On November 5, 2018, I was at a friend’s wedding, and I started to feel pain on my tailbone. It kind of felt like a bruise. When I looked at it, the spot was red. The pain quickly started increasing and increasing, and in the middle of the night, around 3am, I told my husband I had to go to the ER because the pain was so bad, I knew something was wrong.
We went to the ER and the doctor took a look and he was certain it was a pilonidal cyst. He said he would give me very strong antibiotics to try to get rid of it that way, and if that didn’t help, that I should come back the next day and he would probably have to drain the cyst. I went home and the pain did not go away. The next night, I went back to the ER with my mom. This time, the doctor drained the cyst. It was the MOST painful thing I ever experienced in my life. He tried to do a shot to numb the area first, but the numbing was not able to go deep enough. He made a small cut on the cyst and pushed on the surrounding area to try to drain all the pus that was inside. I was SCREAMING and crying so hard because the pain was so bad. My mom said that the stuff oozing out of the cyst smelled horrible. Finally, the doctor said that he drained as much of the cyst as he could, but he couldn’t guarantee that he got it all out. He said the cyst could possibly come back and need surgery to completely remove it. He packed the wound with gauze and sent me home with instruction to clean the wound daily and re-pack it with fresh gauze. The wound was really only a couple centimeters long, but it was very scary to me. I had various people (friends who are nurses) help me with changing the dressing, since I couldn’t do it myself.
Meanwhile, my wedding was a month away! Even though this wound was small, the healing took a long time. Finally, this small wound completely healed around the end of January 2019. I was joyfully pain-free and wound-free for a couple months until the cyst did come back in early April 2019. The pain felt the exact same as it did at the start of the original cyst, so I knew it had come back. I was devastated.
This time I went to see a Colorectal Surgeon. She told me that I would need surgery this time to completely remove the cyst. I had the surgery on 4/4/2019. Dr. said that once she got in there, the cyst was HUGE. I think she said it was probably the size of a baseball. She said she was able to remove the entire cyst, which left a large gaping wound on my tailbone area. Right after the surgery she put a PICO wound vac on my wound. This PICO wound vac covered my wound and acted like a vacuum to keep the wound shut to promote healing.
I had that on until 4/17/2019, when I went back to see Dr. for a follow up and she took it off. The wound had not healed at all, was still a gaping hole, and she noticed some signs of infection. I immediately went to the hospital and stayed overnight. They told me the next morning they would put on a different type of wound vac to try to promote healing. The wound was hurting very badly. Every so often it was like my muscles would tense up and cause me a ton of pain. The next morning, they put the wound vac on. This wound vac involves stuffing the wound with a black sponge, and then covering it with tape. There was a tube connecting the wound to a vacuum that would pump out all the air and any drainage from the wound. The vacuum part of this device had to be with me at all times, I carried it around in a black satchel. It made a loud sucking noise all the time. This device was very finicky, and if there were any air holes in the tape, it would beep until the tape was sealed again. I was told the wound vac dressing would need to be changed every 2-3 days. This involved having a nurse come to my house every 2-3 days, rip off the tape, rip out the black sponge, and put in new sponge and new tape. This process HURT! Very badly. I DREADED it. My wound at the start of all this was huge. The nurse would measure it each time she came to my house. The wound was about 10 cm long, 1 cm wide, and 2.5 cm deep. I had this wound vac on for a total of 28 days, with about 12 dressing changes.
Throughout this whole time I missed a lot of work, but was able to work from home for part of it. The reason I stopped using the wound vac (on 5/15/20) was because I had a trip to Disney World planned for May 17-20. Dr. wanted me to keep the wound vac much longer, but agreed to let me stop for the trip. And because I HATED it. At the point that I stopped using the wound vac, the wound hadn’t healed very much. It was about 7 cm long and 2 cm deep. Now that I didn’t have the wound vac anymore, the new process was to change the gauze and clean the wound daily ourselves. My husband did this for me. It started out as twice a day (morning and night), but as the wound healed, we were able to do it just once a day. He would take the old gauze out, clean the wound with water, and pack in new gauze and tape gauze down over the top. The healing process was VERY slow. I was able to go back to work, but I saw Dr. on a regular basis for check ups. On 6/12/2019, Dr. suggested I start using a new type of gauze called AquacelAg, which is a gauze infused with silver, which promotes healing and prevents infection.
I was never actually on any antibiotics throughout this process for the wound, because the wound never got infected, thank God. But I did get infections in other areas during this time. First it was a boil on the back of my left thigh. Dr drained the boil – very painful. Got on antibiotics for that and it healed fairly quickly. Then my eyelid got infected, and that was super painful. Got on antibiotics again and it healed. Then I got another boil, this time on my left buttcheek. The dermatologist drained this one and it healed. When I had the first boil, a very bad rash formed in the area surrounding it. Very itchy, lots of bumps.
My primary care doctor, Dr. Hansen, gave me a cream that helped the rash go away. Also, around the end of June, the skin around my wound started to get really red and splotchy. The doctor said this is probably irritation from all the tape and gauze rubbing on the area. My nurse suggested that I use a skin barrier cream on that area, called Lantiseptic, and it helped. All of this went on until finally, on 11/12/2019, I went to see Dr. for the last time. She said my wound was healed. Just over a year since all of this started, it was over. The slow healing process was very difficult for me. Sometimes it felt like it would never heal. I would get very down and discouraged. I still get worried that the cyst will come back, but I pray that it doesn’t.