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Posted 1/22/2018 11:27 PM (GMT -5)
I am 14 1/2 months post RP.

At my most recent visit to urologist for follow up, I had long conversation with my doc about my feelings which progressively worsened in the past couple of months. He checked my testicles and penis, try to get soft stretch penis length which was disappointing, and asked multiple questions about any new development in my post op course over the last 3 months, if I did have any reaction to Cialis and Viagra, anything spontaneous at night or early mornings which might look as partial erection etc. Also asked about my libido to which i answered as I want to have sex but when I see that my penis is nothing but stump, I loose libido and desire without even trying. Lost 2+ inches of length and lots of girth, in flaccid state just second navel down there where penis used to hang. In regards to erectile function recovery, I am still where I was on post op day 1. Nothing started yet. I can get erection with TRIMIX and BIMIX but my penis looks pathetically small like when I was 11 years old. VED never produced usable erection sufficient for penetration even with the constricting bands. I am still using Cialis and Viagra with no results of any kind.

He also asked about my physical activity and excercising and we talked about that for a while.

At the end he said he is going to order Testosterone levels with PSA.

Last Friday I got results which are good and bad.

Good first: My PSA is <0.01 - undetectable for which I am very thankful.

Bad: My Testosterone came back with following numbers:

Total Testosterone 217 (270 - 1070)

SHBG 21.5 (11.2–78.1)

Free Testosteron 5.24. (4.6–24.4)

Urologist called pharmacy with prescription for Clomiphene Citrate 50 mg to be taken every other day.

I do not expect miracle from this medication but certainly hope for some movement in positive direction.

I would like to know if anyone experienced Low T in post prostatectomy time?

MK
Posted 1/23/2018 8:25 AM (GMT -5)

MK1965 said...
I would like to know if anyone experienced Low T in post prostatectomy time?

MK,

Very sorry about your situation. Can tell this is a downer for you. It would be for most anyone.

But I am happy about your great PSA test. We know the old adage "Dead men don't have sex". So you've got that. Also, looks like the continence is going great.

Yes, my T was bumping around 200's / low 300's post surgery, though I suspect my levels had been depressed for years and just were never tested until I forced the issue with docs some time after my RALP. Have some varicocele on left side and always have had--probably doesn't help me any. Now, I'm doing the TRT injections and do pretty well with shots + any of the ED pills + c**k rings. Have been past RALP about six years, with years three and four on TRT gels (didn't work very well), and then recent years on TRT injections.

Have heard of some loss of length after surgery, Mine was about 1" loss, don't ask me how I know. Girth, not so sure it would be affected by surgery. May be related to the lower T. Certainly, any anxiety about all this could impact libido, and therefore "readiness". Guess that's why the ED meds' handouts clearly state they won't work in absence of real desire/libido. If you feel that some mild depression may be going on, you may want to run that by a specialist, as it can be a real boner killer.

For most women, size isn't that big an issue (except for the "size queens"), and other techniques can satisfy them quite well.

My guess is once you get the TRT underway things will move in a positive direction. Hope so. Also want to add that everyone says first two years after surgery are the key years to get ED fixed. But, I'll swear, I've been out nearly six years, and more progress came for me after the first two than before. So please be patient and give it enough time.

Also, there is a web site "t-nation" that may give some added TRT info by searching its forum. Not saying you should get medical advice there. But you can use its search button for things like "clomiphene" and see what others have experienced. In addition to what you can find on this site.

Robert
Posted 1/23/2018 9:08 AM (GMT -5)
Your T is somewhat low. At my last physical (10/2017) my T was in the 200s, in December it was about 370 - it will bounce around quite a bit. The VA will not take blood for T after 10 am, it should be the highest in the morning. The trigger level for the VA to intervene is about 180. Even with my T in the 300s, I have zero libido and no chance for an erection.

I suggest you check your T again, maybe a few weeks later.
Posted 1/23/2018 9:35 AM (GMT -5)
MK1965:

My case is a bit different. I had surgery and then, when my post-op pathology report came back alarming, I followed that up with radiation and two years of androgen deprivation therapy (ADT / chemical castration.) Nine out of ten guys' T level recovers after ADT. My recovery was disappointing and insufficient.

