Personal Stories Archive

Back to Previous Page

Archive April, 2010 to June, 2010


Date: June 24, 2010

Story

My pilonidal experience began 3 weeks after giving birth to my first child. I started having horrible pain around my tailbone area, but I just dismissed it as more aches and pains post childbirth. It got so bad that I couldn't sit, stand or lay down without crying, and I was convinced that I broke my tailbone during childbirth. My mom took a look and noticed a raised area but said that it didn't really look that bad. Luckily, my aunt knew about pilonidals and told me that I needed to get it lanced ASAP. I had no idea what I was in for. I can honestly say that the lancing and draining of the cyst was the worst pain I have ever experienced....far worse than childbirth. I actually passed out from the pain even though I had been given local anesthetic (and keep in mind that I had just experienced a natural childbirth and it was far worse than that). For the next three weeks, I had to endure the daily packing of the open wound while trying to breastfeed and take care of a newborn.

Anyway, I started looking on this site and realized that I probably needed to have surgery. The doctors suspected that since I had never had any issues in the past, it was probably somehow related to the pregnancy since I had been on bedrest for a month and had carried my daughter extremely low the entire time and had terrible stretch marks around my low abdomen and lower back. All I knew was that I never wanted to experience that pain ever again, especially not during my next pregnancy. I had consultations with 4 different surgeons (2 general surgeons and 2 colorectal surgeons) and each one gave me a different "solution". The first said full excision with open wound packing (general surgeon), the second said no surgery right now until it comes back a second time (general surgeon), the third said to extend the exisiting incision from the lancing to make the open wound cover the entire abscess and let it fill in (colorectal surgeon) and the fourth said to have a full excision with a modified cleft lift and close it up with internal stitches and fibrin glue (colorectal surgeon). I went with the fourth surgeon since he was listed on the Surgeon Hall of Fame on this website, and I am SO glad I did. I had absolutely zero pain after the surgery and didn't have to deal with the open wound packing. He prescribed me some pain pills but I never even needed to take one. My incision was pretty large....about 5 inches long...but I didn't even have to have a dressing over it since it was protected by the fibrin glue. I did have a JP wound drain in for 10 days post op, which was the worst part about the whole experience but was absolutely necessary in order to get rid of the drainage without having to deal with an open wound. The drain was nothing compared to the packing I had previously dealt with from the lancing, though.

I am currently 4 weeks post op and am as good as new. I can take bathes, go swimming, and sit without any pain. I HIGHLY recommend getting the surgery and using a colorectal surgeon, preferably from the list on this website (mine was the only one listed in San Antonio). My surgeon is extremely confident that I will never have to deal with a pilonidal ever again...in his last 30 years of performing this procedure, only 2 patients have ever had any issues with recurrences and those were patients that had had several past botched surgeries. In my opinion, the fibrin glue/wound drain method is absolutely the way to go and the key to success is using a good surgeon!


Date: June 24, 2010

Story

When i was 16, i noticed something that was really annoying on my bum crack. and i thought it was just one of those stupid pimples, but it hurt more and more as time went on .. so i just decided to take a mirror and pop it myself. and after that it was fine, the swelling went back down... didnt think anything of it and went on with life for about a year and a half until i noticed it coming back, but in the same place.

so this time i was confused and tried popping it again, but i failed. i made myself pass out because i actually stuck the needle in the abscess hole itself so .. haha. i went to see the doctor and he pushed the rest of it out ( it was painful, but comfortable because i knew he knew what he was doing..) and he prescribed me Keflex and told the pharmacist no substitution.and booked me an appointment for day surgery to close up the gap... i just took er easy and laid in bed and took my pills every 8 hours and in about 4 days it started to feel better. and then a week till it was completely gone. now im just waiting for my surgery to happen . ive just never had surgery before .. so im kinda freakn out.. if someone can tell me what happens or what i can expect .. recovery wise too.. thatd help me out alot, if you can contact me at rawr dot green.dino at hotmail dot com youd be a great help!


Date: June 18, 2010

Story

I am going to try and give as much detail and insight I can into this (surgery & recovery). Currently, I am on Day 8 and couldn't be more pleased. I will update this again as I heal.

First off, once you have identified you have a pilonidal cyst that has developed a tract, go see a surgeon. I've tried doing research on healing a pilonidal cyst naturally and unfortunately there doesn't seem be a cure. I absolutely HATE having to turn to surgery, after I had a botched hernia repair surgery, I have become very negative towards the idea of surgery unless absolutely necessary. Unfortunately, in the case of a pilonidal cyst, it can only lead to worse off with more time. So, suck it up and go see a surgeon. But first, do your research! One of the most important aspects of surgery, is picking a talented surgeon. By now, there are quite a few doctor review sites online, where you can get other feedback, but also see there background info--i.e. school, experience, etc.

After choosing my doctor and surgery date, I arrived early in the morning for a pre-screen. FYI, i am 28 yr old male in fairly good health. I was put under anestetia and the surgery lasted roughly 20 minutes according to the doctor. I was out of the hospital with 2 hours after that. I was fortunate in the size of the excision, it was roughly 3 inches long, 3/4 inch wide, and 1.5 inches deep. The first 3 days, I did not experience any pain--little did I know that its common for doctors to use a slow-release anestetia. Instead, I thought I had the pain tolerence of a champion! Though, once the 4th day arrived...the pain set in. For the next part, I will try and go into detail about different aspects of post-op and my experiences with them.

Cleaning the wound:
From all the literature I have read, it seems the most painless and effective method for keeping this thing clean and disinfected, is wound saline wash spray and frequency! Twice a day is a must. I've had experience with a couple different methods of cleaning (thanks to two different nurses on my first 2 days out). The first nurse initially removed the gauze, sprayed the wound with a "wound cleanser" (not saline spray), it didn't burn, but then again I was still numbed up down there I think. Then, he took a prep solution (10% iodine solution) and cleaned it out with a q-tip. He then left it wet and proceeded to put a wet gauze in. The next nurse just used a saline spray, but then got in their with a q-tip and wiped it out as well. Following that, he put in a wet guaze. My preferred way is quite simple, remove the gauze, get in the shower. It's up to you whether you want to let the warm water run into the wound or not. Personally, i do not (I don't think its necessary and given the amount crap in city water, don't really think its the best cleanser!), but instead just clean very well aruond it to keep the vacinity area clean. Then, I have my wife (thank goodness for a supportive spouse), spray my wound very well with the saline spray. The saline wound wash is by far the BEST cleanser in my opinion. Not only does it not hurt at all, but the pressure it releases will clean out any debris inside the wound. Be prepared though, each can runs about $6, and you should be using at least 1 bottle every 1 to 2 days. After the cleaning, go relax and let the oxygen hit it for about 15 minutes. Once again, the saline spray is just awesome becuase it is so effective and pain free. As long as you keep it clean and do it twice a day, you shouldn't need any sort of additional cleansers (i.e. no neosporin!). Now onto the worst part...Gauze.

Packing & Dressing:
This is where the pain is. The worst pain I experienced was in the removal of the gauze. It became an unbearable and dreaded experience. Well, thankfully, I learned a couple tricks along the way. Once again, I had experience with a couple of different types of gauze. First, I had a thin packing strip made by Kendall put in (spray it with saline first and soak it). This was okay but was very painful removing considering there was about 2 feet of it inside the wound. The second and worst option was Johnson & Johnson microsorb gauze. Do NOT use this gauze for packing. To get this out without ripping out all my newly formed tissue inside the wound and bleeding everywhere, I tried multiple methods: soaking the packed gauze with saline, soaking the gauze with a hot towel, etc. Eventually, it boiled down to: spray the heck out of the gauze saline, wait 5 minutes, start removing the gauze slowly--very very slowly--. Once you hit pain again, spray the gauze more with saline...wait, and try removing it very slowly again. Well, finally I realized this gauze was over-absorbing inside the wound, and essentially glueing itself to the wound. So, then, I stumbled upon a great product! Kendall Curity AMD gauze dressing. This puppy comes out like a charm!! Something about the texture absorbs the residue without sticking to your wound. Now, I just spray it down well with the saline spray, slowly remove it, and waa-laa, no pain at all.

When it comes to repacking the wound, don't overdo it. There is no need to shove as much gauze in as possible. All you are trying to do with the is keep the top from closing in. Spray the gauze well with saline, and gently press it into the wound with a q-tip. I use abut a 4" x 4" peice as of right now, with not necessarily all of it inside the wound.

For the dressing part, we use about 3 to 4 pieces of 4x4 gauze (once again, I prefer the Kendall AMD gauze, I feel it absorbs the exudate, while still allowing the wound to breathe). Finally, we use the key peice of dressing: a maxi-pad. Yes, this is not masculine at all, but they work fantastic, especially if you are going back to work and don't to worry about it leaking through.

Next, and very important part: tape. You will hate tape by the 3rd day. We tried the tape given to us by the hospital (I think it was a general bandage tape). Finally, we got Mefix Self-Adhesive fabric tape. This stuff is fantastic. My nurse ordered it and I highly recommend getting it before hand. The other tape I used left my skin raw, irritated, and became very painful when pulling off. This stuff comes in a large roll and you cut the amount you need.

