“How it all started
In September 2000 I was involved in a car accident. I was driving up Surbiton high street and a van was turning in the road in front of me. I stopped, behind me a young girl in her mother’s car on her way back from a friend’s house didn’t. Luckily I didn’t have my handbrake on, or my foot on the footbrake, I felt the impact through my seat, my car was shunted forward a fair distance but thankfully both cars were still drivable.
A couple of days later I noticed that the area around my coccyx was very painful, it got worse, I couldn’t sleep on my back, I couldn’t sit down. I made an appointment with my GP. I hadn’t lived in the area for that long, about a year I think, I was young and pretty healthy and it was the first time I had been to the surgery apart from the once when I had registered. I saw the duty doctor, who was a woman, about 30, pleasant and attractive. My heart sank slightly, I was a young man, in pain, not on good form and I knew this consultation was likely to end up with me having to get at least partially undressed and have this young attractive doctor look at my bum. I explained that I’d recently had a car accident and thought that the impact had done something nasty to my coccyx. She looked at me and prodded the area “Does this hurt?”, “err. lower down” I explained. “Hmm” she said quietly, “could you get undressed from the waist down and pop yourself up on the bed there” I obliged and she gently pressed the area I had pointed to “AAWWW, My life that hurt!” I wanted to shout, but instead managed a small whimper … “I’m just going to squeeze here a bit, this is probably going to hurt” she informed me. It did hurt, she also got her finger caught in the hair on my bum which had got matted from the blood and pus she’d squeezed out. “I’m sorry this must be a pretty horrible thing for you to have to do” I said rather helplessly lying in almost a foetal position as she struggled to free her finger. “Not as horrible as it is for you, I’m sure” she replied kindly. Afterwards she told me I had an abscess. She explained that I had a small sinus, drew a picture to explain what that was, and that it had got infected, she gave me some antibiotics and told me to come back if it didn’t get better within a few days. She also predicted that she’d probably see me again in a few months because these things didn’t often get better themselves. I walked out of the surgery feeling a good deal better after she’d got most of the puss out of the abscess, though still in a bit of pain, and rounded the corner to go and get my antibiotics from the chemist next door.
She never mentioned the phrase ‘Pilonidal Sinus’.
I knew what an abscess was, I didn’t really understand why I had this sinus thing, I figured drain the infection, take the antibiotics and it should heal up shouldn’t it? Anyway the infection cleared up, it stopped hurting and bleeding and that was the end of it as far as I was concerned. I was slightly worried by the doctor’s prediction that I’d be back to see her, but months went by and I had no more trouble from it. In fact a couple of years went by, I moved house, I had forgotten about it by the time I noticed that I had some pain in the same place as before. It wasn’t that bad though, not nearly as painful as before and got better by itself after about a week. However this was the start of my battle with Pilonidal disease although I didn’t know it at that point. After a couple more episodes of it hurting and bleeding a bit about 6 months apart I knew something was up, I turned to the web and searched for ‘sinus’ and ‘coccyx’, after a short time I had diagnosed myself with a Pilonidal Sinus, and read a lot of pretty daunting things about it.
Given what I’d learned I wasn’t sure I wanted surgery and I wasn’t too keen on repeating my experience with the nice GP I’d seen a few years before. Curse the Internet with it’s plethora of information on tap, and curse my want for knowledge and embarrassment about embarrassing medical conditions and having to strip off in doctors surgeries.
So I lived with it for a while longer, it would flare up every so often and once with a particularly bad flare up I went to my GP, explained I had a Pilonidal sinus and got some antibiotics. I asked what could be done about it and was told not much, they were a very troublesome thing.
I think I was unlucky that the GP’s I saw early on didn’t send me straight to see a consultant to discuss possible surgery. It may have been that at that time I wouldn’t have been recommended surgery but I wish I had had the option. I believe it would have been a lot simpler at that time and perhaps I wouldn’t be where I am today had it been tackled early. Still it is water under the bridge now, however if you’re reading this and are a Pilonidal sufferer who hasn’t yet had surgery, make sure you see a consultant sooner rather than later and make an informed decision whether to leave it or go for it. I chose to leave it but that was based on my own knowledge and the limited information I’d got from my GP, and I dearly wish I’d been pushier with myself and my GP earlier on.
