My experience so far!

Kris10920

New Member
Hi everyone! This website has been so helpful to me over the past few months (It’s so hard to find anyone else in real life who knows much about this bizarre and embarrassing condition) so I wanted to at least share my entire experience so far. The more stories we have the better.

For reference: Today is June 9, 2017. I’m a 28-year-old female and not hairy in the slightest. I’m a few pounds heavier than I’d like to be but definitely not obese. In the year before my first cyst, I had gone from a very physical job to sitting at a computer desk full time.

In late February 2017, I developed my first Pilonidal. I have occasional cystic acne, so at first I just assumed it was a large pimple in a strange area. Within two days, however, the cyst had grown rapidly and I could barely sit at my desk or drive a car without crying from the pain, so I did a google search and quickly realized this was what I had. I had never even heard of the condition and spent the entire night reading about surgeries and obsessing over my misfortune.

The next morning I called my GP and had an appointment by the afternoon. She confirmed my fear, and despite it being huge and very, very painful, she didn’t see a head to the cyst yet and decided it was still a little too firm for her to break it in-office. She prescribed me an antibiotic and Vicodin, and told me to go home and put a warm compress on it and/or take hot baths.

I went home and spent the night with an on and off hot compress and tried to go to bed, but I woke up around 3am with the most agonizing pain of my life. I could barely walk or move, so I decided to go the emergency room. The ER doctor also felt like it wasn’t quite ready to be broken yet, but he could see how much pain I was in so he and the nurse lanced the cyst. The lancing was BRUTAL. The nurse held my hand while they squeezed out the puss for what felt like forever. Even with the local anesthesia, each push was insanely painful. Afterwards, the doctor said he was glad they did it because there was a LOT of puss in there. I could see why my doctor didn’t want to do it in her office. It’s a pretty horrible procedure. They packed the wound and sent me home. The lancing instantly decreased the pain. I had some discomfort for the next two days from the wound, but the pressure was gone and immensely better. I saw my doctor again in two days, she unpacked the wound (which I took care of and healed very nicely over the next few weeks) and she referred me to a general surgeon.

At this point I was beyond heartbroken over the whole situation. I was in the process of preparing a move from New Jersey to North Carolina in the next two months and I just didn’t have the time for a big, invasive surgery with a painful recovery. On the flip side, I was in complete terror of another flare up and I felt trapped and alone. I couldn’t believe this had happened to me out of the blue.

I went to the appointment with the general surgeon in March. He told me I only had one pit and that the wound had healed nicely. He seemed knowledgeable about these and said he does do the surgeries, but that they are pretty invasive with awful recoveries, and don’t always fix the problem. It seemed like he was only familiar with the older excision surgeries. His opinion was that given my age, gender, and lack of back and/or butt hair, my chances of another occurrence were very low. He mostly did the surgeries for younger boys who came in with multiple flair ups a year. His suggestion was to keep the area clean (he actually told me to use wet wipes) and he also prescribed me a topical antibiotic to use three times a day for the next few weeks to make sure the oral antibiotics I took after the lancing were enough.

In the moment, I was thrilled by this news. Not needing surgery meant I could relax and start preparing my move to NC. I saw the doctor again for a follow up in a month and he told me I could use the topical antibiotic preventively whenever I though I would be driving in a car for a long period of time or flying, and if I ever felt a tingle or a bump coming on, I could use the topical as well and it might get better.

In the next month, however, I spent hours reading online (on this site especially), and decided this just didn’t feel like….enough. The more I read, the more I was convinced that a flare up was inevitable and I didn’t want to live my life with (excuse my language) a ticking time bomb on my ass! The Pit Picking procedure seemed like a no brainer to at least inquire about, so using these message boards, I searched for a doctor in the Triangle Area of NC familiar with it, given that the surgeon in NJ didn’t even mention it or the Cleft Lift. I saw two nice recommendations for Dr. Sankar Adusumilli in Raleigh and made an appointment for the earliest date he could take me, June 9, 2017. I moved on April 28th and had no problems with the eight-hour car ride from New Jersey. At this point I was still obsessively using the wet wipes and antibiotic cream everyday.

Flash forward to Monday, May 22. I woke up and felt a tiny bump over the scar (until then I could not feel anything when I touched the area at all, just flat skin). The bump was small, but it was enough to put me in complete panic mode. My boyfriend looked at it and confirmed that the entire scar area looked very red, and as the day went on, the bump became tender to the touch. I immediately called Dr. Adusumilli’s office to see if they could take me any earlier, but they unfortunately had no open appointments and put me on a waiting list. I was devastated. The original cyst went from 0 to ER in less than 4 days so I prepared for the worst, and given that I was new to the area, I didn’t even have a general doctor yet.

