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Author Topic: QUESTION FOR THE LADIES  (Read 10038 times)
bleija
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« on: May 21, 2012, 09:12:41 PM »

well, i know i read on here about the men and their erection problems, but does that correlate along with females and sezx drive. i am young, but i have no drive whatsoever.... My husband understands but hes a guy..and i dnt know what to do about it... when we do it feels like such a chore and i would rather not...if it was up to me it would never happen. i mean i feel bad, but i guess im lucky he understands... what do u all do.
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Cordelia
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« Reply #1 on: May 22, 2012, 03:13:42 AM »

Yes, females can have the same problem. I do.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
cattlekid
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« Reply #2 on: May 22, 2012, 04:43:56 AM »

I've had this problem for years.  Doctors have told me it's all in my head and I should just snap out of it.  No one seems to have any real answer.
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WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #3 on: May 22, 2012, 05:01:49 AM »

I'm right there with you!  It has literally been years since I had the desire for sex.....  It's sad, really!
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cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: May 22, 2012, 05:19:14 AM »

very sad indeed, for hubby, and for me. And Cattlekid its not in your head, its a few of the zillion things that kidneys are doing in a perfect world. Its being tired, its feeling ill, its feeling 'unattractive', its being depressed. What kind of a doctor comes out with things like that in the first place?

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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cattlekid
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« Reply #5 on: May 22, 2012, 06:16:45 AM »

I think they say that when they literally have nothing to offer you.  It pisses me off to no end that men have an assortment of "little blue pills" and other options....women have nothing.

very sad indeed, for hubby, and for me. And Cattlekid its not in your head, its a few of the zillion things that kidneys are doing in a perfect world. Its being tired, its feeling ill, its feeling 'unattractive', its being depressed. What kind of a doctor comes out with things like that in the first place?
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jeannea
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« Reply #6 on: May 22, 2012, 07:58:10 AM »

Yeah I have no "drive" whatsoever. Luckily or not, I have no husband to torment. I don't think the doctors care. There are really no options for women. Men can use testosterone cream but that can be dangerous for women. I think you're doctor will probably say you're lucky to be alive and the sex thing is no big deal. Of course it would be a big deal if your doctor had the problem. I'm sending you sympathy.
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billybags
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« Reply #7 on: May 22, 2012, 08:07:48 AM »

I would rather have a ciggie and a cup of tea. That's sad isn't it. OK I am nearly 68, I keep telling him "I am looking after his heart" I am awful, but I can not be bothered.
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bleija
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« Reply #8 on: May 22, 2012, 08:49:55 AM »

eh thats what i figured... i dnt feel unattractive, i know thats not my issue... but my next question is  will a transplant change anything?
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KarenInWA
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« Reply #9 on: May 22, 2012, 09:07:07 AM »

eh thats what i figured... i dnt feel unattractive, i know thats not my issue... but my next question is  will a transplant change anything?

I am a single, 38 yr old woman with a transplant for 6 months. I was on D for 7 months, and actually felt pretty randy there for a while when I was on it! (Truth be told, though, I had no one to share that with). Now that I have a transplant, that feeling comes and goes depending on what is going on in my life. It took a little while for my meds to get adjusted - before that I had stomach issues, and for me, that never leaves me feeling sexy. Once all those issues resolved, I was feeling pretty good in that arena (but still, no one to share it with) and then BAM!!! I got hit with a nasty hematoma obstructing my new kidney! One emergency surgery, round of dialysis, and 2 units of blood later, I had to recover for a month. So now the feeling comes and goes, as long as Aunt Flo isn't around (she is a definite libiido killer for me. Always has been.)

My take on everything? Everyone is different, because everyone is affected differently. There is no way to know if a transplant will change that or not, because everyone's transplant experience is different, just like everyone's dialysis experience is different.  I know that probably doesn't give you the answer you're looking for, but I believe it to  be true. We're all unique!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Cordelia
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« Reply #10 on: May 22, 2012, 09:52:02 AM »

I'd be pissed if some doctor told me it was all in my head.        :boxing;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Brightsky69
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« Reply #11 on: May 22, 2012, 12:02:24 PM »

I will say that I had no desire while on dialysis…for obvious reasons. I could barely get up and go to work much less do anything romantical.
I’ve had my 2nd transplant for about a year and a half……still no desire.

