Lupron and shrinking penis

[cars_40]

I understand that Lupron can cause this side effect. I have been taking injections for 1 year.

At this point, the shrinkage is so much that it is almost nonexistent?

Has anyone else had this problem and does it go away after stopping Lupron?

[Tall_Allen]

I recommend you get a penis pump and use it everyday.

[Maxone73 in reply to Tall_Allen]

You mean one of those vacuum pumps?

[Tall_Allen in reply to Maxone73]

Yes. When the penis doesn't get a lot of blood flow, the body reabsorbs what it considers to be excess tissue. Pumping re-establishes blood flow.

[Maxone73 in reply to Tall_Allen]

Ok! Sooner or later I will get one of those pumps then!

[dhccpa in reply to Maxone73]

Get em while they're hot!

[kenner in reply to Tall_Allen]

Tall Allen I love Ya but the Radical I had 23 years ago might have cut my dick off.

[dhccpa in reply to Tall_Allen]

Available on Amazon?

[SierraSix in reply to Tall_Allen]

is that a prescription? Do you get that through your doctor or can you just get it at a drugstore?

[Tall_Allen in reply to SierraSix]

Medicare covers it for penile rehab if your urologist prescribes it. Or you can get it in a sex shop or online.

[Mike1971]

Listen to Tall_Allen

[Huzzah1]

Even though I can't get a full erection, I have been taking daily Cialis since I've been on ADT. I can get a decent chubby by just doing muscle pulls down there or having wife playing around. It has really helped.

[dhccpa in reply to Huzzah1]

Do you do the pump as well?

[Huzzah1 in reply to dhccpa]

Every once in a while. I know it should be more

[dhccpa in reply to Huzzah1]

Do you have a brand you recommend?

[Huzzah1 in reply to dhccpa]

I don't, it would be interesting if others could chime in.

[pj1121 in reply to Huzzah1]

I used to take cialis before PCa and was considering starting up again. Have you heard of any trials or studies, pertaining to it's effect on PCa? Did your MO or urologist prescribe it? Thanks

pj

[Huzzah1 in reply to pj1121]

My Uro wrote it, he works well with my MO. I wanted to make sure I was still getting good blood flow to the area and it has helped.

[treedown]

Having stopped HT once I can assure you, it (your junk, franks and beans) does come back ( I chose not to use "go away" as you did because that's what it did from the drugs ) when you stop ADT. And if you restart ADT it will go away again, as it did in my case)

[VCinTx]

I have knowledge of shrinkage with Lupron and after 1 year off that crap (and a pump) it has come back great!!!

[Bigblock]

Yeah i think i was bigger when i was 5 than i am now, ive never used a pump

[tarhoosier]

Some time after my prostate surgery in 2006 I went to a compounding pharmacist near me recommended by my urologist of that time as a source for a pump and associated items. The pharmacist took me to his office to display and demonstrate the device. He told me a story of one of his customers who bought and used the pump to maintain his marital activities. This man returned to the pharmacist some months later for another. Was it a problem, the pharmacist asked? It so happened that this man had another lover and occasionally slipped out of the house with his package for a rendez-vous. His wife noticed the package was missing. Thus the man needed a mobile package as well as his home package.*

*True? Bragging? Sales technique? Invented story?

[dhccpa in reply to tarhoosier]

Sounds plausible.

[jackcop in reply to tarhoosier]

True? Bragging? Sales technique? Invented story?

AND THE SURVEY SAYS : ....

[Andy1569]

You are not alone.

Fight On!

Andy

[EdinBmore]

ADT was wicked for me. As you note, one of the SEs is genital shrinkage (an extra little kick in the butt just to make sure you're paying attention to the devastation caused by this disease and its treatment. LOL) Anyhoo, I was part of a study that investigated how to help with maintaining one's sexual ability while receiving PCa treatments. The study provided meds - sildenafil (they recommended 60 mgs 3 times a wk), a penis pump (made by NuPath and available online), and other sex toys. And, although many men have zero interest in anything sexual while taking ADT, they basically instructed participants to "use it anyway" as part of the study/treatment. While I experienced some shrinkage - particularly in girth - I think the regular use of the pump helped. Some men here report major shrinkage of their penises and testicles (I read one post from a man whose testicles had shrunk to the size of small grapes. Yikes) And, to answer your question about returning to pre-treatment size and function afterwards, methinks the answer is a big fat, "No." At least, it was not true for me; the change was permanent. As was true with the wt gain (I thought wt loss would occur after completing ADT), the pounds did not just drop off, as it were. And, this was while exercising 5 days a wk (with a trainer), dieting, walking 3-5 times a wk, etc. So, keep the blood flowing, use a pump, masturbate regularly and, if you have a sexual partner, include her/him in the rehab...you know, lemons into lemonade..

