My pilo story - hopefully can help others

Hi - I'm 31 yo, live in London, female.

My pilo story started last May (2015). I felt extreme pain in my coccyx for a couple of days (as well as the most horrific fever/flue/mouse sores), did my little investigating and found out about a world that, until then, was alien to me. I went to the doctor straight away (walk in), got antibiotics and the pilo went away (it was big, but not close enough to the surface to lance).

Although it was gone, from my research I knew that I'd need to operate sooner rather than later. But I was nervous, I was getting married and going away on honeymoon in Africa in August - which didn't give me much time to heal.

But I was too scared to have another episode right before the wedding, or worse, during our honeymoon (2 weeks self-driving around Namibia!) - and I found out that, even if you no longer have symptoms, the tracks can still grow bigger and deeper - which would would make any subsequent surgery more serious (and scar much bigger!). So I decided to have surgery, quickly.

I started talking to a few GPs and nurses, who were useless (they made me feel bad for asking questions after "only 1 episode" and said that I was over-reacting when I spoke about having surgery). One nurse even told me that I should just go online to get the answers I needed. Most GPs know very little about this condition - so do yourself a favour and find a specialist.

Luckily, I have private healthcare. I found a surgeon that specialises in pilo procedures (PM me if you'd like his details), he saw me at the beginning of June and scheduled my surgery for the following week (June 11th) - I was to have a closed Bascom procedure, off the mid-line. Stitches were to be taken out after 2 weeks, and after 4 weeks I'd be fully healed.
As I had more than 9 weeks to go until the wedding - I thought "perfect".

Well - "almost perfect". I was made aware that my wound could break down, and if it did, it would result in open healing which "would take 8 weeks". Still within the wedding time-frame though - so I decided to go through with it.

Surgery went well - although instead of lasting 1 hour, it lasted 3 - which I understand is a really long time for these types of procedures. I stayed in the recovery room for about 1 hour (the gentleman that looked after me was an angel) after which I was taken to my room where I spent the night. I woke up on my back without any pain, and after a couple of hours I could go to the bathroom on my own (I was VERY dehydrated, so I was drinking a lot).

My wound was deep (to the bone), but not long (about 4 centimetres).

I went home the next day, and started to heal. The anaesthetic they used was long lasting, so I didn't feel any pain until day 4/5. The wound looked really good at first, with very little leakage/blood. But then.....

.... sadly, my wound broke down after 2 weeks.

I turned to open healing (from the bottom up) - but healing was slow.

My doctor could tell I was upset, so he eventually resorted to giving me a local anaesthetic (which KILLED), to stitch my flesh underneath the surface and encourage faster healing. My flesh was too weak, so instead he stitched the upper part of my wound (I was in too much pain so he didn't do the lower part).

Although it was awfully painful, I am glad we did it, as healing did accelerate. There were points throughout the healing process when the wound got (or appeared to get) bigger - which again made me feel low - but I think it's just the way one's wound can heal.

I started surfing the web to find would healing solutions, and came across Multidex Wound Healing gel several times. I tried to get it in the UK, but it wasn't available. I ordered it and sent it to a friend in the US, but in the meantime my surgeon recommended a cream called Flaminal Forte which I started using straight away and which gave good results (you have to use the gel instead of the packing strips - I had used Aquacel AG until then).

I did have to pack my wound on my wedding day and all throughout my honeymoon - but I was a lot better by that point and I could move around/sit/sleep without any issue (I got myself a doughnut cushion - you just have to). The only problem was the plane - which is to this day, uncomfortable.

My wound got infected twice (puss), but I had antibiotics in reserve, so I immediately took those and the infection cleared rather quickly.

By the time I got back from honeymoon in September, my wound was really quite small. I continued packign every day, and finally healed in November 2015. So in total, healing time was 5 months, well over the "8 weeks healing time for open wounds" (and WAY above the "2-4 weeks healing time" initially spoken about!!!).

Would I have done it, knowing what I know today? Probably, because I don't know what would have happened if I did. Maybe nothing, but maybe it would have ruined my wedding day/parts of my honeymoon.

During the healing, make sure you eat tons of protein, take zinc tablets, and manuka honey. Don't eat crappy foods and no alcohol/smoking.
Also, try not to worry, it will heal. I listened to some healing music/meditation, which I'd like to think helped :)
I've since spoken about it to a lot of people, and it's crazy how many actually have suffered from this. It's a pain the in $$$ (literally!) but eventually you will get there.

Best of luck to all of you. I will keep you updated!
Hi PBpilo.

I am currently recovering from a midline primary closure and i have just had my stitches removed.

I was also told about wound breakdown however my surgeon used a lot of internal stitches to bring the tissue together, and I feel this has contributed massively to my wound healing.