Diet:
This is probably one of the most important steps in healing. Eat right! This equates to fruits, veggies, vitamins, and protien. My wound is definitely healing faster than expected, and drainage is quite a bit, and by quite a bit, I am soaking through 4 gauze packs and into the maxi-pad (suggesting constant fast healing going on). I would recommend 2 protien bars a day, 2 servings of fruit, 2 servings of vegetables, and vitamin supplements. I take a multi vitamin twice a day, 15mg zinc, and an EMergen C Immune Defense pack once a day. Apart from this, eat lots of good filling meals, the more calories the better. This way your body has plenty of ammo to combat against infections and speed up healing.

Finally, i will make note on what my activity levels have been. I did little to no activity the first 4 days (really just walking a little bit, laying down, walk a little bit more). My surgery was on thursday and I came back to work on tuesday (my job involves sitting). Since then, I have been working 9 hour days, with little issues. Just keep good posture and get a firm chair and you will be okay. Take occasional walks.

I will continue to update this with any new tips throughout my healing process. Hope you found my experience helpful. I know I have found everyone elses posts very informative.


Date: June 15, 2010

Story

As much as i loved this site for all the other information, the stories posted here from from other persons with "pc's" scared the heck out of me!!!

i have to post my and my 13 year old daughter's story to show a positive story. we are 7 days post surgery at this point, and i am still praying all continues to be well. my 13th year old girl (she is a little hairier than average) has not had any flare ups as far as it being infected, luckily, but has had drainage from her cyst for more than a year. which was when i first started noticing the light bloody discharge on her underwear. also, a slight odor. we had it checked out by her pediatician and she is the one who verified what i had already read about on web md. she prescribed antibiotics to see if it would change things which it didn't.this could have come up because of and been aggravated by her having to do sit ups on a hardwood floor for pe this year?.

from this point on i knew to check the site, almost daily, she would lay on her stomache and i would clean out a few hairs each time and then apply "aquaphore" to help soothe the irritation. so, a few months later we went to a surgeon and he looked at it and recommended we have it taken out. we waited a few months because i didn't know how long her healing process would take and wanted to do it after school got out for the summer.

after they recommended surgery i came back to this site for more info and that is when i noticed some posted pictures. i looked at them and just about changed my mind and had lots of anxiety about her having surgery..she is only 13!! that one with the huge hole that had to be packed and took months to heal was unbelievable!! the best thing that came out of me being so scared was that i did go back to the surgeon to have more questions answered. he put me at ease. luckily, we are near a children's hospital and had it done there. the only way to go if you are under 18!!!

on a side note, my daughter was born very preemie. at 26 weeks and was in the NICU for 2 months, don't know if this is a variable in this situation?.

on june 9th 2010 she had out patient surgery, i was so nervous i almost backed out that morning...i had horror stories of her being in so much pain and should i put her through this since she has had little pain up to this point. but i did understand that it would not go away and if it were to become infected that would be very painful, too. also, there was one bit of info from this site that also made my decision to continue with the surgery..it was that her immune system was constantly fighting this open wound and compromising her health.

she went into surgery at 1030am and was out at 1130am, the surgeon said it went very well, it wasn't too deep and he closed it up with 7 stitches. i have to say, if he had intially told me he was going to leave it an open wound and it would have be heal from the inside out i would have had to think about it alot more! the packing and wound cleaning sounded so challenging/painful for me let alone that my daughter would have be experiencing it all!!

i feel so much compassion for all the persons that are faced with that. we are now 7 days after surgery, she had 1250mg of tylenol alternating with 1200mg of motrin for the first 30 hours and that kept her just about pain free. she has been able to sit on her behind since the 2nd day. we brought her home at 4pm, she ate a bit and slept the rest of the first day. not so much the second and was back on her regular diet. yesterday she complained of alittle pain so we gave her more tylenol. she has showered every day and we are keeping neosporin on th stitches. we were able to take the original bandage of the second day. we go back in 8 days to have the stitches removed. i pray all continues to be well.

i just had to post this positive story especially for moms. thanks for the site. and will post with an update at a later time.


Date: June 07, 2010

Story

Just a quick story for you all. I am a 35 year old Canadian and I just had a Pilonidal Excision with Z-Plasty 3 weeks ago.

In May of 2009, the surgeon attempted to excide the cyst, it looked like it was a success but after about two month the cyst came back and it was worse than befor. The surgeon, tried to book me in again ASAP but due to work commitments (and fear)

I kept putting off the surgery as I really had no idea what he was planning for me. Anyhow, 3 weeks ago, I had the cyst completely removed via z-plasty and I work up in the recovery with a suction pump on. I carried the suction pump around for only 4 days before the surgeon removed it, and changed the dressings.

After a week, the surgeon removed all 7 staples but let the 7 stiches in for another week. At the end of week two, the stiches were removed and there was not too much pain, only when sitting directly on the incision site. Back at work after three weeks. The pain through the process was manageable for the first three days with narcotics and then only advil for the remainder of the time.

What supprised me, was the surgeon did it all from the surgery to the dressing changes......if you can find a good surgeon I reccommend you do. Also, z-palsty is the way to go, it reorients the direction of hair growth but unfortunately, it kind of flattens out your natal cleft.....no more string bathing suits for me....ha, ha. Good luck to anyone going through this.....the only to truly rid yourself of it is through surgery!!!


Date: June 03, 2010

Story

Hi, I am a 33 year old male from Egypt.. I began feeling a dull aching pain around the lower back/coccygeal area sometime around early April which I initially mistook for some sort of low back pain due to maybe some intense situps I had done at the gym on a hard surface..Two days later, the pain became intolerable and I started to feel a big hard, warm lump at the crack of the buttocks and a slight fever..I found it very difficult to sit, lie down on my back, or drive a car...I went to a general surgeon and his diagnosis was that it was either an ordinary abscess or an infected pilonidal cyst..He suggested that if it turned out to be an infected pilonidal cyst, only lancing the abscess at his clinic under local anasthaesia would not resolve the problem and it would recurr..Hence, he suggested that the better option would be to proceed to the hospital immediately, have the abscess lanced, and if a pilonidal sinus/cyst was found, it would be excised - all under general anaesthesia..

I was really surprised because this was my first encounter with the Pilonidal disease..Unlike many others on this site, I never had any symptoms or previous flare-ups and knew very little about this predicament..The surgeon informed me that any pain I would feel after the surgery would be much less than the pain I was feeling at the time...Being in extreme pain at the time, I proceeded to the hospital to undertake the surgery..The surgery went well and after 20 minutes the operation was over.. The surgeon informed me that he found a lot of ingrowing hairs inside and a sinus was excised using the marsupialization open excision technique and that I now needed to change my dressings and surgical gauze packing every day for 6-8 weeks at least until the wound healed from the inside to the outside...I was given Pethedine, went home, and for maybe 36 hours I did not feel any significant pain.

By the end of Day 2, extreme pain set in..After removing the surgical dressing, I discovered that I was left with a deep open wound that was 7 cm deep and 7 cm long..For the first 8 days, I could not bend over or lie down on my back..I could only tolerate sitting for a few minutes at a time and I could only lie down on one side or on my stomach..Driving was out of the question..I had extreme difficulty sleeping and whenever I would accidently turn over on my back in bed, I would wake up with excruciating pain..I started to take Brufen 600 3-4 times a day and this slightly helped ease the pain...However, the most painful activity that I had to endure were the dressing changes..Everytime the gauze was removed and a new one inserted, I felt as though a prickly needle was cutting through raw skin..Putting saline solution on the surgical gauze helped make the process slightly smoother but extremely painful nonetheless..

Days 12-14 were a turning point..I started feeling relatively better and the pain had noticeably subsided..I even started to go back to the gym and did a few very careful workouts with light weights or machines..Bumping up protein intake and consuming zinc and multivitamins helped speed up the healing process..I still however could not drive (and hence I could not go to work), lie down on my back, or sit down on any chair for prolonged periods..Walking had to be slow and by the end of the day I would sometimes sporadically consume one tablet of Brufen 600 to get a good night's sleep..

By the end of week 3, I could begin to resume driving, most other daily activities became easier and a bigger range of motion was tolerated..The wound was getting smaller every day and dressing changes became less and less painful..

By the end of week 5, I felt I could perform all activities with relative ease and only a small (maybe 1 cm) was left to heal..You tend to assume that since healing was very rapid at the beginning, the remaining cm should heal in no time..However, this was not the case and at times I had the feeling that complete healing will never occur..The last 1 cm left to heal probably took until the end of week 7 to totally close up so do not despair!

More than 52 days after my surgery, I must say that this website is awesome! Whenever I despair, I used to reach out to this website which was always rich with information, provided a useful expectations timeline, and made one feel that there are others feeling the same pain and sharing a similiar predicament..The professional and moral support that this website has provided me with was truely a blessing..Thank you!


Date: June 02, 2010

Story

i have posted here a few times... i had the surgery on april 30th...they left my wound open and placed a wound vac on the hole to suck up any discharge that was coming out. that was annoying but no pain. i had the vac on for about 3 weeks and 2 weeks ago it came off. the hole was still rather large, about 2.5 cm deep and 5 cm wide...

i went to the doctor today and he said everything looks amazing and he is very happy with the outcome...if you have flare up and keep getting them, then i would suggest getting the surgery ... i was in no pain at all after the surgery, just a little out of it from the anesthesia.


