PDA

View Full Version : Maybe too personal, but why not.



adl011
04-08-2009, 11:32 AM
Hey guys, just as a warning, this thread might seem a little too personal for some people, so feel free to ignore if you aren't comfortable. I also hope it doesn't offend anyone.

I was wondering if anyone else has issues with lower sex drives when in a flare. Is this a common thing in lupus or is it something I should actually discuss with my doctor?

Thanks for any info. It's not a pressing issue, just more out of curiosity.

~Amanda

mountaindreamer
04-08-2009, 07:08 PM
i find that a flare definitely interfers with my sex drive. the scare of the pain sometimes destroys the interest.

red246
04-09-2009, 04:32 AM
This has become a major problem for me! Used to be hubby was always the one too tired and I was doing the "convincing". Now, we go so long in between, he's asking for it! It's a combination of worrying about "Am I going to be able to breathe? Do I have enough energy? etc..." and the sex drive has just gone kaput! It's like it just up and disappeared! :shocked: So, if anyone finds it let me know, okay?! :laugh:

gina
04-09-2009, 05:55 AM
my drive hasn't changed but in my mind i am too tired or when in the moment have a hard time breatheing, my partner laughs and says are you going to be okay, or he says i guess your done now:wacko:

i try not to think of whats going to happen just enjoy it.

Grime
04-09-2009, 07:42 AM
Men are to a shame to talk about problems. I don't know if its because of Lupus or my age but I have dreaded ED. The emotion of not being able to make love to my wife is worst than having Lupus.

So ladies you are not in this boat alone.

Oluwa
04-09-2009, 08:38 AM
Hi Amanda...

I think with Lupus it is a secondary symptom, not the cause..like feeling unattractive from the physical changes Lupus can cause. Steroid bloat, rashes, air loss and etc.

Feeling depressed because of the changes in our lifestyle Lupus brings, so it affects our libido.

Pain killers, anti-depressants, sleep aides, anxiety drugs lowers sex drive and times brings it to a screeching halt..

Dryness from our medication, making sex uncomfortable. Use Astroglide..alittle dab will do ya...I do the dab.

If it is joint pain...twist and contort to find a position to alleviate the pain. Pain can be a turn off before it even begins. If we have sex and it was painful in anyway, we can associate that with sex and it creates a turn off affect....Like once bitten twice shy.

Stress kills a sex drive...stress from having and dealing with an illness...

Fatigue...who would want to have sex after feeling like they have been hit by a MAC truck and put it in reverse and ran over you....

Oh, mine waxes and wanes...I contribute it to fatigue, medication, pain...depression and because my Easter Basket is empty, hormonal....menopause. And who feels like being tossed around like a rag doll when you feel all broken from joint pain, muscle pain...and dry as a windshield wiper with no rain.

I think it is important to discuss the reason why we feel our sex drive is low to our spouses, partners so they understand it isn't them...and maybe to find other ways to be intimate. There is more ways to love than missionary style...

I would discuss it with your doctor....it could be an underlining disease..or maybe just a tweak in your medication is all that is needed.

Hope you find your drive...
Hugs.
Love,
Oluwa

Rastagirl
04-09-2009, 09:13 AM
I hesitated on replying to this thread when I first read it...but my need to share some information so that others might not needlessly go through what I experienced won out over my shy, reserved self.

Having a chronic illness that can be very debilitating when you're at your worst with symptoms is something that will lessen anybody's desire to be intimate... i.e. feeling crappy, feeling less desirable, worrying about overexerting or causing a flare, etc.

But sometimes your desire can be affected by the medications you are taking. And without you even realizing it. When I was first married and my Lupus was very active and was flaring a lot, I spent the first few years of my marriage without much desire for sex. I thought it was because I was sick all the time and just didn't feel like it. But it got worse...over time I began to lose ALL desire and finally didn't want to even be touched by my husband. I thought it was just me...because I didn't feel well most of the time and didn't feel desirable. And because I was uncomfortable talking about this with anyone, I did not tell my doctor. I was quite embarrased. So I kept quiet, and miserable, for at least a year. (My husband was pretty miserable too.) When it finally got to the point that I thought there was something seriously wrong with me, I got up the nerve and mentioned it to my doctor. (Actually, I broke down crying in his office one day.)

