LUPUS UK
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Anyone affected by low sex drive?

For years now, well ever since having a child, my desire is really low. Do not even think about it. Feel guilty towards my husband. Is it a symptom?

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Hello SWJUK

There are many possible reasons for this, and Lupus is just one of them. An overall depression of the endoricrine system or a thyroid issue could be to blame.

But a lot of women talk of this after giving birth. I think a chat with good lady GP would be helpful.

For myself, and speaking as a man, I find that when I am not in good shape, my interest wains somewhat.

I cannot speak, for your husband, perhaps you should explain things to him.

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Thank you, I have spoken to my husband and he says he is ok with it. I was curious to know if there was any correlation with Lupus. Yes, my weight is an issue. Yes, I have spoken to my gp. I am on so much meds that who knows which is related. I appreciate your cander though, thanks

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Hello again. I had to nip out earlier.

A few years ago I found that my energies were at an all time low, I was not depressed or in any significant pain ( always a background issue). I would set out to walk the dog fine, but need to sit after 10 minutes, I also noted that my libido was at zero, -Lupus lady said it was a flare, and started me on a low dose steroid, This made my skin silky, and my breathing smooth, but didnt help with the other things. I was weaned off the steroid and had every blood test known to mankind. -As my specialist also runs the haematology lab at Guys.

Test showed, everything clear apart from a pos ANA - which we knew about and a raised PSA. From this I got an instant diagnosis of Prostate cancer and a referral to Guys genito urinary clinic, -lots of fear, humiliating probing and fiddling and a test showing a huge jump in PSA. Which meant I had to have a biopsy - which is a real pain in the arse ( or twelve)

And this revealed...............bugger all. No inflammation, no infection and no blockage. So no actual reason for raised levels?????????

Which left only one explanation; It was a false positive cause by our dear friend Lupus.

My lovely lupus lady concurred, and wrote a letter saying so to the GU unit, -otherwise they would still be drilling.

Which brings us back to you. There are many elements at play with your conditions and circumstance, Being ill, or being anxious about being ill is enough to make anyone feel less than sexy, and a combination of your meds might also be a factor. This without the Houdini of illnesses sneaking around your system playing havoc with your body chemistry.

Be well, and dont fret about this. Personally I find it quite liberating.

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What a great Answer for this lady, yes it is a problem for me also. It has taken a long time to deal with it, it's the not knowing why I think is hard. I love my husband so much so it's not because I don't and making sure they understand that is a huge help SWJUK. Thaddeus I have read your replies many times you give great answers. Keep up the good work. Every time you say something is wrong you almost think you made it up so many things wrong, if you go to the doctors they don't often find anything I have to be forced these days to go. I just try and make the best of a loving family. All the best.

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Thank you Gilly. I had my crisis of health a long time ago, I had limited help, and limited understanding of what was going on. Add to this a limited ability to comprehend. Now having got a handle on it, I feel it is my duty to help others where I can.

Wish we had the internet back then.

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So do I, my mom died in 1985 I was 29. The last thing she heard was a doctor telling me to pull my self together it was all in my head. She believed me moms do but I wasn't diagnosed until 1991 so she never got to know the truth. She was only 60 and had terrible health I really believe she had the same problem. You are right to help others and it is only experience that can do that. It wasn't that long ago but you just didn't get enough help even now it is still hard but at least we learn to listen to symptoms. I have two beautiful grandchildren something a few years ago I didn't think I would see. I have had 3 TIA in the last couple of years so determined to look after myself as much as possible to see them grow up. Take care and keep up the good work.

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Much appreciated. Thanks again Gillyg. I have just heard that my son may have glandular fever. He is 29, the same age i was when I had it, and it all went sour.

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Wow what a coincidence, a few weeks ago my son was diagnosed with the same he is 34. Always a worry isn't it. Have a nice week end.

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Hi SWJUK, I have the seem problems. I have lost all sexual interest. It started a while back but I now realise was the beginning of my Lupus. Since diagnosed I have totally and utterly gone off sex.I feel so sorry for my partner who have is s very very understanding but I worry for how long. Do you take Amitriptyline because one of the side effect is lost my of sex drive.Its such is terrible thing to happen. Anyway lets hope for the best that this will go away.I would be nice to hear if others are going through the seem thing

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Hi SWJUK,

You are not alone! ......I have 3 children and first started to feel ill last August and wasn't diagnosed until February. In that time, I was in so much pain with my hip and joints, not to mention the extreme fatigue and lost so much weight that sex was the last thing on my mind..... Infact we havent had sex at all in this last year!.....when i think about it, it makes me feel like im abnormal as im 39 and have no sex drive at all! i just want to sleep! ....My husband has been so wonderful and told me that it isn't a problem and our relationship is worth more than just sex. Doesn't stop me feeling guilty though. about 3 weeks ago I started to feel much better as they seem to have got my meds sorted now and the pains in my hip is getting much better but i still feel very self conscious as I've lost my hair on my scalp - very hard to feel sexy when your head looks like a 'ping pong' ball!!.....

Try not to worry about it too much, You are also lucky to have such a supportive husband. things will be restored when the time is right!

Big hugs xxx

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Wow, this is my first time posting and I am really impressed by the sentiment! Thank you all for commenting. I was curious to know if others felt similar and really appreciate the comments.

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My libido really dropped about years ago when I was 41. Turned out I was going through the menopause. Because of lupus I can not have HRT and I get night sweats. But I was most distressed about low sex drive and saw a counsellor which was a waste of time really. I just have to come to terms with it like everything else. And everything else is going ok.

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That is interesting because I thought I was pre-meno and had the blood test showing I was not, but still feel like I may be. I am 44 so who knows. Thanks xx

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Hiya IMillar I thought about getting therapy too but didnt think it would help in the least not unless my Lupus gose away.

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I feel that to some extent, we are taught to define ourselves by our sexuality, For men it seems to be a status defined by who we do, and how often. ( Please excuse this ungentlemanly language ) Whereas for women it appears to be about a more general air of fertility & sexuality.

And when this is taken away, we tend to feel a bit out of the loop.

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For me it was nothing to do with fertility. I have a son and not planning in more (very ill when pregnant). It is simply that I enjoyed an active sex life and had strong feelings. And while I love my husband and we still make love ,though not as frequently, I feel a loss of how I used to feel. I feel sad that this has happened sooner than I expected and my libido won't return.

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Yes loss of sex drive here too, it has been over 2 years since my husband and I were fully intimate. My husband is a wonderful man, and like some of you have said, our whole relationship is worth more and is more, than just making love, I know I am lucky to have an understanding husband.

I think the best advice I can give anyone feeling a sense of loss, and it is a loss, after all sex is a natural instinct, is communicate with your husband or partner, and also realise that Lupus and all that entails, plus medications some of which knock libido flat, like Amitriptyline, all are part of the Lupus puzzle and roller coaster.

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I thought it was just me that was not interested anymore , my husband waited Ages after I had a miscarriage and then waited even longer after I was diagnosed with lupus straight after, nw I feel like sleeping and feel tired and lost interest in sex after my miscarriage and after diagnosed with lupus , so deep blame the lupus coz I was fine just before that.

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So defo blame the lupus coz I was fine before that.

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