Skip forward a year or two to mid 2005. The thing was frequently flaring up now, perhaps once a month. I decided I wanted surgery, I got myself referred to a Consultant on the NHS and scheduled my surgery for early December. It was at this time that my PNS got a name, I called it Sammy, he had outstayed his welcome and he was going to be evicted.
SURGERY NO.1 – 06/12/05
The quick summary
This first surgery wasn’t very successful. I was in and out the same day and came away with a very neat scar stitched with permanent stitches about 8cm long straight down the mid-line of my buttock cleft. Everything went downhill rapidly after about two weeks. I got a post surgical infection, the skin healed fine but the wound partially broke down underneath. I had the stitches out successfully, but the wound never healed up and after about 5 months I was back for op no.2. The whole experience with the NHS also wasn’t too good for me. I don’t want to knock the NHS and the doctors and nurses who I saw were very nice to me, but unfortunately the severe lack of staff and funding is still a huge problem and everything happened far too slowly, which was very frustrating.
The detailed account
My first Pilonidal surgery was done as an outpatient at the Royal Surrey County Hospital. I had private medical cover but at the time I believed that my insurance wouldn’t cover the surgery, for reasons I won’t go into. I’m not going to talk about the day of the surgery and the experience because it’s pretty much the same as everyone’s experience of surgery, except to say that it was done under general anaesthetic, I was about 7 hours late going down for surgery because the Surgeon wasn’t available (good old NHS) and I went home after a few hours of recovery.
I was surprised by how painful it wasn’t. Compared to the constant dull pain of the sinus before. I was optimistic, I could feel that it had gone. I didn’t dare sit for a few days, in fact the only time I sat was to go to the toilet which was quite painful, not to mention rather tricky with a huge bandage taped over a large part of my buttocks, and I dreaded it every day. I was given Lactulose to “soften the stool” which initially I didn’t take – big mistake. Laxatives are good for post surgery. My first appointment with the nurse at my surgery was about 5 days post op, it should have been sooner with the district nurse and I’m going to say this once but not dwell on the point. At this time I did not had a good experience at all with the whole district nurse thing. My advice is be pro-active and be pushy. If you’re going to have surgery on the NHS as an outpatient, book your first appointment with the nurse for a day or two after the op BEFORE you go in for surgery. Local authorities and GP practices differ and you’ll know what it’s like in your area but generally they’re booked up a good few days in advance at least. If you can’t get an appointment, be pushy tell them you really need the wound looked at. Closed wounds are particularly vulnerable to infection, is the consensus, I concur. In the NHS system when you’re discharged from hospital after an operation that’s it, they don’t want to have anything more to do with you. You’re in the care of your GP from then on, but GP’s surgeries are generally very busy and you can end up being left in limbo land, where because they haven’t seen you yet, nobody really cares about you. The hospital tells you your district nurse will come out to you, but they don’t know that at all, it seems to me that the two organisation’s don’t communicate. Again this may vary from PCT to PCT but in Surrey this was my experience.
So week 1 and 2, went well, the nurses said the incision was very neat, about 8cm long I’d say. Pretty much straight down the mid-line of my buttock cleft. I didn’t get it wet and the dressing was changed every few days. The incision had a small section at the base which wasn’t stitched closed, this was to enable the wound to drain if necessary I was told. 2 Weeks and one day and the nurse changing the dressing was alarmed by the fact that there was a large amount of fluid coming from the wound. She asked me whether it hurt, I didn’t think that it hurt any more than I expected. After all I’d just had an operation. However after subsequent surgeries, I now know that it did, it hurt a lot compared to my subsequent surgeries but I didn’t realise what it should feel like at the time. The doctor was summoned and I was told I had an infection in the wound given antibiotics and told the wound may break down completely. It didn’t, but that was pretty much game over from then on.
I had the stitches out after just over two weeks, it bled a lot at the time. The wound continued to heal after a fashion but that hole at the base of the wound never closed and would break down inside tracking upward, heal a bit, then break down again. I started to get pain at the original site of my abscess, I told this to everyone at my surgery who saw the wound, they were sympathetic but not too worried and were convinced it would heal eventually, so I went through about 4 months of wound packing with Aquacel (which is amazing stuff) and many courses of antibiotics. This was a pretty low period, but I didn’t really know what else to do, I trusted the staff at my GP practice that it would eventually heal, even though it still hurt. I knew that keeping the area free of hair was important, though this wasn’t something I was told after the operation at the hospital, and the nurses at my surgery were happy to shave it for me or use depilatory cream, but the consultant didn’t seem that bothered about it when he removed the stitches. He agreed that it would be a good idea but didn’t stress the point. After about 4 months of this I and the nurses decided I should try to get another appointment with the consultant at the Royal Surrey, though the nurses said it was unlikely that the consultant would suggest anything different that could be done (they were right). Getting the appointment involved being re-referred by my GP, because of the ridiculous NHS bureaucracy, it took a long time but eventually I got an appointment for the 24th April. All this time I was off work or working from home. The day of my appointment at the hospital came, the consultant looked at it, didn’t even remove the packing, and assured me that it would heal eventually, the whole consultation took about 2 minutes. I was pretty peeved.
