This is a little long but i thought I would share my experience with pilonidal disease It was jan of 1999 i was 15yrs old on a family holiday interstate i didnt want to ruin my holiday so i didnt tell anyone i was in pain i couldn’t sit i couldnt lay on my back.
Finally 2 wks later i was home i told my mun i thinkni bruised my tailbone she had a look and immediately took me to the dr. The dr only had to look at me to tell me it was a pilonidal sinus he numbed the area and lanced it to give me some relief but stated that i would need an operation to fix it. It was only about a week later mum got the call and we had an appointment the next day. I was booked in for surgery in feb 99 but i got a cold so it was postponed for 2 wks.
March 9th came round it was d day they dr was confident said 4 weeks from opening to completely healed on with a normal life ( he was so wrong but we will get to that) it was worse than he originally though i had 2 cavities and the second had completely engulfed my tailbone so that was removed aswell. He was still saying 4 weeks i went home 3 days later only to end up back there on day 5 due to infection.They re-opened the wound cleaned and drained it and left it open this time.
Recovery went from 4 weeks to 6-8 weeks well that wasnt the case cut a long story short i was in and out of hospital for 41/2 years in total. I was told i would never walk again due to the amount of tissue i had lost and the fact that i had 3 nerves severed during the original surgery. I was told i would never have children and if i did fall pregnant i wouldn’t be able to carry the baby to term well i proved them wrong on both things. I never lost the ability to walk and by the time i finally seen the back of the hospital in oct of 2003 i had a beautiful almost 2 yr old girl.
My last sinus in 03 the surgeon wrote in a letter to my gp that he was reluctant to operate again as i had lost so much tissue i was down to skin on bone and any surgery would cause severe mornidity to me. Lucky for me the conservitive approach worked and i avoided another operation. I was finally discharged from the outpatients clinic able to live and enjoy my life by this time i was 20 yrs old. In the time since then i have gone on to have another 7 children ( a set of twins in that. I carried them to 31 weeks).
Now it wasnt easy i suffered alot of pain and weakness in the legs but i did it just so i could prove the dr wrong. It has been 19yrs since the first cyst appeared and almost 15yrs since i walked away from the hospital a free woman. Well excatly 19 yrs to the day of my first op the little bugger has reared its ugly head again. I now have a new sinus with a large underlying cavity. Due to the amount of tissue i lost last time no other hospital will even touch my back. I am now waiting for my original hospital to look at my referal and decide if its urgent or not. I have a hole in my scartissue about the size of a pea with a large amount of discharge. The pain this time round is almost unbearable and i am contemplating going and sitting in the emergency department so they have no option but to see me.
The reason i say contemplating going is that i know i will require more surgery. I also know what that will mean for me in the end u have fought had to keep my ability to walk and in a matter of a few hours it will be taken away and that terrifies me. I guess it will come down to hiw much pain i can handle and if it does become to much. Anyway i just thought i would share my story and let everyone know it can come back even if you have a the surgery and i have had multiple surgeries and mine is back
Hope this helps others to understand that these things are unpredictable