I realized, however, that I had a about a 9 days supply of antibiotics in my cabinet, given that the ER in NJ had changed my general practitioner’s prescription from Amoxicillin to Keflex after the lancing and I had kept the old bottle just in case. I took the antibiotics twice daily and slathered it with the antibiotic topical. I have no idea if it was ever going to get worse or if the antibiotics actually kept the infection at bay because I caught it early enough, but the bump lasted for about three days without growing and by Friday, was completely gone. I was shocked.

Cut to today, June 9. I had my appointment with Dr. Adusumilli. He examined the area and saw two pits, one smaller I believe. I’m not sure if the second was always there and the first surgeon didn’t see it, or if this is new since March. Regardless, Dr. A said the area looked and felt very healthy when he pressed the entire area with his hands. He didn’t feel any new inflammation starting and it seemed very under control. He reiterated that at my age and with the lack of hair, I still have a slim chance of chronic flare ups. He suggested keeping it clean and most importantly DRY. He told me that the wet wipes and antibiotic ointment that the other surgeon suggested were actually unnecessary and he has never seen any studies that suggest topical antibiotics would do any good. It’s actually quite possible that the moisture from using it too much are what caused the irritation I had a few weeks ago. Go figure.

We then discussed the Pit Picking, which he says is easy and the best way to deal with this in a case like mine. BUT, he said he prefers to do them when there is a flare up or inflammation. He didn’t think it was necessary to do it just yet. He told me anytime I felt any kind of discomfort I could call and they would take me immediately and he would do it (he even spoke to the front desk and made a note in my file so I wouldn’t have to worry about waiting while it got worse). In the mean time, he said I really didn’t have too much to worry about in comparison to what else he sees, even on vacations – just keep it clean and dry if I do an activity that makes me sweaty.

So that’s where I am now. To be honest, I’m kind of disappointed that he wouldn’t do the procedure preventatively right away, especially given that some other people on this site have seen Dr. A and had it done without waiting – perhaps their cases were different? I don’t remember reading anywhere that the Pit Picking wasn’t necessary right away – Is this reasonable? I don’t love the idea of waiting for another potential flare up. But I do feel a comfort now that there is somewhere I can go at the first sign of a problem, and that the Pit Picking is his first choice. He was very nice and seemed very knowledgable about the condition.

Hope this was helpful for anyone just starting out with this problem like I am, and I would love some feed back from people with similar stories.
 
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Pilomaniac 904

New Member
I am new to this site and can relate to your story since I am a female and only a year younger. I believe it was on-set while constantly sitting and studying in college and then also now having a desk job that requires sitting for 8 hrs. Anyway, my first excruciating flare up happened May 1st 2017. I had noticed the bump but didn't think anything of it until it gradually got bigger and bigger over the months leading up to May 1st when I couldn't even walk...That is when I had my first lancing and don't believe it was as in depth as most peoples - it was more like a poke to drain and the surrounding skin was just inflamed and infected - which still hurt and was pretty embarrassing.

Honestly, I am scared to have surgery and have seen some ugly scars from the most recommended surgery, a cleft lift and definitely do not want a surgery that leaves me wide open down there.. Its now August and I did see a surgeon who was all about surgery however it was expensive and after reading these forums I'm glad I postponed before going through with it as he made it seem like I would be recovered in a few days. So do some research before just opting for surgery.

I am still trying to naturally heal it. It's a life changing experience and hoping for a blessing within this curse. It has made me be more active and health conscious and although I am already OCD now I have become obsessive about constant cleaning and seeing which natural remedy works for me... although surgery is seeming more inevitable ..I have about 4 small pits and a sinus at the top of my tailbone which drains. I started mixing baking soda and vinegar (which I found on this site) and my sinus was closed and just about healed (I also go to the beach and saltwater seems to help) but then once it was just about closed it got infected and filled up with pus so I just broke the skin to relieve the pain....My mom will ask me how I am doing and now I am so use to the pain the only response I have is "annoyed and frustrated" like many others on this site. I hope I can keep it under control until I can afford surgery and have found the best surgeon. I wish there was more awareness and research going into this especially seeing how many people suffer from this "disease". :(
 
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