No ED and/or continence group(s) ?

[Mati]

Is there no group here that addresses ED and/or continence issues? ED, especially, seems to be a topic with the least amount of definitive information available. I assumed on a site such as this where there are physicians available to answer questions that this would be the perfect place to obtain the best information for treating ED. Yet, I do not see this issue addressed anywhere. Have I missed something?

Not sure if this was the place to post this. I am learning my way around here.

[Arnon Krongrad, MD]

The comment on standardization is apart from the individual situation but relates to it. Let me elaborate.

Imagine you have a new diagnosis. You face treatment options. You ask: which option is associated with better likelihood of regaining erections? Almost every man asks this question.

To answer this simple question requires an approach that is methodologically sound. This requires a standard definition and a randomized trial. Without these fundamentals no man ever will be able to have a scientific answer to what you so well characterized as a simple objective.

An hour ago, by the way, I saw a 54-y old healthy man who newly reports 50% erections at 18 months post op. Nothing at a year. This is a spontaneous new development. Why is this his pattern? I am a man of finite knowledge. Only G_d knows.

Incidentally, if you know something about the Talmud, please share your reactions to the conversation in the Faith and Healing group. You have to see the article from Professor Wassersug. It's a one of a kind. It's posted there.

[Rabbi Ed]

HI, All!

While I am a newcomer to this discussion group, which I guess we ALL can say given the group's existence only in May and June 2008,,I am also an old hand at this discussion (unintended pun).

I'd like to elaborate: Before my robotic surgery my robotic doc told me I had an 85% chance (favorite surgical mantra) of having complete nerve-sparing.

However, the induction of the hormone, Lupron, in my system by a prevous urologist (whom I then left, realizing he had it all wrong) was my main source of E.D. and worse, not just the surgery.

In fact my new urologist and robotic surgeon, did such a great job in keeping me pain-free and functioning again urologically (I now have a gladder bladder!), I wrote my book Conquer Prostate Cancer (out next month) about the surgery and its aftermath and he became a friend and contributing author. I found nothing wrong with this doc, that's for sure.

The problem is that by then, before and after surgery, and months on end, I still had hot flashes for the next half year, with a low libido that has continued for lo this last 1 1/2 years. This was coupled with the inability to...well, couple! (I try to use SOME euphemisms!)

I have a lot more to say about this in a blog message at www.ConquerProstateCancer.com that I'm writing , based on a related recent discussion. What I don't get is (a) how incredibly explosive the discussion in this forum grew since May, when Mati asked to get an ED discussion group going; but I also don't get:
(b) what happened to any followup dicussion after June, when Marck Rosenblatt responded (just before this note)?

I'm eager to continue this thread. Did it just stop in a dead halt or is this thread somewhere else and I'm just missing something?

[Michael]

Sorry Kathy, I really think this is a men's issue. You take some liberties with some of your comments above, and in simple terms, it's annoying.

Much in the way that I will never understand the psychological impact of living a life with a double mastectomy, you will never understand living a life without a prostate.

[Kathy Meade]

Mike,

I have to respectfully disagree with you. Having a double mastectomy does not make it impossible to have sexual relations, unless problems are emotional. Prostate cancer treatment may make sexual relations difficult. Unless you are having sex alone, your partner is impacted by the side effects of the disease.

I was impacted by my husband's disease. Our relationship was very good and I was part of his process with prostate cancer. It did not cause us problems that we could not work through but I have spoken to many people who have had major issues, both men and women.

I have also given many presentations on intimacy after prostate cancer, different than the mechanical or self image issues but all related. It is the topic I can best discuss from my personal experience. They have been very, very well accepted and always bring on interesting discussions. I am only repeating feedback I have received from others in my entry above. Your experience may be very different but that does not mean their experience was not real for them.

The list on prostate pointers related to ED/intimacy issues has frequent input from women and it is enlightening to both the men and women to have these issues discussed in a forum where they both participate.

It is not unusual for the woman to be the part of the couple who has the apparent biggest problems. Some men just accept the problem as their new reality. They withdraw and not much can be done to help the relationship unless they talk.

Sorry if you are annoyed but since I was part of a team living with the problem, my opinions are as important as yours. It was my problem as much as it was his.

Can you understand what it is like for a woman to lose the closeness a woman receives from sex? Can you understand what it is like for a woman to feel like she no longer is attractive to her husband because his penis does not respond to her? Can you understand what it is like when a man is on hormone therapy and she finds it is like living with her sister because he forgets she is a woman and has needs?

Sorry it impacts both partners.I know men experience great trauma but women do also and if we are going to have a realistic discussion issues for both sexes need to be considered.

