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I have clitoridynia
I have had clitoridynia since I was 18 years old. It was a nightmare as i
Went from doctor to doctor, tried numerous medications- Elavil used to work like a charm, neurontin, tegretol, morphine, lyrica, duragesic patches, lidocaine patches, lidocaine injections etc. I have such a long history with clitoridynia that I can't summarize it. I am 36 years old now. At my worst I had such burning, stabbing and radiating pain in my clitoris that I was positive I had nerve damage. I did so many tests and nothing showed to be abnormal.
5 years ago I found a pelvic physiotherapist who helped me. I have learned that some people carry tension in their pelvic floors causing muscle and connective tissue tightness. Pain comes from the brain so with clitoridynia you will have increased pain whenever you are upset or angry or stressed out. That's because the pain is directly affected by the nervous system so you need to take care of that part. Then physically you can have inner muscle tightness and connective tissue tightness that can be contributing to the pain. So mechanically you need to have physical therapy on the inner and outer vagina and pelvis or wherever you have tightness which will lead your body to cause pain signals in the brain. Seven years ago I was completely debilitated, off of work, couldn't walk because of the pain. At my worst I was in a wheel chair for a few years. It was hell!! I was single for seven years and thought I would never live a proper life. I was not able to work. I was on morphine for 8 years!!! What worked was the physiotherapy from my trained pelvic therapist. She does connective tissue work, inner vaginal work such as trigger point therapy, manipulating the nerves and muscles, outer physio work, pelvic floor stretches, pain education and management strategies, physiological quieting, yoga and other things for the nervous system. I have been doing 5 years of physiotherapy and I just recently got married and will be making a return back to
Work soon. I had to do 5 years of physiotherapy but I probably had one of the worst cases of clitoridynia possible. It was pretty bad!!! Water used to feel like acid on my skin and I
Couldn't have any touch me!!! Pain meds will temporarily mask the pain but the problem will still be there until you work on pelvic floor and do physical therapy. I went from 270mg of morphine a day to 10mg a day. I am doing so
much better!!!! The therapy helped me. Lots of research is being done on pelvic floor pain I'm general. Visit the NVA- the national vulvodynia association for more info. There are lidocaine patches or topical lidocaine that can help calm the pain and sensitivity. It will take time. Your body is trying to
Tell you to take care of the nerve pain. So you need time and strategies to calm the nerve in the mean time. Cold water after peeing used to help a lot, loose pants and clothes, elevating my legs and putting ice packs on the nerve used to help cool it down and when you have pain your body is telling you to do something about it. Hope that helps anyone with this problem. You are not alone and it will get better


This discussion is related to Treatment for Vulvodynia & Possible Pudendal Neuralgia.
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