S*x. It’s not a dirty word, yet it’s a topic we seem to want to avoid instead of deal with. We ignore it and try to pretend that the giant purple elephant is not in the room.

When I talk to friends with fibromyalgia, the topic of s*x rarely comes up, but when it does, it’s always in a negative light.

“He wants it, but I just can’t.”

Occasionally, I hear from someone who began their marriage with fibro, and s*x was never a big issue because it was never a part of the relationship. However, I’ve found that’s rarely the case. Many of us started off somewhat healthy, with at least some level of sexual drive and enjoyment. Relationships often start with lots of s*x in the beginning and then might slowly decrease as the relationship matures. This can be true regardless of health issues. For those of us with fibromyalgia, however, sometimes the decrease is sudden, not gradual. Just as with everything else in our lives, we may have gone from 60 to zero in no time at all.

Why does fibromyalgia have such a big impact on our s*x lives?

Pain: I believe the biggest reason our s*x lives are affected by fibromyalgia is simply pain. Often it hurts even to be touched. This affects not just our s*x lives, but our overall intimacy. When you can’t even be touched by the person you love, it’s really hard to have any sort of physical intimacy. No hugs, no kisses! It sucks. It’s not like we want this; we want to touch the people we love, we want to hold them and have them hold us. The worst part is that we are in a state where we need that the most, but we can’t have it. Even if we can handle basic touch, our muscles are often so sore that the positions required for s*x are difficult and often painful. And we haven’t even gotten to insertion and what sorts of pain may be going on there.

Fatigue: Chronic pain is the hallmark of fibromyalgia, but fatigue comes right along with it. Honestly, most of the time we just might not feel like doing anything, and s*x is the last thing in our minds.

DepressionMore often than not, after dealing with pain and fatigue for months on end, depression can follow. Without depression, we might think more about the impact of fibromyalgia on our s*x lives, but depression can actually affect sexual desire as well. When we experience depression, sometimes we don’t care about anything, including s*x.

Honestly, in my opinion, fibromyalgia and s*x go together like oil and water. They don’t play well. Even if we can make it through s*x without being in agony, we often end up so worn out by it that we can’t do much when we are done. And, this doesn’t even take into account the many other co-related issues that often come with fibromyalgia that impact s*x, as well, such as endometriosis and vulvodynia.

So what can we do about the impact of fibromyalgia on s*x lives?

Talk to your partner. It is so difficult to be vulnerable and honest about what is going on with our bodies. However, being honest and open with your partner about how fibromyalgia is affecting your desire for s*x, or causing you pain during s*x, can help them understand and lets them know you aren’t rejecting them. When we turn down s*x with our partner, they might see it as a personal rejection. They could turn it inward, thinking we don’t find them attractive anymore or some other such thing that isn’t true. We need to be honest with our partners.

Find other ways to be intimate. Being vulnerable is a good start towards creating new intimacy, but we all still need physical touch. If you can handle being touched, allow them to do so in any way that works for you. Even if all you can do is lie naked beside each other in bed and have a conversation, that’s something.  Kiss and hug your partner daily (if you can do so without pain). Intimacy isn’t just about s*x.

Talk to your doctor. Be open with your doctor about how your pain and fatigue are impacting your s*x life. If you have pain during intercourse, seek a pelvic pain specialist. Your pain might not be “just fibromyalgia,” and there may be other treatment, such as physical therapy in some cases.

There, I said it. It’s out there. I have fibromyalgia, and s*x hurts. It sucks. I hate the impact it has on my marriage, but I love my husband.