Post by pilonidalstories.com on Aug 28, 2017 12:44:43 GMT
“I had my first pilonidal cyst flare-up at 17, almost 18, years old. It started out as dull tailbone pain, so I thought that I had just somehow badly bruised it unknowingly. But the pain continued to get worse. Each day was worse than the one prior. It was the most painful thing I have ever experienced. I couldn’t sit, stand, walk, or lay down without being in excruciating pain. I went to a GP (not my regular one, as she wasn’t available). The doctor thought it was just a random abscess, and sent me home with antibiotics and a skin cream. 4 days later it drained on its own and the relief was tremendous. It continued to drain for a few days after that then seemingly went away altogether. By thoroughly researching online I diagnosed myself with a pilonidal cyst, so I was aware there was a good chance it would one day return.
Just about 2 months later, it came back. This time I went to my regular GP. She, like the other doctor, didn’t know exactly what it was. She decided it would be best to drain it there in the office. It wasn’t a lancing, all she did was poke it with a needle, squeeze out the drainage, and cover it with gauze (no wound packing). That was still an extremely painful procedure. I was sent home with another course of antibiotics and my GP told me that this would hopefully be the last of it. But I knew it wouldn’t be.
The cyst came back 3 weeks later. My GP decided to leave it to drain on its own, which I was grateful for. She also recommended I get an ultrasound to get a better look at what was going on. She said she could see what looked like a fistula, so she referred me to a GI specialist. The GI all but formally diagnosed me with Chron’s Disease, and I left that day thinking I had a perianal cyst. The GI was going to schedule a joint-procedure with a general surgeon. She would do a colonoscopy to confirm/rule out Chron’s and he would do an open excision of the cyst. I was in tears for a lot of the following few days-I was terrified of having this disease after a perfectly healthy 18 years and terrified of having an open wound that would need to be packed twice daily.
This was all happening in the spring of my senior year of high school. What was supposed to be a fun, exciting time of being with my friends and enjoying end of the year festivities, ended up being a very difficult time for me both physically and emotionally. The toll this takes on you is intense.
About a week or so after my visit with the GI, I met with the general surgeon. He took one look at it and declared it a pilonidal cyst, not a perianal. I let out a huge sigh of relief. Not only did I not have Chron’s, he also said I wouldn’t need surgery right away. I know many people say to just get it done ASAP, but again, I was weeks away from graduation and a trip abroad (a trip that I had been working so hard for and counting down to for nearly a year). The timing was just awful. The surgeon was very hopeful and optimistic, and told me that with the right care there was a chance the cyst would go away on it’s own. He said that if it did continue to come back, surgery would be necessary, but he was very considerate of me and the plans I had for the next couple of months.
One week after I met with the surgeon, I had a small flare up. Then another one three weeks after that, during my last week of high school, my graduation party, and graduation ceremony. I held off contacting my surgeon, however, because I was so determined to go on my trip. The day before I was supposed to leave I started to feel pain. I am very stubborn, so I boarded the plane the next day anyway and hoped for the best. Luckily, the dull pain subsided after a couple of days and I was able to enjoy my trip.
I continued to have intense flare ups about every 3 weeks or so. Towards the end of the summer, I decided to finally go back to the surgeon. I was becoming depressed, and knew I would continue to go downhill if I didn’t take care of it. College was on the horizon, and dealing with this 3 hours away from home in a dorm is not something I wanted to do. At all. I met with the surgeon again and then had surgery the next day.
I had the Cleft-Lift surgery, which is said to be the best option for effectively getting rid of pilonidal cysts. The cleft lift takes out the cyst and flattens the natal cleft with the intention of not giving the cyst an option of returning. It still does in some people, but the cleft lift has the lowest recurrence rate. It was an outpatient procedure, so I was able to go home the same day. My parents and I arrived at the hospital at 9am, but my surgery was pushed back to about 1:00pm because of an emergency with another patient. After waking up from anesthesia and making sure I was good to go, I left the hospital at about 6:30pm that evening.
The following days were easier than I anticipated. I was expecting to be in a lot of pain, but I had absolutely none. I did take cycles of ibuprofen and tylenol, but only preventatively. I also took prescribed narcotics, but only twice and also as a preventative measure. Both my parents and I were amazed at how smooth my recovery went. I had a drain in, but that was more of a nuisance than uncomfortable. I had to clean the scar every night with betadine and empty the drain/record the amount. The drain was taken out by my surgeon on Monday (surgery was the Thursday prior). Throughout the next week I was a little uncomfortable, but nothing I needed meds for. Overall, recovery continued to go very well and I was even able to work for a few hours that Saturday. Stitches came out yesterday (2 weeks post-surgery) and I’m still feeling great. I move into my dorm tomorrow and I’m keeping my fingers crossed that I am in the clear! I still have to wait a few weeks to exercise or have any strenuous activity. Class starts Monday, so I’m hoping that it won’t be an issue to sit for long periods of time. I have a follow up with the surgeon in October, so doctor visits are getting few and far between! Im hoping it stays that way. I know there is a chance my pilonidal cyst could come back, but I am choosing to be optimistic. I can already feel a huge difference- I am able to sit and lay on my back and put pressure on my tailbone without the pain of a cyst. It is crazy to see what I took for granted before this all started.