I then decided to explore the possibility of getting an appointment to see the same consultant privately, and worked out that in fact I would be covered by my health insurance. So I booked a private appointment, which was a wholly different experience, and to cut a rather boring long story short I was scheduled in for a re-excision of the area, about a week later.
SURGERY NO.2 – 12.05.06
The quick summary
My second surgery was a lot better than the first. I came away with a scar very similar to the first one although perhaps slightly longer, about 10cm which extended a little lower than the first and again had a small area about 1cm long at the base which was not stitched closed for drainage. I didn’t have as much pain as the first time around, and the aftercare process was a lot less problematic, I’d sussed the system at my GP’s surgery by this time and was well known by all the nursing staff. Eventually with the help of antibiotics, a steroid ointment not licensed for use in the UK and a lot of time the wound did heal in January 2007. However that wasn’t the end and a few months later I had a recurrence a new sinus had formed along with a lot of pain and cursing from me. It’s unclear to me whether this recurrence was a really a new incidence of the disease or just the original infection which was temporarily knocked back. I have a strong suspicion it was the later.
The detailed account
So on to the second surgery which was essentially a repeat of the first one. By this time I had formed the opinion that my first surgery had failed because part of the infected tissue from the original surgical site was missed at the first surgery. It seemed to me that where it hurt most at the top of the cleft of my buttocks was where the suture line started and I was concerned that the area they removed there couldn’t have been wide enough. So although the sinus had been removed the underlying infection was still present and eventually worked its way down through the recently healed scar tissue formed after the first operation. I stress that this is only my opinion and may not be true at all, but it seemed to fit to me as a theory. The only other thing I could think of was that the area at the base which was not stitched closed could have provided a good entry point for hair and bacteria to get into the wound but my consultant insisted that it was necessary and that it shouldn’t have caused a problem. A third factor which also was in contention was that I had previously had a reaction to the stitches used inside the wound. One of the nurses at my surgery put this forward as an idea after I also had to have a couple of moles on my back removed during the time the first surgery was (not) healing. The wounds I had from this which were only small and were stitched with dissolving stitches also did not heal well, one of them became infected and the stitches didn’t seem to rot as they should have done. For this reason my consultant claimed he had used different stitches for this second surgery, to be on the safe side.
This time around I took the laxatives right from the start. It was a lot less painful, and sitting on the toilet wasn’t nearly as painful as after the first surgery. I had high hopes. Again I stayed off the area, sleeping on my side, lying or kneeling instead of sitting and generally being careful. I tried to eat very healthy as I had done the first time around, as I was told that a high protein diet with lots of fruit and veg would really speed up the healing process.
By now I was savvy in the art of booking ahead for appointments with the nurses at my GP’s surgery who all knew me well since I’d spent the last 5 months seeing them pretty much every other day. They were great, always cheerful and professional, and they made me laugh which wasn’t easy at that time, I was pretty miserable on the whole. So I went in for my dressing changes and things were going well. I had my stitches out after two weeks, with no real dramas and very little bleeding compared to the first time. However as time went on and the general pain and discomfort subsided I couldn’t help feeling that it still didn’t feel right to me and sitting was still uncomfortable. I noticed the familiar pain at the top of the wound return and again. The area at the base of the suture line was still open and refusing to heal up. I had a couple of courses of antibiotics in case there was a lingering infection which was preventing the site healing, but in the end to no avail. Incidentally I am now a relative expert in the use and consumption of commonly prescribed broad spectrum antibiotics and some of the narrow spectrum ones as well! It scares me how many I have had and I wouldn’t be surprised if I’m now harbouring some bugs with some pretty impressive immunity.
