Im so embarassed to post this, but I need answers...

[Neo]

I have been on dialysis about 4 years as most of you know me by now. Im in my 20's, I have a gf in her 20's and lets just say I dont ever feel like ummmm uhh ill make it PG ..lol Make whoopee... I dont have erectile dysfunction problems at all, I just never feel like doing it.. I went to my urologist today they did a testosterone test and it was normal, and he said basically "well when you get your transplant you'll get it back", WOW WHAT A GENIUS HE WAS TO TELL ME THAT LIKE I DIDNT ALREADY KNOW THAT ONE..LoL This doesn't strain my relationship because I have a GREAT gf of 2 years and were going to vegas on june 5th by the way..yay!! But I am young my gf is young, and I want to solve this problem. I know my libido will come back when i get my transplant which will probably be within this year, but I always come to you guys when I need answers so please, anyone in the same boat? I would appreciate something, anything, that is helpful,  Im really embarrassed too post this, its taken me a couple months to get the guts up to talk to you all about this. It really has never been a problem until like the last 6 months i would say. I was told that HgH might help but ive got to research it a bit and talk to my nephrologist to make sure its safe..So please COMMENT AWAY AND GIVE ME SOME ADVICE!!!...NeO

[flip]

It varies from person to person. I'm 59 and on dialysis but mine hasn't suffered.

[mikey07840]

I'm 42 and have been on both hemo and PD since February. So far no problems with that yet.

[fluffy]

You arent alone dude, i've got the exact same problem, me and my fiancee are both 25 and im just never in the mood at all. seeing an endocrinologist might help a bit but i couldnt tell you since im on a waiting list for an MRI which i need before he can help me.

[okarol]

I'm sorry Neo. It must be frustrating for you, and your g/f. 

Here's some info http://www.davita.com/kidney-disease/complications/a/609 Male sexuality and chronic kidney disease

And this http://ndt.oxfordjournals.org/cgi/content/full/15/10/1525 End-stage renal disease and erectile dysfunction. Is there any hope?

I have asked some of these same questions regarding Jenna. She has very low libido, for a 22 years old, and her nephrologist thinks it could be related to testosterone, and possibly the adrenal glands.

from http://www.nichd.nih.gov/health/topics/Adrenal_Gland_Disorders.cfm: What are the adrenal glands?
The adrenal glands are the part of the body responsible for releasing three different classes of hormones. These hormones control many important functions in the body, such as:

    * Maintaining metabolic processes, such as managing blood sugar levels and regulating inflammation
    * Regulating the balance of salt and water
    * Controlling the "fight or flight" response to stress
    * Maintaining pregnancy
    * Initiating and controlling sexual maturation during childhood and puberty

The adrenal glands are also an important source of sex steroids, such as estrogen and testosterone.

Even after Jenna's transplant her libido hasn't improved much, and her doctor is researching what to do about it. There's not much info regarding females in this area. It seems to me that "not having the urge" is pretty common among patients who had renal insufficiency developing during their childhood through early adulthood.

Having said all that, it probably doesn't help much. If I learn any more I will let you know.

[Neo]

You know the adrenal gland thing might be it! I was told by a doctor when i was in the hospital years back that everythign was normal except he said my adrenal gland levels were low but said dont worry about it it wasnt a problem.. Im gonna go to an endocrinologist now, thanks for the great idea!!! Cuz its not erectile dysfunction everything works i just dont feel like doing it. Thanks, for the info..My gf thanks you as well..LoL

[Sluff]

good Luck Neo.

[twirl]

you know that commerical about erectile dysfunction and it states that if you have a 4 hour erection go to the ER--
I say if you have a four hour erection your gf needs to go to the er
relationships are with the ups and the downs---- now may be a down time
you have been thru so much together
I think you will be fine
my husband does not think PKD should have anything to do with sexual drive or motivation or whatever,
he is so wrong........but I love him and he will go get perscriptions
and he is damn good with a mop,
sometimes I look at it like it is another chore to get done===== that may be easier for women
you are a cutie pie and it sounds like your gf loves you

[stauffenberg]

It is important to distinguish male potency -- the ability to achieve and sustain an erection -- from libido, which is the desire for sex.  Both functions can be damaged in renal patients.  Erectile capacity can be reduced by low blood pressure, accelerated vascular disease, and neuropathy.  Libido can be reduced by exhaustion secondary to low hemoglobin levels, by damage to the pituitary gland causing it to stop signaling the gonads to produce sex hormones, and by other hormonal deficiencies frequently found in dialysis patients, such as hypothyroidism and adrenal exhaustion.  In two-thirds of patients, sexuality returns after a transplant, with the odds being lower the longer the patient has remained on dialysis.