I hope my story can show others out there that you aren’t alone in this. This website is absolutely wonderful and provides so much support. I was so lost when this all started, I wish I had found this site sooner! If you are dealing with this, my biggest advice to you is find a doctor/surgeon who has experience with pilonidals and knows what they’re doing. Also, look in to the cleft lift procedure! It’s only been a couple of weeks, but I’m certain this was the best decision I could have made. I’m feeling great and my spirits have been lifted. Best of luck to you all!”
Just about 2 months later, it came back. This time I went to my regular GP. She, like the other doctor, didn’t know exactly what it was. She decided it would be best to drain it there in the office. It wasn’t a lancing, all she did was poke it with a needle, squeeze out the drainage, and cover it with gauze (no wound packing). That was still an extremely painful procedure. I was sent home with another course of antibiotics and my GP told me that this would hopefully be the last of it. But I knew it wouldn’t be.
The cyst came back 3 weeks later. My GP decided to leave it to drain on its own, which I was grateful for. She also recommended I get an ultrasound to get a better look at what was going on. She said she could see what looked like a fistula, so she referred me to a GI specialist. The GI all but formally diagnosed me with Chron’s Disease, and I left that day thinking I had a perianal cyst. The GI was going to schedule a joint-procedure with a general surgeon. She would do a colonoscopy to confirm/rule out Chron’s and he would do an open excision of the cyst. I was in tears for a lot of the following few days-I was terrified of having this disease after a perfectly healthy 18 years and terrified of having an open wound that would need to be packed twice daily.
This was all happening in the spring of my senior year of high school. What was supposed to be a fun, exciting time of being with my friends and enjoying end of the year festivities, ended up being a very difficult time for me both physically and emotionally. The toll this takes on you is intense.
About a week or so after my visit with the GI, I met with the general surgeon. He took one look at it and declared it a pilonidal cyst, not a perianal. I let out a huge sigh of relief. Not only did I not have Chron’s, he also said I wouldn’t need surgery right away. I know many people say to just get it done ASAP, but again, I was weeks away from graduation and a trip abroad (a trip that I had been working so hard for and counting down to for nearly a year). The timing was just awful. The surgeon was very hopeful and optimistic, and told me that with the right care there was a chance the cyst would go away on it’s own. He said that if it did continue to come back, surgery would be necessary, but he was very considerate of me and the plans I had for the next couple of months.
One week after I met with the surgeon, I had a small flare up. Then another one three weeks after that, during my last week of high school, my graduation party, and graduation ceremony. I held off contacting my surgeon, however, because I was so determined to go on my trip. The day before I was supposed to leave I started to feel pain. I am very stubborn, so I boarded the plane the next day anyway and hoped for the best. Luckily, the dull pain subsided after a couple of days and I was able to enjoy my trip.
I continued to have intense flare ups about every 3 weeks or so. Towards the end of the summer, I decided to finally go back to the surgeon. I was becoming depressed, and knew I would continue to go downhill if I didn’t take care of it. College was on the horizon, and dealing with this 3 hours away from home in a dorm is not something I wanted to do. At all. I met with the surgeon again and then had surgery the next day.
I had the Cleft-Lift surgery, which is said to be the best option for effectively getting rid of pilonidal cysts. The cleft lift takes out the cyst and flattens the natal cleft with the intention of not giving the cyst an option of returning. It still does in some people, but the cleft lift has the lowest recurrence rate. It was an outpatient procedure, so I was able to go home the same day. My parents and I arrived at the hospital at 9am, but my surgery was pushed back to about 1:00pm because of an emergency with another patient. After waking up from anesthesia and making sure I was good to go, I left the hospital at about 6:30pm that evening.
The following days were easier than I anticipated. I was expecting to be in a lot of pain, but I had absolutely none. I did take cycles of ibuprofen and tylenol, but only preventatively. I also took prescribed narcotics, but only twice and also as a preventative measure. Both my parents and I were amazed at how smooth my recovery went. I had a drain in, but that was more of a nuisance than uncomfortable. I had to clean the scar every night with betadine and empty the drain/record the amount. The drain was taken out by my surgeon on Monday (surgery was the Thursday prior). Throughout the next week I was a little uncomfortable, but nothing I needed meds for. Overall, recovery continued to go very well and I was even able to work for a few hours that Saturday. Stitches came out yesterday (2 weeks post-surgery) and I’m still feeling great. I move into my dorm tomorrow and I’m keeping my fingers crossed that I am in the clear! I still have to wait a few weeks to exercise or have any strenuous activity. Class starts Monday, so I’m hoping that it won’t be an issue to sit for long periods of time. I have a follow up with the surgeon in October, so doctor visits are getting few and far between! Im hoping it stays that way. I know there is a chance my pilonidal cyst could come back, but I am choosing to be optimistic. I can already feel a huge difference- I am able to sit and lay on my back and put pressure on my tailbone without the pain of a cyst. It is crazy to see what I took for granted before this all started.
I hope my story can show others out there that you aren’t alone in this. This website is absolutely wonderful and provides so much support. I was so lost when this all started, I wish I had found this site sooner! If you are dealing with this, my biggest advice to you is find a doctor/surgeon who has experience with pilonidals and knows what they’re doing. Also, look in to the cleft lift procedure! It’s only been a couple of weeks, but I’m certain this was the best decision I could have made. I’m feeling great and my spirits have been lifted. Best of luck to you all!”