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Thread: Maybe too personal, but why not.

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    Default Maybe too personal, but why not.

    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

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    i find that a flare definitely interfers with my sex drive. the scare of the pain sometimes destroys the interest.
    Phyllis

    share a smile today

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    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! So, if anyone finds it let me know, okay?!
    Lauren

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    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

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

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    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.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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    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
    I have Lupus. So *^#@! what.

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    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.....

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

    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

    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.
    Last edited by Rastagirl; 04-09-2009 at 10:41 AM.

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    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.

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    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! Like I had the time and energy for that when I could barely get out of bed most days.

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    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.

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