Lupus Support Group

So I'm 31, and married for almost 3 yrs to the most amazing man, I tell everyone that he was sent to me from the highest level of heaven ;o) We have an awesome relationship and he's been great since I have been sick but obviously our sex life has taken a serious suffering and I feel bad for him. I have no desire to be intimate, especially since I've been sick with some sort of upper resp funk for the last 30+ days along with the other crap that we deal with. To be totally honest I think that he's scared to hurt me physically, he's a big guy. I've told him that I'm not THAT fragile but he sees me in pain all of the time and wants no part of possibly making it worse in any way.

I know this is a very personal subject but how does everyone else handling it??? I can't be the only one out there dealing with this aspect.....

I deal with it also and hubby knows that unless I start it it ain't happening. One thing we do do though because he is afraid to hurt me is allow me to position myself where I'm comfortable whether it may be on top, hands and knees or on the side. Just try different things and if all else fails if he won't give it to you drive him nuts to the point he can't resist.

Yes. This has definitely become an issue in my marriage. I was always the one with the high libido. But this has declined greatly over the years. The Sjogrens coupled with premature menopause after havig my one last ovary removed last March; has caused such vaginal dryness that has led to both of us being turned off. However, the issue of my husband not wanting to add to my pain is definitely true. He just doesn't want to go there. So he takes his cue from me. When we can we do and when we cant well we just spend time cuddling, talking, playing board games or watching the tube. But it helps to know that I am not alone in the intimacy issues.

Intamacy ? Had forgotten what that was? My hubby is the best and he to won't go there.. We joke that I went from nympho to nothing. But seriously it is basically as the rest of u are saying; we cherish the time together and if and when I can we do if not we just don't. Here's to our wonderful understanding partners; )

Yeah!! Here's to our husbands. There should be a place for them to go and vent

Hello. Thanks for this topic. Yes, it's a huge issue. My husband still wants, and sometimes I just can't give, even if I want to, it just hurts, and then it hurts that I can't and it's this spiral downward from there. I want to and I want to want to very badly, and I hope we can get to that good place again. He's still here through it all.

Hummmm...I'm thinking ... I haven't checked on Lupus Foundation of America site ... I bet there's something there. I was diagnosed with SLE and then Interstitial Cystitis 2005-2006. There's a great book that is helping in explaining the discomfort. I recommend the following books: 1. The Interstitial Cystitis Survial Guide by Robert M. Moldwin, M.D., F.A.C.S. 2. The Lupus Book, 3rd Edition by Dr. Daniel J. Wallace. He now has a 4th Edition available. Page 131-132: Dr. Wallace states, "It's rare for women with lupus to be unable to enjoy sexual intercourse. Female sexual dysfunction because of disease activity is UNUSUAL in SLE. The two well established exceptions are vaginal dryness from Sjogren's Syndrome and vaginal ulcertions, which are rare compared to oral or nasal ulcerations. Both of these conditions can result in painful intercourse. Vaginal dryness is managed with lubricants and ulcerations with a hydrocortisone ointment. Sometimes women with avascular necrosis or other destructive changes in hip have difficulty speading their legs apart." Chapter 25 page 202 Dr. Wallace talks about Marriage, Family, and Sexuality. "A detailed survey showed survey showed that only 4 perfect of women with SLE had major problems with sexuality." Most of these cases dealt with a dry vagina from Sjogren's syndrome (also causing dry eyes, dry mouth, and arthritis)that is difficult to lubricate and can cause painful intercourse. Other cases involved women who understandably complained of being too tired to participate in sex."

Please talk to your physician gyn specialist. There are many things that can be done here. If anyone would like to discuss this in private please feel free to pm.

We have a site called Benlysta Buddies on Facebook. Here the spouses (men as well as women) who are there for support for their spouses with lupus who are receiving Benlysta. That maybe something we should start here, as well. If anyone is interested please let us know.

Hi there, I have experienced the vaginal dryness and vaginal ulcertiones, which definately make intercourse painful, but apart from this I ache everywhere sometimes and have such a painful arm, shoulder and neck, that even trying to just have a cuddle is almost too painful and find myself afraid to have anyone near me. Definately spoiling our relationship. My partner being kind just doesntmake any advances anymore.

Post edited by: willywong, at: 05/12/2012 06:44 AM

After 1,200 mg. of Prednisone for 3 months to keep me alive, I ended up with a hip deteriorating, which made it difficult to bend my leg at the hip very far. Being so young they didn't want to operate, because back in '82 some of the replacements only lasted for 20 yrs.

I'm only 95 lbs. Before my husband lost a lot of weight, he'd joke, "Fatty and Skinny went to bed. Fatty rolled over and Skinny was dead."

Any way...LOL...we had a friend who gave us the book, "The Joy of Sex" and it has drawings of different positions to be comfortable in. Having a creative mind helps too.

Willywong ... there's meds for vaginal dryness ... GYN or your regular medical doctor can help.

What a great topic ...