I am a 47 year old woman who has been living with a rare sexual dysfunction for over 25 years. It started when I was only 21 when I stopped feeling pleasure during intercourse. Before this happened, it had always been extremely pleasureable for me. I still had a great sex drive because I had clitoral feeling, but I missed lovemaking. I told my doctor my concerns but he just laughed and told me that women don't need to feel pleasure during intercourse. It isn't important because there are other things the can do. I was stunned...and devastated. This would begin a long search for answers.
Fourteen years later, when I thought things couldn't get any worse, I lost all my clitoral feeling as well. Any kind of sexual stimulation was like rubbing your fingers together. There was pressure but no sensation. When this happened I noticed a constant and progressive pressure and numbness in my left hip and vaginal area. I kept telling doctors that my muscles in that area just felt "tired". Still, they were unconcerned. But I always dreamed of finding out why this happened to me.
Finally, in the summer of 2009, my 17 year oold son was diagnosed with a rare genetic enzyme disorder called acylcarnitine deficiency. It means that the body lacks an enzyme that metabolizes fat to give the muscles energy. This affects the nerves, muscles, heart, and brain. And it can also cause symptoms from diarrhea, vision problems, and sexual dysfunction to anxiety and depression. So I finally had my answers.
Now I want to write and help other women with this heartbreaking disorder, as well as other people who may have a genetic disorder causing mysterious symptoms.