Date: June 01, 2010

Story

I'm a 19 year old male from Melbourne, Australia, my sinus was about 7cm down from my tail-bone. my first flare up with pain, was 26 July 2005(age 14) at which point i was living in New Zealand.

I went and saw the doctor a few times over the following weeks who put me through 3 courses of antibiotics then told me there was nothing more we could do about it. So i put up with it. to begin with it was only a small abscess, around 3cm in diameter. it got to the stage where it was flaring up monthly to a point where i couldn't sit without it being excruciating. so i simply pushed on it until it burst, and the pain when it burst was the worst pain Ive ever felt but it relieved it for a month or two, then id start again.

So a year ago i moved to Australia and was unemployed for around 8 months, and i decided to look up on the internet around 4 months ago to figure out what the damn thing was. so then i found this website. i read every possible thing i could find and then went down to my local Medicare clinic and told the GP what i thought it was and within 5 minutes he had referred me to a specialist. the specialist saw me for about 10 minutes, and all he told me was he was doing closed suture(at this point i was kicking myself for not printing the notes from this site).

so i was put on the waiting list and received a letter a month later saying they had a bed for me in 14 days. So i had it done and was kept overnight in hospital, which was great, i don't think i could've gone home in the state i was in either. i had the procedure on the Wednesday, home on Thursday, and stopped the morphine on Friday and stopped the Panadol on Saturday.

i was feeling great and so come Monday i was back to work. I'm a computer tech so it involves lots of driving and sitting down. the Tuesday i went to the doctors and had a checkup and dressing change. on the Wednesday i sat on the loo and my bandage split straight up the middle and i got a massive strike of pain. i turned and looked in the mirror and saw my bandage was completely red. So in shock i drove very slowly and carefully to the GP's office and they checked it out and said that my bottom stitch(i had 7) was not holding and that the wound had opened up and i had a fluid build up, they then managed to express some more fluid by pushing on the wound. they proceeded to pack the wound with a small wick.

i was not impressed at all as my specialist had not told me any of this might happen, this wick was terrible as the gap they had put it in was tiny. so this continued for 2 days and then i decided I'd had enough so the next day i went to the ER at the hospital and waited 5 hours before a surgeon finally got around to seeing me. he removed 2 stitches (Ive learnt surgeons don't care about pain at all) and widened the hole at the bottom of the wound. now the fluid he got out i would estimate at around 300-400 ml. now that scared me.

since then Ive been having it repacked daily at the GP's office and they've been great to me. Ive been having to take 1 endone tablet(morphine based) 30 minutes before i go to get it repacked. i had my stitches out today and its 13 days post op, the surgeon i saw told me to tell my GP's office not to pack it so tight(they were getting 1 meter of packing gauss inside.) he said 15cm should be more than enough, but i'm worried that might let the wound close midway or something, as it appears to be quite a large wound. i also seem to have begun to get a large buildup of fluid around the end of my tail-bone. its so painful now i cant sit on the couch, although for some reason i can sit on a normal computer chair fine. so right now i'm not sure how long this is going to take to heal, but ill be back to add the rest of my story on later.

I cant thank you enough for this website, it was amazingly helpful and had the information i needed. I'm sorry for dragging on a bit but i included everything i could think of.


Date: May 30, 2010

Story

I'm a 23 year old male from Canada. Just had the Closed Wound surgery 12 days ago and doing much better. I had flare ups over the past 6 months but never had a large "bump" like others are saying. After the surgery I was prescribed Oxy's and antibiotics for the first 7 days. Stitches came out on day 10, and I am returning to light work tomorrow.I totally recommened the Closed wound surgery, just make sure you take it easy for the first week or two following the surgery. A.T


Date: May 30, 2010

Story

I am based in Melbourne, Australia and thought I would share my experience with Pilonidal Sinus, as I've not really seen many Australian-based (recent) posts.

In retrospect, I think the first time I had a sinus was in 2005. I actually 'self-diagnosed' and thought it was a spider bite or something similar - a painful red lump which disappeared after a few days. Last year in July I was sitting on a bus on my way to uni and thought that there was a pain at the top of my natal cleft. Within 24 hours it had blown up to the size of half a tennis ball and I could barely even stand up straight - I was stooped over and had intense pain. I presented at my doctor, and having never heard of a pilonidal sinus, I was... in complete shock. I was actually completely distraught having been told that I would need to make my own way to the emergency department and arrived there on public transport about an hour later - the trip would usually take about 20 minutes. When I arrived at emergency I was told I would have to wait around 5 hours to be seen by a doctor and that if I could cope with it, I should return home and come back the next morning when it wasn't as busy. So I did. Big mistake. The next morning I was worse again and couldn't even get out of bed. I called a friend and with their assistance, I got to the hospital.

I was admitted to a ward and put on an antibiotic intravenous drip. Surgeon was unfortunately delayed for the next 48 hours and I was stuck in a hospital on Tramadol and Morphine as often as was medically-permitted. The pain was just ridiculously intense.

I was eventually operated on and the sinus was excised and the wound left open and packed. I got home about 24 hours later and was in a lot of pain, in addition to the fact that I had had a general anaesthetic.

The healing process was quite horrific. I had daily repacking dressings at my general practitioner's office. The staff made it all the more bearable, but it was just an awful experience as I found that it was so debilitating considering that every morning I had to go through the motions of having it repacked etc.

So after having had dressings etc for three months, I thought that I had seen the last of my pilonidal problems, but alas, my cyst has returned. I had a major infection around 6 weeks ago and consulted with my doctor who advised I would need a second surgery to remove the secondary matter which had reappeared. The surgeons at the hospital are trying to tell me that I should wait 6-8 weeks to have the surgery due to their waiting times, but I am set on having it done as soon as possible. The infection has now disappeared, but I still have a sinus tract and can't sit down without pain for longer than 15 minutes. My life feels like it is basically on hold until I can start the recovery process again, and I actually feel quite depressed that I now have to go through a second operation + recovery process again.

I have an appointment with a surgeon tomorrow and hope that all goes to plan and that very soon I will be back on the road to healing and hopefully never having to deal with this again.


Date: May 28, 2010

Story

Hi, I am a 19 year old female from Lucknow, India.

I first experienced a Pilonidal Cyst when I was 16 in Feb-Mar '07.At that time it was relatively painless, and subsided without anyone finding out what it was. It recurred in May '08 when it became acutely painful (with a lump- which I thought was my tailbone sticking out because of my slouching posture or something). The doctor and my family thought it related to the backbone and I consulted an orthopedic doctor. I had daily treatment too. Then it went away and we all thought we'd seen the last of it. Last year I had it again in Sep. '09. This time I searched and searched on the internet about 'tail bone problem' and 'coccyginia' until I stumbled upon an article about Pilonidal Cysts- first time I'd heard the word. So I was off to Wiki-search it. Well, Wikipedia has this upsetting image and the information was too precise. So I searched some more sites and became sure of what I had- and I didn't want to believe it. My brother and Mum praised me on my self-diagnosis, specially when the doctor agreed, but I was totally mortified on having this disease! Seeing as it is in a private area, and more so because it was a 'guy disease' and caused by too much sitting, too much sweating, and too much weight... It was really upsetting to say the least, and I don't even know how many people in India have this disease, one site said it mostly affected Causasians. And then the doctor recommended surgery. I still haven't had surgery, though this week (May '10) I'm sure it has returned albeit painless and no lump formed, maybe cuz I'm cleaning it at least twice daily (and now I think its subsided). I'm still embarrassed about this, every time my parents want me to come to the doctor. Right now we're deciding on a date for the surgery.

I'm really glad to have found this site. Its been really helpful and told me lots of things I wanted to know about what to do and expect before, during and after the surgery. All the details about the surgery were really informative, I understood being a Biology student myself. And the 'after surgery' part was very valuable info for me. I still don't know how to get rid of all this nervousness. Specially if I am to be incapacitated for about a month or more (or eighteen months!) and I don't know if I'll have the open or closed wound, how long will it take to heal... and I Should be worrying about admissions right now! I really have a lot on my hands and I don't want to be unable to walk or attend classes or sit without cushions! But if I am to be realistic, I should have this operation now instead of waiting for later. Of course I am afraid of recurrances after surgeries. Seeing my luck, well...

I still haven't read more stories from the archives, and have noticed people freak out after reading them, specially about infections and repeated surgeries. I have yet to do that. But thanks a LOT for keeping this site so well maintained and updated. Thanks for the special girls page. I expect to keep frequenting this site and share my surgery experience too (if anyone cares). Thanks so much!


Date: May 26, 2010

Story

I am a 36 year old male living in Albuquerque, New Mexico, United States.

I went in for closed-healing surgery yesterday. I first became aware of my PC about 6 years ago. At the time I had an office job and sat at my computer for 8+ hours a day, and I am convinced that this is a major factor in the PC developing. I first realized something was wrong at the movie theater - I felt a pain in my tailbone area and it was uncomfortable to sit as I always had.

I got home and felt around the area and noticed a bump. At the time, I simply thought it was a pimple. Sure enough, a few days later it drained and I thought the whole affair was over.

