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Posted 5/18/2007 5:35 PM (GMT -7)
Hello,

It has been suggested that a new thread begin for the discussion of intimacy and ED related issues following primary PCa treatment. Here is post one ............ :-)

I hope men and women will feel free to share concerns, problems, solutions and successes in all areas and in all stages of recovery. This is a very personal issue but we've all been there (or will be) and really do share an amazing "brotherhood" so to speak.

As soon as I can, I will build a site list for those looking for medical information on ED and related issues. Right now I am hoping to just get a dialong going.

Swim

Posted 5/19/2007 8:03 PM (GMT -7)
References to zinc are mostly in relation to zinc levels in men with treated hypertension. Try looking in The International Journal of Impotence Research. You may find some very useful information on the subject.

Swim
Posted 5/20/2007 12:29 AM (GMT -7)
Although only about one month post-catheter removal, my biggest concern is that Ken has no drive. I wouldn't be concerned so much if he like really, really wanted to but couldn't get an erection, but ultimately that can be fixed one way or the other, but I am not sure that the "drive" gets replaced.

I know it is still early, but what could the lack of drive be from?

We took avodart prior to surgery, and I am not sure if those hormones could still be affecting him (stopped it justt before surgery). During that, his drive was significantly reduced (maybe like once a week or so, sometimes two times a week), but with cialis and or viagra (and sometimes withouth) he would get the "desire" and the ability.

Could it be that the surgery has affected his testerone level? Or the avodart over about four and 1/2 months?

It does seem that blood is flowing to the penis, it is long and thick in the morning, pretty much back to pre-surgery state. But he just doesn't get "aroused".

And even if we say go to injections, that may make it hard, but how fun it is to have sex when there is no desire?
Posted 5/20/2007 1:02 AM (GMT -7)
Ok, I am up researching the half-life of avodart:

This one says:
"The terminal half-life of dutasteride is approximately 5 weeks at steady state. The average steady-state serum dutasteride concentration was 40 ng/mL following 0.5 mg/day for 1 year. Following daily dosing, dutasteride serum concentrations achieve 65% of steady-state concentration after 1 month and approximately 90% after 3 months. Due to the long half-life of dutasteride, serum concentrations remain detectable (greater than 0.1 ng/mL) for up to 4 to 6 months after discontinuation of treatment. "

Could it be that Avodart is still in his system? and that could possibly be contributing to his lack of libido?
Anyone with better of understanding of medicine can explain this? Or is that way to small an amount that could be possibly left to affect anything?
Posted 5/20/2007 9:16 AM (GMT -7)
Izzy
IT is very early to start to worry.

At one month we are still in the very beginning of our physical healing. Admittedly some younger men (40s/50's) will begin to work harder to return to sexual normalcy. We all need to let our bodies heal and this tends to reduce sexual drive. Also later (if potency is a problem) you will find that you both need to work to overlook the inconvenience of pills and pumps.

What you are talking about is different than returning to potency.

At one month there often is some natural tumesence that is related to internal swelling. It often goes away at two or three months and then the real job of regaining sexual health begins.

I am improving all of the time as are others. My drive continues to highten as my physical condition improves.
Posted 5/21/2007 3:35 AM (GMT -7)

Izzy,

My sex life prior to surgery was a call of arousal.

Now, in Week 14, it seems more a call to keep the tissues viable and nerves rehabilitating..... keeping the "call of arousal" option open.  It is work.

While I have never been married, I empathize with all of you working on this aspect of the relationship.  My previous attempt at a joke about Alfalfa bemoaning his loss of his "personality" doesn't seem funny here as the fragile male ego is not the critical issue in marriage.  Loyalty and toleration seem paramount.

Research of couples married over 50 years indicates only one thing they all have in common.  They are married to their best friends.

Wishing all of you couples are forever best of friends - and in perfect health.

CCedar

Posted 5/21/2007 9:34 AM (GMT -7)
Cedar,

Keep up the proactive attitude! It took a full year for Paul to get to where Levitra or Viagra worked. Cialis has a placebo effect...zip, nadda, nothing. Although today's surgical outcomes seem to be reproducing some earlier return of function, we're still talking about "some", not the average man. It's a stay and play, not load and go situation for most of us....which has its own perks by the way :>)

Medicine is making improvements all the time. Men are reporting faster and better return of function than they were just 2 years ago. With the newer versions of PDE5 drugs on the horizion, I think we may see even more smiling faces in the not too distant future :>) Keep them tissues happy in the mean time.

