7 years never had an op, is it worth it!?!?

Discussion in 'Pilonidal Discussions - UK Forum' started by Larryb, Jul 25, 2017.

  1. Larryb

    Larryb New Member

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    Hi
    I've had pilonidal abscesses for about 7 years, I'm 28 year old female, I've never had it drained or had any sort of op, the first one I ever had my docs sent me to hospital but they said it had burst and everything had come out and they sent me on my way, from there on I've had them probably once every 6 months and until recently one every other month or so, normally before my period is due. They are always terrible, can't sit, sleep drive etc for about two days then they burst and loads of crap and blood comes out and I have immediate relief although always a little sore and go back two work. I try to aviod antibiotics unless I suppose my gut tells me to get some!! Seen a few doctors and spoke to a few on phone appointments and they have always just sort of said I'm managing it, it bursts by itself so in a way my bodies is doing what is supposed to and when I ask about an op they almost sway me against it because of the success rates being so low. But i am worried it's getting worse i have two small holes (sinus?) and always swell on the right hand side (I'm not sure if that's where it drains from) and my Doc did say I have a lot of scar tissue. Any advice? Is there anyone in the same situation as me!! Ideally I don't want to op because I'm scared And also I don't want to go through all that if it doesn't work because of healing time etc etc. And to be honest I can cope with this, I just don't want to do long term damage to my back or anything!! I wash i antibacterial body wash. Don't have baths (unless I have an abscess then bath in salt!) after showers I stick my bum in the air under the shower and really clean the area it's hair free, I use caster oil and salt water when I get one to drain it, and ice cubes to get the swelling down!! Sorry for the long boring story but I'm sure as you all know when your laying on you tummy or on your side in agony for days on end you have the time to write long story's!! Thanks in advance!!
     
  2. MJ1234

    MJ1234 New Member

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    I had a Cleft Lift surgery and whilst it got rid of the PS ( I think) ive been left with a wound that bleeds horribly every now and then and generally freaks me out/ looks weird/ makes it difficult to sit. I would only suggest having a surgery if you really really need it. TBH I found it easier putting up with the cyst but others will tell you to get the surgery. Its different for everyone. When I originally found out about it I had one doctor imeadielty suggest surgery and another say just live with it. The problem is that the cyst can apparently develop and become worse if untreated.
     
  3. Larryb

    Larryb New Member

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    thank you replying to me!! It's such a hard thing to decide i almost feel like I should just just live with it until the day it doesn't burst and then have the surgery if I need to rather than planning to have it when I don't know if I need it. Or paying to go with a private specialist which I can't afford to do and still it might not work :/ Like right now it's 3 days after it burst and I'm back to normal, slightly achy back but It looks clean, nothing more is coming out of it and I'm back to work as if nothing happend!! That's what makes me think I shouldn't have the surgery, to end up in a situation like yours or worse!! For the few days the it is terrible the rest of the time I wouldn't even know it was there!?! Tricky one!! And with most doctors telling me to leave it, although I'm sure sometimes I trust what there saying as the never really seem to know that much about it, not of them but with a couple of them I feel like I'm teaching them about it rather than them helping me!!!! Gggrrrr!!!! X
     
  4. MJ1234

    MJ1234 New Member

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    I had the operation because I had to keep taking time off work and thought it wouldn't be too much of a problem to sort out. How wrong I was. I've had 2 operations now - first was a Karayakis procedure second a cleft lift. The cyst reocurred and had made it's way further down the natal cleft so the cleft lift was more invasive than the Karayakis procedure. I don't know stories of people who've lived with it and if it's got worse or just disappeared altogether. I find mine reocurred from drinking alcohol mainly so have cut out drinking completely. I'm hoping this will subside soon I don't know as I've dealt with it for 3 years and still have problems from the surgery
     
  5. pilofighter

    pilofighter New Member

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    I would get the most minimally invasive thing I could that is likely to solve the problem. For you, definitely sounds like the trephine biopsy punch or epsit. I really regret my modified karydakis / cleft lift, even though by all accounts it was successful, did have some relatively serious complications for the first month or so though.

    I think you'll find that medicine is no different than other industries, the cleft lift is by far the most expensive procedure and doctors are not saints, and money, while not a primary consideration, surely helps rationalize a cleft lift.

