Intimacy

[Priss]

I'm not sure what word to actually say it with out it being weird. I'm in my early 20 and Sex ,With my partner is amazing . My problem though most of the time I'm not up for it. Like I don't really have the desire to have sex. Am I the only one who feels like lupus messed up sexual desire ?

[MargaretGail]

No you're not alone Priss, both Lupus and medication have an impact on your sex drive and it's important to talk to your partner about it.

[Blizlee]

Fear not....you are not alone!... by bed time I'm so exhausted and can't wait to just go to sleep!!....thankfully I have a very understanding and supportive husband.😊 I'd recommend talking to your partner. Xxx

[Debra60]

Agree with everyone, sex drive has disappeared and it can be very stressful if your partner doesn't understand so having these discussions is important. After all, we can't help it :¬)

[SLC03]

I'm exactly the same. Early 20s and feel I've lost my drive, me and my partner have found that breaking that whole waiting till you go to bed expectation so mornings or during the day as it means I'm not completely exhausted showers and baths are also good. For me its also that my confidence has also gone so my other half has really started to make me feel better about myself. But we have really started to enjoy our time without sex more.. going for dates or generally being stupid together. It might not be as satisfying but who doesn't love to win at monopoly 😂

[mason]

hi priss no your not the only one i have fibromyalgia among a long list i dont know your conditions sex is great when i have the energy which is not often once a year i have found a site if you google 100 symptoms of fibromyalgia it tells you a lot it states decressed libido sex drive talk to your husband aslo speak to your doctor to see if they can help i also find that sex is painfull look up lupus and sex i hope this helps a bit take care let us know xx

[Hidden]

I can only add to what others have said - from the perspective of a person in early 50s who has struggled with undiagnosed and untreated autoimmunity for all of my adult life - that many people have lower libido than the media and our contemporaries will ever admit. I'm not sure this is to do with lupus specifically though. I think it will apply equally to anyone struggling along with chronic illness and even some in the relatively healthy population. Expectations are often so much higher than the reality can live up to. Add in chronic illness of any kind and it's bound to be a libido-flattening matter.

I have actually found my libido has increased as I age - but mostly in my imagination!

Try not to put too much pressure on yourself and perhaps you could use the Spoon Theory to explain how you feel to your partner. That way they will realise that if you are using up your daily allowance of spoons to make love - they must be extra special to deserve it! X

[Barnclown]

You've got some grrrrreat replies priss...thanks for this grrrrreat discussion 🌟🌟🌟🌟👏👏👏👏 my version of infant onset immune dysfunction & connective tissue disorder has greatly affected my sex life from just about every angle and from a relatively early age:

Too tired all the time

Too sore in muscles & joints all the time

Too dry all the time so it felt like I was being poked with a bunch of twigs

Etc

but I was too shy to say anything...so just researched lifestyle techniques like crazy & did the best I could...I adore my husband and simply felt I couldn't let him down.

It's taken years, but finally my lupus diagnosis was recovered and treatment began...at 62 my cocktail of lupus meds has given me back more stamina & resilience than I've felt since my 20s....i was referred to NHS women's health services physio and trained in various rehab techniques which really help & in liaison with my vulva clinic sorted the intimate dryness....our sex life has been transformed...and we're both feeling v lucky + downright amazed 🤗

And, naturally, I'm regretting my earlier terrible decades alone, in pain, depressed & isolated....so, I do vvvv much agree with everyone else: reach out & talk with your partner, your GP and rheumatologist...review your lupus meds, request referral to gyn WHS Physio (or an alternative equivalent) etc

Hope you'll let us know how things go

🍀🍀🍀🍀 coco

PS this link gives more details on this subject in a separate thread I posted here following on from this thread:

healthunlocked.com/lupusuk/...

[misswoosie]

I don't have a diagnosis of Lupus. 53 (just) year old, with a non existant sex drive and life (and I do mean totally non existant) for the last 9 years ,apart from twice 7 years ago. Loving and supportive husband and I always put my lack of libido down to "depression", peri menopause or stress. I don;t even think about sex, except to regret that it's not there anymore and feel guilty. I used to have a very high sex drive, and then sex started to be painful, drive disappeared and it just wasn't on the agenda anymore. I doubt that taking SSRI antidepressants for many years helped. Lots of changes and stress over last 8 years or more ie move abroad and back, ageing parents, unsure about future etc. We talked about it and my husband said that it wasn't the be all and end all and offered reassurance , but he's 9 years younger than me and it must be awful for him. Now so tired and joints achy, bald patches etc can't imagine putting intimacy back on the menu .

[Nixta in reply to misswoosie]

There are some vaginal creams that you use once to twice a week and they bring back the elasticity and moisture to stop the painful experience. Ovestin Cream - just looked it up. along with KY when needed. My husband is ten years younger than me and feel very guilty about my lack of interest. So I do may an effort and express some interest.....with lupus and no ovaries I have zero interest in reality but cannot disappoint and frustrate him.

