Pilonidal sinus

LegacyUser · 04-09-2007 11:30am #1

Just wondering how long people had pilonidal sinus for and how is they cope?

GetOffMyPatch · 04-09-2007 5:40pm

You need an operation and dressings for a month
Should be ok after that

LegacyUser · 05-09-2007 2:22pm

I have now had pilonidal for 4 yrs, 2 op's and no improvement
and begining to get me really down, have to get my mam to dress wound
everyday and its really getting me down.

easyontheeye · 14-09-2007 8:43pm

hi,

i had one about a month till i went to the A&E as the pain was unbearable. The doc operated straight away as the cavity was so deep and poison filled. i had about 2 weeks of dressings after that. how come they cant remove it or sort it out?

LegacyUser · 23-09-2007 4:11pm

Its being about 4 yrs now since I 1st got PS and the doc's operated 3 times and nothing is changing.....still being dressed everyday....

LegacyUser · 12-03-2008 10:55pm

Hello my names is Ian
I'm a 43 year old man who has had pilonidal sinus disease for the past 3 years i'v had two operations to remove it the first operation involved opening the cyst up along the midline of the cleft between my buttocks removing and draining the cyst area and closing the wound. i had the stiches removed 14 days later and was symptom free for 8 months. The second operation occured 14 months after the first and was similar only this time the wound which was 8cm long and almost 4 deep the surgon miz carton said it was to that date the depest she had removed. The wound was left open (not stitched back up )and packed with a dressing called caltastat wicks to stop the wound from healing over. This dressing had to be changed daily in my case at the dressing clinic in Louth county hospital which has fantastic staff. I spent from 29 may 2007 til the september going daily to get the dressing changed and finaly on the 24th of october the doctors decided to stop dressing it compleetly and let it close. It's now march the 12th 2008 and my symptoms are back tomorrow i have a appoimtment in Louth county Hospital Dundalk to see the surgoen again.
Most people are luckey the first operation is sucessfull and only 10% need reaccuring surgery hopefully your one of the 90%if you have the disease. if anyone needs to talk to me mail me at <snip> if my experiance can help or if you just need to talk to someone who's had the disease mail me

tbh · 13-03-2008 8:33am

Hi Ian,

it's boards policy that users cannot post personal details like email addresses. Can I suggest you create an account, and you can invite people to PM (private message) you. Hope your appointment goes well.

mishno5 · 04-04-2008 9:17am

My son has had this problem since he was 13, 10 years now. He's had 15 operations, one being plastic surgery, which they did to cover the problem up cuz it wasn't healing. Now everything has turned yukking inside. The consultant said where normal sinuses are a bout 2 to 3 inches in length my son's in about 10 and the bigges he's ever seen. There are tracks running from it leading to his spine, they are talking about removing the tip of his spine cuz of it. At one point they thought he had a track running to his bowels, but they are fine. The only thing that is infected there is the tube running from his bowels to exit waste from his body this is infected and the smell is just terrible.
Some people are very luck and heal quit quick but my lad has been told he'll have this forever.
If anyone thinks they have this problem please get it seen to right away, you can't mess around with this condidtion.

phelixoflaherty · 03-06-2008 10:59pm

I had that a few years back. It was like a huge spot on the cleft of my ass, and growing. Eventually it was so painful I could hardly sit down. One day while reading on my bed it suddenly burst and what came out was the vilest stuff I've ever smelled. Went to Doc, put me on Antibiotics. It cleared up. He explained that crude cure for it. Didn't fancy that. It reappeared after a few months and went the antibiotic route again. Started to reappear a third time, and was at a party one w/end and had a lot of Gin and Tonic. The lump on my ass disappeared. Could be chance but hasn't come back.
It's quite common in young men, I think cycling can aggravate it.
Good hygiene in that area is essential with antiseptic stuff like teatree oil etc.
All the best

niallon · 16-06-2008 1:32pm

I am currently recovering from removal of a pilonidal sinus which was located just at my waistline at the back. I believe from what I've read online that I am very fortunate with the location but it is still wuite a large cavity it has left.

The best summary I can give the procedure is awkward. I was operated on last Monday and still have yet to feel an iota of pain. The problem is keeping the wound clean afters. Obviously it's dressed etc but trying to keep a bandage on in the one spot of your body that you move even if you don't mean to day in day out.

Some of the posts I've read above show that it can definitely vary in extremity and I wish the best to all sufferers listed above who seem to have cases of it recurring etc. but for any of you noticing a pilonidal for the first time now and so who more than likely only have a benign case, get it sorted now, don't dwell. Even I tried to ignore it for the first few months thinking it was just bruising or something but due to the nature and location it is the kind of thing that can only get worse.

