I was diagnosed with a pilonidal cyst about 9 years ago, when I was 15.
I had a wide excision that was left to heal through wound packing. It healed up in about 2 months, but the cyst recurred a few months later. Had another surgery about 9 months after my second one – same procedure, and same physician.
As a teenager, it was very hard having to deal with being home for twice daily wound packing because of my school schedule and my mother’s work schedule (she primarily did the dressing changes). Not to mention the pain and discomfort. The wound from the second surgery never healed and I was told I’d need another surgery or it wouldn’t heal. This time, I opted for stitches because I didn’t want to deal with the daily dressing changes. Big mistake, as that wound, too, never healed properly.
I changed physicians at this point, and my new surgeon recommended a bilaterial gluteal flap along the midline – this would replace the diseased tissue with healthy tissue and would avoid those annoying dressing changes. This was surgery number 4. I was 20 at the time, and almost ready to graduate college. My wound looked like it was going to heal up this time, but – unsurprisingly at this point – parts of the wound broke down and I was told I’d need ANOTHER “small” surgery to clean out the area.
At that point I was NOT having it anymore. 4 surgeries, 4 recurrences/failure to heal. At that point it was clear to me something bigger was going on, that each surgery would just fail and lead to another one. I changed physicians again and the new one recommended I do a Limberg flap. it would have been disfiguring, effectively removing my cleft. It also would have made me miss almost a month of work, something a 21 year old can hardly afford. For 3.5 years I decided to hold off on surgery and try and focus on healing the current wound, or at least taking good enough care of it that it didn’t get worse or infected.
For 3.5 years I dealt with pain, lots and lots of drainage (sometimes embarrassingly seeping through my clothes), and having to explain the bandages on my butt to sexual partners. Thankfully a few months after that last surgery I met my current boyfriend who was very understanding and accepting.
In April 2016, I was still maintaining the wound, following up with the surgeon a couple of times a year to make sure nothing got worse/that I was still OK to hold off surgery. I began to feel hopeless, like this problem would never go away. If I got another surgery and it failed, then what? My surgeon couldn’t even tell me what next steps were if this one didn’t work out. So, despite my discomfort and the embarrassing nature of my wound, I didn’t do anything about it. However, I began to slowly accept the fact nothing would get better without at least trying the drastic plastic surgery.
So, I decided that if I was going to get ANOTHER surgery, I was going to be in the best possible health to do so. I cut out all added sugar, refined grains, and processed foods, and allowed myself to only eat real, whole foods. I also began exercising more frequently. And a funny thing happened. Within about 2 months of changing my lifestyle, my wound completely healed. I got a clean bill of health from the surgeon — the one who originally wanted to disfigure me now says she wouldn’t operate on it.
So, I healed with lifestyle alone. Therefore, if you’re struggling with a pilonidal cyst, especially if you’re having issues healing after surgery, I STRONGLY encourage you to evaluate your diet, and your activity levels. For the longest time I reduced my activity out of fear of making the wound worse but I couldn’t have been more wrong. (Of course, if you had surgery less than 2 months ago, take it easy). I told my doctor what I did to make the wound heal, and she told me that blood sugar levels can play a role in wound healing. Our surgeons should tell us this off the bat, but they don’t. I felt betrayed because this simple solution, had I tried it years ago, could have saved me pain, humiliation, heartbreak, and money. Its time I’ll never get back.