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Pilonidal Cyst - Experience

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Comment from: ConcernedParent, 13-18 Female (Caregiver) Published: October 31

My son came to me and told me that his low back hurt. I asked him if he fell or lifted anything to hurt his back. He said no and that it almost felt like his butt bone is broke. I gave him some Motrin and he went to bed. The next morning, he sent me a text because he could not even get up out of bed. I took him to the ER and the doctor looked at him and knew what it was immediately. The ER Doctor put him on antibiotics and some strong pain medicine until we could see the surgeon the next day. I get him home and he goes straight to bed. At 6:00 O'clock that evening, he yells for me and is screaming and crying telling me that he needs to go back to the ER! The pain was now at a 10 with narcotic pain medicine! The ER admitted him for pain control and he had surgery the next day. He had two open incisions that were packed and needed to be changed and repacked daily. The first packing change was excruciating for him! It took four of us to hold him down.

Comment from: ugghhh, 25-34 Female (Patient) Published: September 21

I am now on my second recurrence with a pilonidal cyst. The first time I went on Cipro and it went away. It never seems to drain. It just goes away, and I have it again now and am on Cipro once again.

Comment from: CaraBella, 13-18 Female (Patient) Published: September 10

I'm 18 and I had my pilonidal cyst removed. When I was 12 I had a horse buck me, and unfortunately, I landed on my tailbone. I recovered and thought nothing of it. Occasionally a bump would appear there then go away. But this time, it hurt and absessed for the first time as well. I got it lanced and drained and surprisingly recovered quick and didn't really need pain pills. Then I got the actual cyst itself excised. I admit I was scared because I googled the surgery and these huge gaping wounds were there and of course I watched the surgery performed on medical video sites. I thought I was in some serious trouble. But guess what? A week after surgery I didn't feel anymore pain. I haven't needed it repacked at all since my surgery and I shocked my doctor by being 100% mobile a week after the surgery. I was able to sit on the floor, tile floor! I was amazed I could go be active like I use to be and nothing hurt. They gave me vicodin. They and I both were anticipating some serious pain in the buttocks, but it didn't last for long and I don't need the vicodin. I'm expecting a year recovery but that's okay. I'm glad this was fixed for good. Good luck to everyone recovering. And to those thinking about it, do the surgery. It will hurt but better to hurt now then later for years.

Comment from: Shortnsweetme, 25-34 Female (Patient) Published: July 12

I was 14 when I got mine, couldn't sit, lie down, or walk. Although I do feel the most relief right after pressure is applied. It's when I first sit or first get up that is the most painful. I had it lanced the first time it came up, and the packing process is horrible! I feel mine is hormonal, I got my period for the first time just days after it was lanced, and I'm pregnant now and I have gotten it about 5 times in my 24 weeks of pregnancy. Luckily it doesn't have the nasty smell when it drains anymore.

Comment from: ohgodwhyme, 19-24 Female (Patient) Published: July 11

My pilonidal cyst showed up when I had just turned 17. I had a large cyst at the bottom of my spine with three drainage holes a couple centimeters apart in the cleft of my bottom. The drainage consisted of pus and blood and once bled so much that it leaked through my shorts. I was embarrassed so I put off seeing the doctor, which meant that by the time I saw him my condition was so bad that it needed surgery. I had outpatient surgery in which my cyst was removed and stitched up. I found that sitting and lying on the sides of my hips, rather than flat eased the pain and pressure on the wound a little. The stitches were taken out and I made appointments each week to see the doctor. He sometimes put drops of silver nitrate in the wound, which I'm still not too sure about, but it did help heal it a bit. My wound took about 18 months to heal, but then started draining again. The longest time it has been healed for has been about two months. The place where the cyst was will decrease and increase in size, filling up with liquid and then "deflating" as it heals. I catch the drainage with pads, which I wear every day, placed at the waistline of my underwear. This may be a bit embarrassing for boys, but it really works! Almost three years later, my wound is still draining; I'm still sitting on the sides of my hips; my life is still being inconvenienced; and I'm still wondering if I will ever be rid of this disease. I hope this detailed description of my experience helps someone else, even though it has been unsuccessful for me.

Comment from: Unknown, 13-18 Female (Patient) Published: July 06

When I was 13, I notice it was causing me too much pain to sit down, lay down, and walk. In school, I had to walk around like a penguin and everyone was laughing at me. That's when my mom and grandma thought it was hemorrhoids and when the cream they gave me didn't work, my mom took me to the hospital and had it surgically removed. They put me on a little bit of morphine but the pain was still excruciating. The following year, I was finding it hard to sit down in school and had to stand up during classes. I went to get it checked out to find it came back. This time I had surgery, they gave me stitches. A couple of months later, it came back again I had it surgically removed. Now I still feel pain whenever I try to sit down for a long time. Would you believe me if I said I was a 15 year old girl?

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