Twinkle84 · 07-07-2008 6:20pm

I have now had 2 operations for this, currently recovering from the 2nd one which was done in February 2008, was nearly healed but has now opened up again, feel like its never get close. Anyway when I had the first operation it was suggested that I have some sort of Laser Hair removal in the area which should help to stop it from happening again. I never got round to it the first time, was just wondering if anyone has had this done and does it help?

Thanks

niallon · 08-07-2008 11:55pm

No but I'd definitely be considering it now, it seems that this week, when the wound looks to have mere days left to heal, a hair has worked it's way into it and now I'm back to square one again by the looks of things! Arg!!!

pookie82 · 11-07-2008 11:30pm

Laser hair removal is extreme but worth a shot. Anything to prevent it coming back. But until you can afford/get that procedure, use veet hair removal cream on the scar (not on an open wound but on the healed wound to prevent it growing back in) on a regular basis. That should stop the hairs in their tracks.

pookie82 · 11-07-2008 11:31pm

niallon wrote: »

No but I'd definitely be considering it now, it seems that this week, when the wound looks to have mere days left to heal, a hair has worked it's way into it and now I'm back to square one again by the looks of things! Arg!!!

Is there no way to work it back out before it starts the damage??? I really feel for you - been there :mad:

LegacyUser · 14-07-2008 11:30am

~I am just out of hospital with one. had it about a week and just kept feeling worse with it. went to a & e and they operated. just got out saturday. definately worth going to hospital for as even only 2 days after operation it feels much better like big pressure is gone.

i was at two gps that gave me antibiotics, the second lot of antibiotics cost me 70 euro and i only ended up using one days worth, does anyone know if there is any way of recovering that cost because i have spent 200 euro seeing gps in the last week and thats not including the hospital costs i will be getting. and i never even used the antibiotics.
was a total waste of 70 euro especially when you cant afford it.

metoyou · 14-07-2008 10:08pm

Hey!!

I had my surgery at the end of April, after months of keeping it quiet!
I eventually did some research and freaked myself out enough to go see a doctor and got diagnosed straight away!
Got referred to a surgeon who has a high success rate so i was instantly happy with that! He said we caught it early enough which i was suprised at seeming i kept it quiet for so long!

Anyway, had surgery(on my birthday too) put a downer on things!!!
Was left to heal as an open wound.
It was just at the base of my back, not to far down, basically where tail bone is located.
Got dressings off the local public health nurses everyday for 7 weeks!
Was fairly deep too!
Went back to my surgeon for a check up and everything was great he said!
Just the usual, be careful and keep it clean etc!
Still needed dressings, but wasnt much packing!

The week later, 8 weeks after surgey, everything was grand, nurse came after leaving me for a week, and said she was discharging me, great of course!
Anyway two weeks later, now its week 10, over the last week or so its become really sore, like the sore you get when you forget youve had surgery and you go and sit on it by accident, and thats not good!
So im back on the difine to stop the pain but its not helping!

And to make matters worse it seems that the scar is re-opening or something cause theres a very faint hole appearing at the top of it!
After a frantic call this morning to public health nurse, she ll be calling out tomorrow to check up!

I hope to god she doesnt refer me to surgeon!
I dont think i can take the news of having to have more surgery.
Out of work for 4 weeks, not being able to do anything except lie on your side or front!
Not the kind of life you want at 19, or any age for that matter!

Fingers crossed

pookie82 · 15-07-2008 11:16pm

metoyou wrote: »

Hey!!

I had my surgery at the end of April, after months of keeping it quiet!
I eventually did some research and freaked myself out enough to go see a doctor and got diagnosed straight away!
Got referred to a surgeon who has a high success rate so i was instantly happy with that! He said we caught it early enough which i was suprised at seeming i kept it quiet for so long!

Anyway, had surgery(on my birthday too) put a downer on things!!!
Was left to heal as an open wound.
It was just at the base of my back, not to far down, basically where tail bone is located.
Got dressings off the local public health nurses everyday for 7 weeks!
Was fairly deep too!
Went back to my surgeon for a check up and everything was great he said!
Just the usual, be careful and keep it clean etc!
Still needed dressings, but wasnt much packing!

The week later, 8 weeks after surgey, everything was grand, nurse came after leaving me for a week, and said she was discharging me, great of course!
Anyway two weeks later, now its week 10, over the last week or so its become really sore, like the sore you get when you forget youve had surgery and you go and sit on it by accident, and thats not good!
So im back on the difine to stop the pain but its not helping!