    You'll find doctors who say a deep cleft is the cause, which I find utterly ridiculous. Yes lets hack up your God given body which itself is a problem. Absurd and self serving, and NOT true any more than having lungs is the cause of lung cancer from smoking. Let's cut out your lung instead of cut out only the cancer and tell you to not smoke, or in our case cut out only what is damaged and then tell you to exercise, have better hygiene, trim the area hair etc. You also get a lot of moms on the forum who would never want to think they did the wrong thing and therefore push it aggressively to everyone.

    I am now wondering whether it's possible to reverse my procedure, though I assume for the most part it isn't. It feels weird, looks mostly fine (can't tell unless cheeks spread), but I have serious dysmorphia with it, and anxiety because I have no basis for comparison whether it could be coming back, what any feelings or sensations might be etc, my "baseline" feeling has been altered. I'm hoping these thoughts goes away in time, there is a psychological component to this disease.

    Go to Rome and see Dr Basso, is what I would do. Or find someone who does the trephine/punch, or epsit. Cost to travel? Please, it's your health.

    I'm pretty annoyed with this forum generally, which is a cleft lift echo chamber. if it weren't for all the advice I read about the cleft lift being this godsend and for everyone, I might have just gone for the pit picking. Back then, it was simpler and yes I recognize I could have had a recurrence, maybe even likely. But so what? Just get another pit picking if needed, and if I made it this far the newer methods would have made it even better.

    MJ, I hear you man. Can you describe what was taken out etc from your karydakis, vs cleft lift? Size of wounds, pics if you have em? I assume it was modified karydakis? Why did you go for that vs cleft lift, do you know what the exact difference is/was? Still confuses me.
     
  6. MJ1234

    MJ1234 New Member

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    Hi P Fighter. The Karydakis removed the original cyst which was on the top of my left buttock. The procedure was like a fold that used my right (unaffected )buttock for the stitches. After 6 or so months the pilonidal suddenly re-appeared and swelled up the area. Went back to surgeon and he suggested the cleft lift as the pilonidal disease had spread down the rest of my buttock. I originally had the Karayakis as I thought it would just be a stitching job that only affected the left buttock. I didn't realise they stitch you to your unaffected other cheek. So the cleft lift was a result of this surgery failing. The scar goes from the top to about a quarter of my bum which has healed no problems. It's the area in my natal cleft which is the problem. I did seem to have this under control but recently took up cycling - kind of a way of saying f*** you PS but it's irritated the area. Have got back from doc's today with a course of antibiotics so will see how they do. I have been hugely depressed from this also man. It's hard
     
  7. Larryb

    Larryb New Member

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    God guys this all sounds shit and scary!!! I think for now I'm just going to try and reduce how many flare ups I have rather than go for any sort of op as the generall census that I can gather is that is basically unless your very lucky incurable!! So I'm going to stock up on vitamans and protien, try and cut shit out of my diet and reduce alcohol (tricky one ) and try a few of these home remedies like Manuka honey etc etc and see how I get on!!! What do I think?!! It's not fair but I suppose people have it worse!
    I say this now all positively as mine has burst this time and I'm feeling better hopefully il be saying the same in a few months!! fingers crossed!!! Hope your both getting better soon! Xx
     
  8. Larryb

    Larryb New Member

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    And also completely agree with the psychological aspect of this illness, not only is it really fucking embarrassing to have to explain to people who just don't understand, for me it also the sort of stigma that attached to it that you basically sit on your arse to much are hairy and unhealthy which for a 28 year old women is just not nice. I work my arse of, yes slightly over weight and do smoke but I'm phiscally quite active I like to eat healthy and all my hair is trimmed in the right places!!
    Then to add to that the unbarable pain during a flare up, the time off work, the conflicting advice you get off doctors and the gunk and blood that comes out of it, it really can get you down!!!!! I think there absolutely should be more research done into this illness, if they can cure some cancers and all the other amazing stuff that can be done surly this should be something that can be fixed, or at the least the advice given to you is solid and at best reassuring and to the point!!! Just my opinion!! But like I said people have it worse that's how I like to think about it!!
     