For six months I did the clomiphene citrate thing that your doctor has prescribed. That's a good first thing to try. It is safe, well tolerated, and it works for a lot of guys with low T. But, after six months, it was obvious it wasn't doing the job for me since my T level didn't respond. The next thing I tried was six months of human Chorionic Gonadotrophin (hCG) self-injections along with the clomiphene citrate. This is also both well tolerated and usually effective. My T level stayed flat. *sigh*

For the last couple of weeks I have been trying to hook up with an affordable testosterone gel. In the past I've used coupons for GoodRx.com to score deep discounts on other drugs (check them out if your clomiphine is expensive) and ditto for the hCG. But those deep discounts for T gel are elusive. You have to have just the right thing on your prescription to get the discount and I haven't figured out what that is. I've never been good at "Simon Says" or "Mother May I?" or similar remembering-what-to-say games and I've given up on the manufactured products and am going with a T gel from my local compounding pharmacy -- the same kind of pharmacy where you got your trimix.

The low T problem can be addressed. But in the meanwhile don't give up on the penile rehab (pills, trimix, etc.). When you get your mojo back you'll want the little guy in as good a shape as possible.

And one thing... the main way that prostate cancer treatment messes with men's sex lives is that it tricks us into paying attention to ourselves and our, er, shortcomings when it's always been our partners we found sexy before the surgery.
Posted 1/23/2018 3:08 PM (GMT -5)
Did you ever get a baseline T level before your RP? Prostate cancer is often associated with low natural T levels (hypogonadism). I hope the clomid jump starts it.

Some guys have seen some size regrowth by using a penis pump religiously.
Posted 1/23/2018 3:22 PM (GMT -5)
Yes. It was 597 at age 47, about 4 1/2 years before being diagnosed with prostate Ca. My PSA was 0.52 and that was my first ever PSA.
Posted 1/24/2018 9:05 AM (GMT -5)
MK - My case is another long-term outlier. I did not have surgery - I had CyberKnife radiation treatment. I have been symptomatic hypogonadal from my 50's onward. I was/have been using a T-replacement gel for about 6 years now - before diagnosis, during treatment and now, after treatment. For me, the gel works. My last T level was about 750 (and I am now 70 years old). I accept. Unfortunately, function is iffy, and less than desired, but all other things are as they should be - mental ability (no fog), exercise tolerance, libido, general mood, etc.

The other thing I will mention is my experience with clomiphene citrate (clomid). As a younger man (over 30 years ago), I had a very low sperm count. We were trying to have children. My wife's gyno was a very forward-thinking man who was on top of all the newest ideas in his field. He prescribed clomid (for me, not the wife). I only took it for a couple of months, but the results were remarkable. I immediately felt better in ways I couldn't have expected. Of course, back then, I was not offered TRT. To make the very long story very short, within a couple of months we were expecting. For me, the clomid worked. It may for you, too.
Posted 1/24/2018 10:08 AM (GMT -5)
MK1965,

Buried at the end of PDA's reply is the most important thing for your situation. Reread:

PeterDisAbelard. said...

And one thing... the main way that prostate cancer treatment messes with men's sex lives is that it tricks us into paying attention to ourselves and our, er, shortcomings when it's always been our partners we found sexy before the surgery.


A radical prostatectomy does not alter your testosterone levels...they are not connected. PDA is pointing out that the RP has altered your confidence; your psychological state of being. If fact, you already said it yourself:

MK1965 said...
Also asked about my libido to which i answered as I want to have sex but when I see that my penis is nothing but stump, I loose libido and desire without even trying.

You've got to keep aggressively working the rehab (which will also restore size), but you've also got to address the psychological issues in order to more successfully recover.
Posted 1/24/2018 11:37 AM (GMT -5)
Do you do Kegel Exercise?

BJU article said...
Pelvic floor exercises are very effective in treating erectile dysfunction. The ischiocavernosus and bulbocavernosus muscles are superficial pelvic floor muscles that are active during erection and which enhance rigidity. The bulbocavernosus muscle encircles 33–50% of the base of the penis and has three functions: it is responsible for preventing blood from escaping during an erection by exerting pressure on the deep dorsal vein; it is active and pumps during ejaculation; and it empties the bulbar urethra by reflex action after micturition.

