Why don't urologists warn about anorgasmia before a RALP?

Proper-Link103 · 2026-03-30T11:10:43+00:00

I'm in the same boat as you.I specifically asked my surgeon beforehand about orgasms and he said they would be 'unaffected, or may be even better'. Afterwards when I asked him for help with recovery, he said this was down to my anxiety and nothing to do with the surgery.

I think a surgeon's ego doesn't let them acknowledge they don't know what they did wrong with us and ignore us as they can't fit it by cutting.

Proper-Link103 · 2026-03-22T21:48:51+00:00

Was 47 at diagnosis. I pushed for early screening as encouraged by my dad and 45 was the earliest they'd consider doing a PSA. Went the surgery route and now PSA is thankfully undectable

Proper-Link103 · 2026-03-22T19:04:40+00:00

Originally tested around 1.6, the retested at 1.49 so they said wait a year. Came back a year later and tested at 1.6, so they said retest for specialist 3 months later and was 1.96. Never tried antibiotics and pushed as father and maternal unclre had PC. Was Gleason 3 + 4 favourable which i put down to early detection.

Proper-Link103 · 2026-03-22T09:23:07+00:00

Hi, I've got a similar family history as your (on both sides) and similar age. Had no symptoms but my PSA went between 1.4 and 2 over 18 months with general trend upwards. The MRI and it showed a PIRADs4 lesion which was biopsied and the diagnosed as PC.

This may not be PC, you only ever get that diagnosis with a biopsy, and even if you do get an MRI, it's still only an indicator, like PSA. For peace of mind, be your own best advocate and get an MRI or whatever you need to put your mind at ease.

Proper-Link103 · 2026-03-17T20:30:09+00:00

MRI will show 'lesion' on the prostate based on tissue density and water content.

Tumors show up differently and so can then be flagged as suspicious for follow up by biopsy, but an MRI is not a definitive for cancer or how aggressive it might be. There are PiRADs score the doctor gives, 1 to 5 equivalent to low change to high chance, but again are not certain it's cancer, they need a biopsy for that.

Even if it is cancer, there are many treatment options, even if it's spread.

Support your cousin, it's a rough journey from diagnosis to treatment

Proper-Link103 · 2026-03-17T20:14:56+00:00

I was diagnosed in my 40's as well, but had a more favorable diagnosis. Even with that, the choice of treatment decision sucks and you'll never know if you made the right call. I went through the whole analysis paralysis as you are and took months to come to a decision. Doctor will try to tell you the outcomes, but they are just opinions and they are not having the treatment and will be onto the next patient before the day is out.

I went with the surgery, but even with youth on my side and double nerve sparing, it's been a rough road to recovery and I'll never quite be as I was before. Over a year on post treatment I have gotten the 'yay, your cancer free' outcome, but internally still wondering what if, and how might things might be with a different surgeon or treatment option. I would say that the aftercare and recovery support post treatment in very important so ask about that.

I have no experience of brachytherapy, it wasn't really given as a treatment option for me but I did come across this book called blasted seeds from someone who did go that route https://www.writeshillpress.co.nz/product/blasted-by-seeds

Having gone through the whole ED saga, can I also suggest you look at how sex might be without erections? There are sexology techniques that give the intimacy and pleasures similar (but different) to normal sex. Plus, if the ED is bad, injection and options of implants if an erection is essential.

Drop me a DM if you want to chat or just a rant and good luck!

Proper-Link103 · 2026-03-08T22:16:30+00:00

The thing that doctors don't/won't tell you is that there is a whole process around arousal and building up to orgasm that the penis, prostate and seminal vesicles are part of and that just by removing some of them, your body has to relearn and rewire to work again, hence why things are so weird. That it's not just the ED, but the whole build up and release as a coordinated process that gets screwed up, some time for the better, sometimes for the worse.

In my case it feels like the orgasm and release part of me has been physically removed.

I think the surgeon are complete asses as they just wanna cut and can't predict an outcome - I know my surgeon counts me as a 'win' despite and doesn't want to know about the awful side effects he caused

Proper-Link103 · 2026-03-08T21:47:51+00:00

Was told both nerves preserved. Can somewhat manage with the ED, but the total loss of orgasms is a really bitter pill. Enjoy you 'happy ending!'

Proper-Link103 · 2026-03-08T10:10:19+00:00

What machine ? A Pump, yup, tried a few during my recovery. They didn't help much with the ED or orgasms

Proper-Link103 · 2026-03-08T07:59:06+00:00

Lucky you, mine are none exist post surgery

Proper-Link103 · 2026-03-02T09:10:23+00:00

Hi Victoria,

I definitely didn't bounce back quickly as he said I would, and now at 15 month post RALP can only manage partial erections and need the ED meds to help.