We took a look at all the medications I was taking, and discovered that one of the blood pressure meds had as a side effect: diminishes sex drive. My doctor told me that quite a few blood pressure meds have that side effect. I could have kicked myself all the way to timbucktoo for keeping quiet for so long..... :wacko:

We changed my medication and within 2 weeks, I completely changed. Voila......side effect gone! Lori....HAPPY! Husband.....VERY HAPPY! :biggrin:

I learned an important lesson because of this....always mention ANY symptoms or problems you are having with your Lupus to your doctor right away. It could be something that is fixable with a tweak of your medications. Or, when needed, a visit with a therapist or counselor. And don't be afraid to bring it up if it is affecting your relationships in life and making you miserable.

Lori :heart:

p.s. There's a smiley that would work perfect for this thread....but I'll skip it, since this is a family-friendly forum. :lmao:

adl011
04-09-2009, 09:41 AM
Well, at first I was worried no one would reply to this one, but I'm presently surprised to see that so many of you guys have. I am sorry that you guys are all experiencing this symptom/side effect/whatever it is as well. I am lucky that my fiance is so understanding in this aspect. We decided together that it's better to focus on my health right now then even trying to risk hurting me or using up what little energy I have. We are getting married in 3 months, and after that, there'll be all the time in the world :) for sex. I had to talk with him about this though because I had really been beating myself up for not having the energy. It was so wonderful and such a relief to have him say that my health is much more important than having sex. I know one day soon the medicines will start working and I'll have good days again, and until then, I'll just enjoy him taking care of me and making me smile. I hope everyone else's partners are as understanding as mine! Have a great day.

kducks
04-09-2009, 11:26 AM
I can throw a little humor into this subject. I was 17 when I was diagnosed and not sexually active at the time. My first rheumy would tell me EVERYTIME I saw him..."You know Kimberly, now is not a good time to be getting pregnant"..right in front of my mom! :embarrassed: Like I had the time and energy for that when I could barely get out of bed most days.

gina
04-09-2009, 11:52 AM
it sounds like you have a great guy. to be worried about your health instead of his needs. plus you need to save energy on the honeymoon congradulations. :laugh:

tasha
04-09-2009, 11:02 PM
Lori, what was the blood pressure med that lowered your sex drive and which one are you on now?

i have definitely been experiencing this side effect. i don't know if it's because of the medications or because i have serious body image issues at the moment, which i hope will go away when i get off prednisone.

Rastagirl
04-09-2009, 11:26 PM
Hi Tasha...

I'm really sorry, it's been such a long time ago, I can't remember which blood pressure med did that...I've racked my brain, but it won't come to me. I do know that I was switched to Atenolol after that, and stayed on that one until after my last pregnancy, which was in 1996. At the end of that pregnancy, I had severe eclampsia and my blood pressure was way out of control, so I had to be on 3 really strong BP meds for about a year. Eventually I was weaned off of 2 and ended up on Lisinopril. That's the one I'm still on today at only 10 mg. each morning.

What BP med are you on? Have you tried googling the side effects of it? I'll bet if I hear the name of the med I had problems with, I will remember it.

And just to offer some encouragement, when I finally got to a very low dose of Prednisone, and was able to start exercising at Curves, my hourglass figure came right back...in some ways better than before, and boy is that a pick-me-up for the confidence and self esteem. I'm sure that'll be the case for you too. Just hang in there.

Hugs,

Lori :heart:

tasha
04-09-2009, 11:53 PM
i take 20mg of lisinopril every evening... and i take it that one does not have the lowered sex drive side effect, since that's what you're currently on, yeah?

i really miss the figure i had before prednisone... and i can't stand how puffy my face is. i used to have such a nice smile and it was something i was really proud of. now i refuse to have my picture taken because when i smile, my cheeks puff out even more and look like an obese person's cheeks. i don't even recognize my face. my doctor just had me start tapering my prednisone a week ago. i dropped from 30mg to 20mg, and i have another week to go on 20 before i drop it down to 17.5mg. it will be months before i'm at a low enough dosage to where my face and figure come back. the doc said that probably won't happen until i get under 10mg.

can prednisone also cause lowered sex drive (as a side effect, not from the body image issues)?

