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I'm horrified at pilonidal cyst

Posted , 7 users are following.

groovynana
groovynana

I've only recently discovered my youngest son has a pilonidal cyst. I had three brothers and 3 sons and did not know anything about this.

My son has mild/moderate autism and quite a high pain threshold and he wasn't aware about it.

I believe he must have had it a few weeks before I discovered what was causing this strange smell.

It's looks quite nasty and he's very embarrassed but allowed my to inspect and clean the wound.

It had hairs, fluff and other debris inside it,

The doctor gave him a course of antibiotics and instructions on how to clean and pack it which is better than going to outpatients every day.

I believe the odour on discovering it was from the burst cyst and in the last couple of days it's filled up and just burst again.

Today I've noticed that about 10mm above the the hole he has the beginnings of another 2 holes opening up.

At first they just looked like 2 enlarged pores but they are getting bigger.

I'm so sad for my boy, he's such a beautiful kind and undemanding teenager, a pleasure yet he now has this awful condition.

I'm worried it's going to get bigger and not heal

1 like, 27 replies

27 Replies

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  • gill09
    gill09 groovynana

    Posted

    Feel so sorry for you and your son. This is a really horrid problem. My son has been suffering from the age of 18-23 yrs old. We definitely neglected it when we should have pushed to get it sorted. So I think def don't leave it, they can sometimes keep re infecting. Hope u get on ok. All the best.
    • groovynana
      groovynana gill09

      Posted

      Thank you for your reply 2gill09, I can't believe these cysts existed yet I had never heard of them, I've found out they are quite common.

      Thanks only blessing is my son can't really feel much pain as I've heard for some they are incredibly painful.

      I think I've taken the fact it's there a lot worse than him, he said he'll just have to deal with it.

      I'm quite manic about keeping it clean and probably getting on his nerves but I'm worried it might get bigger

      The nurse said in all probability it will so he has a long way to go yet.

      She also said it will probably recur. Poor lad.

      Has your son's recurred if you don't mind me asking, the doctor told me to just keep it clean and packed as there isn't anything else he can do unless he gets a bacterial infection.

      They are checking it every week.

      Thanks

    • gill09
      gill09 groovynana

      Posted

      I know, it's not widely spoken about yet really quite common. My son's recurred several times and he has had three ops. The last has hopefully been successful altho still not out of the woods yet. I've been cleaning and packing this wound which is def better, I'm really careful and clean etc. The surgeon we saw this time has hopefully completely cleaned it out.
  • humayun15188
    humayun15188 groovynana

    Posted

    Hi my name is jaji I am 22 years old I was suffering from pilondal sinus for the last three  years I was in the same condition like u r son every day I used to go gp bit they can't do something they just give antibiotics which is not helping I had 3 operations so far but now I am very well I had last appointment with the surgen he discharge me from hospital my best advice is that tell u r gb to referred u r son to hospital coz thsi pilondal is normally comes  in young age so antibiotics not helping it is very bad illnes very smelly discharge is coming out from the hole it happend from the hair tell and also wen u sit in a hard chair or driving aswell so don't worry he will be fine if u see the surgen early stage 
    • groovynana
      groovynana humayun15188

      Posted

      Hello humyanun and that you for your advice.

      My GP has advised to keep it clean, I've been shown how to pack it and he's been prescribed antibacterial cleaning solution and I've also bought lots of over the counter solutions. I've found that dry antiseptic spray Povodine with Iodine has helped a lot.

      At the moment it's clean and no infection however It burst again and I can feel it's filling up again just above the dimple cleft.

      As it's his first cyst I'm not really sure what to expect but I do believe it might be a little bit smaller in depth...I've bought a bright torch so I can see exactly what's happening. Thankfully my son is handling it very well and his embarrassment is less and less as the days go on.

    • gill09
      gill09 groovynana

      Posted

      Good luck with your son, you have my sympathies as my son has been dealing with this for 5 yrs. At this point I would def say don't neglect any signs that it is spreading as they can sometime spread way under surface that you can see. My GP was great but generally we had to really fight for help. The latest op discovered more sinuses that had been growing without our knowledge . My son was very unlucky so im not trying to be a scaremonger, just feel like I wished we shouted louder about it earlier! All the best. I use a head torch, invaluable as both hands are free!
    • groovynana
      groovynana gill09

      Posted

      Hi again Gill

      It's taken me all week to actually get my head around this cyst.

