Spondylitis Association of America Forums General Discussion Women Only Message Board A "touchy" subject

Okay, I don't expect anyone to be able to help me with this, but I want to know if I'm alone on this sad "side effect"

I've been with my boyfriend for several years, still madly attracted to him and just as in love as always. But I find that since the pain increased, the desire to fool around has decreased, A LOT. I'm young, we aren't married and it's not like we're tiring of one another. But I must admit, I just have very little to be intimate with him. And it's not like a "Well I want to, but I'm hurting" kind of thing, mostly. It's more "Gosh, do we have to?" I've tried to explain to him that being in nearly constant pain completely wipes me out physically and mentally, but he's beginning to take it personally.

Am I alone on this one? Does anyone have, well, advice for me?

Hey Emmie,

You're definitely not alone. I've been with my bf for almost 2 years now. I have always been greatly attracted to him and was always in the mood for him. I have been noticing a pattern though; when my AS gets worse (i.e. flares up, increased pain/stiffness) I just don't feel in the "mood" as much as I used too. The worse is in the mornings too, when I'm all stiff and sore - then I'm definitely not in the mood! :P

Try talking to your bf, explain to him how your pain/stiffness affects you on a physical/sexual level. Try and reassure him that it's not him. He just needs to understand and he can achieve that through communication. Talk to him, be honest - it'll be good for the both of you.

Since we are on the topic - how do women cope with feeling "sexy" and having AS? I know I don't feel as hot anymore... Am I the only one? How can one keep up that feeling of being sexy when your back can't bend or move like it used to? or like when you're in your 20's but wake up feeling like your 85?

Not good for you, but comforting to hear someone else deals with it. We've had a very strong physical attraction from the beginning, and as I said, I still am ga-ga over him. But sometimes, it just doesn't matter. He could be Johnny Depp and I still wouldn't feel up to it That's not to say I'm never in the mood, but if it's been a bad pain day, I'd rather be sleeping it off.

I have talked about it before, and he still takes it personally. So if I'm not in the mood and it's been a while, I will sometimes try to put on a good face. Even though it's not personal, I don't want to hurt his feelings. Maybe that seems wrong.

As far as feeling sexy, I have had a really, really rough time with that lately. He's really awesome about it, still tells me I'm beautiful and sexy all the time. But in the past year or so, I've really fallen into a slump. When the pain is at it's worst, I find myself depressed, and over the past year I have gained a good amount of weight, about 15 pounds or so. I've never been a size 2 in my life, but in the past I was proud of my body, loved my curves and now I can't stand to look in the mirror. I've been exercising a lot lately, eating better and trying to lose at least some of the weight. But until then, it's just hard to feel good about being in the buff.

It's hard to know if this is due to your disease or just a natural drop in passion that often occurs in long term relationships. If you even suspect you may be depressed, talk to your doctor about it because there are medications that can help. Loss of sex drive is a side effect of both depression and chronic pain. Also, make sure that loss of libido is not listed as a side effect on any of your medicines!

What I've found is that maintaining a sex relationship sometimes takes effort but it's worthwhile for the intimacy it creates. My partner is 12 years older but still has a stronger sex drive than I do. I almost never turn him down. Sometimes I initiate sex even when I don't feel like it, because I want to please him and feel close to him. I've never regretted it, even the times when I'd rather be sleeping. Maintaining a strong sexual connection is an important part of our relationship and really helps us feel close and connected.

I don't know your age, but it could be hormones. I had a complete hysterectomy and was on estrogen and still having hot flashes.

My Dr. put me on progesteron and what a difference. No more hot flashes AND it helped with my sex drive.

Emmie, I know exactly where you are coming from. My advice is to first work on appreciating where your body is now. I look back on the body I had in my 20s and I wish I had appreciated it then. I remember always worrying about my thighs or the 1/4 inch I "thought" I could pich on my stomach. If I knew then what I know now I would have been running around NAKED. I try and remember that now when I look in the mirror. Sometimes it's hard but when my husband says after 10 years of marriage that I am sexy as he** I believe him and go with it.

I have struggled with my waning interest in sex for the past ten years. I find it goes in phases. My husband has come to understand it and realizes it's not about him. I think what is important to him is that I constantly make an effort. When I am in the mood we take advantage of it as often as possible and when I am not, and I am physically capable, I make an effort. I have found things that work to get me "in the mood" and I make an effort to try them.

I think the important thing in any aspect of our lives is to talk about them and make sure our partner understands where we are coming from.

Best wishes!