My story of sexual dysfunction begins when I was only 21. It was at this time that I lost the ability to feel pleasure during intercourse. This was something that had always felt extremely pleasurable to me before so I was confused and afraid. I went to my doctor and complained but he just laughed and said that "women don't need to feel pleasure during intercourse". According to him, it wasn't important because there are 'other things they can do and most women don't climax that way anyway". "Don't worry", he said. "You're normal". And then he left the room. I was stunned. This would mark the beginning of 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. It just faded away. I was only 34 and I was so depressed I cried for a week. I didn't want to spend the rest of my life like this. When I lost the clitoral feeling, I noticed a progressive feeling of pressure and numbness in my left hip and vaginal area. I went to yet another doctor and even though I thought that they might be concerned that I had no clitoral sensation, I was wrong. No matter who I went to, they were not impressed. I had other symptoms too: like chronic diarrhea and bilateral cataracts when I was in my 20s. And I told my doctors that my muscles, especially in my hip and vaginal area, felt "tired" all the time. But I had to really push for tests from even female doctors, who you would think would be more compassionate. But one thing I have learned about doctors is that if they don't understand why you have something, in their mind, it must not be real. Still, I always dreamed of finding an answer.
It would come when I was watching an episode of "Mystery Diagnosis" on tv, two months after I had lost my job and health insurance in 2008. There was a story about a little girl who suffered from horrible bouts of diarrhea. "Poor kid", I thought. I knew how it was to feel sick all the time. Something told me to listen very closely to what was said next, and when I heard that she developed cataracts when she was only 10 years old, I felt like someone turned on a light. I had also had cataracts when I was young and I wondered how on earth those two symptoms could be connected. I listened to her story and learned about genetic, metabolic disorders and how they can cause all sorts of symptoms. Then I made an appointment for my teenage son, who had also been sick, to see an excellent specialist in genetics and neurodevelopment, Dr Luis Escobar. When his test results came back, I was right. He had a rare genetic metabolic disorder. It is an enzyme disorder called acylcarnitine deficiency. It means that the body lacks the enzyme to help convert fat into energy. It affects the muscles, heart, and brain. It can cause many symptoms such as diarrhea, vomiting, exhaustion, vision problems, and yes, sexual dysfunction. There is a wealth of information about this disease on the internet and I would advise anyone who suffers from unexplained symptoms to research genetic disorders. I also had my mother tested because I was sure she had it since she had been sick many times during my lifetime. She was also diagnosed at 83! This proves you can have an illness like this and go your whole life without a diagnosis. In fact, sometimes this disease isn't discovered until performing an autopsy, where it is evident in the heart muscle. So I had my answers.
I myself was just tested last week. I finally got some financial help for the testing. I get my results this week. And NORD, The National Organization for Rare Disorders, is sending my medicine. Yes, there is treatment for this disease. I hope and pray that once my body gets the medicine it needs to be able to function normally, I'll get my sex life back. Dr. Luis Escobar, who diagnosed my son, said that it takes about 6 months to a year for the body to really begin to respond to the prescribed treatment.
Its sad that so many women who have a loss of vaginal or clitoral sensation have to go for so long without compassion and medical help. Even though we are different from men, I believe the the quality of care should still be the same. So now I tell my story wherever I can. The media isn't interested. You'd think they would be. But apparently, we women seem to get the cold shoulder when it comes to providing real stories that could help other women having the same sort of problems. I hope someday, the media will be comfortable writing for women as well as for men. I believe its our turn now.
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