      Probably because I didn't know this condition even excited.

      Yes I though my GP was quite laid back about it.

      He goes back on Friday to see the nurse and I'm going to ask for him to be referred to a specialist.

      The thought of him living with this for years really upsets me.

      I'm dealing with it but my son is dealing with it a lot better.

      The more I read and look into other people's stories and how many surgeries they've had fills me with dread.

      Thankfully he's not in pain.

      Thanks again

      I'll update after Friday.

      ps from reading about your son it hasn't been easy for you all.

    • gill09
      gill09 groovynana

      Posted

      Hi there. i really do feel for you as i felt exactly the same. I hope you don't think i'm scare mongering, i just really wish i had been more pushy and pro-active from the start but when you haven't heard of it, its hard to see what problems it could cause. Actually even when i googled it, i still was in denial a bit i think. The surgeon he has been under this time has been amazing. He said from the start that being clean and infection free is paramount but also that whilst there is a sinus under the skin it will never heal. I cleaned it daily from July to September, then used the antibiotic cream he gave me and put a breathable dressing on it. (We had previously used dressings that allowed no seepage so my son didnt continually mark his clothes, at worst he had previously had to use a sanitary pad at the back of his boxers) The wound was able to breathe and the infection went, leaving it healthier for his op. I have learnt a lot in the last couple of months, im doing the daily care and am very aware of any changes good or bad. We have everything crossed!!  i wish you all the best

    • groovynana
      groovynana gill09

      Posted

      Hi Gill

      I'm so pleased I posted on this site and please rest assured your not scaremongering me. Your advice has been fabulous and it's all from your experience which I very much appreciate.

      Thanks again

      Carol

    • rnarang
      rnarang gill09

      Posted

      hi...

      I had the same problem and got operated. 10 days back.. stitches were applied.. and doc covered it with flap of skin.. I have pain , so is it because it's fresh operation and with time it will be fine? or pain should not be there at all.. as when doc touched no pain.. but sometimes I feel as some pressure is there ,as there is small opening due to suction pump pipe.. he said it will heal in ten days and will be covered.

      I read many doc keep it open and with dressing let new skin come.. but in my case during operation he checked and said we don't require to keep it open. so he applied stitches with flap covering and all...

      so any thing which can be suggested or added?

      thanks

      Ruchika

    • groovynana
      groovynana rnarang

      Posted

      Hi there, I've heard the suction is supposed to be very good in both recovery and recurrences. I'm sure others who have had it will advise you, I'm sorry I can't be if any help as my son hasn't had to have an operation for his cyst.

      It did look as if it was going to flare up again but in these last few weeks the sinus has completely closed and I'm just keeping it clean with sterile solution....I think savlon povodine and iodine spray has helped imensly, it kept his open wound free from recycled infection from debris etc and I believe helped close it up.

      I'm living in hope it doesn't return....that's all I can do for now...good luck in your recovery....from knowing nothing about or even knowing if their existence my son and I have gained much knowledge and advise from this site...I'm so pleased I posted...

  • groovynana
    groovynana

    Posted

    Hi all

    My son's cyst has become a lot smaller in the last week but I think it's filling up again.

    I noticed redness about 15cm above his coxis and felt lumps.

    It's both sides of his cheeks and I can actually feel 2 chanel. ...

    Back to see the doctor on Tuesday although I'm delighted with the wound he may need antibiotics and were waiting for him to be refered to a specialist.

    I can only live in hope for now

    • gill09
      gill09 groovynana

      Posted

      Poor boy and poor you. That does sound like it cd be filling up again. These are a nightmare. Good that you are going to see a specialist. Shame you aren't near London, the surgeon my son had was really brilliant. All the best
  • groovynana
    groovynana

    Posted

    Hello again.

    Just updating as to where my son is in the healing process, happily his wound is no longer big enough to pack and only a very small hole.

    We no longer need to see the nurse and up to now it is infection free.

    I think it may return, I can see now where the chanel are a few weeks ago.

    They aren't very deep in his buttocks but he does have 2 small holes in the cleft which might be ingrowing hairs.

    For now though we're happy with his progress.

    😊

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