The aim of the present study was to examine the role of pelvic floor muscle exercises (focusing on the bulbocavernosus and ischiocavernosus muscles) as a key to restoring erectile function.

onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2005.05690.x/full
Posted 1/24/2018 4:13 PM (GMT -5)
NKinney - I don't have the reference, but TA has sometimes posted a link to a study that showed that it was common for T levels to drop for a period of time after RP. I don't remember specifics (didn't have surgery), but the possible time range was surprisingly broad, and the drop in levels was significant.
Posted 1/24/2018 4:30 PM (GMT -5)
Johns Hopkins researchers found a short-term surge in testosterone following RP, but it didn't amount to much. Their summary was that depression is a more likely cause of diminished libido after surgery. Treating the depression restores the patient's sex drive. LINK
Posted 1/24/2018 6:58 PM (GMT -5)
Paxton-

I don't recall posting a link about low T after RP, only after RT. If I said that, I was wrong.
Posted 1/24/2018 9:42 PM (GMT -5)
Nkinney,
If you look at my stats, I never had any problems with achieving and maintaining erections as long as my wife and I wanted. On the weekends would not be surprise to go for third round before falling asleep and also sex would be first thing next morning. I was not on any medications, was very healthy in excellent shape excercising regularly, non drinker, non smoker, watched last 30years what I eat and how much I eat. My wife is an RN and also excellent cook and with my cooking abilities which are great we raced up 2 beautiful girls who learned very healthy lifestyle from us.
As I mentioned earlier at age of 47, my testosterone level was 597 and I was feeling great in every aspect of life and everything functioned well till day I had my RP.
After RP my life becomes a hell. I wanted to restore my sexual function to at least close level what it was before surgery. Whatever I tried nothing worked and days,weeks and months are passing by.
I did everything possible to restore it but with no success at all. I was and still I am at ground zero where I was at the day of surgery when I woke up.
How
Posted 1/25/2018 8:18 AM (GMT -5)

Tall Allen said...
Paxton-

I don't recall posting a link about low T after RP, only after RT. If I said that, I was wrong.

Or I "mis-remembered."

That part of getting old(er) stinks.
Posted 1/25/2018 10:41 AM (GMT -5)
MK1965, I'm glad to hear that you are initiating some testosterone therapy. Keep in mind that you've got battles going in two fronts: sexual function, and libido. They are not the same. I think it's very clear primarily from your comments (and the reference I previously provided; and also see PDA's comment again) that you've got self-defeating, self-fulfilling anxiety issues that need to be addressed in order to reach improved recovery. Be sure to take a pleasure-oriented mentality, not focus on getting a boner and your performance. And don't overdo it in your "recovery" by watching too many supermodels/MILFs which can de-sensitize you. Relax.

One other thing you said caught my eye; you said: "I am still using Cialis and Viagra..." You aren't using both, are you? Or using more than recommended dose? Because doing either can have a counter-productive effect.





No problem, Paxton. We are all different, but if I'm unsure about something I usually check it out first before saying something goofy. Think first, speak second.
Posted 1/25/2018 11:12 AM (GMT -5)
NKinney,
Watching **** is agains my moral values and I do not care about ****.
Second, my mental state is about the same as it was before RP.
All this ongoing SE are result of RP and I do not agree with you and PDA that SE are mental issues.
If you guys want to use psych meds, feel free to do it. I don’t want to try them at all.
As you can see on this forum and others, it is thousands and thousands patients with same issues post RP surgery and it is not coincidence.
This is a hard fact which tells RP is barbaric method of treatment with non recoverable SE.
As I said before, it should be last effort to cure cancer, not a first choice.
I also said, the younger we are at time of RP the longer we will suffer SE and will have lower QoL after surgery.
Dr. Levine said it most honesty about sexual function recovery after Prostatectomy.
Search for: Sexual function recovery after prostatectomy and look for Dr. Levine article.

http://www.medscape.com/viewarticle/854273
Posted 1/25/2018 12:04 PM (GMT -5)
OK then. You can wait for an answer that you like.

But your own words don't seem to align--

    You just said: "my mental state is about the same as it was before RP"

    But you also said: "when I see that my penis is nothing but stump, I loose libido and desire without even trying." That doesn't sound like your before-RP state-of-mind.

    And you also said: "After RP my life becomes a hell." That doesn't sound like your before-RP state-of-mind.

