“I am in constant pain, and find it difficult to sit, stand, lie down, walk, sleep, and concentrate. I also have no libido and no appetite. I constantly feel like I need to pass water, but sometimes when I try to go, there is nothing there. [My condition has caused] feelings of isolation, depression, desperation, and abandonment by the medical profession. Nothing seems to work, and several doctors have told me there is nothing they can do…Never give up on hope. Try and keep busy and carry on your life as best you can. Try and get lots of rest and keep going out with friends and enjoy things – I think is perhaps the most important thing is to tell people. I know it is embarrassing, but once people understand what you are going through, they are very sympathetic and offer support. Don’t suffer in silence!”