Happy/Hopeful ending - 6 years no issues, without surgery! - My story


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Hello All,

This community was a wealth of valuable information when I was going through my flare up in 2015 and I've been meaning to give back.

Based on what I read on these boards back then, I was convinced that Pilonidal diseasewas going to be a chronic condition for the rest of my life, and that i would need surgery. I’m happy to report that after my first and only major flare up 6 years ago that required surgical drainage, that has not been the case, and I have every reason to believe I’m in the clear.

I’m a 36 year old female, with some dark, course body hair in the tailbone region.As a teenager I often experienced minor flares which I thought were “pimples”, and at my mothers suggestion dealt with them by pressing hot damp face cloths in the area and putting damp tea bags on the bump to draw in the moisture (I do not recommend this!). Without much investigation, these small flare ups would go away on their own within a week.

When I was 30 I went to an amusement park and rode on many bumpy rides, as well as flumes/water rides, spending a large part of the day in wet clothing. The bouncing, the moisture, and the hair in the area all contributed to a cyst that felt like my usual “pimple”. I washed the area and assumed it would go away as usual, but it became worse and extremely painful where I couldn’t sleep. I figured the infection was more than i could treat at home so I made a doctor appointment

I went to the doctor and explained that i felt it was an infected ingrown hair. After poking around she downplayed it and said that it was really small and likely not infected, and didn’t recommend antibiotics but would prescribe them i wanted. Doubting myself, I told her no antibiotics and went home.

After googling for a solution, i read about cysts caused by ingrown hairs and decided to try and push the fluid out. I pressed on the area (upper cheek close to the tailbone) and after some time, to my horror, pus was released from a completely different area than where I was pressing. I checked in a mirror and realized i had a substantial amount of scarring along my cleft, along with tiny duct holes. At this point i realized that I definitely had a pilonidal cyst and read these message boards in horror for hours.

Unfortunately the pus I had released was not the end of it, and the next day the infecton was full blown and i had a bit of a fever, I could not sit in any way without feeling the massive painful lump. It was now the weekend and I couldn’t reach my doctor to get the antibiotics prescription. I did not want to go to the ER based on the horror stories i had read, so I made an appointment with a pilonidal specialist in Massachuseets that was recommended from this website and was known cleft lift method (Dr. Reinhorn). They couldn’t see me right away but I was able to get antibiotics prescribed, which helped with the pain immensely.

By the time I met with the new doctor a couple days later (i couldn’t see Dr. Reinhorn that day but I met with one of his associates), the antibiotics had cleared up all my pain, but the cyst had become so large that it felt like I was sitting on a water balloon, and had to lean on one buttcheek while sitting. The doctor confirmed it looked like Pilonidal disease, and i asked if it would be possible to get a cleft lift surgery (given what i had read on all these forums, i didn’t want this to inevitably recur i just wanted the surgery right away if that was going to be the only fix). He told me I could get a consultation, but we would have to drain the cyst and clear the infection before we could even think about surgery.

Despite feeling no more infection pain, and receiving local anesthetic injection, tthe draining was one of the most painful things i ever experienced. I was lucky to have a friend come along and let me squeeze her hand during it. My friend and the doctor tried to lighten the situation as much as they could. Once the cyst opened, the doctor marveled at how large the cavity was. My friend said “how big is it?” and he said “like an egg”, she said “What kind of an egg?” he said “A large one”.

After they drained it, it was packed with a very long string of gauze with one end poking out so that I could access it. He explained that the dressing would not require any repacking (which i was grateful for, given what i had read that process was like) and that after a certain timeframe i could pull the string out myself, very slowly. I was given tylenol and asked if I wanted a painkiller prescription, and i declined as I was feeling okay and i tend to be very careful with those kinds of medicines.

That was the wrong decision. The anesthetic wore off as soon as i got home, and i was out of my mind with pain. Luckily the office was still open and I called asking if I could change my mind,. They wrote an rx and allowed me to have a family member pick up the painkillers, so I only had to wait a couple of excruciating hours. i spent the next day or two lying on my stomach watching television in a haze.

