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Pilonidal Sinus - anyone else ever been affected?

[Deleted User][Deleted User] Posts: 1,291
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About 4 weeks ago now I noticed sharp and severe pain in my coccyx region when sitting down. Being at Uni, this was a real pain. Went to see my doc pretty promptly - within a week, and was diagnosed with coccydynia. Had physio for another week until a red lump appeared and my physio said she thought it might in fact be a pilonidal sinus, as she had had one before and it looked similar and the symptoms sounded familiar.

I have now come home from Uni, the pain is preventing me from walking, sitting down and sleeping - there is no release from pain other than absolutely knocking yourself out with painkillers.

My doc has put me on Metronidazole and Augmentin, but from what I've read, prescribing antibiotics really only helps combat the issue right at its beginnings, and four weeks on I most probably require surgery.

Does anyone have any experience with these? Am really wanting to hear some success stories as all I'm reading about is people who have had recurrences. Would also like to know if anyone has suffered scarring from this.

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    SystemSystem Posts: 2,096,970
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    I know of someone who has one. It gets sore for a wee while, then all this muck comes out and then it's ok. They got referred and the Doctor/Surgeon person said as it wasn't too bad there was not point in surgery. Just to get antibiotics if it 'flares' again.

    They said that there are a couple of ways of dealing with it, they cut all the infection out then pack it everyday and it has to heal fromt the inside out, or they do this operation where you don't have a workers bum anymore:confused: problem being none of them actually cure the problem and it could return.

    Yours sounds a bit more severe than my pals though, you might need intervetion.

    Sorry, I really feel for you.
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    [Deleted User][Deleted User] Posts: 215
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    Hey, yeah I suffered from this for 3 years (I was very unlucky though so please don't worry!)

    I'm afraid that it sounds as if your only option now would be surgery as it's gotten to the point where it's flared up.

    The most common procedure is the open excision, I had this done (for me it did not work but that's a whole other story, it does work for many many people) and then went on to have the cleft lift, only about 8 surgeons in the UK do this though.

    The best thing for you to do is go and see your doctor and get referred to a colorectal surgeon who can then advise you what your next steps should be.

    Some people choose to live with this but it really is not a good idea as it can be worse underneath the skin than it appears on the top.

    I am so sorry to hear you are suffering and if you ever need to talk just PM me :)

    Ooh and pilonidal.org is an amazing website to help with this.
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    cahcah Posts: 24,689
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    My OH had this, the first time he was stiched up staight after surgery. But 5 years later it reoccured this time it was left open and had the wound packed every day so he could heal from the inside out. and while not very plesant it seemed to work as this was over10 years ago and he hasn't had one since
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    vanzandtfanvanzandtfan Posts: 8,897
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    I had this when I was 18, although it doesn't sound as painful as the one you described. I had to have surgery, and haven't had the problem again
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    marlomarlo Posts: 252
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    i've had it lots of times - about a month go i had antibiotics, but I can feel it starting to come back again now.

    even with surgery, it will still come back in a year or two. it's a complete pain in the @rse!

    the only thing I found that keeps it at bay is shaving the hair from my backside regularly, and hot, hot baths with a cup of salt added.
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    [Deleted User][Deleted User] Posts: 1,291
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    Thank you all :)

    Just went to A&E to be told there was a four hour wait - obviously I wasn't willing to wait that long as sitting/standing are both so excruciating.

    Does anyone know anything about the scarring after ops?
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    [Deleted User][Deleted User] Posts: 1,291
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    One other thing to add - and I apologise for gory details - having been on antibiotics for about 48hours, some pus and blood has begun to ooze out although quite slowly. Am on painkillers so I can't really tell if the pain is lessening or not.

    Does anyone know if this is a good/bad sign?
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    [Deleted User][Deleted User] Posts: 215
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    marlo wrote: »
    i've had it lots of times - about a month go i had antibiotics, but I can feel it starting to come back again now.

    even with surgery, it will still come back in a year or two. it's a complete pain in the @rse!

    the only thing I found that keeps it at bay is shaving the hair from my backside regularly, and hot, hot baths with a cup of salt added.

    It's not true that it always comes back, many people only have one occurrence and then go on to live normal lives after.

    A few unlucky people get reoccurrences, like myself, and I went on to have the cleft lift 7 months ago and am now doing amazingly, something I never ever thought would happen.
    natalieb wrote: »
    Thank you all :)

    Just went to A&E to be told there was a four hour wait - obviously I wasn't willing to wait that long as sitting/standing are both so excruciating.

    Does anyone know anything about the scarring after ops?

    On the website I linked to you before there are a few pics, some are of mine after the cleft lift.

    I'll be honest, there is scarring, but it's a small price to pay to get rid of this thing! And it's in an area where it won't really bother you.
    natalieb wrote: »
    One other thing to add - and I apologise for gory details - having been on antibiotics for about 48hours, some pus and blood has begun to ooze out although quite slowly. Am on painkillers so I can't really tell if the pain is lessening or not.

    Does anyone know if this is a good/bad sign?

    This means that the thing has come to a head, there is nowhere else for the pus to go so it's coming out through the skin, I don't think antibiotics will be of much use now as the infection has gone so far, the best thing to do is see a colorectal surgeon.
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    lucky74lucky74 Posts: 4,819
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    I suffered from this for almost 20 years on and off. Mine did keep coming back though i am sure it doesn't with everyone. In the end I had surgery a couple of years ago and i've had no trouble since. If you do have surgery you are in and out on the same day. In hindsight i wish i hadn't tried to cope with it for so long. :o

    With regard to scarring, yes you do end up with a scar but the size of it very much depends upon how large the affected area was and also which technique is used in surgery.
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    [Deleted User][Deleted User] Posts: 643
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    My brother had this condition many years ago, he called it Jeep Seat, it's never recurred thankfully.

    As someone already said, a scar is a small price to pay if it releaves the agony that you're in.
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    [Deleted User][Deleted User] Posts: 215
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    lucky74 wrote: »
    I suffered from this for almost 20 years on and off. Mine did keep coming back though i am sure it doesn't with everyone. In the end I had surgery a couple of years ago and i've had no trouble since. If you do have surgery you are in and out on the same day. In hindsight i wish i hadn't tried to cope with it for so long. :o

    With regard to scarring, yes you do end up with a scar but the size of it very much depends upon how large the affected area was and also which technique is used in surgery.

    I'm glad you had the surgery and hae had no problems since :)

    I think that people are really embarrassed about it, and think it's easier to live with than have the surgery, but as you said in and out in a day :)
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    player1player1 Posts: 2,518
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    Hi..I had this in my younger days..it was triggered by a fall at ice skating and was very painful so I sympathise. Unfortunately mine took three surgical attempts to sort out, only the third operation was leaving the wound open and packing it daily until it healed gradually from the inside out.
    This involved regular bathing in antispeptic, daily visits by the district nurse , 6 weeks or so off work ..so hopefully yours won't come to that.

    May be worth investing in a rubber ring too for sitting on :D
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    [Deleted User][Deleted User] Posts: 215
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    player1 wrote: »
    May be worth investing in a rubber ring too for sitting on :D

    I know you were probs joking when you said this but please please don't sit on a rubber ring it's one of the worst things you could do.

    Argos sell proper coccyx cushions, I could not have managed without mine!
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    [Deleted User][Deleted User] Posts: 1,291
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    Went back to a urgent care doctor today at A&E and he said that because it is now leaking, it won't require an operation and to just let the antibiotics do their job. Just hope this is correct and I am on the right path.
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