HI, Im Hayley and i have suffered with this disease for 8 years, It started at age 17 with a minor pimple and now 8 years later, 12 surgeries and I’ve just got ultrasound results that advise i have a sinus tract developing under the skin again! Its a journey and a half i have to say, i had one sergeon whom operated 6 times before finally admitting to me he did not know what he was doing and needed to refer me on.
I am now with a plastic and cosmetic sergeon who has performed multiple surgeries including draining and open wounds, skin flaps, skin grafting, full reconstructive surgery of the entire area and i still seem to always have a sinus tract return and quite ofter the pathology comes back with no hair!! Its very strange! I am at a desperate stage now, ready to go in for my 13th surgery, I have tried every method, idea concepts or treatment that i could think of or Dr’s nursing and healthcare staff recommend Ive used packing, VAC dressing machines, stitches skin grafting and its incredible nothing seems to work I now have that much scaring in the area that i can’t nesscarily feel the skin but feel the tenderness and scared tissue that is under the skin I am in pain 24/7 i have constant pain, wether deep tissue or in the form of cramping down my legs and pain in my back, Drs believe that during the suregerys they have hit so many of my nerves that i will have cramping down my legs for the rest of my life. I am simply be walking down the street and my legs go from underneath me i can’t walk move or talk all i can do is scream n pain!
Between surgeries and healing times i have tried exercising and getting healthy but i simply can’t exercise due to excessive pain in my buttock area and the cramping down my legs or sit for long periods of time. I find this disease very debilitating embarrassing and it affects all areas of your life. I am now 25 years old been married for 4 years and would like to consider the option of having a baby but unfortunatley at the rate of being in hospital every 4-6 months with surgery or treatment i not sure i could bare a child for 9 months
My heart goes out to all who suffer with this and i personal believe it takes someone to have been through this to really understand the pain, hurt and embarrassment that this disease brings. If i can be of any assistance to anyone please let me know i know how hard this is and i know that it is something some of us will face our whole life!