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Patient Experience > Quotes
“I can't stress enough how important it has been for me to finally get a diagnosis. The symptoms of this problem make you feel ridiculous, by that I mean having to tell doctors that I just cannot sit down, EVER and them not understand that it is a genuine condition, has been extremely frustrating to say the least …………… . To see the doctors in France was a real turning point for me. I cannot begin to tell you how wonderful it was just to have a professional understand my problem. One doctor gave me a simple leg exercise to do as on testing I was found to have weak muscle. This simple exercise has reduced one aspect of my pain enormously. If only I had known about it several years ago I could have been spared an enormous amount of suffering. Since surgery my medication has been reduced …. I am now able to read and hold a conversation ….”
UK
“There is no one I can really speak to. No one can understand apart from other sufferers. My family makes me feel responsible for the pain. I havn't had a good experience with therapists. I interrupted therapy and tried to help myself. It worked. Now I've found people who have the same as me and the condition has a name. I didn't know what was wrong with me before”.
Germany
“What I found was good: they don't emphasize a psychological cause, but that the influence of nerve function lowers the tolerance level for stressors and the pain threshold. The doctor is optimistic that we'll find a way of managing the pain.”
Germany
“I am so used to my symptoms now that I forget how hard I initially found it to describe them. I was in pain and frightened and I just couldn't summon up the words”
UK
“No medication even touched the pain. It was the thought that someone, somewhere might be able to help me that kept me sane and motivated.”
UK
"My original diagnosis was vulvodynia. The pain became traumatic and I went into a black hole of despair. My pain level was 8-9 on a scale of 0-10. I only had ordinary painkillers.The diagnosis then changed to cauda equina and then to pudendal neuralgia. I took different medications but the pain level was still 6-7. I had nerve blocks followed by surgery to decompress the nerve. Since then I have had a follow up nerve block and reduced my medication. The pain level now fluctuates between 2-4. I now feel more positive about the future.."
UK
"The information i was able to access for myself enabled me to speak in a more informed manner about possible alternatives with my GP today.... you have no idea how much you have helped me when I felt I no longer knew where to beging to turn".
UK
"Describing pain using a 0-10 scale is difficult. The way it leeches your energy and strength is a key part".
UK
"Giving patients a list of adjectives to describe pain is limiting and deprives us of the freedom to use words and descriptions of our choosing. It may be easier to identify with images "
UK
"None of the adjectives used in pain questionaires describe my pain. There are no words to describe it. "
UK
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