Reversal of penile shortening after stopping Lupron

Mistake in my initial post. I was treated with triplet therapy in Oct-Dec 2022, pelvic radiation in 2023 and my Lupron was discontinued in July 2023. I guess that's the mental fog in action.

Doc, there is physical therapy for penile shortening. And I've read that cialis 5mg a day can protect vascular, hence nerve architecture without causing other havoc (sexual interest). Hyperbaric Oxygen treatment is another hopeful avenue. No experience here.

When researching this for my husband, I discovered that even a short course of ADT results in the loss of nocturnal erections. That results in loss of regular blood flow through that delicate tissue. After only a few months, the tissue starts to degrade and shrinks. From what I have read, this can't be reversed. There are ways to prevent it happening... a daily dose of cialis 5mg helps to keep the flood flow coupled with daily use of a vacuum pump. By the way, our doctors never told us about this. In fact, most of the immasculating side effects of ADT were NOT even included on the info sheet. We had to find all this out on our own.

Thanks. I have been taking 5mg daily of Cialis for several tears. Also, using the vacuum pump. Have used Trimix penile injections to get erection.
I have read on a forum somewhere that after stopping Lupron/ADT when the Testosterone rises some men have seen reversal of the shrinkage, almost a second puberty.
I was told any of the sexual side effects either but I believe my doctors were doing what they had to do to try and save my life. Just a bad disease.

retireddoc, we all think our docs were doing the best they can to save our lives. But it does help to know adverse side effects. Nice defense of the profession, though.
I gathered all the side effects on line. One UCLA doctor talked about dry ejaculations taking some getting used to. Hope they aren't painful. And I read somewhere about success with stem cells for the prostate.
Can prostate cancer patients take testosterone after treatment to hasten return of normal levels of the hormone?

I can only relate my experience. When I was on Lupron from Jan 17-May 18, I mentioned to Dr. Kwon the shrinkage of my genitalia. He made a comment which was an attempt at humor, "well, we took you back to your pre-puberty stage in life..." Given the sensitivity of the side effect, I was initially tempted to say something but I shrugged it off.

The good news, after my last Lupron shot in May 18, by October when my T had recovered to 135 and then February 19 when it was 400+ my genitalia had "recovered..."

This go around on Orgovx for 12 months starting in April 23, same shrinkage. When I meet with my radiologist and oncologist on the 4th of April to review the 2 April labs and decide whether to stop at the agreed 12 months when we started (oncologist is making rumblings about 18 months since I'm "tolerating" it so well, yeah right, hot flashes, muscle and joint stiffness, fatigue...) we'll see if and when my T recovers and the impact on my genitalia.

Like you, I have been on daily Cialis both times which amazingly enough, with stimulations,I could achieve an erection that was decent (much to my wife's dismay...)

I'm a study of one...

Kevin

My comment to ya.....as my navy friend and I both have PC from agent orange....in Vietnam...he told me his penis now looks likes the head of a turtle sticking out of its shell.....I had to laugh as were both on the same boat USS KING DLG 10 in Haiphong harbor . Now were both on ADT. My medical oncologist has not talked to me about reversal effects yet...not sure its possible as long as cancer cells are in your body. Take care, Bruce

Had surgery & radiation in 2004, it left me impotent. six years later PSA returned I began almost ten years of off and on Lupron.
With advent of PSMA option I'm holding off Lupron in hopes of seeing tumor and hitting it with radiation.
But penis is so short now I pee my pants at times. Frustration to the max!
Going to use the penis expander in hopes of making it functional for urination.
Not having a shot of Lupron for almost 4 years I was hopeful it would grow back somewhat with the return of testosterone. Hasn't happened.

Ecurb's description was pretty funny, but very accurate! LOL Same here, massive shrinkage.
Age 11 all over again. That and muscle and joint aches, fatigue, some hot flashes, and at times just
feeling weird. Good luck to all with this.

I am 63 and was diagnosed in Aug 2023 and had RP Jan 24. I have no incontinence issues but do suffer ED. PSA has already risen to 10.3 and PET Scan last week confirmed metastasis to five lymph nodes in my abdomen. My urologist is consulting with radiation and medical oncologist today to form treatment plan and I am also waiting on a second opinion report from Cleveland Clinic. I understand everyone's priorities are different and I have certainly had to reevaluate mine over the last few months and have concluded that sex is not near the top of my list. It is being alive to enjoy the companionship of my wife and family, enjoying many more birthdays, holidays, and special occasions. I'm like the gentleman who commented earlier that his penis is like a turtle peaking has head out of his shell and that's OK with me, I'm still alive. There's one thing for sure dead men can't have sex either.