I have a condition that has been diagnosed after many years suffering and pain. I am now receiving successful treatment. My pelvic floor muscles are in constant spasm, with severe spasms lasting hours-weeks and causing excruciating pain and incontinence. The condition has affected every aspect of my life over the last 35+ years. The condition may be related to my EDS (hypermobility disorder). I have SIJ dysfunction. I have had a rectocele and cystocele. I have suffered from IC and had every treatment going. I recently saw Mr Vic Khullar at St Mary's Paddington London. I now have Botox to my pelvic floor every 6 months. This reduces the spasm and allows my bladder to function more normally. I practice and teach Pilates to help with my EDS and strengthen my core and postural muscles to help my SIJ issues. I take nortyptiline if I have a particularly strong spasm. My condition is not well understood by medical professionals outside of Mr Khullar's team. My GP is next to useless. Other urogynae consultants do not understand this condition. I have seen so many posts on here that sound like mine. I want you to know, if you are reading this and thing you have the same, that you are not alone. There is someone who can help. Your condition can be managed and there is somewhere you can go. St Mary's is a teaching hospital so anyone in the UK can ask their GP to refer them to the clinic. Stay strong. Seek help and don't give up.
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