EdinBaltimore

[SViking]

confirming that the pump does work for restoring original size. I was concerned about permanent atrophy, but quickly realized that the vacuum pump does as intended. Make sure to get the pharmaceutical grade model.

[j-o-h-n]

And to compound the problem.......It's what every bride thinks when they're walking down the aisle "thank god no more b.j.'s".

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/01/2024 12:53 PM

[RMontana]

Take a look at this podcast...its got the good, bad and ugly of lots of stuff we are never told about when we embark on this journey...guess most URO's are either too timid to bring this up, or are convinced we Men are so adverse to this side effect we will forgo a chance at cure to save our potency...but, we are way too smart to not do what we need to do WHILE taking actions that we can to preserve and prevent unwanted 'side effects.' Listen to this if you have time...

healthunlocked.com/active-s...

A VED (vacuum pump) is a must and you need to use it ASAP and consisitently...until you take some other action. One such step is thinking about an IPP (inflatable implant)...it may not match your needs but its the only long term solution to continued shrinkage and atrophe. Here is what I would have done, should I live again and can make a different decision. Again, knowledge of what is happening is central to taking good actions to prevent side effects you dont want...

healthunlocked.com/active-s...

Lastly, do not get a cheap VED...order a medical grade device. You should be spending $250-300 on a good pump. It makes a difference and you need to start stretching and oxygenating your tissue ASAP and do it twice a day...with a VED erection you will not be drawing fresh, Arterial blood. But, even Venous blood has 75-80% oxygen. Not as good as Arterial blood at 95% plus, but better than nothing...if you can tolerate the BIMIX or TRIMIX injections try these as its better treatment as you flush Arterial blood into your penile tissue, but over years these injections can scar your tissue and can lead to Pyrone's disease...so, an IPP is the only long term, permanent solution. Mine is 1 year old now and it works great...I acted late and lost 50% of my erection, but its better than having done nothing...every day I am thankful I acted! Good luck. Rick

[Mike1971 in reply to RMontana]

About the injections possibly leading to pyrone’s disease; I’ve read that one of the reasons can be small glass particles coming from breaking the glass vials which then is shot into the penis, and that using Fill Needles with 5 µm particle filter to draw the medicine is a good idea because of this.

Example of needle:

praxisdienst.com/en/Infusio...

[Mike1971 in reply to Mike1971]

Sorry, to clear any confusion; Invicorp which is something similar to Bimix/Trimix comes in single use glass vials. To draw Invicorp into a needle you first need to break the glass vials head which means you can get tiny bits of glass drawn as well (which you don’t want to inject). When using Invicorp you could prevent this by using Fill needles with filters.

Bimix and Trimix might not come in this type of glass vials (I’ve only used Invicorp).

[RMontana in reply to Mike1971]

That’s interesting and I’ve never heard that before. But my Bimix n Trimix came in a small vile that has the top sealed with a rubber cover. It’s the type that you perforate then draw a dose using the syringe and then remove the needle. So there shouldn’t be any glass particles.

From what I read, the trauma comes from repeated injection in the same area. Even though you’re supposed to rotate left right the injections over the years, there’s only so many spots along the same site u can use. Over the years this causes scarring and trauma. Also, I’ve read that the effectiveness drops the longer use it. Like anything else to body develops a tolerance, and eventually it stops working.

But for treatment it is a matter of progression. If these injections work, then I would keep using them until they don’t work. As long as you’re stretching annd oxygenating that tissue that’s the important part. Once that stops the atrophy Starts to occur.. Good luck.