A few months later, the pain and bump returned, and it was at this point that I started looking on the Internet to figure out if it might be something more than a pimple. I came across pilonidal.org and concluded fairly quickly that I had a PC. However, the accounts of surgery scared me off, and I thought I would be able to simply live with it unless it got worse.

A few months later, I was promoted to a job that had me in the field, and I was sitting a lot less. Flareups continued, but were down to about once per year and were not a major factor in my life.

Over the past year, however, my job had me back in the office a lot more, and the flareups came back. My doctor referred me to a surgeon, who suggested surgery. I asked about other options and we agreed to try lancing first since it was less invasive than surgery.

Sure enough, just a few days after lancing, the bump got as big as it ever had and drained through one of the lancing incisions.

Concluding that the best option to get rid of my PC was surgery, I went back to the surgeon and scheduled surgery. He suggested a closed healing surgery, which I agreed to.

Surgery was yesterday, had general anasthesia. Truly, the surgery itself is not big deal - a little scary going in, but they put an IV in you and when it was time to start, they anesthesiologist put me to sleep before they started, then they put the breathing tube in, then rolled me over and did the surgery. I woke in the recovery room feeling groggy/sleepy with slight pain in my rear, but the nurse gave me pain medication and that was that. By far, the worst part waking up was my sore throat from the breathing tube, and 26 hours later so far that remains the most discomfort I've had (but the throat is feeling better by the minute). Lying down is fine, standing is fine, sitting is uncomfortable but tolerable for several minutes. Walking around slowly is the most comfortable thing.

I am writing this standing in my kitchen with my laptop on my breakfast bar so I don't have to sit down. Hoping that this is the worst of it, but will know in a day or two whether there are any lingering anasthetic effects in the area.

If everything heals well, I will be very glad I had the surgery. If this turns into one of the horror stories that I've read on this site and elsewhere, I am going to be as frustrated and disappointed as many others have been.

Best of luck to everyone reading this - these things are no fun, but take strength from sites like this. Lots of people go through this, my surgeon seemed to know all about PC's, and taking control over the condition and doing something about it is very empowering vs. doing nothing.


Date: May 25, 2010

Story

Hi. I'm a 22 old female from south africa.

I had my first ' flair up' about two years ago. I didn't know what it was and assumed it was boil. Being the region it is, I felt somewhat embarrassed to have it checked. So i figured lets wait it out and see. Randomly on day it started leaking and the pain was gone.

Six months later. The Same thing occurred. This time it was way more painful. When I asked my mom to have a look, as I was completely crippled by pain, she said it looked like two boils( significantly large one) growing on either side of my 'cleft' and they were pressing against each other. Wit that one too, I took a bunch of painkillers and waited it out. It burst and went away.

Two months later the same thing happened and was like 'hold up just a second this cannot be normal right'. So i googled it. And found out about pilonidol absess. I went to my family doctor who then diagnosed it acute pilonidol.i was then given antibiotics and a decent painkiller. It just sort of disappeared, no drainage. I was informed that i could have it removed surgicaly if I so wish, they also explained the success and reoccurance rate. I thought about it and said no. The antibiotics worked for me, no need to poke and probe right?

Wrong. Two months down line here I am in excruciating pain with a swelling the size of a golf ball. Unable to sleep or walk or stand. I'm scheduled to have my surgery later today. I'm scared because needles and me have a huge misunderstanding and will never see eye to eye. But i will endure. Will keep everyone posted on progress


Date: May 25, 2010

Story

Before starting my story, I want to thank everyone who posted stories in this section. They really helped. I became a mini-expert in this field and knew a lot by the time I went to the surgery. This is the reason why I am posting mine, so it can help future patients who are diagnosed with "sinus pilonidalis".

The whole pilonidal story in my life started just a week ago. Apparently, I've had it for approximately 5 years and didn't know about it because I never felt any pain. However, the pain started last week and it got worse every day. At first, I thought that it was just a tailbone pain that would go away with a painkiller and a good night sleep. Unfortunately, that wasn't the case. During the second day of my pain, a fluid started coming out of a microscopic hole near the end-point of my tailbone. (After I visited this page, I found out that it was pus).

After a couple of days, I visited an orthopedist (thinking that the problem was in my back). Immediately after I told him about pus coming out of my tailbone region, he sent me to a surgeon. The surgeon cleaned the whole area by emptying the created abscess. I really felt better after that and 90 percent of the pain went away. After the cleaning process, I had a little talk with the surgeon. He told me that i had a pilonidal sinus, and that I would have to undergo a minor surgery in order to remove the degenerated tissue which had been created. According to him, everything happened because of hair which grew on the inside. He prescribed me Cephalexin and another type of antibiotics. We both decided that I would undergo the surgery during the next Monday. Until then, I took my antibiotics every 12 hours and soon my tailbone area returned to normal as if I never had pain and pus there. But of course, in order to prevent it from reoccurring, a surgery was inevitable. Until that Monday, I spent most of my time reading stories on this page and the aftercare section.

The big Monday finally arrived. And yes I was nervous about it because I never had a surgery in my life. I met my doctor; had a little chat with him; the nurse took a blood sample from me and finally, I had to take a therapy which included antibiotics and relaxants. When the transparent bottle, which was full of the aforementioned medicine, got empty, the doctor came and we walked together to the surgery room. By the way, I decided to choose the "MAC" or local type of anesthesia which turned out to be a good choice. After I got it, the tailbone area went numb. I decided to stay awake during the whole process. During the surgery I felt minor pains and tickles from time to time. Nothing big though. As the surgery went on, the surgeon and I were talking about the last episode of "Lost" and how some of the secrets were not revealed. That was the time when he came forward to a position where I could see him, and showed me about 6 or 7 hairs which were trapped inside and were taken out by the surgeon. The next thing he pulled out was a degenerated tissue. Later he told me that my pilonidal wasn't wide at all but it was 2 centimeters deep. The surgery was finally completed. I got out, didn't feel no pain and made my way to my room. After an hour and a half, I got out the hospital. Today I have the first check after the surgery and I didn't feel no pain at all until now. I am still taking my antibiotics and I have some painkillers just in case anything changes. The whole process went easy and I am really happy that I found out that I had it, before it got a chance to grow.


Date: May 22, 2010

Story

I just posted the previous story with the "positive" outlook to 'open healing' and my experience so far being 3 days out of surgery. I noticed many people added their age and other info, so: I am a female. I forgot to mention I had my first flare up at 20 yrs of age. Two years ago I fell very hard snowboarding on the edge of a rail right on my tailbone. I'm not sure if this is the reason I have had problems with Pilonidal Sinus, but it is a possible reason. My mother said she had a problem with something similiar to Pilonidal Sinus as a child, but after she had it lanced (drained) the one time, it never returned. I will post more about my healing process if I suddenly have a turn for the worst and am not so "positive" anymore. -JJ.


Date: May 22, 2010

Story

I had my first 'flare-up' in May '09. It flared up usually when I worked out too much, however it only got bad enough to be drained by the doctor 3 times within a 1 year period. After the third flare up in a year my family doctor sent me to meet with a surgeon. I enjoy physical activity, and I didn't want this 'problem' to hamper my activities!

It is now 1 year later (May '10) and I just had surgery 3 days ago. I read so many horror stories about the surgery and the aftermath of the surgery that it really freaked me out. After surgery I felt completely fine. At first I thought it was all of the pain killers, but even when I didn't take any of them I was feeling good! Of course my behind has some slight soreness, however I am now on day 3 and I still feel great! The surgeon left my wound 'open', and the hole is about 1 inch in length and tucked in a hidden place on the very side of my buttocks crease (much smaller and more hidden than I had expected). Everyday I have 'home care' come and visit me to clean the wound and bandage it (free Canadian health care has its perks I suppose). I was scared at first to have my wound left open and not stitched, but so far I have had no pain and only a slight discomfort when the home care ladies change the bandage/goze. I'm walking perfectly fine, sleep just the same, sit just the same, and the only problem I have had so far was the bumpy car ride on the way home from the hospital.

The major mistake I made was freaking myself out with all of the horror stories out there. I'm on day 3 after surgery, I feel great, and I've learned there isn't all bad stories about an 'open healing' surgery for Pilonidal Sinus surgery!


Date: May 20, 2010

Story

I've found the website very helpful, so decided to add my experience. I learnt so much after my operation from the site.

I'm a 66 year old male living in regional NSW Australia. After reading stories of others I realise I've had problems for 20 years. Off and on I experienced a sore tailbone with some itching and slight swelling. These flare ups were spread out and had no set pattern. I could go for months without any discomfort.

On April 16, 2010 things changed, 3 days of pain and great difficulty sitting. By the Monday, April 19th the pain and swelling had increased. From 8am to 4pm the abscess had more than doubled in size. I gained an appointment with my GP who immediately organised my admission to the local hospital and contacted the surgeon on duty, who was visiting from Sydney.

He demonstrated how the pilonidal sinus develops and then discussed the various surgery options and settled for his procedure, a V-Y ADVANCEMENT FLAP.

