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Physical Intimacy

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Hi All,


Lately it seems that my desire has taken a severe nosedive. Granted, I'm peri-menopausal as well, but I think the constant pains of sclero, fibro and arthritis are more to blame. I love my husband and we are both getting frustrated.


We had a long talk and he's so understanding. He is afraid of hurting me, and he truly understands my tiredness and pain. Every time we try, it ends up kinda sad, because of all my issues. My knees hurt, my hips, my back, and shoulders. We've tried all kinds of positions, lubricants, etc. Once we get going, it's usually ok, but nothing like it used to be.


Is anyone else experiencing this? Could meds be to blame? What do you do to help yourself and your partner? Is my desire waning because I'm afraid it's going to hurt so subconsciously I don't even want to get in the mood? I find a good book and my heated blanket seem much more appealing nowadays! I hope no one is offended or shy, it seems we can discuss anything here, I hope it's ok. Thanks in advance,




Scleroderma, raynaud's, barrett's esphogus, resolved Ulcerative colitis, (colectomy) Fibromyalgia, arthritis, osteoporosis,

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There is another thread on this - I'll search for it in a minute and add the link. In the meantime, I wanted to point you to our page on Emotional Adjustment which has a section on the effects of scleroderma on sex drive among other things.


I married my second husband ten years ago after being well into menopause and I can assure you that it had no negative effect on the relationship - if anything there were several advantages. After my hysterectomy 5 years ago, circumstances forced us to change the way we approached the physical side of our relationship temporarily and during this time we found other ways to express our intimate feelings and grew even closer. Soon after followed the beginnings of the horrible fatigue, joint pain, sore muscles, etc. It is important in coping with these problems to be able to talk to your partner. One of the things we talked about was the necessity for me to take a more passive role. At first it seemed unfair, but I do so many other things (neck massages, etc.) that we agreed the 'division of labor' was fair enough. In the last year, we discovered quite by accident that the foam wedge pillow I use to control acid reflux has other uses. Of course we are very close and cuddly and a hug or spooning prior to sleep is always there, with or without sex. I believe this is important to keep intimacy alive.


One thing that has happened, however, is that I am no longer able to achieve personal gratification due to what my general practitioner describes as exertion headaches.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Oh Sweetheart, this problems seems to be happening to a lot of us. You say your husband is very understanding and that is a good thing. I don't know if for you, the problem are the meds, I don't take any and I still have the same problem.


For me is a total lack of desire. Like you said, a book sounds so much better, specially at the end of the day. It is becoming a serious problem in my house, we don't fight, but we do our own thing. My husband goes to his computer, I read a book.


It could be, like you said, fear of pain. It is hard to be as sexy when your back and knees are killing you, not to mention the disconfort of the dryness and the very hard to achieve satisfaction.


Right now, I don't think it is that important to be making love all the time but it is all about the quality of it when it happens. Try to do more hugging and kissing, making out like teenagers can be a lot of fun.


Stay warm,



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Karen, for me everything got better after about 1 year. I was in pain and things were tightening and I wasn't interested. Sex was the last thing I wanted to deal with. My body has loosened and I have liittle to no pain. It is almost enjoyable once again. Some things are temporary some things you get use to and its easier not to have to deal with it. So you think about it less and less often. My hubby now will say things like. Would you like to go play in about an hour. Then maybe a half hour later he will give me a hug and say we both have to work up to this because his desire has also been neglected for those many months. Then we laugh and help each other get our juices flowing and emotions happening and it all works out. I hope everything also works out for you. Sheryl

Strength and Warmth,



Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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wow, thanks everyone, I have tears in my eyes. It's so comforting to know I'm not crazy, and more importantly, not alone. I will keep trying and will definitely get one of those wedge pillows! ;) Thanks again, keep the ideas rolling in friends!

Karen :0

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