Iam begining to think my lack of desire is more "relationship" based. I think back to an old boyfriend and let me tell you.....if that guy were readily avialble, look out!!  ;D :bandance;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
bleija
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« Reply #12 on: May 22, 2012, 04:04:19 PM »

aunt flo's a bitch, doesnt she know we dnt want her around, someone told me that when some women start dialysis they wont have one anymore.... and that even more common on hemo, i waited to b e free when i did my 6 month stent on hemo, nope not me every month
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cattlekid
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« Reply #13 on: May 22, 2012, 05:24:33 PM »

aunt flo's a bitch, doesnt she know we dnt want her around, someone told me that when some women start dialysis they wont have one anymore.... and that even more common on hemo, i waited to b e free when i did my 6 month stent on hemo, nope not me every month

I didn't have a cycle for several months when I was on in center dialysis. But when I started home hemo, she came back with a vengeance. The neph told me today to hold all heparin during my cycle, hopefully that will help.
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bleija
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« Reply #14 on: May 22, 2012, 05:26:12 PM »

okay well i guess i would rather keep mine, than piss her off, lol mine arnt too bad more annoyin than anything
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Rain
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« Reply #15 on: May 22, 2012, 05:40:52 PM »

I just to have the desire for sex all the time. That desire left when i started dialysis. At first it was because of the tube sticking out of my chest, i didn't feel attractive.  But 5 years later by beau is still by my side and loves me more every day. 
We haven't had intercourse in months, but he gets what he needs, and he tries to please me.  I find if i get enough exercise in a week, I feel more like sex, if i Don't i just want to sleep. 
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1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
Cordelia
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« Reply #16 on: May 22, 2012, 05:46:01 PM »

The heavy monthly flow is caused from the Heparin. Thank you heparin,     ::)      it makes my flow heavy every month. The few months before renal failure mine went away and I LOVED it being gone. I didn't miss it. Needless to say, it returned after 4 months of in center hemo.       ::)


I don't want my period anymore but I'm afraid to have any kind of surgery that may screw up a transplant. I'm wondering if maybe anti rejection meds will make it disappear? (I really don't know, but I'm hoping it will cause it to stop)     so I'm holding off to see what happens when/if/once I have a transplant.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
bleija
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« Reply #17 on: May 22, 2012, 06:13:05 PM »

I just to have the desire for sex all the time. That desire left when i started dialysis. At first it was because of the tube sticking out of my chest, i didn't feel attractive.  But 5 years later by beau is still by my side and loves me more every day. 
We haven't had intercourse in months, but he gets what he needs, and he tries to please me.  I find if i get enough exercise in a week, I feel more like sex, if i Don't i just want to sleep.

WAIT!!!! so exercise is the key??? at this point im willing to try...
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Cordelia
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« Reply #18 on: May 22, 2012, 06:20:27 PM »

Not for me, I excercise daily and it doesn't do anything to my libido.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
bleija
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« Reply #19 on: May 22, 2012, 06:40:25 PM »

eh well, taking any and all suggestions... so i may give it a shot
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Cordelia
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« Reply #20 on: May 22, 2012, 08:15:20 PM »

eh well, taking any and all suggestions... so i may give it a shot

I hope exercise helps you     :cuddle;
Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
KarenInWA
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Posts: 1041


« Reply #21 on: May 22, 2012, 09:31:23 PM »

The heavy monthly flow is caused from the Heparin. Thank you heparin,     ::)      it makes my flow heavy every month. The few months before renal failure mine went away and I LOVED it being gone. I didn't miss it. Needless to say, it returned after 4 months of in center hemo.       ::)


I don't want my period anymore but I'm afraid to have any kind of surgery that may screw up a transplant. I'm wondering if maybe anti rejection meds will make it disappear? (I really don't know, but I'm hoping it will cause it to stop)     so I'm holding off to see what happens when/if/once I have a transplant.

Cordelia - regarding this issue. Everyone is different, of course, but my experience was this - I immediately had a period the day after my surgery, then didn't have one for 3 months! I thought that was great! But, eventually, she came back, and I have had 3 since she's been back (transplant was exactly 6 months ago). 

Doctors usually say periods come back after transplant. Mine never left, and I ended up taking the pill continuously while on D to try to avoid them. I ended up having one every 3 months or so, so it helped. Sure was better than the "heparin bleed" every month!  I have been off of the pill since my transplant.

