Testimonials

"[I had] extreme soreness/burning mainly around the clitoral area. I once heard someone describe it as ‘Chinese burn x 1000,’ and this is exactly how it feels. I have cystitis-like symptoms, along with diarrhea and bowel pain. Often, I would wake up needing to pee at 4am, and would be unable to get back to sleep, so I would become very tired…I still have the odd moment of discomfort, but so far so good. I am going to stay on treatment for the foreseeable future…Do not sit around and worry about it if you can. Stay active and try to stay happy. I know it’s very hard."

"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!"

"I sought help around 3 years after the symptoms started, as for a long time, I was convinced it would just go, or it was off the back of having extreme cystitis. I have seen several different specialists, starting with many GPs who do not understand the issue, and just checked me for STIs and infections, of which I had none. I also saw multiple consultants who were more educated on it, but probably not enough, as there still doesn’t seem to be sufficient research and results for the condition…I would say it's a long journey, and you will be given lots of different advice, as there isn’t a one fix cure. I would say if you have had bladder problems, look at getting an examination to check that your bladder is not making the symptoms worse. I would also say get on board with a good physio who may give you exercise, or use a pelvic power chair, which can strengthen your pelvic floor. I also think that making sure you’re keeping all yeast at bay, is important, so [that means] keeping a really good neutral pH in the vagina, and just washing it with water."

"I had knife-like vaginal pains that made intercourse really painful, as well as a constant sensation of dryness. I’ve seen a vaginal pain specialist, a women’s physiotherapist (not with much result), and then Dr. Jenner. I feel much less pain now, things are almost back to normal."