RE: to ellen's NOT indelicate question...

[Guest guest]

ellen, i sincerely hope my response doesn't make you regret that you brought

the topic up, but personally, i do NOT feel your question is indelicate at

all... not in the least. this is a PSC " support " group, after all, and in

my humble opinion, we who are part of this wonderfully supportive group NEED

to feel that we CAN dialogue about ANYTHING with respect to needed

information/support.

after much time and thought about this, i'd have to say there's no " one "

definite answer to your question... i know, because i have raised this same

concern here before. my husband's libido is pretty much zero (i can't even

remember the last time he made love to me), with about 4 attempts at

lovemaking over the past 2+ years... but there are PSCers out there who

" proudly " claim to be absolutely 100% fine in that department. i found that

as soon as jim simply " gave in " to his PSC-related fatigue, he more or less

stopped having interest in sex.

in our case, we tested jim's testosterone, and the number was still

sky-high... we (or, rather, i) asked jim's doctor about his change in

libido, and the platitude i received was something to the effect of " honey,

when you feel like crap, you just don't FEEL like doing it... "

i'm reminded of a time years ago, in our hospital's " liver disease support

group, " when a man broke down in tears because he hadn't touched his wife in

over six months...

now i think to myself, " six months?! " *sigh*

in retrospect, i could NEVER have comprehended back then that i would, in

time, be facing much worse than this man's reality. as a woman, i have

always felt that sex began " outside " the bedroom anyway, and i have always

valued intimacy more than " the sex act " itself -- i.e., that " special

feeling of closeness " which comes from a kind word, aptly spoken; a smile; a

shoulder rub; walking hand in hand; a big, long, warm, cuddly, heart-melting

hug; sharing a bowl of popcorn together on the sofa; a foot rub; receiving

unexpected flowers; an unexpected kiss on the top of my head... or my

cheek... or my neck, when i'm sitting at this here computer; a game of cards

or backgammon or scrabble; working together in the garden; conversations on

the phone; lying in his arms in bed (in his case, nothing more than that, i

assure you...) sounds like we have a pretty good life, you say? well,

yes... we have everything, it seems... everything " but " sex.

by the same token, " support " people (spouses and significant others) " can "

also report a drop in their own libido, usually due to an increase in

fatigue and stress which stems from their loved ones' increased fatigue due

to PSC (i hope that makes sense to you... it does to me). for instance (and

put a different way), one woman mentioned that since her husband's dx and

subsequent extreme fatigue, she's had to do MUCH more around the house (and

with their children) ...which leaves her exhausted ...and rarely if ever in

the mood for passionate lovemaking. this also makes sense to me. speaking

from personal experience, motherhood is enough of a " rewarding challenge, "

even with a HEALTHY spouse to occasionally help out!

you mentioned the overall stress of the PSC dx, a sudden loss of weight

after a doubling of actigall, and a lack of vacation... certainly these are

worth consideration, but i would think it would be foolish for everyone out

there in PSC-Land to be like ostriches, burying their collective heads in

the sand, when it comes to matters of diminished libido.

i say, the MORE that those of us experiencing this problem are able to

discuss this " delicate " matter within the safe confines of this PSC support

group, the better. it can be very frustrating, very sad, very

heartbreaking, to have to experience this, trust me. if this isn't your

problem, consider yourself VERY blessed! i'm ONLY saying all this that so

that we aren't deluded with a response of (insensitive?) jokes and banter

over the next few days. at any rate, this particular topic should NOT have

to be taboo!

looking back, i don't think i realized as a fresh-faced bride of 20 the

" real meaning " of the part of my wedding vows, those " in sickness and in

health " words. they say that " youth is wasted on the young " -- truly, " the

young " DO tend to feel immortal, and take their good health for granted!

(jim and i certainly did!) i don't know how long you've been married, ellen

(i've been married for going on 26 years), but i'm betting that if you try,

you and your sweetie will be able to find " alternate " ways to feel

intimately connected, and build your friendship. and if occasional sex

happens to serendipitously drop in your lap every once in a blue moon, well,

that's the frosting on the cake! i remember an old ann lander's advice

column which featured the response to a poll, where women overwhelmingly

said they'd take a long, warm embrace over " sex " any day.

have you ever wondered what recourse the spouse of a wheelchair-bound

paraplegic has (or a diabetic, or whatever other physical situation which

carries with it the risk of diminished libido...)? well... the good news

is, if i am to believe my doctor, you can look forward to returning to

normalcy in this department after transplantation.

i know i've gone on far too long -- my apologies to the group -- but this

whole subject is a landmine for me. without knowing it, ellen, you went and

stepped on that landmine and KABOOM! the result is this long venting e-mail

(which i sometimes have to do to stay sane).

with kind regards from one in the same boat,

maureen :-)

[Guest guest]

Maureen,

You stated very well the frustrations and alternatives that face

those struggling with libido problems. As your doctor said,

those problems do resolve when transplanted.

TimR

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