Worth talking to your doctor about at least getting the mechanics to work well

All the best

[misswoosie in reply to Nixta]

Intersting, thank you. Did try KY 7 years ago, but it was still excruciatingly painful for me at one place in particular. To put it bluntly, I had to get my husband not to move in and out at that point,but to try and just keep going in! I stopped using tampons maybe 12 years ago because they were so painful to take out. Had always been painful to some degree, but it got worse around then. I have only 1 ovary as I had a ruptured cyst about 10 years ago. Also had division of vaginal septum when I was 20 and I wondered if it was some scar tissue. GPs here years ago poo poo'd it, but when I had a smear with OBGYN in the USA and he asked about any problems he examined me and knew exactly where the painful area was and said it was vaginismus. Having a smear with him was pure heaven (proper stirrups, warmed KY and speculum) compared to my last one here in the UK. The practice nurse failed (didn't evne get the speculum close to in) and told me it was "abnormal" not to have sex. It took the female GP 35 minutes to do it with me in agony and tears. Doesn't help that I apprently have a long vagina ( must match my 34" inside leg!) and cervix is tipped back since I had my son.

OBGYN in the USA told me that woman on the top might work best as then you have more control.That was a little better, but still painful and took forever to get full penetration. He also gave some exercises to do and referred me to a specialist physical therapist but our Health insurance didn't cover it and it was going to be about $200 a shot.

When it's painful ,such a long job and your sex drive is so low anyway it ends up being easier not to bother.

[Nixta in reply to misswoosie]

Have you tried to Ovestatin cream twice a week - helps the elasticity of the vagina. Clearly you have alot of other issues going on with the mechanics of it all. Not great.

All the best

[Denise1219]

No I have the same problem but my husband is so understanding about it thank goodness

[Kimbobaggins81]

I'm so happy to have come across this post! I have the exact same issue. My libido has dropped and I'm always dry, which is unpleasant and of course it hurts and because I know this will happen I'm tense. I think there's a 'vicious circle' element, but I feel terrible that I reject my husband and that when we do do 'it' I have to do it 'spooning' as I don't want him to see me grimacing. Lube helps, but it takes a long time for my muscles to relax. It's almost like loosing your virginity every time!

I wish you all the best of luck and prey one of you has a 'magic' cure! Xx

[Vasuna1]

No. Pain exhaustion from dx process

Not great. However on the up side

Sex induces endorphins the feel good hormone. So maybe this can help you.

[Nixta]

Sadly it is a known symptom of the disease. Try eating a healthy protein and veg rich diet and exercise and that can help raise your energy levels. Some notice benefits in going Gluten free.

I fall into a coma by 8pm in front of TV and often earlier so am useless but I make an effort with sex as it's a key to a happy partner and ongoing relationship. Try going to bed earlier....so you get the action in before you are exhausted. Power napping in the day...20 mins sleep after lunch can help your energy levels later in the day too.

Good luck!

[MrsMouseSJ]

Hi Priss. No, you're not alone - as you will see from all the replies. I think it must be particularly difficult dealing with this in your early twenties when sex is generally deemed very important within a relationship and also quite intrinsic to who a person is.

I can only give my perspective, if it's of any help - that of someone in their mid forties, who over the past ten years has experienced a waxing and waning (at times non existent) libido. I would say to try not to worry about it too much; that certainly hasn't helped me. Instead I, and my partner, have adapted to going 'with the flow'. So if I'm in a period where I have a libido we take advantage of that when I feel most ready, which is usually late morning. I also sometimes feel like sex late at night, but this just isn't conducive to my health for some reason, so we don't. Also we've taken a quality over quantity approach. But I do recognise that, in our case, we are older with different expectations from our younger years, and my husband is retired, so that enables this approach.

That said, even if you are both young and working perhaps you are aware of a pattern to when you feel most like sex and it feels ok with the overall needs of your body and so you could work with this at weekends/holidays? I'm guessing that your partner is also young and therefore may have the benefit of being physically very adaptable re times/short notice for sex?

Hope it goes well!

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣👣

Hi Priss;

I do not think you are the only one with this issue. I am a guy, I use to have a high drive. Now with lupus and the medication, the desire is just not there. Like you I'm not sure how to say this but, with some of the medication I take the side effects are well, let's just say I can't or don't fully rise to the occasion. I also find that even if it does happen regardless of how intense it things will still go flat before we get to where we wanna go. It is odd because even with a flat tire I can still get to where I am going. My wife is wonderful she understands, even if most of the time she has to finish where she wants to go own her own. (If you know what I mean).

Not to mention there are times I get lupus rashes/blisters in and on that area, so there is going nowhere for me at those times. Yes, many complications in the sex area at times with lupus.

I hope this helped in some way.

Wishing you a good day!

👣👣👣👣👣Tiras👣👣👣👣👣👣

[Nikki246]

I'm 39 and the same as everyone else, too tired, too muscle sore, joint pain and no libidos. My other half understands as he had a heart attack and a stroke last year (at 46) so he's the same as me.

[Mumager]

Hi Priss

Can I just say thankyou so very much for this post 👏🏼 I've been struggling where sex is concerned for a few years now and was beginning to feel very alone or a bit of a freak, don't get me wrong my husband is super understanding thankfully, but I do feel I'm letting him down. My consultant actually the registrar (rarely see the consultant ) I spoke to seemed uncomfortable about the subject so I asked my GP for a gyni referral, saw him last week been told it's vaginismus (apparently very common with SLE or Sjorgens ) I've now been referred onto woman Heath to see a physio. Not feeling so isolated now after reading others experience, I really hope you find a way forward 🙏🏼 but defo agree with everyone else communication is the key.

[Priss]

Thank you everyone