You gotta decide for yourself. Which is it?

BTW, neither PDA nor myself said to start taking psych meds. Addressing psychological issues (and willingness to do so) begins with self-reflection.

And when you say "I do not agree with you and PDA that SE [what you meant to say was loss of libido following RP]are mental issues," know that you are also not agreeing with the fine folks at Memorial Sloan Kettering who are recognized as the world's leading experts in these sorts of things (see, again, the link I previously provided).

Maybe somebody else will come along now and tell you what you want to hear...

Good luck, and best wishes. Truly
Posted 1/25/2018 12:13 PM (GMT -5)
MK:

The article you linked* has two parts, did you notice? The first page is by Dr. Levine and deals with the physical problems that men experience sexually after prostate surgery. The second part, by Kate O-Rourke, deals with the mental/emotional problems. They were published together because neither of them shows the whole picture without the other. Both describe problems that men have and both suggest remedies to mitigate those problems.

If you think about it calmly I expect you will find your statement, that your mental state is the same as it was before RP, isn't really true. You appear to be frustrated, discouraged, angry and miserable, at least as far as your sex life is concerned. From what you've told us about how you were before RP you weren't any of those things before.

I am not saying -- and although he frequently irks me, Nkinney is not saying -- that the sexual problems men have after prostate surgery are all in their heads. What I am saying is that the physical problems following RP play holy hell with men's confidence and this makes it difficult for them to regain those parts of their sex lives that still remain.

*The article is behind a registration-wall. Registration for Medscape is free and easy and the articles are worth reading.
Posted 1/25/2018 1:21 PM (GMT -5)
I started this tread asking others with low T post prostatectomy for their experiences and how they overcome it.
It turns out this tread deviated sharply from its intent. I see posts that are not helpful and not having anything positive in it but irrelevant criticism. That can not make anyone feeling better, can not promote hope and it is not bringing light to those in need.
I certainly want to thank to few who expressed their experience and who gave me some comfort and hope.
I wish to here from others with same or similar experience in their post surgery life.

MK
Posted 1/25/2018 7:15 PM (GMT -5)
I developed ED Post-Prostatectomy in February, 2004 at age 65 and was not able to achieve an erection satisfactory for intercourse using PDE-5 Inhibitors, VED, etc.
Needless to say, I was very depressed at that time!
Then in November 2007 I had the opportunity to speak with 2 men who had been implanted with the
Coloplast Titan IPP (Inflatable Penile Prosthesis) to correct their ED.
3 weeks after speaking with these men, I was implanted with the Titan IPP and it completely corrected my
ED and restored both my sex life and the emotional bond with my wife (we were High School Sweethearts!)
This greatly improved my life both physically and mentally and, thankfully, we are still enjoying an active sex life 10 years Post-Implant.
I share this story so that men currently suffering with ED, which has not responded to PDE-5 Inhibitors, etc., may consider the above Treatment Option.
As in my case, each man must make the final decision whether or not to proceed.
Hope this has been helpful.
Bob
Posted 5/11/2018 9:55 PM (GMT -5)
Just to update on my testosterone.
Rechecked on April 16th after 3 months-on taking Clomiphene 50 mg every other day.
My testosterone went up to 602, PSA was still <0.1 which is also good.
I started having more energy and my sleep improved greatly.
I did not experience any sign of erectile function returning.
I am 18 months post RP and still nothing spontaneous, nothing with Viagra and Cialis.
Did not regain a bit of lost length, still short 2+ inches.
Started seeing flattening on both side of penile shaft, the location where I stick needle.
I am wondering if it is time to start looking for an implant?

MK
Posted 5/11/2018 10:31 PM (GMT -5)
I'm glad the Clomid at least had some positive effect.

Scar tissue from the injections is not a good thing. MSK reports some return of erectile function 3 years later with use of pump, injections and ED meds. Everyone i know who's had a penile implant is happy that he did it.
Posted 5/11/2018 11:31 PM (GMT -5)
Time to start looking? ... thinking? Sure.

Time to pull the trigger? Dunno. That's a more difficult question. You're about 18 months post-op. There's still some chance that you will regain some erectile function. But less and less chance every day. I'd give things maybe another six months then think about an implant.

I'm fairly happy with mine.
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