Pilonidal hell

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Hi all, im currently awaiting operation number 10 i think it is now! Ive suffered with pilonidal sinus for the past 4 years! Ive had it excised god knows how many times, had it layed open and a limberg flap done. After the limberg flap failed i had it layed open again and vac machine attatched in surgery. Healed well that time and had 4 months relatively pain free! Untill january. I just knew! Tried to tell myself it was nerve pain, since i suffer terrible with nerve damage now due to the operations, then i had leakage. So took myself to the gp, who admitted me to the surgery ward. Got dischard that night so i could have mri done. Saw surgeon monday, for mri results. There is a deep collection so i am now waiting for another excision, thankfully on urgent list so shouldnt be waiting long! Im in south yorkshire, does anyone know of any surgeons that could possibly have a chance of fixing this?! Or any ideas! Im running out of hope now, this has been vitually constant for four years! All i do is suffer, i am lucky i have an understanding boss, thats all i can say, else id probably have given up work also thanks to this disese!!!

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10 Replies

  • Posted

    Really sympathise with you, sounds like you've had a terrible time. My son has had this for 6 years. Following 3rd op in London it seems to be healing better than before. Fingers crossed. The surgeon is only private tho. But absolutely the best and the best money I've ever spent. Emin Carapeti. Good luck
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  • Posted

    Is it possible that the surgeons are not taking enough of the surrounding tissue? I am so sorry, it sounds like you are having an awfultime of it. I'm currently experiencing an infected pilodinal sinus for the third time sad they are not pleasant. Have you always been advised that surgery is the only option?
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  • Posted

    I am going for surgery tuesday to remove a deep collection 😭😍 when will this stop???
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    • Posted

      All the best for op, my son had 3 ops. Latest one worked for him but has been 6years of hell x
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    • Posted

      All the best Tina.

      Yes finally Daniel it has healed! Three ops and 6 years. Thanks to a fantastic surgeon and also relentless daily care by me and my husband. Surgeon has literally given my son his life back, don't lose hope, there's def light at end of the tunnel. How are things with you?

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    • Posted

      My actual wound is looking loverly now practical healed my gf tells me.. only thing is now I need a mri scan because for some reason I'm bleeding between my bum and my testicle..the perineum think it's called.. a slight cut.. it could be nothing but this new doctor I seen recently wants to rule things out like a fistula.. hope to god it's not one of them like because I've heard there horrid..and obviously it's in a horrendous place.. mri scan booked in for the 10th of may.. Hopefully it's just like a little abcess.. just it bleeds quite bad only when I use the toilet.. so it's just strange...

      Tell your son am over the moon for him.. I know how he must of felt all that time he's been on the heal getting packed daily etc take care

      Dan

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    • Posted

      Hi what did your son have done i have had my second op now excersion and primary closesure and seen the nurse today after 2 weeks for stiches out and shes left them in and rang the hospital because it has broke down there is a hole with a cavity in so awaiting hospital response now it effecting my work now and also my football i am 22 and it starting to become an absolute nightmare now ?
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    • Posted

      Hi there. He had excision and primary closure about 5 years ago . It healed ok but sometime after it was apparent that the final part had just healed over and it happened again. He has unsuccessful flap procedure in November 2014 . Then last September he had similar to first op but the surgeon (who is amazing!) stitched up most of depth to about 3cms deep. I then cleaned and packed it everyday since and he checked it regularly. It's just healed completely. I'd say it's the cleaning daily and breathable dressings that did it. Plus the surgeon had some cream he gave my son that we used if it looked infected. I send you lots of good wishes and hope it gets sorted, don't neglect it at all, I think first time round we got complacent and wd never do that again!
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  • Posted

    Hi

    Being a sufferer I really do feel for you. I was suffering with my pilonidal sinus for 10months.

    One thing I recommend after my operation which I had done at Christmas time last year. Is that you Firstly go through Bupa or Spire if you can- they are amazing.

    Also when your wound is healing after every bowel movement at home u get a tub fill it with water and salt, and using a cotton pad gently apply this solution to your wound as it really helps the healing process.

    My wound has totally healed thankfully, but even now I still wipe it regularly after showers and keep the area dry.

    Stay strong

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