[Romona]

It is part of the disease and sometimes medications too. Have fun in Vegas. Personally sometimes for me all I want is to cuddle.

[Neo]

THanks everyone It was real hard to talk about this with anyone.. BUt I am going to see the endocrinologist, but Ill have fun in vegas, I didnt say I didnt ever do it.. So we will have fun!! THanks everyone please keeep giving me updates on anyhting new and its always comforting to relate with someone...Cuz being my age I dont really have anyoen that i can really relate to being as most the people on dialysis in my unit are way older than me...

[migaguiar]

Its completely normal. You missed a thread her a week back about us renal patients having the urge or not. It seemed like 6 or 7 out of 10 had no urges at all.
My Doc offered med but i said it wasnt necessary because i was more worried about my health but in retrospect my gf is young too so I will take my doc up on the offer soon.
Id rather have hgh than libido stuff though. so dont worry about it. Its not just you.

[monrein]

Hi Neo
Do a search of "sex" on the IHD site and you'll find some threads on this topic with various people's input.  Best of luck to you and your gf. 

[RichardMEL]

G'day Neo. I know it's hard (no pun!) to talk about this sort of issue but I reckon it's as valid an issue for renal patients as oh.. fluid intake or keeping to the diet etc. It's yet another facet of how having kidney failure can affect our lives.. and let's face it sex is a normal part of human life that the vast majority of us enjoy and want to do

I don't have the "want" problem I have the "ability" problem... not in an erection sense... I can get real worked up wanting it, and the physical part is OK... that is until things get going and the energy level drops to zero faster than you can say iron man on original battery thingy. That's when it sucks... I'm there.. I want to do it... but the ability just isn't there.

Of course it's not REALLY a problem for me because I'm not currently with a willing partner.. but if I was I know it wouldn't be satisfying for either of us.. and that can cause its own problems when you fear you won't be able to which in turn puts you off and makes it worse. blah!

Bring on transplants for us all so we can all get on with having (and wanting!) heaps of sex (amongst other things!)

[Lori1851]

Neo,
I think you could relate real well to my son Dustin who is 22 and will be 23 in Sept. If you dont care I will tell him about you. Maybe you two could write to each other once in awhile. Lord knows he would open up to someone else besides OLD MOM any whooooo have a GREAT time at Vegas you lucky dog!!!!!

Lori/Indiana

[paddbear0000]

Neo, you're definitely not alone in this one! My sex drive is dead too. It's been dying slowly since last year. And my husband and I just celebrated our 1 year anniversary!     

[kitkatz]

Sex drive? Who has one of those things?  Mine got up and left ages a go. Poor hubby.  He just does not get it. It does not mean I do not love you, I tell him, I am tired.  Leave me be.  I think he would like sex every day.  Sheez!

[Neo]

I have good news! Things are improving we are spending more time together on non dialysis days. Its been much better on those days because my energy is so much better, I dialyze monday night wed, friday nocturnal.. I feel drained on tuesday thursday and saturday but feel real good mon, wed, Friday,and sunday, I think it has a lot to do with my energy level because its sapped after dialysis. Im still going to go to the endocrinologist and see if i can get anything to help my energy level but we'll see what happens.. Oh and Vegas is next week!!!!! WOoHoo!! So maybe Ill win big and go buy a kidney over seas..LoL j/k..... And Lori, i'd  definitely get to know your son, I was first diagnosed at 19 so I know what its like, so just tell him to look me up on myspace...

[monrein]

That's great news Neo.  Have fun in Vegas.

[okarol]

  I hope you have fun!

[Lori1851]

Will do neo!!! I ahve a myspace also lol I will look you up and send you an invite.
Lori/Indiana

[Ken Shelmerdine]

Glad things are getting better for you. I was going to suggest get a new girlfriend lol but earlier on in this thread the joke probably wouldn't have gone down too well. It must be worrying when you are so young. As for me well.... nowadays I'd rather have a bacon butty (sandwich) and Rita my wife would rather go shopping! 

[Neo]

 

[cabarle]

THanks everyone It was real hard to talk about this with anyone.. BUt I am going to see the endocrinologist, but Ill have fun in vegas, I didnt say I didnt ever do it.. So we will have fun!! THanks everyone please keeep giving me updates on anyhting new and its always comforting to relate with someone...Cuz being my age I dont really have anyoen that i can really relate to being as most the people on dialysis in my unit are way older than me...

This is nothing to be embarrassed about! For the rare times I have the "urge" my wife happily obliges. I didn't think she quite understood why I would stop "wanting" it, but after she did her own research she finally stopped hounding me about it. It took a while though. The Good news is I can still perform (occasionally), and sometimes become the master of my own domain.....