Swim
Posted 5/21/2007 10:58 AM (GMT -7)
I am a recent surgical graduate. I have had little to no problem with continence but must admit I am very worried about the ED. My surgeon says both neerves spared, great procedure. I have had "stirrings" but no erection at all. Granted its only been two weeks and one dose of 100mg Viagra but am I way off to have expected to see a little something? No ED problems pre surgery and for the most part was able to achieve an erection at the drop of a hat (or anyother article of clothing!)
Posted 5/21/2007 11:16 AM (GMT -7)
Pete,

I am always shocked that couples walk away from their surgeon's office with a misunderstanding about just how slowly erectile dysfunction recovers for most patients. It is the unusual for a man to respond to a PDE5 drug sooner than 5 months postoperatively and more common for it to be at about the 9-12 month mark.
The purpose of the medication at this early stage is to aide, not create recovery of function. That comes as nerves heal. You will hopefully get better and better response to meds as time passes.

I can highly suggest getting into Urology Times, The Journal of Sexual Medicine and The International Journal of Impotence Research. These are wonderful places to find a little peace in knowing you are right where you are expected to be. "Stirrings" is exactly the expected response at this stage of the healing process for you Pete.

I've read probably 10,000 articles in these and other journals and all of them lead me to one conclusion.
Either we don't listen very well or the medical community is poorly communicating the facts to patients. I suspect it may be a tad of the former and a bunch of the latter...patients generally seek the truth in my experience.

Swim
Posted 5/21/2007 12:34 PM (GMT -7)
Swim,

I'll make this brief: What about those on HT? Does trimix work for someone who was having "stirrings" but had to start Lupron 7 months after surgery?

Susan
Posted 5/21/2007 1:17 PM (GMT -7)
Hi Swim and Susan,

I think Swim is right in her explanation of the timing for return of function. I am almost 6 months post-surgery and am beginning to get an erectile response using Levitra. Nothing useable but encouraging just the same.

As far as desire for sex and HT, I know nothing about HT but have had very low testosterone lately. As long as that condition existed, I had NO desire for sex. As soon as my T level started to come back up (with T shots), my sex desire started to come back. Must be a connection or I am just weird which is very possible.

Just my two cents worth...

Jim
Posted 5/21/2007 1:48 PM (GMT -7)
Hi Jim,

I totally agree with Swim re. timing. Excellant advice for everyone.

I'm sure that the low T (for us a DESIRED result of the HT) has to do with what is going on. Myman isn't a candidate for T shots as his cancer is systemic.

Your 2 cents is really 4 cents! tongue

Susan
Posted 5/21/2007 6:29 PM (GMT -7)
Hi Susan,

Shots don't rely on nerves to cause fillingo of the cavernosa...too long to explain right now but I will, a little at a time. There is no reason why injections wouldn't work. The biggest issue usually is even having any desire while on CHB/HT. Insurances pay for the same number of injections a month that it pays for pills. Oral meds don't have a very good success rate with hormone manipulation but perhaps don't quit them completely just yet. One never knows what tomorrow brings.

Best of all that is good! Swim
Posted 5/21/2007 6:30 PM (GMT -7)
And someday I will learn how to spell..... tongue
Posted 5/21/2007 11:49 PM (GMT -7)

swimom said...

I can highly suggest getting into Urology Times, The Journal of Sexual Medicine and The International Journal of Impotence Research. These are wonderful places to find a little peace in knowing you are right where you are expected to be. "Stirrings" is exactly the expected response at this stage of the healing process for you Pete.

Not cheap, these publications:

- Urology Times: $99/year
- Journal of Sexual Medicine: $264/year (6 issues)
- International Journal of Impotence Research: $180/year online, $196 for print and online

Yikes!
Posted 5/22/2007 2:33 AM (GMT -7)
Myman,

I am 18 months out from my surgery. I get erections at night, in my sleep, but can't seem to hang on to them long enough after I wake up to do anything with them. This has been going on since about 2 months after my surgery. You can imagine how frustrating that can be. I used a pump for a while but gave that up about 8 months ago and got started on the shots. Then again my cancer wasn't systemic.

You will have to talk to your Doc, but everything I have been told or read says they work for just about everyone. Hardest part is figuring out which solution to use at what dosage. I encourage you to explore this area.

Would I rather have natural erections? You Bet!! But.... These shots are just about as good and infinitely better than trying to convince my wife she has to jump me while I'm asleep and ready. (hahah) Actually, I'm at the point where I can control my dosage well enough to predict how long it will stay up. Now THAT can be very nice for both of us.
Posted 5/22/2007 4:32 AM (GMT -7)
Thanks for the replies Swim & El Tigre - That's good news - we'll be checking into this. Next bloodwork on 5/28 & see doc on 6/06.
Posted 5/22/2007 8:27 AM (GMT -7)
Rheeb,

You can read much of the material from these journals on line. I occasionally will buy a new article however, so many of them can be found for free. Medsacpe Urology and Urology Times feature full articles on line frequently. I frequent journals as a part of my job and admittedly get drawn to those that hold special interest for me a little too often probably :>)

Swim
Posted 5/22/2007 2:25 PM (GMT -7)
Kurt and I both are very frustrated in this respect. Sometimes I feel like he waits until eleven at night to take Viagra so that I will be asleep and he can blame me. He hates the pump and has started to notice an increased thickening around the base of the shaft with the pump. This scares him. He calls it a bubble, but looks to me like it goes about halfway around. Is this normal?