PS The other drawback to injections is just lack of spontaneity, and the need to travel or account for refrigerated medication. The injections are probably ideal for home use, but anything beyond that is going to be difficult. It’s also cumbersome to get spun up and provide enough time for this to work. The other thing that happened with me was that the dose that I needed provided an erection which lasted for over an hour. I had to sometimes take decongestant over-the-counter medication To relax the erection. So shots are less than perfect. But they may work better on some people than they did in me. It just didn’t work for me at all. And also gave me a lot of pain. Rick

[Mike1971 in reply to RMontana]

Thank you for clearing that Rick.

I agree they have the drawback of spontaneity - best tip I’ve heard is to fill shots with the correct amount and store them in the refrigerator, to make it quicker when needed.

Thank you for the information and sorry they didn’t work for you.

[Baldylocks]

happy 2024 new year to you and everyone here. I’ll be short in sharing in part of what my friend on this journey has gone through. for unknown reasons he never pursued any of the options Tall-Allen and others mentioned. I too am one that believes information from T. A. can be taken as medical gospel, it’s evidenced as him doing his due diligence in research. I know my friend has been here long before me because it was him that lead me here. I know that his journey started some eight years prior to our meeting and he’s had ups, downs. shortly after our meeting he showed me a picture of his junk that he took prior to the start of his treatment regimen. what he had was 7” of impressive meat. We were on the same radiation schedule at the time so somewhere at midway we took a walk in the woods by our center and he showed me what had become of it. A new born would seem a giant by comparison. He was remarkable in his attitude of acceptance and I asked him how so? his response; He was well blessed in having his wife with complete support and understanding and his kids and more than plenty of sex prior to this event. His commitment was to life saving, cancer killing and best quality of life treatments and medications. saving his junk at this stage of life was not his priority of concern. for me it is a valiant approach. keep in mind his is a progressive metastasis. You know we’re you stand and what’s important. I hope for you and everyone here life’s best outcomes.

[carbide]

Yes. I have same problem. Penis shrinkage.I've been on Eligard for 5 years. RP January 6th 2019. Soon my penis began to shrink.

I've been massaging it, to try and bring blood into it. Helps I think.

But big issue is, my urologist who administers the eligard nor my MO cancer doctor ever mentioned this to me.

Thank you for "having the balls" to bring this issue into the light.

[Adendino]

does anyone know if a high quality pump is covered by insurance?

[rfgh20]

Definitely have shrinkage. Always a " grower not a shower" but no growing now. Still on ADT till summer 2024. Scared to quit it.

[CancerConcierge]

My husband’s urology PA at Mayo recommended Timm medical for penis rehab pumps…

When I asked my husband’s MO about penile rehab he looked at me like I was crazy and dismissed it as not pertinent

RO was supportive and prescribed viagra at our request …. But didn’t seem very knowledgeable, punted back to urology….

[Hidden]

I had a penial implant done after my radical Prostatectomy, as fate would have it, my cancer came back... Stage 4.... I'm on Lupron now... I've just had my second shot... The Lupron kills the drive... that's for sure.

I just realized I need to start pumping the implant again and yes the stretch is now somewhat painful..

October 2022 RP ... March 2023 implant.... Recurrence August 2023... Sept 2023 Lupron and Chemotherapy begin ... Three of six "Juicinings" done... Two Lupron shots

I can't speak to private insurance, but Medicare coupled with Part B and my supplemental covered the entire penial implant...

I will say... This is an invaluable tool... Pre and post cancer diagnosis.... It gets you up... Keeps you up... and will now be leveraged against shrinkage...

[gsun]

A good pump is expensive. So what? If it works, it's worth it. I got one from Osbon Medical. My guy shrunk from about 6" to about 4". Or maybe less. I started using the pump every day and really pumping hard. After a few months, I'm back to about 5.5" but I have to use rings to maintain it. The girth is way bigger than prior to ADT. My wife is more than good with it. I laso take 5 MG of Cilais daily to maintain blood flow.

[dmt1121]

Yes, same issue but it is not the case all the time. I tried the penic pump after recovery from my prostatectomy (as recommended by my surgeon), I found it painful and useless.

I spent over $100 on the thing. It uses suction to increase blood flow to the penis and then leaves a rubber band behind at the base of the penis to keep the blood there to maintain an erection. I guess you can just use the pump part without the rubber band but, after weeks of using it, I found it somewhat ridiculous and threw it out.

As you know , life changes in major ways with this disease. Personally, I was willing to give up on this issue, along with my sex life, in exchange for living longer.

Good luck.