Reoccurring “flare-ups”


New Member
TLDR: I have had an open pilonidal sinus for 2 years now and I am wondering if my current routine is effective or if I should consider surgery.

Hi yall!

I’m a 23 yr old female with excess body hair and a big butt lol. I have had pilonidal disease for over 2 years.
I developed a very serious infection in 2018. Shortly after arriving back in the US from a study abroad trip to Spain, I noticed a bump on the cleft of my left cheek. I was in the shower and felt it and after Googling it to figure out what it was, all I saw was “you need surgery.” I almost freaked. But at the time it didn’t hurt(?), it was tender. I didn’t think much of it until the pain got worse. I was at work and bent over to pick something up when the friction from the fabric of my pants and underwear rubbed it just the right way to make me exclaim “ouch wtf.”
I immediately went to urgent care after work to have it checked. The doctor took a look and said “yeah you definitely have a pilonidal cyst. You’re going to need emergency surgery to remove it.” !!! I almost flipped out and started crying because now I had to be transferred to the ER. After waiting 6 hours sitting “uncomfortably” in the waiting room, I was finally examined by a very rude RN who simply looked at it and said “we can’t do surgery here you need to have a consultation with a doctor. However we can lance it for you and get whatever we can out.” So then she and another nurse proceeded to administer a local anesthetic and lance it open while squeezing it. HARD. I cried on the bed in pain. But after about 5 minutes they decidedly GAVE UP and put gauze over the open wound they made, wrote me a prescription for pain meds (not antibiotics), and sent me home.
That was on a Friday night. On Monday morning, I couldn’t sit, stand, walk or even kneel. My pain was so severe that I cried and cried. It wasn’t long before I checked the wound and saw a huge red spot that was hot to the touch. I then developed a fever. THATS when I knew it was time to go back to the ER.
I’m so glad I went when I did because I developed borderline sepsis and a serious infection. I had to be administered several antibiotics and pain meds, including dilaudid. Thankfully I was in good hands. This time the nurse was much more caring and gentle. She lanced my cyst and removed as much fluid and pus as she could. I was so relieved.
Recovery sucked. I’m not gonna lie, having an open wound on the cleft of your heiney stuffed with cotton gauze everyday is not fun. But that’s what I had to do to keep the wound from closing without properly draining all of the pus from it. It took about a week for things to go back to normal. It felt so good just to be able to sit comfortably.

Now, here’s the thing... I have had what I think are “flare ups.” In my case, my wound is still open. From time to time, if I know I have been sitting for long periods of time with improper posture (which I do a lot of... clearly I haven’t learned anything from my first experience) I will have a very sore butt. My sinus will swell up and become red (sometimes black at the opening) but it feels soft to the touch. I know the fluid is draining which is good. It means it’s not trapped inside.
My current routine is using Dove bar soap (although I used to use Hibiclens which I am about to switch back to) and a face cloth or bath poof to gently exfoliate the area. I also have a jet setting on my shower handle which is fantastic. It does wonders for cleaning extra soap or debris stuck in the cleft and also feels GREAT when my wound is super itchy. When my wound hurts or when it’s draining, I use Neosporin to kill bacteria and place a bandaid over it to avoid friction.
So far I am happy to report that I have not had to visit the hospital since then! But I am wondering if anyone on this forum experiences the same issue and whether or not they decided to have surgery done?
If possible I want to avoid surgery at all costs because I don’t want to have it done.