Sex

[Limerick5]

Just looking to know if us people with lupus ever get our sex life or drive back again now I know that when in pain it's the last thing on mind but I'm 4years in pain now and think my man is fed up any advice or help or same same

[MelAlice]

Hi, I was diagnosed with lupus Jan 2013 and had been without a fella for 9 or so years at that point due to pain, abnormal menstrual bleeding and generally not feeling human! But in April this year I met the most amazing chap, he really is one in a million. I haven't had a flair up since meeting him, but I don't dread it because he is so sympathetic of the lupus and my symptoms. He has made the effort to research it and is so amazing. I had decided to come off the pill in 2012 because it wasn't controlling my periods anyway and was fitted with a merina coil in December 2013, which also seemed to make matters worse! That was finally removed in June this year and oddly this last month I finally seem to be returning to normal! I actually haven't bled for 3 weeks, which is the first time in about 10 years! Anyway, after that long winded explanation of my life, since being with this new guy I actually have a sex drive back! whether it's just him, or should I say us, or what I don't know, but I certainly think the it's helping keep me happy and keeping away those flair ups, I could be wrong! So I guess what I'm saying is, if your fella is understanding and gentle, even if you don't feel like it, or feel sexy, or are in pain, try it, make him do all the hard work, obviously! Lol but if he's gentle and goes slowly, what's the harm in trying? Talk to him, make him understand he needs to stop if you are in too much pain or it's just not working, you never know, it might help! Xxxxx

[Pop007 in reply to MelAlice]

Hi Limerick5

Feel I'm in the other shoes ... My husband was diagnosed with MCTD 15 years ago. Our sex life decreased dramatically. He was always tired and uncomfortable . Five years ago he developed a heart condition -AF. We haven't had sex since. The medication appears to have made him impotent. I love him dearly but feel I'm being pushed away. We have no physical contact at all, I can feel him physically recoil if I touch him, I think he's frightened that he will have to 'preform'. I would love to have a love life again, even a hug would be good.. So limerick5 keep going and hug your partner, it's hard for them too....

[Belee]

I'd be interested in answers to this too......I am 40 years old and was diagnosed 2 years ago, I've lost most of my hair, lost a stone in weight, so look really unattractive and feel like 'poo' a lot of the time. I've been married for 20 years to the most amazing and patient man. he says hes not worried about me not feeling like sex as our relationship is built on more than that but I worry so much about it.

Im just so tired by the time the kids are all in bed ( we have three). All I want to do is crash and go to sleep!!

any advice or magical cures would be greatly appreciated!!

xxx

[Limerick5 in reply to Belee]

Me too there must be something out there to give us a drive u say every evening I'll surprise him but when it gets to the evening I'm just dead in the water and it's the last thing I want to do there is a pill for every thing else there must be one for this what do think

[Tinksie in reply to Belee]

Felt I had to reply as we have a lot of similarities. I'm also 40, was diagnosed with SLE just short of 2 years ago, and have 3 children (3, 4 and 7). I have IBS and Fibromyalgia which can also make me feel unattractive and increases muscle fatigue. I do have times when sex is the last thing I feel like and my husband of 18 years never pressurises me so we did have a 'dry spell'! However I found that I missed the closeness sex can bring and decided we needed to discuss it. We talked about positions that were difficult for me and that I would say if I was in pain - incidentally i think if your partner is worried about unknowingly hurting you it can also put a spanner in the works (so to speak!). I have found that making the decision to have regular sex even when I don't feel like it as brought us so much closer and I'm enjoying it much more! Sometimes I don't feel like it initially but that soon changes and I find I don't need to actually put into words when things are uncomfortable now as he picks up on my non verbal cues. Hope that is helpful. Don't get me wrong though. If you really don't feel well enough don't feel guilty or pressurised. It isn't your fault and it sounds like your husband understands that too. All the best xx

[MargaretGail]

Talk to him, tell him how you feel. Men are not mind readers

[Pop007]

Believe me, I've tried.....