[Lenny Hirsch]

Mike, I understand where you are coming from, but at the same time agree 100% with Kathy.
I underwent RP while still together with my wife, but we separated shortly afterwards, not because of the surgery or side effects. At the age of 62 I started courting with penile shrinkage, ED and a desparate fincial situation. On top of this the cancer returned and I was hormones to contain it. I decided that I had two choices. To be depressed and feel sorry for myself or look at the half full section of the glass

I was very honest with the women I was dating and soon learned that not being a sexual athlete was not that important or having a big hard penis. We found many ways of satisfying each other. I met many wonderful women till I found my present partner. I am now more sexually active than I have ever been. I know that I am a lot older than you and that it is easy to say that I do not understand what a young man is experiencingThat is not true! You have a choice of closing doors of the past and opening new doors that reveal another world that can allow many wonderful experiences. Do not push aside the input from a woman, after all you are dependent for a woman's co-operation

[Marc Rosenblatt]

Mike,
Thanks for the response. Maybe it is an age issue! I never met anyone in the 30's who had the surgery. I tend to think that the so called nerve sparing is a croc, for most of the men I spoke to had the "nerve sparing" surgery. I had and have a lot of faith in my surgeon and know he did the best for me, but....
Regards and a continued success!
Marc

[Arnon Krongrad, MD]

Who you meet partly reflects where you hang out. Most men who function well don't hang out on a network like this and don't talk about their erections. There is a potentially huge selection bias at work here. With that said, there is at least one man on this network who is in his 60s and who has (privately) reported erections in the second year. That's yet another critical point in the multifactorial world of erections and sexuality: time to recovery varies enormously. I had a 50 y old healthy, thin man tell me his erections returns four years after prostatectomy. Go explain that one. I cannot.

Many points have been raised. The Burnett video (see above) raises more. Think about them. Discuss them with your surgeon.

[Keith J Symon]

I guess it is time to jump in here, so I'll take the chance.
I am approaching 63, had LRP 21 months ago.

Yes, I think there is a strong and inevitable bias in these discussions, as mentioned in another thread on these forums.
A few months after my surgery, with little direct information available from experts I joined some internet forums to try to learn about ED and Incontinence, the best of which was Prostate Pointers. I learned a tremendous amount in a very short time, both medical details and social/psychological/relationship insights.

Ultimately though, when I stopped finding much new information, I dropped away from the forums. The reasons were very clear for me. I was hearing very very little about successful outcomes. I did not have any of my own to add. I found it very discouraging and finally even depressing to read all the very hard and difficult experiences being posted, some by men and/or their partners who had even less time after treatment than I. They were real and often very sad struggles, but I was ready to move on and find other stories.
The last forum I finally let go of was the prostate humor forum :-)

So, briefly as I can, here is my story. Nerve sparing LRP in Nov. '06. Complete ED and incontinence as expected. My partner in sweet intimacy before surgery said good by after our Christmas ski trip, before my post surgical abstinence was done. So no prospect of "rehabilitation". I always smile at that euphemism, black humor that it is.
I struggled with the incontinence and bladder discomfort for 6 months and then began to slowly dry up. I have been "dry" since month 8, though it took me a long time to stop carrying my "security" pads around. I still have discomfort if I wait too long to pee.
The ED was a longer issue. How was I to know? I was single and living in a respectable small town. I did try some of the more benign things I had read about, a pump and Viagra, to "maintain the blood flow" and "rehabilitate". I was able to have an orgasm, as has been related here. After about a year I let go of most of that, though there were some hopeful signs. I knew from all the forums how critical an optimistic and hopeful partner is to all this. That was maybe the most discouraging part.
Then I began to have a few night erections, and I stopped the "aids to blood flow" entirely in favor of those. That was about 13 months out.
Five months ago I reconnected with a woman I had dated in High School. When we began intimacy, there were no erections. We do often use Viagra, at first in full doses. What we discovered, again as has been mentioned a few times here, was the real pleasure of slow and creative intimacy. She was thrilled that I would be interested in continuing for extended play since I was not having easy orgasms. We continue to learn things about ourselves we never would have otherwise. Erections did come in time, and though they take happy effort to achieve they can be wonderfully satisfying. Though I am, as many man say, of course shooting blanks. I still have some questions there.
The erections now can be found at times without the blue pills.

But she lives in RI and I live in WI. So far! Oh well.

That is my story though maybe not so brief. It took 15 months, patience, anger, humor, optimism, research and finally a partner with all that and more herself.
I hope this has been helpful or at least of interest. It was for me. Thanks for the opportunity.

[Arnon Krongrad, MD]

So beautifully and thoughtfully and openly written.

[Angela Jenkins]

Keith - thanks so much for telling your story. You are correct in that those of us new of this journey need to hear encouraging stories. Glad to have you here.

[Molly]

Hi Mati, As I am new to this I am not sure if you have already received these web site addresses so I apologise if I am just repeating what has already been said.
http://www.renewintimacy.org/
http://www.prostatehealth.org.au/v3/html/sheet_6.htm
http://www.prostatepointers.org/
http://health.groups.yahoo.com/group/prostatecancerandsex/
http://www.phoenix5.org/
http://www.phoenix5.org/stories/firstpers/persHarrodJAMA.html
http://www.medicinenet.com/impotence_ed/page2.htm
http://www.yanonow.net/

Hope you find some of these useful . I can honestly say that my experience with Australian Doctor's has not been the best with regard to the information that is provided to patients on this topic, it is incredibly dissapointing to say the least.

Kind regards
Molly

[PaulC]

A quick correction to that last URL. It should be

• www.yananow.net

with two "a"s. (yana = "you are not alone")