I know that we are in the early stages and that parts of each nerve were removed so that it may take us longer, but even knowing that, the frustration is still there. The couple times that we have achieved intercourse, Kurt acts as if he is in pain immediately following. Depression is also an issue with him. ANy thoughts would be appreciated. Courtney
Posted 5/22/2007 4:35 PM (GMT -7)

The wives that are frustrated with their husband's lack of desire right after the surgery must understand that for us men the desire goes along with the ability to perform.  My urologist told my wife and I that it is common for the desire to not be there until a method of intervention for acceptable performance is achieved.  This is probably definitely the case for those of us that are older.  If your husbands do not like the vacuum pump, as was my case, then they should consider using the injections.  With the near normal erection I get with the injection I am in the mood more and more.  My wife and I were intimate before the injections but it was mostly for the purpose of providing sexual stimulus to her and satisfying me that I could still perform my partner role for her even though we could not have intercourse.  With the injections it is almost back to normal.  We do miss the sponaneity.

Tamu

Posted 5/22/2007 6:11 PM (GMT -7)
I don't think that Kurt lacks the desire, but the failure causes more pain. The pain has almost caused me to lose my desire! Courtney
Posted 5/22/2007 8:29 PM (GMT -7)
Courtney,

Is Kurt taking any medications for depression?

I have battled with episodes of depression before PCa and was taking depression meds. . Some of the meds can affect different people many different ways. The nuero doctor that I went to was very knowlegable about different side affects of the different meds and was able to dial me in to two types at a lower dosage that both helped the depression and did not hamper libido or performance.

Ray
Posted 5/23/2007 3:06 AM (GMT -7)

Courtney,

I also experienced the problem you described with the pump.  It is an unpleasant feeling.

I found that the "seat" of the pump at the base of the shaft was too large and the vacuum was producing the unintended inflation you described.  Inserting the smaller base ring solved that problem.  However, after creating the erection, the smaller ring was too small to be removed and had to be left at the base of the erect penis until some of the tumescence went down.

Keeping all of you in good thoughts.  ihs

CCedar

Posted 5/23/2007 4:45 AM (GMT -7)
hi everyone, since this subject to close to us, I thought I would add our experience. Jeff was able to have orgasms without an erection after the catheter was removed. we spent several months "playing" around and then started missing having intercourse. Jeff was and still is taking cialis, so we bought a pump. it works really well - getting an erection worthy of intercourse - but we don't use it all the time. it is a nuisance, the ring is hard to get off at times. we try and laugh about the process - using Arnold's accent, "we're going to pump you up!" we notice that the erections without the pump are getting better so we know that the healing is continuing. There are times that both of us think about getting intimate, then decide it's not worth the effort. I know - hugs and kisses and cuddling should be good enough! but Jeff and I get discouraged and just want it to be way it used t be. will it? we don't really know. we try to be patient and keep reminding ourselves that we have to give it time - time is something we do have now that the cancer is gone. Jeff's next appointment will be his one year anniversary (Aug 30) and we'll see where to take it then. he says he doesn't want to do the shots, maybe he will by then. let's keep up the good battle.... kat
Posted 5/23/2007 8:54 AM (GMT -7)
Hi Courtney,
I don't know if you know me as I haven't been around as much as I used to. I'm now almost 4 years since my radical and know from experiance how Kurt feels. After my surgery I slid into a depression which got so bad I wanted nothing to do with sex. As it turned out there was a physical reason for my depression but either way, depression is nothing to ignore. I was a really stupid person who let mine go so far it almost ruined my marrage and darn near put me in my grave. If you think Kurt is showing signs of depression, I urge you to get him to see someone. Maybe you or he can talk to his Primary Doctor for suggestions. I would also suggest he get a physical and blood test including testosterone which turned out to be the cause of most of my problems. I am not trying to scare you dear girl, I would just hate to see someone else follow in my footsteps when it can be prevented. This monster we call prostate cancer is not an easy thing for us guys to deal with let alone our wives & families. Physically and emotionally it takes time and can be very painful for all, but you can survive it and become a better person in every way. My wife and I are living proof of that! If you have any questions, please ask and I or one of our good friend here will be happy to answer you if we can. Good luck and God bless you both.
Your friend,
Pete
PS: Swim, did I forget anything??
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