  9. MammaP

    MammaP New Member

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    Hi Larryb, personally I would put off surgery for as long as possible, once you create a wound, you create an environment for all sorts of shit to hop in and multiply. Just my thoughts! That said I have only ever had 2 flare ups and both 'flared down' super quick with very strong antibiotics. The second time it happened I was more prepared; I went to the local health food shop and got some super expensive but highly effective probiotics which I really do think helped my body cope with the insane amount of antibiotics I was taking. At the time of my first flare up my mental health was frankly, a bit shit. I was very low and having this shocking pain did nothing to help matters. After the second flare up I decided enough was enough and I went back to the health food shop and got some Passiflora and a B vitamin complex, I also found myself a therapist. I got hold of some baking soda and organic apple cider vinegar and my poor husband for the next 6 months was putting past on my bot every night! If nothing else it definitely kept the area clean!
    8 months later and having just been told my 2 sinus' have completely healed I am a different woman, I feel better inside and out. I am convinced that my body just didn't have the resources to fight the infections and that they were a warning sign to me that I wasn't well.
     
  10. Jatzcrackers

    Jatzcrackers New Member

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    Hi Newbie here..
    I had it done in 2002...first what seem'd like a tiny hole in backside, good good the pain of that Op scared me for life...the dressing changes killed me really, they forgot to give me gas / Pethadine as ordered..didn't help ! Now i seem to have like a split again , got someone to look at it for me they said its not a little hole like last time, more a tear?...so i added some barrier cream hoping to god its not another one some 14yrs later. Not sure i could do that OP again!!! , when i had mine he said he kept digging down as another tunnel was there :O.... it was a long recovery too sore sitting and dressing changes !! I couldn't believe a small tiny hole did all that, insane!!!!! I wish there was other treatments for them..... quicker. the person above with apple cider and soda very lucky it went?, I thought they have to actually get the hair out? so OP is the only way....... Anyhow just in case Mine is another one I signed up here. Praying though its just a tear and no a PC ........
     
  11. tommyboi

    tommyboi New Member

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    I've suffered with these and never had the operation, I had one and then went 10 years before I had another, the last one I had was about 2 years ago now and still going strong (touch wood) the way I see it if I can go 10 years between each time I get it then I would rather stick it out and not have the op as even that doesn't promise it won't come back, but if I do get it again for the 3rd time and it's way before the 10 years that it took last time before it come back then I may seek medical help, maybe just a conversation with my doctor and to get some tablets to relieve the swelling, as like I said the op can't promise anything, let's just hope mine doesn't come back but no doubt it will, let's just hope it isn't for another 8 years or so or never. :)
     
  12. Jatzcrackers

    Jatzcrackers New Member

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    Do you have to have the OP though?,does it go deeper and get infected, Mine turned out to be just some cracked skin there this week, Pheww!!! relief put the fear of god up me those things lol..My 2002 Op still has me traumatized the pain from it... Can they heal on their own???. I pray i never get one again, I Try not to put to much weight on the area also now!
     
  13. tommyboi

    tommyboi New Member

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    I am not sure if I have to get the op as I've never seen a doctor about my problem, I've spoke to him but only when I've not been suffering at the time with it, like I've mentioned to him that I get them, at the moment it's been just over 2 years since I had my last one, touching wood I never get one again or it's at least a 10 year wait until I do like the last one was, I guess I'll definitely get it again, it's just a matter of time, if I can go another 8 years without it then I'll be happy, that will make it 10 years to come back which is the time it took after my first one, then hopefully I'll get rid again and it will be another 10 years I can live with that, if that's the case with me I doubt I'll bother having the op as nothing is guaranteed with that, I just think if it does come back again I'll go to the doctors and get strong tablets which will hopefully make it go much much quicker and with less pain and hassle.
     