Angel Oliver
04-10-2009, 07:07 AM
Try not to worry too much about it.If you have a great partner, it wont be a problem.With me if a debate about.....sex....chocolate...sleep......chocolate would win every time ...well at this moment.....so buy lots of chocolate and enjoy...yipeeeeeeeeeeeeeeeeeeeeeeeeeeeee :) x

Mary Jane
04-10-2009, 11:24 PM
Sex, what's that....really, my husband gets very frustrated with me...I have no sex drive lately...I think it's a combination of things.:hissyfit:

sick n tired
04-11-2009, 01:45 AM
Yes Amanda,

A flare does interfere with my sex drive...I believe it is a combination of pain, exhaustion, and the meds....

Nihao1.
12-09-2011, 03:13 PM
I can throw a little humor into this subject. I was 17 when I was diagnosed and not sexually active at the time. My first rheumy would tell me EVERYTIME I saw him..."You know Kimberly, now is not a good time to be getting pregnant"..right in front of my mom! :embarrassed: Like I had the time and energy for that when I could barely get out of bed most days.

I know this is not exactly the same thing but it is equally annoying and extremely awkward. When I was really bloated and suffering from edema and first went to the a nephrologist with my dad, he thought that I was pregnant, thought my dad was my husband and also asked me if this was going to be my first child or if I already had kids...

Nihao1.
12-09-2011, 03:19 PM
i take 20mg of lisinopril every evening... and i take it that one does not have the lowered sex drive side effect, since that's what you're currently on, yeah?

i really miss the figure i had before prednisone... and i can't stand how puffy my face is. i used to have such a nice smile and it was something i was really proud of. now i refuse to have my picture taken because when i smile, my cheeks puff out even more and look like an obese person's cheeks. i don't even recognize my face. my doctor just had me start tapering my prednisone a week ago. i dropped from 30mg to 20mg, and i have another week to go on 20 before i drop it down to 17.5mg. it will be months before i'm at a low enough dosage to where my face and figure come back. the doc said that probably won't happen until i get under 10mg.

can prednisone also cause lowered sex drive (as a side effect, not from the body image issues)?

I have to say though, that when I was on really high daily prednisone doses, I've never had a higher libido. It was really weird for me. Even with the lowered body confidence I got from the weight gain, especially the dreaded moon face and fat in the neck and belly, oh not to mention the extra face hair growth. In some ways, the high libido is one of the best side effects that I experienced with prednisone. Besides for the keeping flares and infections at bay. I'm totally off it now, and I do miss those things. Though, not the rapid crazy drastic mood changes(I've never spoken my mind to everybody so much before in my life...which caused some issues sometimes), bad body changes and the fact that you're kind of depleting your bone mass.

tgal
12-10-2011, 08:11 AM
I have none which was a huge change for me. It went downhill the sicker I became and is at none now. I am sure the meds don't help but whatever it is you are not alone

ruziska
12-10-2011, 08:56 AM
lupus flares lower my sex drive, my cooking drive, my cleaning drive...and when it is really bad, my knitting drive

SleepyInSeattle
12-10-2011, 09:26 AM
Oh heck yeah....since Lupus, a good night's sleep is the new foreplay....LOL...we have definitely switched to being "morning people". I am just way too wiped out at night to enjoy anything besides a half-hour comedy on the DVR and 10 minutes of reading before passing out from exhaustion. It's just the way life is.

But hey - it's not a bad way to start the day, sometimes!!! ;)

Hunniebun
12-11-2011, 02:45 PM
I haven't had sex since I broke up with my first ex I forget how many years ago now. The whole reason we broke up was because I just didn't have the energy or the drive to "give it" to him as much as he wanted, and he blamed me and would hold grudges against me and be angry with me over it. Needless to say, he was an asshole, and I don't miss him at all, life has been much better without him, plus I have a brand new man now who looks to be a definite keeper.

Enough sleep, and days when you are feeling better are the best times to try to get into that. I have needed extra lubricant too since I was diagnosed, I am not able to perform anymore on my own without it, or else it is very painful.
Most of all we need understanding men.

lol I love what you said about now being a "morning person" hehe.