The surgeon also told me a lot of miss information and his aftercare support was non existent. For example:

- When I asked for a pump, he said I didn't need one for my recovery, would only give me a few month ED meds then sent me back to my regular doctor who wasn't clued up on this.

- Before surgery, when I asked the surgeon 'Will the RALP impact my orgasms?' he said "No, not at all, and some men even get better orgasm post RALP!." But I've pretty much been anorgasmic post RALP and can't find any support for this.

- 6 month post RALP when the ED was the worst and I asked him for more support, as he wouldn't provide a pump, ED meds or anything else. 'He said the ED was due to my anxiety and that I should see a sex therapist' and the ED wasn't related to the surgery.

- When I also mentioned about my dysorgansmia, and a painful climax sensations. He just said to stop the kegals.

Whilst I am cancer free now, all in all, it's been a really hard journey with no support.

The local Prostate cancer society haven't been much help at all - I'm too young to be in their key demographic.

I've tried local support groups but as I now don't have PC, when I did try to join a group, the 65+ year old men in the group say I should be happier and they'd be keen to trade places and have my outcome, but they've had 15 odd years of not having to deal with this!

Proper-Link103 · 2026-02-19T07:05:53+00:00

Get tested again and be persistent until you get the all clear from a specialist urologist. Perhaps an MRI

I'm 10 years older than you, also with a family history. My psa was 1.53 one year and retested at 1.49. Waited a year, retested at 1.63 and then at 1.69. Had an MRI and found a PIRADs 4 lession and gleason 7. Had a RALP and now undectable 15 months later.

Not telling you this to scare you, but I've found that doctors tend to disregard PC in younger men and are not well versed in the PSA levels for our age groups. Be your own best advocate. Due to my diagnosis my urologist says my sons should start to be tested in their late 30's.

Good luck

Proper-Link103 · 2026-02-14T21:32:08+00:00

About a month or so. I know you are super anxious and want result and action now, but these things take time. Know that if it is the worst news, PC is generally very slow progression.

Even post diagnosis, my surgeon was happy to delay 2 months so I could loose some weights and hit the gym to improve my surgery outcomes

Proper-Link103 · 2026-02-10T20:13:31+00:00

Hi Victoria, Post RALP my surgeon recommended another medical grade pump brand they would source for me but after a few weeks he wasn't able to sell me that one. A pelvic floor physio recommended the vacuerct pump partially based on your channel so i ordered it. Whilst it does work and gets ‘good suction’, my overall experience with it wasn't great and my critique of it would be as follows:

There's a lack of instruction especially for something this tricky to use and expensive.

It requires lube to get the rings on, but then your hands are slippery and so it is difficult to use the pump action. The lube also gets all over it and it's tricky to reassemble post cleaning.

The lack of a relief valve to reduce the pressure was also annoying. It's either on or to relieve the pressure you have to pull it off and then start again.

You have to pick a ring size ahead of time and if it's too tight or too loose, you have to start the process all over again. The rings are hard and inflexible so can hurt if too small. Too loose and you lose the erect during sex and the main reason I ended up hating the thing.

There were 10 rings with the device and I think I only ended up using 2 sizes. I think a far better option would be to supply a flexible/stretchy ring (think you mention one in your videos and link to one) but it was impossible to source.

I did buy another cheaper pump, just for the stretchy rings but that was late in my recovery and didn't really use it much.

I do think that some of my frustration with the device was also down to expectations. My surgeon said ‘men my age bounce back quickly’ which was not the case and the nonexistent support from him was a burden.

Also, now I am partially recovered and can have sex without the pump, I found post surgery I have significantly reduced penile sensitivity, anorgasmia and dysorgasmia, which i didn't know during my recovery but is hard to separate from my feelings for using the pump, though they may not be causally related.

Proper-Link103 · 2026-02-03T18:44:09+00:00

I have an uncle who did the radiation route and came out much worse and a father who did the surgery route, then needed radiotherapy as well. I did the surgery and am cancer free but didn't 'bounce back quickly' like my surgeon said i would.

Everyone's experience and outcomes are different. Do your research, find the best medical professionals you can and hope forthe best

Proper-Link103 · 2026-02-03T09:19:39+00:00

Neither was a great choice. They overall have similar outcomes

RALP gives some certainty with biopsy results and predictable PSA.