When it came time to pull the string out, I attempted to do it under running water in the shower (i believe the doctor had instructed this but i can’t remember). It was a completely agonizing process, and in hindsight I should have had someone around (I live alone) because there were times i thought i might pass out due to the pain. It felt like it could have been a task given to someone in one of the Saw movies. The string was several feet long and it took me 3 or 4 attempts over the course of a couple hours to finally get it out as i needed a break in between from the pain.

I don’t remember my follow up appointment but I think the doctor said everything basically looked like it was healing pretty well. I made a consultation for surgery with Dr Reinhorn, and met with him a couple months later. He seemed surprisingly optimistic and suggested that surgery might not be necessary, given that i had only one large flare up in my life that required drainage. I understood but I really didn’t ever want to go through that again. I also explained that in a month I was going on a two week trip for scuba diving on the other side of the world on a very remote island, and given that i would be spending 2 days on airplanes, getting wet and riding on bumpy speed boats I was really terrified of another flare up while I was away where i couldn’t get a high level of medical care for it.

He gave me the following advice:

-Keep the area clean always, using Hibiclens brand soap

-Keep the cleft area shaved. I had been scared to do this because i thought it might trigger ingrown hairs, and i would often have irritaion after shaving that area, but he assured me it was much worse for me to leave it hairy.

-Use alcohol wipes on the area, especially if it feels like a flareup is starting. He even held the wipe up in front of me and said “You Cannot Overuse These!”. He said to keep them handy especially while I was going to be doing the water activities.

I’m happy to say that for the next 5 years, all of this advice has prevented another serious flare up. In addition to what he recommended, I also:

-Used a brand new, clean towel for that area every time, after every shower.

-Gently exfoliate using the finger of an exfoliating glove or a coarse washcloth, usually right before shaving and a day or two after. Used a fresh washcloth/glove every time, nothing that ever sat in the shower without being washed, no sponges or loofahs. I shaved wet using the hibiclens. I shaved maybe once a week, if i let it go any longer than that I would usually get pinches and tingling that let me know it was urgent that i shave again and a flare up might start.

-no soaps besides hibiclens. Did this step at the end after shampoo/conditioner and any other soaps on my body to ensure it is all rinsed from the area.

-Goes without saying, but new underwear every day, as well as changing pairs before bed.

-For flare ups that the above didn’t seem to help, I used the alcohol wipes, as well as some triple antibiotic ointment. I dabbed some of the ointment onto a cotton pad (one that is not too fluffy/fragile, don’t want any debris in the area) and smeared a thin film of it around the painful area. Rarely i would wedge the cotton pad there for a couple hours, but made sure to wipe it clean with the alcohol pads later on.

-Kept with me at all times: alcohol wipes, cotton pads, antibiotic cream and new underwear. It was a lifesaver during work and on vacations. Kept alcohol wipes right next to me in bed, so if I felt any pain or tingles I could wipe it right away without the temptation of just falling asleep.

Any "flareups" I mention have been very minor, low pain, size of a pimple and never lasting more than a few days, maybe 3-4x/ year max. I noticed that drainage holes in my cleft have come and gone throughout this time, so i suppose there may have been activity I just don't feel or realize.

Finally, I had laser hair removal for the area this year. I’m halfway through treatments but the hair is virtually gone already at this point.Thus far, I've had no itching, twinges, or anything indicating a cyst. Despite the methods I listed working for me for the past five years, I wanted the extra reassurance.

I hope this share was helpful. I realize that everyones condition is different and what worked for me might not work for everyone I don’t know what kind of content has been posted in the past 6 years since i first consulted the message board, but I wanted to share my story to inspire some hope, because at the time there weren’t many happy endings on here that didn’t involve a surgery, and implied years of chronic issues.

I also highly recommend dr. reinhorn in massachusetts. He was warm, kind and very knowledgeable.

I’ll try to make sure to check back in a timely manner and i’m happy to answer any questions anyone might have. Hope you are all doing safe and well, do not despair.

-Egg sized