So after about 3 months my consultant told me that he had spoken to a colleague of his who suggested using a particular steroid ointment around the area to try to encourage it to heal up. This ointment wasn’t licensed for use in the UK but nevertheless they were happy to prescribe it to me and so I went away with this, and sure enough it did seem to speed up the healing quite a bit, eventually to the point where it stopped draining. However I still had the feeling that all was not well, and a couple of weeks later it began to start discharging again. At this point I think my consultant at that time gave up with me, he’d done all he could think of and so he referred me to his colleague who had suggested the steroid ointment. A plastic surgeon who I was told could perform a flap surgery which would likely sort out the problem.
My new consultant was reticent, he explained that the flap surgery was quite invasive and my case was pretty mild compared to most that he saw. He wanted to wait and see what happened. I agreed though I can’t say I held out much hope and agreed that I would see him again in three months time. The three months went by and I have to say that for once I was quite surprised. It did seem to have improved and I’d had no discharge for a long time. I started to feel that perhaps I would be ok and for a period of time, my life was the most normal it had been since probably the end of 2004. Although I never quite got rid of the slight pain I felt whenever I sat down on a sofa or did anything vaguely strenuous, again it was the site of the original infection that concerned me which from the outside looked fine but never quite felt right. Still I was pronounced healed in January 2007, just over six months after surgery No.2
However this was obviously not the end, or this blogsite would not exist. About three months later the honeymoon was over and by early June I was back in the office of the Plastic surgeon discussing the next move, which was to be the originally proposed z-plasty flap reconstruction surgery…
SURGERY NO.3 – 06/12/07
The quick summary
My z-plasty experience with my new surgeon was quite different to the previous two surgeries. This time I was in hospital overnight, my surgeon used methylene blue prior to the surgery. I had very little pain after the surgery compared to what I had expected. Everything went well, better than expected for the first three weeks. After which all hell broke loose. Out of the blue I had a massive infection with an abscess which had to be aspirated and a drain installed. I was re-admitted to hospital and put on IV antibiotics for 48 hours. After that the lower section of the wound refused to stop draining, and eventually given the chance to heal my newly remodeled buttock decided it wasn’t going to, so as of March ’08 I was en-route to surgery No. 4
The detailed account
My experience with the my new surgeon was quite different. He took more time to explain to me what he was going to do and why, he warned me that the z-plasty he planned to do was quite a major surgery and that I would be left with z shaped scar rather like the mark of Zorro, and a large part of my natal cleft would be obliterated, in other words, the crack of my bum would be flattened out. I was prepared for what was going to happen, but even so when I first saw the wound I was a bit shocked, it was quite dramatic. The advantage of a flap closure is that more tissue can be removed without leaving a large open wound which would take a very long time to heal. It also moves good tissue into the mid-line and eliminates the cleft where hair most often enters causing a recurrence. My new surgeon also used Methylene Blue just prior to the surgery which stains the infected tissue and makes it easier to see how far the diseased tissue extends.
Again I was admitted as a day case but told I may have to spend the night. I had a general anaesthetic and when I came round I had very little feeling in the area. because there was a local anaesthetic in the wound and also nerves in the tissue that gets displaced and moved are severed in the process, it often takes several weeks to regain full feeling in the area. I’m not going to go into detail about the mechanics of the z-plasty if you google it you can find out exactly what it involves.
I had a drain which was left in the wound and there was quite a bit of bleeding from the drain, enough that the duty doctor on the ward suspected I may have a haematoma, and that they should keep me in overnight. They duly did this and in the morning it seemed to have stopped bleeding, so the drain was removed and I was allowed home. Of all my surgeries I think the z-plasty was the most comfortable, this could be because there is little tension in the stitches compared to the simple closure, or it could also be simply because the area had a long lasting anaesthetic in it. All my stitches including the ones on the outside were the dissolving variety this time, and when I went in to see the nurses, this time at the hospital, again they commented on how neat and tidy it looked. I must have skin that is easy to stitch up! My healing progressed really well and everyone was delighted by my progress, I was told I was obviously doing the right things. Again I tried to eat well, lay on my side, took my laxatives and got lots of rest. It wasn’t hard since it was Christmas time and that was pretty much what everyone was doing around me! After about 3 weeks I was sitting down for short periods and I was told I was pretty much healed and could bathe and no longer needed a dressing. I was chuffed, this had been pretty easy.
