I'm scared now

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I have had a 'lump' as described by people on these pages for over 2 years now (I'm 25 years old). Being a typical man I didn't go to the doctors until today. I have been told I have a PS. I figured that this thing could require surgery to remove it but having spoken to the doctor and read several web sites I am now really scared. I don't know if only people who are having extensive problems are posting comments or whether the success rate is as actually as low as it seems. Some sites quoted around 90% of ops didn't require further ops over a 5 year period, but practically everyone here has problems. Mine isn't quite as bad as a lot of peoples, my lump has never got any bigger than a small grape (unlike some tennis balls that have been decribed). I'm wondering what will happen if I just leave it. Does anyone know if it gets worse? Mine has been the same since it first appeared. From the comments of some people I get the feeling I'd be better off not having the operation. The pain bothers me for a day or two each month and other than that its okay. I simply can't afford several months off work. Does anyone have any comments? I'd greatly appreciate them.

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  • Posted

    Im a 28 year old female who has had PS since I was 14. it has sometimes been very painful, but I learned to deal with it for years and then when I found out about the option of surgery it just sounded like too much pain and disruption. It flares up about once or twice a year, during which time I avoid sitting for long periods and I puncture and drain it by squeezing. this usually works quite well for me. It did not occur for the last two years, my longest time ever. the dot faded to a barely visible mark and I thought it had finally gone away. I was using hair removal cream and working in a standing job during all this time. Sitting down always triggers it for me, especially leaning back while sitting on a hard surface. It has come again recently - boo! but I drained it and it seems to be healing. I hope this advice can be useful - try to avoid sitting back and keep the area clean and hair free. I still live in the hope that it can maybe disappear if I can avoid triggering it for a few years.
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  • Posted

    Hi Mark,

    I'm in a very similar situation to you. I'm 26 and I've had a small lump about the size of a 5p coin for about 6 years now - I had it removed once, but not one of about 6 doctors that I saw diagnosed it correctly! I was finally told what it actually was this morning. I too and a bit concerned about taking the 4-6 weeks off work, let alone trying to explain to people at work what the problem it!!

    I think I'll plan to have the op next year sometime, when I can arrange to work from home - sounds pretty painful though and a bit of a hassle!

    Mine flares up every few weeks (the doc suggested it's when I'm ill or stressed - I haven't really taken note) and it sometimes gets really painful. I've just grinned and bared it til now, but it would be nice to finally get rid of the little bugger!

    It's good to know that it's pretty common though, and that it can be treated, and that there's a chat room for people to share experiences of the 'little arse lump' as I've affectionately called it til now!

    Anyway, I shouldn't worry too much - I was advised if I don't have the op, one day it'll probably just blow up (as in swell, not explode), and then I'd have to go to A&E and have it removed anyway, but that'd be 10 times worse, so I think I'll definitely have the planned op!

    I'm quite relieved that I'm not a freak now! hehe

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  • Posted

    Hi Flandy,

    Sounds like our experiences are very similar. I too have been very tempted to try and live with it but fear that it'll just get really bad one day. I think I am left with no option but get the operation. I am getting it done at a private clinic that my doctor recommends. I have a consultation booked for Saturday (29th Sept) morning to have a chat with him and decide what type of operation will be the best for me. I guess it'll be the closed wound one (which will cost around £800 all in assuming there are no problems (touch wood)). I just have reservations about the cleanliness of NHS hospitals, it'll be a financial stretch but at the end of the day, I'm hoping it'll be worth it.

    I must admit I was a little panicked when I first started reading about this condition. However, over the last week or so I have calmed down a bit and am just wanting to get it over with now. My docor put me on antibiotocs and gave me some antibacterial cream. I was on this for a week and just as I was coming to the end of my antibiotics it flared up again. Seems that nothing other than surgery will make this problem go away. If I have healing problems / infection then I'll just have to deal with it at the time. I'm tempted to wait until next summer and time the surgery so at least I can watch Euro 2008 / the Olympics whilst I'm off work but don't want to wait that long. Also, i think it'll heal better during the Winter as it won't be as sweaty down there. Imagine trying to keep it dry and clean when its 30 degrees outside! Looks like we are going to have a couple of decades of monthly shaving of the bum with daily cleansing to try and stop this re-occuring post surgery.