  14. bobbthebuilder

    bobbthebuilder New Member

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    Hello,
    Newbie here!!!
    I am 32 year old male suffering from pilonidal sinus from past 8-10 years. I have had three surgeries. Two from India, One from UK. The first one was from India when doctor left the wound open and it healed automatically. Then i moved to UK and after few years i started seeing more sinuses on different locations in the cheeks. Then i had an open surgery in UK again and that was nightmare as it dint heal for months and months so in 2014 i had to go back to India to a different surgeon who did Limberg flap technique. Everyone laughed at my Butt since then but it has been ok other than few issues such as when i run long distances ( as i am long distance runner) then i get tears and discharges so the doctor gave some medicine (ointment ad antibiotics) and it comes back to normal. But i cant really say that surgery has given me piece of mind as i shave very regularly and i have a standing desk at work, even without running i get problems here and there. Recently, this week i ran 10k again and i have a tear (i hope it is a tear and not another sinus). I am using the medication from the doctor in India and will keep you updated if it heels or if it is a sinus( i hope not) but you never know. My younger brother has had the same problem started exactly the same way on same age as i did but he fought it with some homeopathic medicine in India and cleaning the hairs and is healed now as he was with me for my Limberg flap surgery and also in the hospital and he definitely does not want to go for surgery after seeing how much pain i was in for being on my chest for 10-12 days continuously. We both are really fit and very active with no other health issues with no other family history of this problem. Not sure why this happened to us but there are worse things happening in the world and the way you guys are fighting with this gives me courage to deal with it!!! Happy to hear any suggestions other than less sitting and cleaning the araes to avoid this coming back.
     
  15. Jatzcrackers

    Jatzcrackers New Member

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    I guess 10 years like me is a good run, just wish I could heal it without an op, is so painful they better drug me up good next one,, or shove lignocaine in the wound lol
     
  16. Baker23

    Baker23 New Member

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    Hello, I'm new to this website.
    I am 23 year old female, I have a physical job I am a home child care provider. about 6 years ago I use to get a bruised feeling on my "tailbone" & ignored it and put it off. Since June I have suffered badly with PS, back and forward to the doctors, all they kept doing was prescribing me with antibiotics and telling me to bath in salt ect & nothing helped.. I kept getting different ones appear and I have hardly been to work, it's effected my life style. I finally went back to the doctors 3 weeks ago and they have referred me to a specialist at a private hospital, the specialist took one look at me and said you need surgery, I was freaking!! I asked him all the questions such as do I need this, can I live with it, his reply was you can but it will only get worse.
    So I am currently waiting for my surgery to go ahead next Friday, I am having a open wound. He said it needs to heal from the inside, out.
    Then I am having a nurse come to my home every day for so many weeks to unpack and repack.
    Reading these reviews it's made me very nervous.. I thought it would have put me at eas but the more I'm reading them the more I'm panicking..
    I feel if I don't give surgery a go then I can't say Iv tried, I feel like it's done nothing but effect my life socially, mentally.. it's just draining and depressing and I'm young and I don't want to feel like this!
    So I'm hoping I get the surgery done and recover my 8 weeks and I'll be free from all of this!
    If anyone has any advice they can give me.. or has had it done and been successful with this, please please pleaaaaase do reply back to me!
    Thankyou xx
     
  17. bobbthebuilder

    bobbthebuilder New Member

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    Hello, i can understand your situation but don’t worry there are so many people here with same problem so you aren’t alone. I had open wound surgery but it never healed so i had to go back to India to get it redone by limbergflap. Having said that, everyone is different and reacts differently to wounds so you may be fine. I am young healthy very active male so I couldn’t understand why it didnt heal, neither did the doctors. You have discussed the other surgery options with the doctor? Such as limbergflap etc as the healing process is quicker and i am feeling ok after limbergflap. Good luck with surgery and dont panic, it will be over and you wouldnt know.
     
  18. Baker23

    Baker23 New Member

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    The surgeon suggested open wound surgery, he thought it would be the best one for me.. I have no idea I just was agreeing and trusting what he's saying. There just seems to be so many bad reviews other than good & it's making me feel very anxious I wish I never started looking!
    Just want it all over & done with now, the longer I'm waiting the more I read up and freak myself out
     
  19. bobbthebuilder

    bobbthebuilder New Member

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    I think this is what they start with as the chances of reoccurrence are less with open wound surgery. If this procedure fails then they will try something different. But why be negative and you’ll be fine.It will be fine you can walk and do other things but no sitting until the wounds healed. Make sure you keep the area around wound hair free as you do not want any hairs to go in the wound. Keep reading and take the positive bits away. Aftercare is very important so read the section on this website. Good luck and keep in touch.
     
    Baker23 found this helpful.
  20. Baker23

    Baker23 New Member

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    Thankyou your reply has boosted my confidence a little bit which is what I need!
    How would you recommend the best way to keep the hair away front the wound, a nurse I know suggested hair removal cream?
    I will defenately respond back to you once Iv had my surgery and how I'm getting on with my recovery!
    X
     

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