Operated on that night and I spent 3 days in hospital with a drain from the wound. About 3 of the dissolvable stitches didn't hold and 8 days after the operation the surgeon at the hospital wound clinic closed it again. They were removed 14 days later. I have had weekly trips to the wound clinic for progress checks. After my last check, 3 days ago (a month after surgery), the Dr doesn't want to see me again for 3 weeks. I still have a dressing in place and the wound still has some discharge. The final gap is in the vertical wound, and the DR explained that it was now healing from the inside.

I have just commenced driving for short trips and can increase my physical activity, walking longer distances and going back to playing golf over the next 3 weeks. I was fortunate to have a surgeon who was experienced and used alternative techniques, and great follow up care from the local hospital. I'm also using a coccyx cushion.

For about 20 years I ignored the early indicators, get help immediately. Don't worry about who looks at your abscess. I was of great interest to 2 final year medical students who were completing their hospital rotations, one being a young female. Relief is what you are looking for. The only person looking forward to my final recovery is my wife, who changes the dressing each day. I hope my experience encourages others to take the first steps towards relief.


Date: May 20, 2010

Story

Pilondal Abcess with Cellulitis

Almost 2 years ago I had a faint tailbone pain (im 37 now) within 36 hours I was completely incapacitated. Nothing could be seen externally at all! I went to the ER, they told me I had a Pilonidal Cyst.

At the 48 hour mark I was a mess and back in the ER, They tried to extract a bit to relieve pressure and they found the area would not numb, nothing would come out, I had a small area of cellulitis and a fever. Still nothing was visible. Iv antibiotics etc.12 hours later is when it all went bad. I felt like I had a balloon filled with water at the base of my spine.

Back at the ER again they now tried to extract again and in extreme pain. They were very compassionate to me and realizing I have an extremely high tolerance to pain I gave them the go ahead to try to get something out. I wont even get into how painful that was. they could only get a little out.

After a few hours the cellulitis spread to an area 6 inches in diameter. It looked just a touch red, not bad. The next day with a 101 temp I went to a GREAT surgeon. My journey from that point was excruciating. They were desperately trying to get a hold of the infection with very strong drugs cause I am allergic to so many. I was not stable enough for surgery for 26 days. I had a constant temp of 101-103 the entire time, MANY trips to the ER for packing,no pain meds because they were ineffective. The surgeon said I was the only patient he had seen in his career with this severe of an infection and the most packing he had ever used.

Ok with that said the reason why I am writing this now. During this entire mess with a fever for almost 1 month, lack of sleep etc. I realized when it was OVER how bad I really was. My family was desperate to help me but couldn't so I hid how much pain I was in. I was determined to do things for myself. No one knew how bad. I am a wife and mother, I am a very strong girl (at times too strong) the last week was emotionally very hard. I went to depths of my soul that I never thought I could. I lied to my husband, sisters, mother and close friends of how bad it was.

Several months later i told my family I had become suicidal during the worst of it. I was pushing my support system away from me. I hope I never have to deal with this again but, if i do I am ready to handle it much different. And my family knows. So if you or anyone you know gets a Pilonidal ABSCESS with CELLULITIS get help and accept help! I NEVER thought my mind could go THERE. In all my years I have been though some painful things. Collectively all together still pales in comparison to this. I dont know exactly what could have penetrated my very thick skin to help me. I needed to let my guard down and let my family be stronger than me for once.


Date: May 19, 2010

Story

I had my first Pilonidal cyst excission when I was 16. I first went to a surgeon and he lanced it that day, and the scheduled surgery for some weeks later. I had teh surgery and it pretty much ate up my summer that year. I was in bed most of the time, and had to keep my wound packed with gauze. This was by far the worst part, but it was not terrible.

My wound eventually healed in about 6 weeks and I went on with my life. Now I am 21 and a college student. I have had a few flare up just recently within the past 6 months, but they always went away. That was until about four days ago when i thought I just had a small flare up, but woke up the next morning to find a hole where my original incision was. The cyst busted in the middle of the night and seemed to be infected. I went to the doctor today and he gave me cephlaxin and sent me to see a surgeon on Monday. I was wondering if anyone has had this happen? and if so, do you think that I will have another excission?


Date: May 17, 2010

Story

I am amazed at the stories I have been reading and just felt like I needed to post my story. I am in pain now-so will be seeing my surgeon again this week-if I make it that long! I had fallen several years ago-hustling to get to work and slipped down the stairs landing on my tailbone. I remember thinking- "ouch, now hurry up your late". I am only 34 so it's not like I am elderly and prone to falling-it just happened. Maybe a year or so later I noticed several flares of pain-hurt to sit, bend and lay certain ways. I am a registered nurse so the first thought was "DO NOT tell me I have a pilonidal hairy butt man cyst!!" We joked about this in nursing school so needless to say I was mortified. I then figured I had permanantly damaged my tailbone when I fell and maybe I did two many sit ups at the gym. So I would rest and it would go away. Finally it got to the point I couldn't stand it so I went to my GP. I bit the bullet and put my pride aside. you could tell he was uncomfortable-so after barely touching me he said we should get an xray and then send me to a surgeon to make sure it wasn't a cyst although he didn't see a pit. I asked about a scan and he blew it off. The xray showed a crumbly looking arthritic coccyx. I went to the surgeon- he had me on all fours with my knees on a lift device-my exposed ass was slowly lifted in the air. I was sweating and embarrassed! He was very nonchalant "your fine-there's no pit there". Weird! Why was I in pain. He told me to see a chiropractor. So I did. My spine was totally messed up from balancing on one cheek for comfort. In five sessions and a bottle of Flexeral later I was feeling good!! A few more episodes over a few years-fastforward to July of 2009. I am 7 months pregnant and my cleft is flaming red and swollen. I am crying at work because I hurt so bad. I didn't want to but I went to the Urgent care and they said I had a pilonidal abscess! So in the office the surgeon cut it open and drained it. I was in serious pain- it was as if what ever he gave me for pre procedure discomfort wouldn't circulate. I was shaking and crying. My husband had to remind me to breath. I was trying to hunch over my big belly and I could feel the baby squirming in there. Anyway- I thought that was over with until October 27 2009 when I was having some serious pain while trying to breast feed at all hours of the night. I remember the next day just crying in the shower knowing it had come back. I went to the surgeons office that day- 4 week old in tow. Yep- time for surgery. That was crazy. I was exclusivley breast feeding so had to figure out what we were going to do. I went home and learned how to use a breast pump REAL fast. Got enough to feed him and then had surgery the next day. My husband packed the wound for EVER and that was really painful. I learned to breast feed standing up, balancing on one cheek, kneeling ETC. It did finally heal up in two months, just as my maternity leave was over. So here I am May 17th 2010, sitting way forward at work just counting the days until my surgeon is back in town from a conference. I had the surgery so I could avoid it coming back. This SUCKS!!! There seems to be a theme amongst people that have injured there tailbone and cysts BUT I asked my surgeon about this and he said he didn't think there was a link-TOO coincidental if you ask me. PS- I am not hairy.


Date: May 14, 2010

Story

Right, ive been checking this site for a while and thought i would add my own little tale of woe.

It all started in Feb 2009 when the Uk got hit with a load of snow. Me being relativly clumsy slipped down some rough concrete stairs and smashed my cocyix area hard. Didn't think anything of it untill a few days later when i noticed a small lump forming a few CM from my anus (pleasant i know). Being male, i ignored it untill it got to sunday night where i was in so much pain i couldnt sleep in the slightest. There was no position i could lie in which made it bearable...

So after that night, i was first in the que to the doctors on monday morning for an emergency appt. The lady doctor i saw then diagnosed PNS, popped the lump and drained some pus, gave me some anti biotics (fluxocilian or something along those lines) and sent me on my way. Over the next few months i experienced a few flair ups - some major and some relativly minor. All dealt with anti biotics and all were pretty horrible to deal with. Im sure i dont need to explain on here about how you just know the fuckers are coming on again and how rubbish it makes you feel. Try explaining to your boss whats going on!

Eventually my GP referred me to a surgeon and i was booked in for the op on May 12th.

I woke up from the op with a CLOSED wound and a big ol dressing on my backside. Here's where im confused though...

A while back - i cant remember when exactly - i noticed what looked like a spot just to the left of my natal cleft. Pressing around it i felt lump tissue under the skin. I think this is what has been removed.

However, where the PNS would drain when it got infected (the thing i mentioned earlier a few CM from the actual anus) has not been removed or touched in surgery (as far as i can tell, its pretty hard to look at that area at the moment).

Will this be an issue? Anyone?

So to sum it all up, there are a few things ive learnt about dealing with this....

a) Yes, its really embarassing to talk bout this horrible disease, but you just have to get over it and move on. theres a lot worse out there!
b) If you have the choice, get the surgery ASAP dont wait around thinking it will go away - it wont.
c) I go stir crazy not being able to function to my full extent.
d) having to go no.2 is not easy or fun when you have a bandage right across said area. thanks for reading.


Date: May 11, 2010

Story

I just wanted to say that laser hair removal might be the answer for preventing a recurrence of your pilonidal cyst. So far the wound from the open healing surgery my teenage son had back on July 31, 2009 seems to be staying closed finally. We had gone to a wound care center and had everything closed in December, 2009 just to find more hair had gotten back in and it opened up again 2 months later. Once the hair was removed, we were able to get it to close up again but this time we searched for a permanent solution.