    Well, all remains now is to get have the consultation and see what the surgeon says. Then I'll have to tell my boss that I'm going to be off work for a few weeks, and possibly months if a second op is needed (touch wood again). Not looking forward to that!!!!!!

    Anyway, I'll write again next week saying how things are. It seems very scary when you read peoples accounts, but keep in mind that the people who have successful sugery probably just want to get on with life and have no reason or motive to write into sites like these. Also, its a relatively simple operation, it could be alot worse. smile

    For more info this site is good.... www.pilonidal.org

    Mark.

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  • Posted

    I think it may be my posting which has put you off as I did have a tennis ball size on more than one occassion but this type of recurrance and severity is RARE. 90% is not a figure I would agree with and I have researched this condition for 4 years.

    I have had 5 surgerys but i have a cronic sinus which had developed cycts also. My case is RARE.

    I have three collegues who have had PS also and they made complete recoveries after their op.

    Its not an uncommon problem but no one wants to talk about it.

    If you are uncomfortable and it causes you pain go for the surgey, there is always a chance it will come back andthen again it may not, it also usually reduces the size even when it re-occurs.

    Alot of frustration comes as there have been no clinical studies into life quality for PS sufferes. Hence there is no real information for public consumtion on this issue and when you do find it, it tends to be because a person is having problems.

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  • Posted

    sad

    Hiya - I understand that you are worried about the op and taking time off work but I cannot stress how much you do not want it to develop into an abcess. I endured 5 days of pure agony back in April - went to my GP two days in a row when I could bare it no longer to be told it was piles both times. Pain got worse every day and going to the toilet was agony - I was crying out!! Couldnt eat, sleep. sit down or lie down, sounds dramatic but began to understand why people in pain kill themselves!! On day 5 after having another horrific night I went to hospital to be told it was a peri-anal abcess and it needed to be drained Had op that day and came out of hospital two days later (was only in for that long because they also detected a heart murmur which needed investigating). Id never been in hospital before and was terrified - after op wasnt pleasant but pain went immediately. Piece of advice - if possible and you are told its safe remove packing yourself - I did in bath and it was far easier!! My wound wasnt packed because I was told it was too small left to heal which I now think was a mistake. Recently been told by GP there is a sinus there and referred back to hospital, however no pain this time just pus - not pleasant but it wont kill me!! I was off work for two weeks after op - advised by surgeon to stay off three but in all honesty didnt need this. Only stayed off the two because Im an air hostess and thought chance of infection might have been higher in the dirty air in the aircraft and in strange hotel beds. If Id worked in an office I would have gone back sooner felt a bit of a fraud being off - nothing wrong with me really. Good luck in whatever you decide - I know what I would do tho.

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  • Posted

    Please dont worry generally people join these forums when they have had a problem and surgery is not working or they have had to live with it for a long time.

    I have two friends who had the op at the same time as me and both are perfectly well afterwards with no problems.

    As with every issue of this nature some people are unlucky (like me) and it does not heel.

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  • Posted

    Just thought I would post an update. Its been ages since my consultation, just been getting on with life whilst I sort things out. The surgeon said there were 8 pits and a wound of around 15cm in length is going to be required (ouch!). This will be stitched up and left to heal. My work Health Insurance policy is covering it to do it privately which is a relief as the estimate of £800 magically turned into a quote of £2100 plus the £150 I paid for the consultation (double ouch!). I was surprised about being covered as my policy only started on the day I had my consultation (coincidence) and I didn't think this would be covered, as officially its a pre-existing condition. However, it says in all the documents the pre-existing conditions are covered and I confirmed this on the phone. So don't assume anything when looking at health insurance.

    Anyway, I have let the company get on with sorting out the finances and just got on with stuff. November and December are really busy for me so I have opted for a January appoinment. I rang up yesterday to book a date and I was offered Monday 26th November, which was crazy quick, so I said no to that. I've provisionally booked in for January 8th and I am awaiting confirmation of this date. I just want to get through xmas first. Its not causing me too much discomfort at the moment (touch wood) as I am shaving it monthly and cleaning it with anti-bacterial soap three times a day (before work, after work, before bed). I highly recommend doing this regime as it really does help reduce the flare ups - it's also a lot easier if you have someone to shave the inside of your bum crack for you, its very awkward to do it on your own. My girlfriend has now seen parts of me I never thought she would, and I never will! (How would I cope without her I don't know as I am the sort of person to get panicked by these sort of things - see my first posting). If you don't have a partner then get someone else to do it, I know its embaressing but its worth it.