[MrsMouseSJ]

Hi Limerick5. I think this is one loads of people must struggle with - physically and emotionally. I've been ill for 10 years and my sex drive has totally altered. Indeed, when I look back, at those halcyon days before autoimmunity came and squatted heavily upon me, I think 'good lord; I was like the Duracell Bunny!' Alas, no more! For several years I simply didn't have any libido; the body shut down to concentrating on essential functions only, it seems. Interestingly, I didn't have a large range of emotions at that time either; I just felt very flat most of the time. How my partner stuck it, I really don't know. Now my sex drive comes and goes and my now husband and I work with it however we can. In practice, this tends to mean I'm 'up for it' in the middle two weeks of my cycle (when I feel best) and of a late morning. Luckily for us, he's retired! I also find it helps if I put it in my diary on a couple of days a month, hoping to at least be able to do one of them; that way I'm not tempted to organise other things over and above it. Certainly this has helped us a lot as a couple. Another issue has been that I can't share a bed at night any more - pain, very poor sleep, etc - so we also try to make time to just cuddle. Again, this has been really helpful to us, indeed essential. Also, if you have enough energy, etc, to be generous sexually without actually having to have sex yourself, then that can always be much appreciated as a nice surprise I find! But it's not easy and I really feel for you.

[Limerick5 in reply to MrsMouseSJ]

Thanks will try that

[Gillyg]

At long last someone has bought up the subject of Sex. I have struggled for some years and am too embarrassed to tell my doctor. I have SLE,SS and Fibro and it is simply painful apart from the fact I am so tired all the time. My husband is very good and I really try and find a night where we can relax and I will go to bed in the afternoon. I feel well it's not going to kill me so don't want to complain but it is a big part of our emotional life. It used to be so good. Think those days have gone. As long as we love each other we get by. Thanks for bringing this issue up its good to hear from other people it's less lonely. Hugs to everyone. X

[Carcrashgal]

MrsMouse, your Duracell Bunny image made me laugh, because I'm in a very similar position: I'm soon 56 and i"m incredibly lucky because I'll be married 10 years next May, to an amazing, sexy, handsome, witty, clever man who is brilliant in bed . . . but when all this started about seven or eight years ago we went overnight from wonderful rampaging sex several times a week to once a month (if he's lucky) - and I *hate* that this is all down to this loathsome disease. My problem is not so much the pain in my body - I've been dealing with a broken neck/crumbling spine most of my adult life, and so okay, I can't do Reverse Cowgirl* anymore, or anything exotic, but I'd found enough positions that please us both . . .And nor is my problem body image, for all I hate the three stone I've put on over the last few years; my husband spends plenty of time making sure I understand how much he loves me, *no matter what*. (I did say I was lucky.) Anyway, about a year ago - I guess when the drugs started to kick in - I did at last start to get back a little of my sex drive - not a lot, but even the occasional interest in sex is better than it's been these last X years. I'd really hoped that if I wanted sex myself rather than just wanting to please my husband, my juices would start flowing again. And there's *my* problem: Sjorgens. My husband and I now joke that I am a born-again virgin, because *every* time we attempt sex it's like I am brand-new out of the box. (And let's not even talk about gynae exams; my last smear was an absolute nightmare.) I am now dryer than the Serengeti, which means that everything is *horribly* painful. (And yes, I *am* using a lot of italics!!) So right now we're working our way through the lubricants - thus far Yes is the best one I've found, because it's quite thick and doesn't vanish as soon as you've applied it. For us, what works best (to a given value of best) is masturbation first, just to try and relieve the tightness . . . If anyone has any other ideas, *do* share: whilst I'm sorry anyone else is in the same boat, at least we have the Forum to help each other . . .

* Sadly, there is no position I know called Reverse Cowgirl - but I'm still searching!