The cost of $450 for 8 treatments which are done every 6 weeks will be well worth it if we can finally keep the wound closed and not have to worry about it anymore. Here is hoping to a permanent end to this problem.


Date: May 11, 2010

Story

My mom found this website last night a made me stick it in my Favorites because I am a sixteen (seventeen in a week) and I just had my first serious abcsess.

I first noticed tenderness when I sat down on March 30th, 2010, but I thought it was just an ingrown hair that would resolve itself. The next day when me and my family were doing yard work it became increasingly painful to bend down and sit. I'm very open with my mom and reported what was going on. She did some interent research and we thought it was just a boil.

Nights were the worst. I couldn't find a comfortable postition to sleep in, and being in so much pain, I slept in poorly. I was half-conscious all night.

We wanted to try home remedies before going to a doctors. (I rarely go to the doctors and try to avoid it at all costs.) We tried a hot pad to bring it to a head. Didn't work. I went to my job and came home crying in pain. Next, Mom called up a friend who knew a lot about essential oils. She picked up some oregano oil and we tried applying that. That didn't work either. All I learned was that it's fire-in-a-bottle!

When I got a 99.8 fever April 2nd morning Mom took me to the walk-in clinic. I was given a prescrition and was suggested to get Miroolax and FiberOne bars because we think the abscess was suddenly triggered by a bout of chronic constipation which occured 2 days before I noticed the abscess. I was taking 16 ibuprofen a day for pain: 4 ibuprofen 4 times a day.

April 5th, I started shivering in bed with the chills. I took my temp and spiked a fever of 100.3. Mom called up the clinic and I had an appointment set for that afternoon. mom kept me in the dark that I was most likely going to need surgery knowing if she told me that I worry myself sick.

I had a man doctor. That was embarassing. I was in a terrible mood being there, so I'm ashamed to admit I was rather rude towards the doctor. I was very sarcastic. The local anaethesia did hurt a bit, but not as bad as the oregano oil. The surgery itself was very quick, maybe 3-4 minutes. I didn't throw up like I was afraid of, but the whole ordeal felt very out of body.

A couple days after surgery Mom removed the wick, which is placed in the incision for drainage uses, and that hurt some. The follow up check-up went fine, and it was suggested I take sitz baths for the next 2 weeks.

I had one little flare up April 24th weekend which was just tenderness in an entirely different area. Last week I flared up in the same spot as the incision. It was really tender to prod as I inspected it, and then this past weekend the incision "opened up" and bled a little. I told my mom about it the next morning and she examined it. The "drainage hole" as it is called here appeared, so I did indeed have another abscess. Though this one did not incapacitate me like the first one and it only last 4-5 days. That is how Mom found this site. Reading further, we realized this flare up came at the end of my cycle. I thank God that we found this site, so I know how to cope with this situation!


Date: May 09, 2010

Story

I promised myself I would post after a year of getting rid of the pilonidal cyst. When I came to this website there was a lot of great information and people, but there was also a lot of horror stories. I am hoping my mostly positive experience will encourage people to go to their doctor as soon as possible.

I was in college and first got this unbelievable pain near my butt and I could barely walk. I figured out it was a pilonidal cyst after it died down a little, but I lived with it for a year before talking to my doctor. This is probably the worst year of my life (even worse than middle school)! Flareups happened every 2 months, and I could barely stand the hard plastic chairs in classrooms. When I finished the year I went to my doctor and he sent me to the butt surgeon immediately. I have never had surgery in my life so I was scared to death of what was coming. The surgery wasn't half as bad as I thought, I could walk in a couple of days. I healed very fast and after a month was finally back to living my life. It is hard to describe how amazing it feels to not have to worry about my pilonidal cyst all the time.

So I guess my point is, don't delay talking to your doctor and just get it over with as soon as possible. My cyst only got worse throughout the year of having it, and showed no signs of ever getting better. Hopefully I stay pilonidal-free and hopefully whoever reads this will know that not all pilonidals end in horror stories!


Date: May 09, 2010

Story

My son was 17 when after two previous ruptures he had surgery to remove his pilonidal cyst. Shortly after the surgery his dermatologist prescribed accutane for acne treatment. His surgeon, family dr. and dermatologist were all aware of the surgery but no one expressed any concern about the surgery and the medication.

His surgery was in July and in May we were still visiting the wound care center weekly- where they were considering a second surgery, as he had not healed. Finally after asking each of the drs if there might be a connection to the accutane I decided to take him off of that medication and within two weeks he was healed! The dr. at the wound care center had to agree that the accutane was a factor if not the factor in why his wound would not heal. We are very thankful to have this behind us and very fortunate that he did not develop a serious infeciton over the many months that the wound was open when it could have been healed if we only knew that accutane was preventing the healing.

The end result is- the accutane took away his acne but also caused 7 months of an open wound that were much more serious. PLEASE be advised that you should NOT have any surgery while on accutane or begin accutane treatment if recovering from surgery!


Date: May 07, 2010

Story

I have posted many times on this site so now I will post again....I just had the removal surgery exactly one week ago today... And today was the first day I was able to sit down and have a meal..

I have been on my belly for a week and my neck and shoulders are killing me!... Like most of u I had been living with this for a few months...and I had 3 flare ups in 5 months and enough was enough...I finally made appt for surgery and went in, I was. Scared out of my mind,it was my first surgery .I'm only 23 and didn't want 2 deal with this for the rest of my like so I had 2 do what I had 2 do.

The surgery was the easy part. The laying on tummy for a week sucked, and I'm prolly lucky for being able to sit now because they put a wound vac on me. Its called a snap vac and this thing works wonders!!...I woke up on recovery on my back and this was attached to me already.its a small ting attached to a tube thay connects to the open wound to suck up all the stuff that comes out the hole....otherwide my husband would be having to pack it twice a day everyday....that wouldn't be fun...I have to weatr this for 4-8 weeks till I'm totally healed...

I go to hospital twice a week for wound care nd its already getting smaller.....

If u are suffering from this I know how painful it can get.mine used t flare up to the size of a golfball to the point where I coulnt sit down, or barely even walk...I was scared about the surgery, but now I'm glad I did it, as long as it doesn't come back....I'm willing to share my story and even pictured for those who want to know...

Kristynm at metropcs.blackberry dot com if u have any questions....let me know...you can do it!!


Date: May 06, 2010

Story

Last year I felt some discomfort when going to bed one night. I figured I had hurt my tail bone wrestling with my kid ( you know boys will be boys :).

Several days later, while in the shower, I felt a bump on where my tailbone was. I went to the doc in the box across the street from work that morning. The doctor told me I had a pilonidal cyst and gave me a prescription for some antibiotics and sent me on my way.

The cycst was fine for about 3 months and then it came back so I made an appointment with a specialist to take a look. The specialist said let’s just open it up drain it and you should be good to go.

About 6 months later my cyst was back, I had enough so I met with a rectal surgeon to excise it. She, the rectal surgeon, was fantastic. She removed the cyst last week and I am now off the pain meds and healing well. I feel much luckier than most!!!! Mine was very small and not very painful, more of an annoyance than anything.

I am glad I went ahead and got it excited and not laged on with other treatments. As my co-worker tells me…”She cut around the meat” .

Big thanks to my wife for packing the wound and putting up with me this past week.


Date: May 05, 2010

Story

I discovered the pilonidal cyst when I was 21 - I am now 23. I knew exactly what it was the moment I couldn't sit down without discomfort because both my mother and sister had this problem when they were my age! (And my doctor told me it wasn't genetics... pffh!)

I got the surgery in Feb of this year - Oh how Valentine's day sucked! I had to take the open wound/packing option. My husband (God bless his soul!!!) did all the packing and dressing and cleaning. Let me tell you, every single time he pulled the gauze out, I cried. And I have a very high pain tolerance and normally don't cry. The packing itself wasn't all that bad.

Oh, the first two days post-surgery weren't so bad. I thought it would be that way the whole time. What my doctor didn't tell me was that they used slow burning anesthesia and that burned off after day two. Even with the oxycodone, I felt EVERYTHING!

We don't have to pack the wound anymore, but it still has an itty bit to go. (I wonder why it hasn't closed up completely yet - it's been a month or so and I haven't noticed any change in the size, and it still drains a bit. Is this normal?)

If you have to go through this, it's going to suck. No doubt. Just accept that fact. Cry if you need to, and take the drugs. This was one of the suckiest, most uncomfortable experiences of my life, but it had to be done, and I'm almost done with it.

Stay strong, and sorry you have to deal with this. And thank God for this site!


Date: May 02, 2010

Story

I have been dealing with this since I was 12 years old. I am 29 now.

My first surgery was the summer after 7th grade. I had a closed surgery and was laid up for about 6 weeks.

My next surgery was when I was 19 or 20. I have had 6 total surgeries. My last one was about 18 months ago. With that surgery and the time before, the surgeon used a Wound VAC for healing.

I was in the hospital for 5 days with the first 2 days being on strict bed rest. I noticed drainage coming back when I was pregnant. My daughter is now almost 10 months old and I still have drainage and some pain. I do not want to live with this forever and I know that I am going to be looking at my seventh surgery before too long. I may be researching going to a different doctor, although the wound doctor I see for this is wonderful, but the current method of wound VAC is not working.