And to make matters worse it seems that the scar is re-opening or something cause theres a very faint hole appearing at the top of it!
After a frantic call this morning to public health nurse, she ll be calling out tomorrow to check up!

I hope to god she doesnt refer me to surgeon!
I dont think i can take the news of having to have more surgery.
Out of work for 4 weeks, not being able to do anything except lie on your side or front!
Not the kind of life you want at 19, or any age for that matter!

Fingers crossed

Hey, how did you get on? I hope the news was good.

I suffered with this from age 15 to 18 and had five operations. I'm told I was a rarity though, to have to have so many. But they're a bitch for re-ocurring and it doesn't seem to matter how many procautions you take or what you do. I waited months at a time agonisingly waiting for each surgery to heal up, only to find a few weeks after it closed that it would re-open adn start again and back to square one. For some reason all looked well right up until the final stages and then bam, in the last crucial week it would decide it was still infected and start again. It was very emotionally and physically draining and I spent years trying to get rid of it. In the end it was so deep my surgeon had to sttich it back up layer by layer. But the last round worked, and it was stiched closed (usually the most successful surgeries are those left open but that didn't work for me, and the healing time is much slower).

I really hope it's not back to square one for you.

metoyou · 16-07-2008 11:38pm

Hey pookie82

My nurse called in yesterday to have a look and she even said it was bad that it had reopened!
Asked is she could tell if it was infected at all but cause it was so small she couldnt be sure!
Was packed and dressed and sent on my way!

But last night... my god... everything was ok, no pain.. nada!
But Then got up this morning for my daily (and annoying!) salt bath and what do you no, wound.......TOTALLY reopened!

Anyway nurse was due to call back in and she did, and she said, thankfully, that it didnt look infected!
But its back to dressings over the next while

Damn and id just started getting back into my run of life again!

She had even said it was all too good to be true!
Cause id seen so many different nurses from the health centre, but she was my main one, that they all went back to her if i was healing good!
They all had said that i healed so quick it was unbelievable!
Looks like towards the end it just did a big jump and quickly formed new cells but didnt form completely and looked like it ended up healing outside in instead off inside out!

Shes back tomorrow and friday, and we ll see how things are friday, if im still in pain, i wasnt today!, then ive to get antibiotics or if im any worse ive to make an emergency appointment to see surgeon

What you said there about stitching it up by layer... may be a good suggestion if the need ever arises again.. hopefully not!
I want rid of this once, now twice, and for all!

It is totally emotionally and physically draining, i dont know how you coped with having to go through so many surgeries!

I feel for those who, if any are reading this and just found out you have it, its an awful annoyance but unfortunatly its got to be lived with!

pookie82 · 17-07-2008 1:16am

God that sounds so familiar!!! (Don't panic though, not as in it happened to me five times!) I just mean that when the wound is left open towards the end it kind of "rushes" to close itself before it's totally healed inside and what happened to you is the result of that - it hasn't filled in underneath and the skin reopens. But if it doesn't look re-infected then it may just be that it re-opened itself in order to heal properly. The reason that these wounds are packed with dressings for so long is that, left to its natural devices, your body would try to close up a huge open wound as soon as possible. So it would try to seal the opening and keep underneath clear of infection. Which makes sense UNLESS underneath was infected in the first place and needs to have the air get at it to clear up.

Towards the end of the healing process in particular it tends to "rush" closed and I think this is normal. Mine took a long long time to close but then towards the end it rushed closed in a hurry. Rapid healing time, while the most convient for the patient, can mean that it has a likelyhood of recurring.

But if your isn't giving you pain it sounds good. Did the pain stop when it reopened? Maybe your pain was a sign it had closed too quickly and now that it's open again the pressure is off. I really hope that it goes well. Don't worry, chances are you won't be as unlucky as me! Even if it does take a few more weeks it'l be worth it to be rid.

If you ever need anything (advice or to talk) always feel free to pm me. I'm not a medical doc but I know all there is to know about this unfortunately!!!! Good luck :-)

metoyou · 17-07-2008 11:46pm

yep pain stopped, well the major pain stopped anyway, when it reopened!

yea been talking to family and nurses bout it, and basically what you said is what happened, rushed to heal at end but didnt heal properly and the bam back again!

yea if it takes a few weeks to rid of it once and for all itll be worth it in a way!

thanks for your help!
Ha, Maybe you should look into working for this yourself!
God knows you`ve enough experience!!!
Thanks!
Good luck to you too!

mishno5 · 28-07-2008 4:20pm

Well my son is going into hospital on the 3rd aug for his 19th operation. This is the big op, he's infected that bad that there are tracks running into his spine so next week he may have to have his coxics removed.
Although they are doing something to try and heal it which they don't generally do, they are putting in a hoover dressing. Don't know how he's going to get on with this but if anyone wants information just let me know.

metoyou · 28-07-2008 6:25pm

NINETEEN????

my god, that is soooo bad!
sounds nasty what he is having done.
Hope everything runs smoothly!

