulty having an orgasm. When I was 76 1/2 the pain became to bad and I requested help. A CT scan showed advanced metastatic prostate cancer and psa 9000. ADT fixed the pain and psa <.01. Lost all thought of sex and ability to have erection . I am now 80 and both my wife and I accept no sex, but we still have a close, loving relationship. I can still play golf and have reasonable strength.

ClemenceGinger profile image
ClemenceGinger

Have you heard anything about new sex toys? What do you all think about integrating such technologies into your relationship? Can this work for you?

SsCoobyDoO profile image
SsCoobyDoO

I totally get the frustration and the questions about whether things will never be the same. It's a rollercoaster, isn't it?

I've found that open communication is key. Sometimes, it's about exploring new ways to connect intimately. Have any of you heard about sexting ai sicha.ai/ ? It’s a fascinating concept where technology helps maintain that spark when physical closeness is challenging.

Personally, I think any tool that helps couples stay connected during tough times is worth exploring. But hey, that's just my two cents.

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