    When I told work they were really understanding and just said whatever time I need off I can have and not to worry about sick pay etc, all will be sorted. Feel like I have been very lucky with this. To avoid the embaressment of telling people about the puss leaking out of the top of my bum I tell most people (except my boss) that I am having surgery on the base of my spine to fix a back problem. Its just easier for me that way. Its not that I'm too embaressed but I don't want people asking me questions about it before and after the surgery. This way a can just blag it with my fake story.

    Anyway, we are all in this together and thanks for posting your comments. I will post an update when I have one. Don't stress if you have this condition, its scientifically proven to reduce your immune systems ability to cope with infection. So CHILL! Good luck everyone smile

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  • Posted

    Hi there people. Had my surgery on the 8th January. Excision with Primary Closure. Fortunately it was done in a private clinic thanks to my health insurance, not that the NHS is that bad but its nice to have your own room and plenty of experienced and pleasent staff around you. Anyway, I haven't suffered too much pain so far. I had the surgery done at around 11am, stayed overnight to recover and left the next morning at 10am. The drain they put in was a little nasty and annoying but that was removed before I left. Between leaving and today I have been taking it extremely easy, trying to make sure I do nothing to stress the wound and stitches. No bending, sitting, lying on my back, stretching or anything like that. That limited my daily activities to standing or lying on my side or front. If you have a loving partner who will help you get dressed and wait on you hand and foot, that helps too (thanks Cathy!). I am also making sure my diet is good to aid the healing process and boost my immune system to prevent infection. So lots of veg, fruit, whole grain foods, proteins and no fatty / greasy stuff. I have also been taking supplements like Vitamin A, C, E and Zinc. These all help too. As I've been quite good I haven't suffered much pain at all so far. Just a constant ache in the wound. The only other problems I had was an alergic reaction to the gel they use to attach the heart monitors with during the operation. It caused some blistering. I have also had a very sore throat but apparently that is normal when you have been given oxygen under general anaesthetic. It is slightly better today.

    I went back to the clinic today to have the stitches removed (6 days after op). The nurse said it was in very good shape and attributed that to being very careful with it. The deep sutures are still in and will eventually dissolve. For the next week or so I will need to cover the wound with a gauze to protect it and I will return to the clinic for a check up with the consultant on January 29th. I won't be returning to work until then. Fortunately my company have been very understanding on this matter.

    So for now I will continue to be careful, no sitting or driving for me. And if all is well, I will just be hoping it never returns (touch wood).

    I will provide an update after my check-up. Good luck everyone.

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  • Posted

    Hi Mark, im sorry to hear your news!

    Well i have had a PS for 4 and half years, i have had 4 operations to date!!

    The first, they just cut i suppose it was about the size of a 50p, but it was deep! packing hurt alot the first time, but if you get the pain killers JUST right, its not so bad! this operation didnt work, i went a year and a half with it healed on the top but it was infected inside, i ruined alot of my clothes!

    The 2nd operation was they cut about 4inchs long and 2inchs deep, but this time they cleaned it out and stitched it back up, if they ever offer that!! DONT DO IT!! all 8 stitchs got infected!! that was so painful having them taken out they had to do it over 2 days!! then i had to have the district nurses pack it daily at first then it went to every other day! i had that operation 18th April 2006! without going into too much gory details, i took my self back to hospital ( a different one, where i live i was on a border of 2 hospitals) and where the district nurses had done such a BAD job of looking after it, all the flesh inside had gone black where it had rotted! and NOT ONE of the nurse mentioned it to me! this donesnt happen over night!

    Then to my 3rd operation (8th may 2006, less than a month after the 2nd one!!)

    this time they decided to use a VAC PAC, a little machine- ok heres what it does, they place a piece of sponge into the wound, cover that over with bioclusiv, completely air tight, then they cut a small slit over the sponge and attatch a tubecover that over again with bio-clusiv. then that tube is linked to a machine that when turned on will suck all the gunk and bad stuff awaya dn also it brings the blood to that area to make it heal quicker!