Im back in with my surgeon wednesday morning to find out why this is gone in reverse instead of forward!

Best of luck with that.

Supercell · 28-07-2008 7:32pm

I had this when I was about 16.
Went into my GP because I thought I had a boil at the base of my spine and it was really painful , she referred me to a specialist in Dun Laoghaire hospital who admitted me there and then and had the op the next day.

Didn't have to get daily dressing but they put this sucker thing with a kind of billows over the wound and stitched my cheeks together.

After a week in hospital they removed the sucker thing and dressed the wound and gave me laxatives and told me to drink plenty of fluids and try not to stain when on the toilet.
They did tell me there was a pretty high risk of reoccurance but it never did, seems though the proceedure I had differers from others here?, the doc did tell me that it was a new proceedure at the time (about 20 years ago now) but surely that wouldnt be the case now.
Maybe i was just lucky they caught it early enough to remove all traces?

pookie82 · 28-07-2008 11:20pm

Some people just seem to be lucky with it Supercell and others not so lucky.... A good mate of mine who had been really good to me all through my years of surgery ended up getting it herself a few years later. The poor girl was terrified after seeing what I went through but thankfully she only needed one operation and was back to normal in about a month. It never reared it's ugly head again for her.

Mishno5 I really feel for your son that's awful. By the time I was having my last operation they had to go so deep that there was a chance I'd be left paralysed or incontinent - luckily neither happened and they didn't warn me beforehand (only my parents) so i didn't freak out. I can't imagine what it must be like to go through all that 19 times and still not have a recovery. Tbh honest most get rid of it in one go, max two - but there are a few people who it seems to effect really badly and the doctors are baffled as to how to stop it.

Metoyou - I hope it's going well for you and hasn't deteriorated too much! Let us know how you get on :-)

MagicMarker · 28-07-2008 11:35pm

Jebus!!!

I've had one of these for years now, it started when i got an office job, coinciding with when i first started driving, sitting down all day. I've always known what it was by looking it up online. Reading other peoples stories it was quite clear that i really don't have it that bad, generally it's painless except maybe a few days every month or two where it swells up and really sore, but then it dies down again and i barely notice it. I'm pretty sure my brother has it too.

To those that have had the surgery, how long were you out of work? And how long were you in hospital?

Pardon the pun, bit this seems a real pain in the ass.

Supercell · 29-07-2008 8:53am

MagicMarker, from reading the stories above its not something that i'd wait and see if it went away by itself!
I did a lot of cycling at the time and it was making that almost impossible which is the only thing that promted me to go to the doc in the first place, I think I got lucky as a result.

MagicMarker · 29-07-2008 4:47pm

I never thought it would go away, however i was hoping it would just stay as is, and not get a lot worse, which it hasn't. But reading the replies here, the least i should do is go to the doctor and see if antibiotics will do the trick.

Surgery really isn't an option for me in the foreseeable future as i just couldn't take that kind of time off work.

pookie82 · 29-07-2008 5:57pm

MagicMarker - Depending on the extent of your wound, recovery can take anything from a couple of weeks to a couple of months (if you're lucky).

As you may have gathered, there are two popular methods used to try to clear it post surgery. one is to stitch the wound and hope they've gotten all of the infection out and it clears up in about a week or two (depending on getting stitches out etc).

The more popular method is to leave the wound open. It's then "packed" on a daily basis with surgical dressing to ensure that it doesn't close too quickly and trap an infected area under the skin again (read some of my discussion with metoyou above and this might help to explain this method). This often takes a month or two to close. Once it does that should be that, as long as it's kept hygenic and well cleaned throughout recovery time (though this can be v hard due to its location!)

Yours sounds pretty benign if you've had ot for a long time and it's bearable. My pain was literally unbearable and it ate into a nearby muscle causing me on one occasion to pass out with pain. The general feeling of a really deep, bruised soreness in my lower back was too unbearable for me not to see to, and i have a pretty high threshold.

