Help with sexual side effects

I'm a wife of a post HDRBT/IMRT/ADT Gleason 9 (no surgery).

I am struggling to find a place to go (whether online or in person) to talk through options and frustrations (example: I'd like to know if other wives have been similarly irritated when their spouses just don't do the rehab necessary to try to ensure return of function, and what they did about it...things like that).

I've been looking, and I've found zero support. I tried a few therapists, but that didn't really help much...I felt like I spent most of the time in the appointments just explaining a situation they couldn't and didn't understand, then I walked out more frustrated and $150 poorer.

If anyone has any resources to point out, I'd be grateful. Thanks so much.

There was a doctor, John Mulhall, MD, at the last PCRI conference in Los Angeles who seemed to be one of the reigning experts on ED after PCa treatments. You might want to look him up. I thought he was a good speaker. Take care. -JR

Thanks for the replies. Is Frank Talk open to women? I thought it was a men only site.

As long as your husband is on ADT, not only will he have lost his ability, but worse, he will have lost his desire....Hopefully, the RT will cure him and the ADT can be stopped and your sex lives will return to normal as his testosterone level returns to normal...

I almost hate to reply, as it seems so repetitive lately.

But, in brief, after around 4-6 months, my interest in sex dropped to zero. Not that it was unpleasant at all. Just had no functional ability, and utterly no interest. Sex was as attractive, as I've said many times, as mowing the lawn or loading the dishwasher. Others have said that, and I'm echoing it. I didn't do any maintenance with my little guy just because it had absolutely no appeal, and it didn't seem like it ever would again. Pointless, and a waste of time in my addled mindset.

After recovering from ADT, some fairly acceptable ability returned. My libido is still only maybe a third of what it used to be, so even today sexual activity is a very low priority. My wife's long past menopause, and now she's in her own no-libido phase. So, for us it's not much of a problem today.

I really feel for those whose partners are greatly mismatched in desire and ability. Others have offered some good advice. You face a real challenge trying to get him excited about loading the dishwasher. It's a really perverse disease, to decimate the very aspect of our person that makes us feel like men. Our sexual lives are really important for most men, and this disease's treatments can completely steal that from us. Good luck in your efforts!

My final six month Lupron shot was ten months ago, and my sexual interest is still zero... but hot flashes galore.

After my husband was diagnosed--10 years ago after 32 years of marriage--and we had no clue if or how our sexual life would change following treatment, one of the first things I tried to do was to reassure him. The order of my priorities for him were 1. His Life, 2. His Continence, and 3. Our Sexual Intimacy. If the first two were achieved, I could give up #3 if need be, I told him.

But I also told him I didn't think that would be necessary due to the many different forms "sex" can take. We'd figure out which ways worked best for us to still be intimate even if that didn't involve any intercourse at all. I think men enjoy bringing women (particularly women they love) to orgasm. (I think this can be true even if there's little libido on the part of the man.) There are then ways women can bring loving and reciprocal pleasure, even if it only means something like giving a great backrub.

My husband only had surgery and had very little ED at all. However, even though there are those who said it shouldn't happen, his libido absolutely took a huge hit. I promised him I wouldn't take his lack of interest personally and would not think of it as any kind of rejection toward me.

If, like him, I had little libido, we would probably just have spent more time holding hands, hugging, kissing, etc. (which of course would be a good idea regardless after having just coming through such an intensely scary experience together.) But, my libido was still there so we started experimenting with our new "normal." My husband's libido eventually (VERY slowly) returned.

I think the key for us was lack of pressure, lack of judgment, and lack of frustration. The rewards that come from getting through tough times together, regardless of their nature, can be enormous.

I absolutely understand where you are coming from and you are communicating your wants and needs. what is his T level now? I know you know his numbers are grim and that is certainly going to weigh on him.

WifeofPie,

You're not a horrible person to want a fulfilling sex life. It would probably be easier for you to be patient if you felt like your husband was doing his part to rehab. Tough to say why he isn't. Could be depression. I've had long stretches in my recovery when I didn't want to take pills or use the vacuum pump and felt resigned to let nature take its course. In any event, when you're experiencing ED it certainly takes regular good faith communication between spouses to get through it. Nagging ain't the answer.

I know you've been to several therapists already, but have any of them touted themselves as specializing in counseling couples who are experiencing sexual dysfunction due to one person's medical condition? You would think SoCal has such specialists. If you haven't done so already, perhaps contact PCa treatment centers like UCLA and City of Hope and see if they can make a referral.

Wish I had better advice to offer. Don't get down on yourself about it. Takes two to tango.

He must feel awful about that!!...2 sides to every story...

WifeofPie said...
Or if it's also due to the BP meds he takes now (which he didn't need prior to diagnosis).

Not all BP meds are the same as far as erectile SE's. That was my big concern when my PCP suggested BP meds a year ago. After our discussion he prescribed Losartan which does not cause ED and, in fact, has the opposite effect in some situations. I'm not saying this is the answer to your problem but maybe you should check it out. Also, please don't feel horrible...what you are asking is reasonable...

Jim