Now at the end of my patients with PS - Any ideas please????

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I have had my lumps/sinuses for 5 years now. I have had them drained 3 or 4 times, I have had the cycst that developed removed once and I have had a reverse Y plasti which has left me with scarring and they still came back although not as deep, and am starting laser hair removal (Already have had a session) but they keep coming back and I must admit im getting a bit desparate!

I keep the hair away all the time but they are opening and closing daily causing real discomfort, I have to take intermitant days off of my work and all in all feeling very sorry for myself. Does anyone have any other ideas as to how I can fight this thing please?

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12 Replies

  • Posted

    I know how you feel I myself am completely at the end of my tether will the whole thing and its only been 5 months not years for me!

    Are you certain that yours is down to hair? have you had an mri scan of the pelvis to make sure you don't have any fistulas? If you have fistulas they make these bloody things reappear and sometimes in different places.

    I now have three holes in my bum and they have found three fistulas which need attention.

    Get on to your surgeons secretary and start kicking up a fuss, tell them honestly how this is affecting your life, cry if you have to you seem to get more results from kicking up than you do being strong and patient.

    Good luck love you deserve it! smile

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  • Posted

    Thank you and I have not after 6 operations had an MRI at all. I will get onto my surgeons secretary now
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  • Posted

    Called the doc and I have 2 fistulas open on the skin since the last operation known about and a whole pile of internal ones with cysts connected already removed as part of my Y plastic surgery, but thank you for the MRI advice I will be following this up its the best advice I have had so far
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  • Posted

    Hi I had my mri scan on wednesday and the surgeons have said that it has provided them with like a road map of the area so they can see fistulas and possible abcess that they have missed before. So friday i went for my 6th or 7th op(losing count now) where they have inserted another seton suture this time a cutting one??? which i will go to get tightened in four weeks and this will gradually heal things up to prevent reinfection. Fingers crossed this is gonna do the trick! my guess is they don't do these scans as standard because they cost money so they go in blind time after time and basically leave you in pain and misery, putting a price on your health!! its terrible hope you get one soon, you really deserve a break smile
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  • Posted

    Very best of luck to you and heres hoping! Let me know how you get on and I will keep my fingers crossed for you. The are trying laser hair removal with me now just incase it helps I can get away with not having another op, dont think they could remove much more or wont have anything left....
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  • Posted

    Hi had another flare up shortly after my last entry god i'm so unlucky! had another op on the 19th December where they cut more out, feels as though they have, at last got it all out as i do not have the throbbing sensation anymore( which i have had for the last 5 months.) I hope so anyway because i really don't think there is much bum left. Went for a Barium enema yesterday they made me swallow some chalky liquid which showed up my small bowel on x ray to check for chron's disease, I don't know the results until i see my surgeon on tuesday for op number 8 or 9 (though i think they are just tightening my suture and checking everything looks ok). God knows how long i will take to heal as there is quite a lot to heal and no longer being paid is not funny.Happy Healing Pilonidal free year to all :wink:
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  • Posted

    Let me know how you are hopefully better.... See my posting on Laser hair removal.... this is working wonders for me
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  • Posted

    Hi, its great news to hear that your getting better, i seem to be healing too. Nurses are still packing daily and the holes are getting smaller, the surgeon is pleased. I am feeling quite positive this time round it feels much better thanks for asking.

    I have another op at the beginning of march to change my seton suture but this shouldn't hurt too much this time and they wont need to cut me open so I can finally heal !!!!

    Good luck to you hope you never get the nasty again!! :D

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  • Posted

    Oh w4ell think I spoke to soon, 8 months after the plastic surgery to remove the abccesses and sinus tracts i have another one...... Still glad I had the surgery most pain free 8 months I have had in years. Laser treatment definatly helping but a whole appeared in my scar about a week and a half ago so now they are hoping it will close again. I have been doing research and now im asking if the PS is a symton rather than a cause of my condition Im looking into HS known as acne inversa as surgeon said it is quite possible I just dont fit all the standard criteria so no change there then didnt fit it for the PS either as I am fair haired and do not have a large amount of hair anywhere.... But hey the fight goes on and hopefully it will be some time before it becomes so large and painful again
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  • Posted

    Hi, sorry to hear your still having trouble. Have they ever suspected that you may have crohn's disease? I have just been diagnosed after a colonoscopy. The inflammation in the colon can cause abcesses and fistulas. It may be worth asking about especially as you are not hairy at all, it is unlikely you would have this many ingrowing hairs. I wish you all the very best, hope you get some answers soon.

    I have not had an abcess since december, keeping my fingers tightly crossed. I am on antibiotics for 1 month at the mo, then they will start me on medication to help the crohn's disease.

    Good luck

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  • Posted

    the futher abcesses are usually due to pockets occuring in the tissue as it grows within the wound. Next time you have surgery it is important the the wound fully heals from the base with no gaps for bacteria to remain in.
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  • Posted

    (Not all are on the bum)

    Mine cant be left open as it is my full clitoral region that is affected (I get multiple sinuses and abcess and cyst formation)

    I have had a third of it removed already and the rest reconstructed by a plastic surgeon, its now believed I may have a condition known as Acne invers which mean I will be prone to these throughout my life. Due to the area and the nerve clustering its impossible to leave it open without the risk of infection and terrible scarring increasing for me im afaid but many thanks for taking the time to post

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