I would advice that you see a doctor though. many are willing to try a course of antibiotics before jumping for surgery and a few have had this work for them. you could also ask if draining it is an option (again, not a surgical procedure but it may ease the problem). But I would strongly advise that you get it checked out. If left unattended these things can go pretty deep. The reason it's such a horrible affliction is that once you contract the infection, it sometimes doesn't show up for months. You then get a strange bruised feeling and a lump or a boil and think you have a fairly easily remedied problem. What you don't realise is that what's going on on the surface is a tiny fraction of what's going on underneath in most cases. The boil or lump is only an outlet - the big problem can spread inches down the skin.

So I would get it seen to to ensure that you don't end up with a much bigger problem down the line.

MagicMarker · 29-07-2008 6:12pm

pookie82 wrote: »

MagicMarker - Depending on the extent of your wound, recovery can take anything from a couple of weeks to a couple of months (if you're lucky).

As you may have gathered, there are two popular methods used to try to clear it post surgery. one is to stitch the wound and hope they've gotten all of the infection out and it clears up in about a week or two (depending on getting stitches out etc).

The more popular method is to leave the wound open. It's then "packed" on a daily basis with surgical dressing to ensure that it doesn't close too quickly and trap an infected area under the skin again (read some of my discussion with metoyou above and this might help to explain this method). This often takes a month or two to close. Once it does that should be that, as long as it's kept hygenic and well cleaned throughout recovery time (though this can be v hard due to its location!)

Yours sounds pretty benign if you've had ot for a long time and it's bearable. My pain was literally unbearable and it ate into a nearby muscle causing me on one occasion to pass out with pain. The general feeling of a really deep, bruised soreness in my lower back was too unbearable for me not to see to, and i have a pretty high threshold.

I would advice that you see a doctor though. many are willing to try a course of antibiotics before jumping for surgery and a few have had this work for them. you could also ask if draining it is an option (again, not a surgical procedure but it may ease the problem). But I would strongly advise that you get it checked out. If left unattended these things can go pretty deep. The reason it's such a horrible affliction is that once you contract the infection, it sometimes doesn't show up for months. You then get a strange bruised feeling and a lump or a boil and think you have a fairly easily remedied problem. What you don't realise is that what's going on on the surface is a tiny fraction of what's going on underneath in most cases. The boil or lump is only an outlet - the big problem can spread inches down the skin.

So I would get it seen to to ensure that you don't end up with a much bigger problem down the line.

Ugh! Not good!

Yeah, mine is most definitely not as bad as most. Rarely is it a big problem, although it has been quite sore the past few days.. But i know from experience over the next couple of days it will decrease in size and won't be an issue for a while.

But i obviously don't know of any underlying damage, so best to see a doctor. I would prefer a dose of antibiotics first. If surgery is a necessity then i'll have to go down that route, but not for a few months at least.

Question, if you opt for surgery and it's decided to leave the wound open, is it always a case of being visited by a nurse daily or do you have to make your own way to a doctor? Or are you bed ridden for the duration? Also, i would assume you're on some pretty intense pain meds considering you have a gaping hole in your lower back?

pookie82 · 29-07-2008 6:36pm

There's quite an amount of post surgery pain but they'll give you morphine to deal with that. After about a week the pain will fade and believe it or not the gaping hole isn't that painful!!! Not half as bad as the original problem anyway. because they usually have to take nerves and muscle the likelihood is that the "hole" left behind won't hurt at all. When it's knittng back together you may get some musle ticks and weird sensations but pain isn't an issue after the initial surgery.

Yes a public health nurse will be designated to visit your house on a daily basis for a while if your wound is left open. As it heals she'll probably need to come less and less though unless it gets re-infected. As for mobility - mine was pretty extreme and deep so i don't think it's fair to take my experience as the norm. Mine was just on my coxicks (I dunno how you spell that) at the base of my spine so it was bery hard to sit/lie/walk for a while but it gets better pretty fast if well looked after. Driving/cycling or sitting on it for long periods will be out of the question for a while though. But there's no reason for you to remain bed ridden at all.

I hope it's ok if I ask you this - when yours flairs up does it actually burst??? (I know that's gross but it;s important). you say it gets sore and swells but goes down again and gets less sore for a while.... Does this all happen underneath or does anything come out??? If it doesn't I'd get it seen to asap. Cos it's just travelling back down adn burrowing further in if not. If you want to avoid the need for surgery and a long recovery period you need to minimise your chances of it coming to that now. So go get it drained.

MagicMarker · 29-07-2008 6:43pm

Yeah it does, erm, secrete.... ewwww!:)

Hopefully i'll be lucky and it won't be such a hindrance in years to come. It would be nice to get rid of it for good.

Pilonidal sinus

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