Just a Canadian girl's long journey

#1
I'm very sorry for this long post!

Three years ago is when I first started to notice a pain and red swelling on my tailbone. At the time I didn't have a family doctor so I visited a walk in clinic. The doctor told me I likely had what was called a pilonidal abscess - and that I needed to go to the emergency room to have it lanced and drained if the antibiotics he would give me didn't work. Looking back I wish I had done more research on the subject before I let anyone cut into me.

A pilonidal abscess isn't a cyst. It doesn't have a neat little sac you can just take out. These have tunnels. Many tunnels filled with infection that work their way through the body like ant burrows.

The antibiotics didn't work of course. I visited a hospital emergency clinic. A very young doctor who said he did this procedure at least 3 times a shift lanced and drained the abscess in two places. He said these things had a way of being a deeper issue and that I should go see a surgeon.

Fast forward a year after two tiny holes from the hospital never healed I had my first surgery. I had no idea what I was getting myself into. The surgeon told me it was some of the worst tunneling she had ever seen. I was left with a massive hole of open flesh and infection after infection.

Later that year I got married in Jamaica. I cried in my wound specialists office when she advised me to not even go swimming while I was there because believe it or not 8 months post op I was still left with a wound that wouldn't close.

After that my next option was to have a second surgery. Because after all those months of healing maybe the surgeon didn't get it all out the first time right? Cue May of 2017.

The second surgery I remember waking up in the recovery room and the surgeon telling me this time she stitched it completely closed. A few days later all the stitches were broken and I was left with an even bigger open hole of flesh than last time. Nearly 14cm long by 4cm deep and wide.

This time they wanted to put me on a wound VAC. The pain I experienced during that time I will never forget. Three times a week for 6 weeks I spent 1 hour laying on my stomach at the nurse clinic having it reinstalled. And before that I screamed through tears as my husband pulled off the VAC foam for me so I could shower. No amount of soaking or painkillers could ease that experience.

After 6 weeks they decided it wasn't working. By then it had left me with an infection and such a bad skin irritation from the tape I still have scars.

Then follow the wound specialist appointments. I have literally tried every product available to me. 10 months post op and I am still not healed.

This week I was given a skin graft from amniotic cells. A product not yet available here in Canada. I get it 2 more times before they determine if it's working for me. I am terrified that it won't because I don't know where to go from here.

I am so tired of people asking me why my body refuses to heal. Why such a young and seemingly healthy person could possibly still be dealing with this. I have no answers to give them.

I look in the mirror and I don't recognize myself anymore. I can't go to the gym because any extra physical movements places stress on an already fragile wound. I try to put on a happy face to the outside world but on the inside I am destroyed. I am a 27 year old married woman. I want to live my life and start a family.

Thank you to anyone that took the time to read this. I'm a long time reader of this forum and reading your posts have honestly helped me.

It's nice to know there are people out there that are on this horrible journey with me and that there can be light at the end of a very painful tunnel (no pun intended).

-S
 
#2
Oh my god I am so sorry you are dealing with this and have been going through this for so long.

I had the tunneling as well, very deep, 7cm deep and the width and length were large as well so I can empathize with you to a degree but I can't say I have been dealing with much else. I had my surgery done back in December and I am almost closed, I have had no pain and no infections (knock on wood). It is weird how every persons body can and will react differently to this operation.

If you don't mind me asking, where in Canada did you have your surgery? Also are you eating protein and taking vitamins? I hope you are doing well and hopefully you will keep us updated. I find that this place helped me a lot when it came to venting and just getting steam off of my chest.
 
#3
Seeing you guys talk about your painful past i get such hope in darkness. I am 19 and quiet obese. I got my surgery in august 2017. 4 cm deep and wide. Followed by several surgeries and no university i was left alone in my house. My wound closed this january and now 2 weeks ago i notice light yellowish discharge and quite itchy area. I am still not sure what is going on cause i had no time to meet nurse due to weather and work conditions. I dont know what future has got for us. I keep asking for all of you guys guidance and its always helpful. :):):) we all gonna get through this.
 
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