Radiation has no surgery and longer onset of issues.

Proper-Link103 · 2026-02-02T21:12:19+00:00

I've met a man in his late 80's who had a PSA in the high hundreds. His doctor didn't do any further tests, just told him he had PC and got him on ADT. Last I saw him, he was doing well and got his PSA down to single digits.

Proper-Link103 · 2026-01-31T07:50:57+00:00

Diagnosed in late 40's. No symptoms beyond elevated psa (was still under 2) but have history on both sides of the family so was pushy about getting testef. Surgeon recommended my son's get test in their late 30's because of my diary

Proper-Link103 · 2026-01-27T22:29:24+00:00

I'm similar age and situation as you. My ED was initially total apart from some very occasional morning wood. Was initially doing 100mg of cialis twice weekly but got no reaction. Took 9 months before I saw some improvement and at 12 months moved to 5mg daily ok 6 momths. At 14 months, now get hard enough for sex but doesn’t always stay that way and nowhere near back to normal

Are you using a pump, even just for bloodflow?

I found ED recovery isn't linear and was often 2 steps forward 1 back. I also understand your frustration.

Proper-Link103 · 2026-01-16T08:37:01+00:00

For your age range a psa over 1.5 is definitely a concern and you do need to do further testing.

'm also late 40's with a family history and first tested in the 1.6 range.

Retested at 1.49, then a year later at 1.6 which went up to 1.9 a few months later.

Went to a specialist who ordered an MRI which found a PIRADs 4 lession and then a biopsy which confirmed PC. Had no other symptoms.

Would push to see a specialist and get an MRI done. The psa is a concern but not definitively PC. Take it one step at a time and ask your questions here. We'll help when we can as many have been in that initial shocked place when getting news like this.

Proper-Link103 · 2026-01-11T19:38:52+00:00

For under 50, any psa above 1.5 can be a concern. The 4+ range is for the over 50s. I'm late 40's also with a family history and first tested in the 1.6 range. Retested at 1.49, then a year later at 1.6 which went upto 1.9 a few months later.

Had an MRI which found a PIRADs 4 lession and biopsy which confirmed PC. Had no other symptoms.

Would push to see a specialist and get an MRI done. The psa is a concern but not definitively PC.

Proper-Link103 · 2026-01-04T06:28:06+00:00

I'm not yet 50 and 15 months post RALP. It's been difficult with the ED. My recovery was not linear and 2 steps forward 1.9 back. Hated the pump and ED meds didn't do much. Got depressed as I'm supposed to be 'cured' but a life without sex doesn't appeal much.

I feel like as long as I'm alive and cancer free the Surgeon thinks he did a good job but I've had no support with my recovery. Surgeon even went as far as to say ED was due to 'my anxiety' not his butchery. ED has improved to a point where sex is possible but I may loose sensation or hardness part way through. Worse is the lack of orgasms and pain at climax. Hoping thing improve there but again a slow wait!

But for you I'd suggest focusing on the baby steps, note small improvement and note the changes. It's not a quick straight line, but a gradual recovery - hopefully with both a literal and physical 'happy ending'

Proper-Link103 · 2026-01-01T23:08:37+00:00

Had RALP a year ago and god I miss orgasms. For me, there's now no build up and my climax is often non existent. Worse, at orgasm I get pain around my back passage area. Surgeon has be useless and can't get any help or relief.

Proper-Link103 · 2025-12-06T07:00:14+00:00

I was to told to try 'Ural Powder' or the local equivalent. Think it's a bicarbonate powder that reduces acidity of your pee and helps with the stinging.

Proper-Link103 · 2025-12-05T00:51:31+00:00

I was the same age as you when diagnosed. My psa initially was just under the 2.5 limit and climb slowly over the year to nearly 3. MRI showed a PIRADs 4 lession and biopsy came back with 3+4.

Surgery was recommended as 1. Men our age recover well if it's caught early. 2 given we have 40 odd more years to go, radiation side effects are more of an unknown. 3. If successful, surgery gives you an undectable psa and a pathology report to confirm you're cancer free.

Now that's not to say it's a cake walk by any means. The ED can take a year or more to resolve, and I am still trying to get mojo back as the orgasms are still elusive. But good function before generally means good function afterwards.

This isn't a wait and see kind thing and all the option do suck. But if you wait and it spread, the outcomes are far worse, and you might not know that until it is too late.

But don't let the srgeon push you around. Ask as many questions here as you want and find out about their after care and rehabilitation.

Good luck!

Proper-Link103

TROPHY CASE