A few days later the wound started to get a bit sore, at first I assumed it was just that I had been more active, but it got progressively worse to the point that I was convinced something was seriously wrong. It was new year’s eve and the outpatients department at the hospital was closed, so I headed off to my GP’s surgery who took one look at it, said it was infected and gave me some antibiotics. Over the next couple of days it got worse and started to bleed and discharge. By the time I next saw my surgeon, a week since I’d last seen him, and he’d pronounced me healed, it was looking pretty awful. He was amazed. I had an ultrasound scan of the wound there and then, that revealed a large abscess in the wound, which the radiologist drained and I was admitted back to the ward that evening for IV antibiotics for 48 hours. That was a horrible 48 hours, I felt awful. I had a drain installed in my bum with a bag attached to it that I had to carry around with me every time I wanted to get up to go to the toilet or eat. I also had the IV attached to my arm most of the time, so moving around in itself without strangling myself, or tripping over a tube was an artform. Added to that, the large dose of antibiotics gave me diarrhea and made me sick. So I was glad that after 48 hours they were happy enough that my infection was under control, and they would let me go home with oral antibiotics.
Although everyone was staying positive for me at that time, I got the feeling that wasn’t going to be the end of it, and sure enough it wasn’t. The wound continued to heal ok but it also continued to drain constantly from the hole where the abscess was drained by the radiologist. This went on for a few weeks, with the nurses (this time at the hospital outpaitents dept) applying a bit of pressure the wound every few days and keeping the hole from closing over to allow the wound to keep draining. Eventually the discharge slowed down and the consultant decided that we would see how it went, if it started to drain or bleed again then that would be that, and it would need some more surgical intervention, he suspected perhaps some hair had entered the wound at the base where it was impossible to shave due to the shape of the suture line. He seemed fairly confident it would be just a clean up operation on a small area which could probably be stiched up. So a few weeks later – the beginning of March ’08 it was still bleeding and discharging. Surgery No. 4 was beckoning.
SURGERY NO.4 – 21/04/08
The one that cured it
My surgeon was expecting this to be just a minor cleanup, he was going to open up the area at the bottom of the would and was planning to hopefully close the would with sutures afterwards. When I came round from the surgery he came to see me in the recovery room and said that he’d had to leave it open. It was big hole, he emphasised “a really big hole” what he’d found was a large area, basically about half the area of the previous z-plasty, which was infected and nasty looking. he later told me it was rather like an octopus with sinus tracks going out in all directions. I was kept in overnight again and the nurses re-dressed my wound in the morning. I asked the nurse how big the hole was and she indicated that it was about 6-8cm wide and about 2cm deep. I wasn’t in that much pain but I was a bit daunted at the prospect of caring for this big wound and how long it would take to heal.
However, despite the open wound being a fair bit more painful to begin with, say the first week to ten days, when I was taking pain killers regularly, (and I knew about it when I didn’t take them), it was much more comfortable than previous surgeries, I was told I could sit down on it as much as I liked and that I could be active just not to go wild with it. Not that I was going to. So I was sitting relatively comfortably after about a week. I had the district nurses changing my dressings and re-packing the wound at the weekend and I was up to my local surgery during the week.
It healed really fairly quickly, in comparison to the size of the wound. All the nurses who saw me were impressed by how well I healed, I had no big infections and apart from slowing down at the end and having a couple of occurrences of the wound re-opening after having looked as though it had closed, it was ok. All told, healing time was about 4 months, although after about 3 months it was 95% done. I really watched what I was eating and I got lots of rest ,and drank lots of water, which I think is such a big thing, look after yourself properly and you’ll cut your healing time down a lot. It was during the healing from this fourth surgery that I started this site and I wrote a kind of healing diary blog so if you’re interested in the details, what dressings I used etc. take a look at the Surgery No. 4 diary and scroll to the bottom of the page for the first entry.
If I had my time again, I would definitely have opted for wide excision with open healing (known as secondary intention in the medical world) the first time around. The downsides are that you’ll be at the mercy of your wound and it’s dressings, given that you need to have a nurse look at it and redress the wound every day. It does take a long time to heal up and you will have a large scar. However, it’s much easier to treat infections if they occur, your nurses can see what’s going on in the wound and the chances of a reoccurrence are lower, and when it comes down to it that’s the biggy. It was a long road but I got there, I’ve got the war wound to prove it, but I came out the other side. My surgeon and my nurses were great, and I hope that if you’re suffering with a Pilonidal or healing from surgery, you’ll be on the road to recovery soon.”