    This was good, BUT was also the worst pain i have ever been through in my whole entire life!!!! when they first put it in, they put the sponge onto my flesh, after 3days when it came to change it, the sponge had fused with my wound, and to get it out, after agonising pain in the bath trying to pull it out myself, i then went back into the ward, laid on my bed and a nurse came over and i told her not to touch it, she grabbd hold of the sponge and ripped it out, i will be honest with you!! I WANTED TO POUND HER HEAD INTO THE FLOOR!!! but the pain was too much.

    I have never had to beg for anything, but i begged my partner to make them stop!! i think i cried for 3 hours after the ordeal!! not only had i been through her ripping that out, they then had to fit a new one!

    This operation \"SEEMED\" a sucess! they wound healed nicely, (different distric nurses)

    Then the end of July beggining of august i got that smell back again (that disgusting infected smell)

    i went to the doctors and he put me on a high dosage of anti-biotics, which didnt even touch it! and then on 22nd september 2007, this is an amusing on(after all i had been throgh so far!!)

    I went back to my doctors, he rang the hopital whilst i sat in his office and put me through as an emergancy, 2 hours later i was at the hopital waiting to be seen by the on call surgeons, we waited, He then showed up, took a look, and said \" well there is a hole there (this hole was a size of a pin head) and the infection has come out of that, now you have 2 choices, 1-you can have Local annesthitc adn we will pack that hole and you can go home, OR 2- we can take you to theatre give you general anesthetic, open that hole a little, clean it out and the pack it while your under\" i chose option 2!!

    i came round from the operation, in AGONY!! the wound i had was 7 inchs long and 4 and half inchs deep, my nurse said that if it was another inch deeper you would see my spine! (pretty good i chose option 2 hey!!!)

    This has taken nearly 5months to heal!

    BUT THIS ISNT THE END!! lol sorry if your still reading!!

    Todays date is 22nd january 2008, i received my letter today with my NEXT operation date! YUP you guessed it, after vutting all that it still hasnt got rid of the problem!

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  • Posted

    Hi all

    I've just had my 3rd op, my advise is get it sorted, yes it's painful and a hassle but the consequneses of not having done are fare worse as it's very close to the spinal cord and any infection in this area is dangerous. I was about 22 when it first occured and it started as a big lump, I thought it was some sort of boil, my GP sent me straight to A&E and I was laid up for about 8 weeks with daily visists from the nurse, second time they game me stitches, although I recovered much quicker there is a good chance this won't get rid of it. It came back again last year and the consultant has now told me he hopes he's sorted the problem. It's embarassing more than anything else but I have discovered its really common, as I am writing this I am still recovering and will ne seeing the nurses every day for the foreseable future, I really hope this is the last time though, my advise the original post is not to be scared, you will be okay, just get it sorted, don;t let it get worse bacause it will!

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  • Posted

    I would suggest that if it isn,t bothering you too much then leave it alone.

    My 16 yr old son had a lump that was very small, it became infected but after 2 months of antibiotics, infection went and the lump was practically gone. The surgeon still wanted to cut & we believed him. (why wouldn,t we?) thinking he had my sons best interest at heart.

    He ended up cutting much deeper than he explained to us. This was last October. We are still packing his wound to this day and a couple of weeks ago, another hole opened up.

    The surgeon & his collegue are advising further surgery.

    My son has been in deep depression for months now & he is trying to finish his Senior years in High School so he can graduate.

    We are not opting for any more surgery at this stage & are just trying to deal with the situation one week at a time. I beleive that his initial surgery wasn,t really warranted as there was no infection, pain & the lump was minor.

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  • Posted

    I would not advise anyone to leave these things as the lump you see on the outside does not give you a true indication as to how big/deep the abcess is if this poisen cannot escape through the skins surface it can make little channels through your body joining things that aren't supposed to be joined! causing you hell of a lot more problems in the long term. Antibiotics will not clear the infection as they do not penetrate the walls of the abcess because they are so thick. Listen to the surgeons they know what they are talking about. Ask for an mri scan of the pelvis so you can see the extent of the problems on the inside. Please dont leave things to get worse smile
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  • Posted

    [quote:6e1d8e8be5=\"Kirsty1984\"]Hi Mark, im sorry to hear your news!

    Well i have had a PS for 4 and half years, i have had 4 operations to date!!