Date: May 01, 2010

Story

42 year old female in Texas - I went undiagnosed as an 18yr old college student and spent days bed-ridden in my dorm from the pain. After I went home for Holidays, I went to a doctor and had surgery within a few weeks.

The worst part of the whole ordeal is after surgery; the packing and unpacking of the gauze. It came back. I was 22 when I had my second surgery.... and a very good friend took care of my packing/unpacking (and yes, we are still good friends despite the ick factor). I've gone from athletic build to overweight and back again and again, so that doesn't seem to be much of a factor. I sweat a lot, and I sit a lot at work. I've had three flare ups in the past 10 years, and have been able to drain these to the point they go dormant and avoid surgery. I know I'll have to have surgery again some day - maybe sooner than later.

I'm using heating pad and Tylenol for pain, and taped gauze to my fanny to catch the drainage. I recommend Oxygenics spa flexible shower heads and very very good friends. I haven't found a tailbone pillow yet; that's next....


Date: April 29, 2010

Story

Hello In April, 2009, I had my first major problem with Pilonidal disease.

It all started around Nov 2008 with occasional irritation at the top of the crack where the buttocks meet. This irritation became more a regular irritation by Jan, 2009. When I used touch up there, I used to feel a dirty smell on my finger tips and a slightly wet sensation.

I am a merchant navy officer working on ocean going ships with NO internet facility. To be honest while on board, I had no clue what is it all about. I am a heterosexual male with multiple partners and I suspected that it could be a STD but was not sure. Luckily for me, while on board till March 28th, 2009, the problem was never very serious.

In April, 2009, I was in NYC. This problem somehow escalated and I started having pain while sitting on my buttocks. I did not not connect it initially to the problem of dirty smell on the buttocks cervix.

Finally in May, 2009, the problem became unbearable. That's the time, I started searching the net and came across this WONDERFUL forum/information/ discussion on this disease.

After reading the forum for 2-3 days non stop. I decided to take a appointment with Dr Brian Harlin. I was not sure what to expect with him.

I am not a citizen of USA and I do not have USA medical insurance. But due to some personal reasons, i had to stay in NYC for 5-6 months and there was no escape from seeing a doctor and spending money.

On a rainy cold day in May, 2009, I ventured into the cleaning of Dr Brian Harlin, who was highly recommended on this board. He is a expert in colon and anal diseases.

As soon as Dr Harlin saw my back, he said (confirmed) it as Pilonidal disease. He did some incision ( NOT a surgery) on the cervix of my buttocks to remove the pus an open the abscess.

It was painful for a second. he put a bandage and told me to pull up my paints.

He recommended, I go for surgery. I wanted to but I was helping a family member recuperate from a very serious illness and I was in no position to become a patient myself and be indisposed when I am a caregiver myself!

I bought the painkillers for the surgery ( scheduled a week later) but never used them.

I was charged 300 us$ by Dr Harlin for the first visit.

If I had gone for surgery, I was to pay another Us$ 550.

The painkillers were bought for US$ 27 and I was supposed to eat 2-3 of them prior the surgery.

I returned home an bought those gauze bandages which do NOT stick on skin. I used to roll up a bandage, wet it in water and apply it on my back and then paste. I did this for a week or ten days twice a day.

For first 2-3 days, I had slight pain when sitting down.

After a month, I had no sensation at all.

During this period, I did not take any extra vitamins or had any special diet or did anything extraordinary. Life went on as it was before.

Its now a year, I have had no problems, no irritation, no dirty smell from the cervix of the buttocks as yet.

I hope and pray that pilonidal does never come back to attack me!

Very recently, I developed a anal fissure due to constipation and was searching the net and found abundance of useful information which I found very very helpful.

And then I remembered that last year I had Pilonidal and how the forum had been of great help.

Its payback time and hence my story here. I hope it is of some use to someone.


Date: April 28, 2010

Story

Hi Folks / Horror Story writers.

I have a few questions.........but first my story.

I am a 43 year old British female but i live in the Netherlands. For two years now i have suffered with back pain below my waist and more seriously in my coccyx area. I have had a set of Xrays done and also an MRI. Both of these showed small things associated with anybody my age like light hook forming arthiritis, slight curvature of the spine and a narrowing of the area where the nerve runs through the vertebrae. The doctors say none of these should deliver the pain I've been having. The pain is sometimes terrible, back pain around my hips over towards the front sometimes in the waist area. A feeling of being very stiff. I rarely have pain in my legs.

I have been sent to physio for back strengthening exercises and have had a nerve blocked in my back. NOW about five months ago i kept feeling like i was sitting on something and eventually found a small lump in the crack of my bum right at the top on the left. It hurts to press it but its not unbearable but I am always aware of when its 'back again' and sometimes is a little red. I went to the doctors and he says it is NOT connected to my back pain. I told him it has for the last five months coincided with my menstrual cycle and then gone away again. I have been told off for sitting on one bumcheek or the other and that this is contributing to my back problem.

Today my physio has told me they want me to see a psychologist because they think my stress is bringing my back pain on!!!! I told her I'm stressed due to having lost my job because of my ongoing back problem therefore i am worried about my financial future............which I think is a normal reaction especially as they are stopping my physio.

Now for my questions.........

1. do any of you recognize any of this or have experienced a similar set of symptoms.

2.Have any of you had this cist for a while BEFORE is went supernova and therefore were given the push off by doctor.


Date: April 27, 2010

Story

Hi everyone!

Wow reading these stories is just very...

It is just comforting to know I am not the only weirdo and that I'm not a baby and the pain is unbelievably real. So I am doing research because I am planning to have surgery finally to get it all out instead of having it lanced which I have had done once before.

Let me address an issue not many people are talking about on here....IN MY OWN OPINION (EXPERIENCE)....I have more than one cyst BUT the pilonidal one is the one that keeps coming up "flaring up" and won't stay dormant long enough.

So I am looking for the best possible surgeon in my area to deal with this problem. However, I would recommend you all especially those who have a recurring one, multiple ones and those of you who don't want it to come back, pay lots of attention to what you eat!!! I have noticed mine flare up when I eat sugar. yes sugar any kind of sugar except stevia.

I also do not eat pork, or dairy products because these too cause flare ups in other places in my body. I was very stubborn and didn't want to believe this could be it because I enjoy foods with all these ingredients but sure enough it does cause flare ups. For those of you who want to prevent them from coming out in the future...I would recommend detox supplements to help clean your system of these toxins. Those boils are toxins that want to get out of your body and this is their preferred way to manifest themselves.

I've had this problem for about 8 years and the one on top of my butt is just soooooooooooo bothersome to the point that I can't live the active lifestyle I want and it's not worth having it. I hate surgery, GA, doctors, etc. So for me to get this surgery done is a big deal. I'm just dreading the recovery part but believe me I will be taking lots of supplements to help the healing process because I do not react well to G.A.!!!! If anyone wants to ask me anything you can e-mail me at ebenezerprincess at yahoo dot com I'm 27 now. I am female and I have more hair on my back than my bf!!!! very frustrating!!


Date: April 27, 2010

Story

Hello I am a 16 year old female living in the UK.

First of all I had a mild discomfort in my lower back for about five days which I mistook for back pain. Then the area started getting swollen and the pain increased. By around the sixth night I was in serious pain and could not sleep because even the slightest movement pulled on the skin. That night it flared suddenly and it became very red and swollen.

I didn't want to wake up my parents so I did some research on the internet and from googling the area in which the pain was on my body, I came across Pilonidal Cyst Disease and I was pretty certain that that was what I had.

I researched the disease and was put off at the information that it would probably need incision and drainage so again I did not tell my parents. I was scared of having an operation which I realise now is silly. However, in the afternoon I was just in agony and in tears so I told my parents and they took me straight to the doctors.

The doctor confirmed that I did have Pilonidal and she mentioned that it was because I have dark hair which I don't know if that is true or not. The Doctor gave me the option of trying antibiotics to see if they would have any effect or I could go straight to hospital. I voted for the hospital and my mum took me straight away. This was on a Friday afternoon and at the hospital they confirmed again what I had and said I should have surgery straight away.

I ended up having surgery the following afternoon and then was back at home on the Sunday which I guess is very quick and I was very lucky. This wasn't done private or anything. It was all done through NHS as normal.

It is an open wound so I had a district nurse coming to my house every day to redo the packing and clean the wound ect. Then after the two weeks because I had to go back to school I would then go to the nurses at the doctors which is on my way home anyway so is no trouble. I am now in my fifth week after surgery and still need the would repacked every day but the wound is healing.

I recommend surgery to anybody with this problem. I have been reading stories of people having this problem for years and not done anything about it. All I know is that I could not have put up with the pain and I was lucky not to have to book an appointment for surgery. I am scared of having this problem again after it has healed but I have found this site useful.


Date: April 26, 2010

Story

I am 45 and I remember my first "cyst" at about 18.

I remember once that the cyst was really swollen and a friends' child knocked me backwards into the kitchen counter, I swear, I saw stars because the pain of hitting the swollen cyst was so bad. It would swell about once a month and would usually drain on it's own. I used to cut panty liners and stick them on the back of my panties when it started to drain.

