aww so sorry to hear. My partner and i were like that and i said to him its my Lupus not him. We spoke about it as only you two know when its good and whats good and whats not. I found just the caressing and massaging would be enough at first. when i felt relaxed it was ok. I never felt pain and even if it did get like that we would take things slowly. Its important to keep the sexual contact up but its also good just to have him or her laying next to us and the touch is sometimes enough. There are other ways that our partners can be satisfied and there are ways that they can satisfy us We all know about lubes and toys and certain massage spots that can turn us on. Its all down to what and how you both like it and the other person is feeling. It takes time and patience and it can be so rewarding in the end. Good luck and enjoy.

Libido,
I'm guessing it's your body prioritizing its own needs. It's that simple and complex at the same time. That's not the best answer I'm sure. I know from my own experience, if I'm preoccupied upstairs nothing happens downstairs. I hope this helps a bit, don't worry, it will happen at some point.

I agree with what the other posts state. Having a high intimacy level in a relationship makes a world of difference. I'm blessed that my other half is a physical therapist and he always asks me if I want treatment , empathy or just a shoulder to lean on. Just knowing that he is there makes all the difference in the world. He also asks if i'm ok or if thinks need to be different for my comfort. I still go back to communication is a big part in all of it. I like to make sure that his needs are met one way or another and he reciprocates depending on how I feel. Now that the doctors have figured out why I don't have a sex drive and have put me on hydrocortisone and prednisone it has helped. Things are better not perfect but better. Lupus is a horrible mistress to carry around with you. It would be nice to be able to check her at the door sometimes.

I agree with what everyone has said and the best this is communication with your partner makes all the difference. When they diagnosed me with Addingtons I looked it up and it controls your sexual hormones and I don't produce any! So it has been a challenge all the way around.

I also have a problem with my libido. I don't know if it is from the disease or medications I take - I suspect the latter. I cannot have an orgasm at all, even when my husband and I manage to have sex. To be honest, it bothers my husband more than me, since my desire has all but evaporated. If would be most grateful to hear if anyone has successfully dealt with this issue.