There are other options to deal with the period issue. You can always call your transplant clinic to ask what they think of them. One thing you can do is get an ablation done that will either minimize or completely stop them altogether. My dr and I have talked about this. It's not major surgery, and it has a quick recovery. If you don't want to go that route, there is also the iud. Mirena specifically was recommended to me.  The thing is, you can still be a bit anemic after tx, and having periods doesn't help matters much. I had a hematoma incident in early April, had to have emergency surgery, lost a lot of blood, and Aunt Flo was there for the whole damn thing! I ended up having to have 2 units of blood while doing one round of dialysis. This was how I spent Easter. Fun, huh? Stupid Aunt Flo added insult to (literal) injury. I was NOT happy (about any of it!!!).

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Cordelia
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Posts: 2012


« Reply #22 on: May 23, 2012, 04:28:34 AM »

The heavy monthly flow is caused from the Heparin. Thank you heparin,     ::)      it makes my flow heavy every month. The few months before renal failure mine went away and I LOVED it being gone. I didn't miss it. Needless to say, it returned after 4 months of in center hemo.       ::)


I don't want my period anymore but I'm afraid to have any kind of surgery that may screw up a transplant. I'm wondering if maybe anti rejection meds will make it disappear? (I really don't know, but I'm hoping it will cause it to stop)     so I'm holding off to see what happens when/if/once I have a transplant.

Cordelia - regarding this issue. Everyone is different, of course, but my experience was this - I immediately had a period the day after my surgery, then didn't have one for 3 months! I thought that was great! But, eventually, she came back, and I have had 3 since she's been back (transplant was exactly 6 months ago). 

Doctors usually say periods come back after transplant. Mine never left, and I ended up taking the pill continuously while on D to try to avoid them. I ended up having one every 3 months or so, so it helped. Sure was better than the "heparin bleed" every month!  I have been off of the pill since my transplant.

There are other options to deal with the period issue. You can always call your transplant clinic to ask what they think of them. One thing you can do is get an ablation done that will either minimize or completely stop them altogether. My dr and I have talked about this. It's not major surgery, and it has a quick recovery. If you don't want to go that route, there is also the iud. Mirena specifically was recommended to me.  The thing is, you can still be a bit anemic after tx, and having periods doesn't help matters much. I had a hematoma incident in early April, had to have emergency surgery, lost a lot of blood, and Aunt Flo was there for the whole damn thing! I ended up having to have 2 units of blood while doing one round of dialysis. This was how I spent Easter. Fun, huh? Stupid Aunt Flo added insult to (literal) injury. I was NOT happy (about any of it!!!).

KarenInWA

OMG, that would be horrible having your period through all of that!!!       Definitely sounds like it was not a good Easter at all for you. I'm sorry to hear this happened.

Yes, I've heard of ablation.  I have done a lot of thinking about it.  Are there any risks to it before having a transplant, that's what I'm wondering.    I don't want to risk changing my antibodies before transplant. I already have high antibodies to begin with.
« Last Edit: May 23, 2012, 04:29:37 AM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Annig83
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« Reply #23 on: May 23, 2012, 11:23:51 PM »

I have always had a high libido... and even though I'm on D... I still do.   :shy;  I do CCPD only at night when I'm sleeping... maybe that's the key?  As for periods, I haven't had one since December last year... but I am also on IMPLANON which is a birth control implant placed in my arm, kinda like an IUD, which also stops periods.  There's so many factors that play into a woman's body, the slightest hormone change, D, medication... speaking of which!!!  I had my son 18 months ago and I'm still lactating!!!  I didn't even nurse him since he was born premature!  The reason?  One of my blood pressure medications!  It changed my hormones up just enough to produce milk.  It doesn't bother me, but I always worry that somehow the IUD failed and I'm pregnant again! lol. 
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
gothiclovemonkey
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« Reply #24 on: May 27, 2012, 01:41:42 PM »

Im very "lucky" that my bf doesnt have much of a sex drive i guess.. but i still do sometimes. (its RARE but when it hits it hits hard!)
BUT my last bf was a sex addict (im not even kidding, he was an actual addict!) and there were days i didnt feel well enough to do anything, so his go to was porn hah and if i wasnt feeling like doing it, but felt like helping, i would. *blushes* i wont get graphic, but im sure you know what i mean. Nothing wrong with giving without getting anything in return.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
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