    The first, they just cut i suppose it was about the size of a 50p, but it was deep! packing hurt alot the first time, but if you get the pain killers JUST right, its not so bad! this operation didnt work, i went a year and a half with it healed on the top but it was infected inside, i ruined alot of my clothes!

    The 2nd operation was they cut about 4inchs long and 2inchs deep, but this time they cleaned it out and stitched it back up, if they ever offer that!! DONT DO IT!! all 8 stitchs got infected!! that was so painful having them taken out they had to do it over 2 days!! then i had to have the district nurses pack it daily at first then it went to every other day! i had that operation 18th April 2006! without going into too much gory details, i took my self back to hospital ( a different one, where i live i was on a border of 2 hospitals) and where the district nurses had done such a BAD job of looking after it, all the flesh inside had gone black where it had rotted! and NOT ONE of the nurse mentioned it to me! this donesnt happen over night!

    Then to my 3rd operation (8th may 2006, less than a month after the 2nd one!!)

    this time they decided to use a VAC PAC, a little machine- ok heres what it does, they place a piece of sponge into the wound, cover that over with bioclusiv, completely air tight, then they cut a small slit over the sponge and attatch a tubecover that over again with bio-clusiv. then that tube is linked to a machine that when turned on will suck all the gunk and bad stuff awaya dn also it brings the blood to that area to make it heal quicker!

    This was good, BUT was also the worst pain i have ever been through in my whole entire life!!!! when they first put it in, they put the sponge onto my flesh, after 3days when it came to change it, the sponge had fused with my wound, and to get it out, after agonising pain in the bath trying to pull it out myself, i then went back into the ward, laid on my bed and a nurse came over and i told her not to touch it, she grabbd hold of the sponge and ripped it out, i will be honest with you!! I WANTED TO POUND HER HEAD INTO THE FLOOR!!! but the pain was too much.

    I have never had to beg for anything, but i begged my partner to make them stop!! i think i cried for 3 hours after the ordeal!! not only had i been through her ripping that out, they then had to fit a new one!

    This operation \"SEEMED\" a sucess! they wound healed nicely, (different distric nurses)

    Then the end of July beggining of august i got that smell back again (that disgusting infected smell)

    i went to the doctors and he put me on a high dosage of anti-biotics, which didnt even touch it! and then on 22nd september 2007, this is an amusing on(after all i had been throgh so far!!)

    I went back to my doctors, he rang the hopital whilst i sat in his office and put me through as an emergancy, 2 hours later i was at the hopital waiting to be seen by the on call surgeons, we waited, He then showed up, took a look, and said \" well there is a hole there (this hole was a size of a pin head) and the infection has come out of that, now you have 2 choices, 1-you can have Local annesthitc adn we will pack that hole and you can go home, OR 2- we can take you to theatre give you general anesthetic, open that hole a little, clean it out and the pack it while your under\" i chose option 2!!

    i came round from the operation, in AGONY!! the wound i had was 7 inchs long and 4 and half inchs deep, my nurse said that if it was another inch deeper you would see my spine! (pretty good i chose option 2 hey!!!)

    This has taken nearly 5months to heal!

    BUT THIS ISNT THE END!! lol sorry if your still reading!!

    Todays date is 22nd january 2008, i received my letter today with my NEXT operation date! YUP you guessed it, after vutting all that it st

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  • Posted

    Hi Kirsty,

    My name is paul, and i know what you are going through and its not nice, i had my first one in Jan 08 when i got a small flare up, but i had been having these \"small\" flare ups for years thought maybe i had banged my tailbone years ago and now it was playing up. But then it got so bad that i could'nt walk and went to the doctors who said it was PS and sent me home with a couple of boxes of anti-biotics, but the infection had got so bad that i had to go for an operation 2 days later you know the one where they \"core\" you out like an apple. That was fine untill they told me that a nurse would be coming to unpack and re-pack the wound for about 3-4 weeks, now for a girl if it was Mr hansome Clooney that would be brilliant but i got Hattey jakes you know the nurse out of the carry on films. I was off work for 12 weeks with it and thought it was gone, went back to work and two weeks later it came back, apparently the my surgery has'nt healed over and i had a constent flow of posion so guess what they suggested ????? yep a \" Hollywood\" dont even ask me if it was sore, but hey it worked been on the mend now for 4 weeks everything is healing well, hope you get on the mend soon x

    Regards Paul.

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