Once, over the 4th of July, I was in so much pain because it never would drain, I went to an ER equivalent. I live in a big city and it seemed like a better idea then going to a hospital. The ER doctor knew about pilonidal disease and said he could lance it. He made sure I could get a ride home and gave me some heavy duty pain meds. I swear, I could not tell he had given me anything, it hurt so bad when he lanced it. Finally, some time later, I had surgery to remove the cyst. I do not know what kind of surgery it was except that it was day surgery and I had a drain held in with stiches. The drain stayed in about 2 weeks and I had to empty it about twice a day. It was not a pleasant post-op period but I had been laid off so I had the time to heal without worrying about going to work.

Not sure how long I had relief but another cyst has shown up. It swells about every 2-3 months and will usually drain on it's own within 24 hours. It is so miserable to go through but I have done a pretty good job of living with it. I don't really have enough time to take off of work to get this one removed. I may change my mind about that if it were to not drain on it's own.

I am happy to have found this website and I appreciate all who contribute to it.


Date: April 26, 2010

Story

i have posted here many many time and NOBODY ever returns a message, an email ,.....NOTHING!... so i will try and start answering people if i can... stephanie (2 below)... i have had this for aboout 6 months now...i remember having something there my whole life but it would always go away in a day or 2 with no issues...in november 09 on my birthday it got so swollen that i couldnt sit,walk, or lay on my back. i went to the dr got meds and finally it drained on it own.jan 10 it came back again, back to dr, more meds, drained on its own. and now its april and its back, this one didnt drain on its own, im on meds, and surgery is in 4 days!!..SCARY!!! the draining will help make the pain be less, but its does not cure the problem, sometime people get lucky and it never comes back after the draining but its unlikely. stitches in that area is NOT a good idea, cause 8 times outta 10 they are going to rip, unless you plan on sitting very very still with no activity..... the hot bath are a good idea, i used to squat down under the bathtub faucet and put the water so hot to where i almost burned myself (as hot as you can stand, it goes numb after a min in the hot water) and that it was made it drain on it own... like i said im going for surgery in 4 days, so im freaked out myself, but hoping for the best. after reading most of these horror stories on here it makes me think twice... if you or anyone wants to talk, exchange stories/advice, or anything let me know and i will give you email address. i would love to talk to anyone about it. these forum dont seem to get to much attention

**Admin note** 

This is not a forum, this area is for the submission of personal stories. The forums are here.


Date: April 25, 2010

Story

To Stephanie (the post below): I'm 16 as well and have pilonidal disease. I would suggest that you get it drained, because it will ease the pain. But to get rid of this thing fully, the cyst needs to be surgically removed. I'm getting surgery this summer, and although I'm not looking forward to losing my summer vacation, I'm happy that I'm going to be rid of this. The longer you wait to do anything about it, the worse it gets. Don't be shy to show it to your doctor, they've all seen much worse than an angry cyst. :) Good luck in the healing process.


Date: April 25, 2010

Story

Hello i am a 16 year old female and currently living with pilonidal disease. Found out that i had it a year and a half ago. When i got it the first time i thought that i just had a broken tailbone until it started swelling and got very red and painful. I went to the doctors and they gave me antibiotics. They said it was supposed to make the cyst go away forever.

WRONG. It actually just came back about 4 days ago. I am in EXTREME pain. I'm serious, this thing is as big as a golf ball right now. I can barely walk or do anything, I have been putting heating pad on it and taking warm baths. Doesn't feel like it's helping at all. This time is WAY worse than the first. They put me on antibiotics to get rid of the infection and then i'm getting it drained and stitches. But after reading stories on here, draining just sounds like a HUGE waste of time. I seriously think i'm going to go crazy!! This pain is unbearable. I can honestly say i would rather have a broken leg than this. And to know that i'm only 16 years old with this.. I have a loooooong way to go. If anyone has any tips or advice please let me know! -Stephanie-


Date: April 23, 2010

Story

Hi - just a short note to say if anyone is embarrassed or scared of going to the Doctors please just give it a go. Remember Doctors have seen a lot worse than this!

I got my mine in August 1996, I can remember it well. I lived with it for 7 years before I built up the courage to see a Doctor who took about 5 minutes and just told me in a matter of fact way what it was. I was in and out in 10 minutes with an appointment to see a specialist.

It did effect me and I was always embarrassed if I met and girl and used to wonder what she would think if she saw it. So it did effect my life and restricted me somewhat.

Anyway I had the surgery and the surgeon told me my cyst was one of the biggest he has seen and I have a large scar but its all worth it . Luckily it has never come back and its like it was never their.

Please just go and see someone, the first step is always the hardest but please believe me when I say it was the best thing I ever did.


Date: April 21, 2010

Story

Hi everyone, i have had three surgeries and it has not returned after the last one. It has been over a year but i am still taking preventative measures to make sure it doesnt return. The surgeries suck because of the healing process but i try and stay positive.

the things i have done to prevent it from returning are shaving and using the 'No Bump" after shave, a seat cushion at home, proper sitting posture, keeping the area completely clean, and green tea. Stay Strong everyone


Date: April 19, 2010

Story

I have been following this website since I had surgery August 10,2009. I am greatful that such a site exist and have learned alot unfortunately through the pain of others. I have never posted anything on a web site before but I feel that I need to share my story just in case there is someone out there with the situation just as I have experienced.

I am a 46 year old female. I did not know I had anything wrong back there. My ordeal began on August 10, 2009. I have been a nurse for 25+ years and have never had the pleasure to care for a pilonial. All I knew is that I was in excruiating pain and there was a discharge, that I mistaken for sweat since it was August and was hot. I bought that femine powder thinking I was making things better, But I am sure you can imagine what I was doing without knowing... yes blocking the tracks.

At this point, what it looked like was a hole that you could stick your finger into. Not having any idea what was going on I went to my family practioner and he did not know and admitted me to the hospital. Believe it or not the wound care nurse came in wanting to stick a 4 in qtip to measure.Apparently she did not know what she was looking at either. Next comes the general surgeon and says to me...Yep you have a pilonial sinus we can remove that. Sounded good to me...at the time.

I was not prepared for the journey ahead. That is when I came across this blessed web site. This also brings me to the reason for sharing. I thought yep remove the darn thing and lets move on. Well everyone kind of know what went on from other postings, pain, drainage. dressings, sitz baths ect. What I was not prpared for and would love more information is the fact that it has been 8 and half months and the darn thing will not heal. 3 weeks ago I decided that my doctor just had something wrong.

I visited a wound care center and things started to look up or so I thought. More dressings. It began to close slowly but surley. Then the worst day since the surgery was today. Saturday was pain and tenderness and the water from the shower just burned my skin. Went to bed that night only to awake to a bloody mess, the darn thing opened back up. Went to the wound care doctor today and recieved devistating news there is another track and that is why I am not healing. He put silver nitrate and says that we can try this for a little while but I might have to have the surgry again. What in the world can I do??????


Date: April 19, 2010

Story

I am currently 58 years old and first developed a pilonidal abcess at age 21. I had no idea what the problem was until I finally saw a doctor. He recommended sitz baths until it was ready for lancing and draining. After this was done, I thought my problem was over as the doctor never mentioned re-occurence. Well, my problems with this malady were just beginning. I had re-occurences 4 to 5 times a year. Due to moving, I saw numerous doctors. Each one remarked that the condition was "really painful". Like I didn't know. Some suggested eventual surgery. Usually it was a course of lancing, draining and antibiotics. The doctors made the surgery and recovery sound like a breeze, with my being back on my feet and back at work in about a week. I'd heard of others who had the surgery and were laid up for months, so I was leary of undertaking it. This went on until approximately 1991. I have not had a re-occurence since then. 19 years ago. It seems as though the abcess area has healed. Never had surgery. One habit I did change was, I became absolutely anal (no pun intended) about cleaning myself after a bowel movement. I made certain that I was clean, using sani-wipes.

Some months before my mother passed away at age 86, she developed a pilonidal cyst. She'd never had one before in her life. Due to her age and physical and mental decline, she began to have episodes of incontinence. She was living at home with my father and I suspect that she was not able to clean herself effectively after her incontinence. I've often wondered if this had something to do with the development of her pilonidal abcess. Therefore I maintain my established regimine of cleaning after a bowel movement. I consider myself very lucky.


Date: April 16, 2010

Story

hello everyone i had a pilonidal surgery dome a month ago .my question are /how long im sopp to be in pain?its normal to have like yellowish descharge?how does it takes for the wound to heal completly?thank u in advance


Date: April 15, 2010

Story

Allow me to tell you a good story with good news because I too was worrying about reading some of these stories and the whole process of this awful pilonidal occurence. 

I hope this encourages some people. Let me start by saying I'm a decently hairy guy and the hair caused my pilonidal cyst when I was 18 years old. I'm now 27 and I went for 8 years with this thing...the only good thing about mine was that i was not always in pain with it.

I was misdiagnosed at age 19 and a dermatoligist tried to burn the cyst out. I was mad that he couldn't finish the job and said sorry, i can't go that deep, you'll need to see a surgeon. I didn't have insurance back then and never saw a surgeon, i hoped so much it would just go away. after the dermatologists' procedure, it actually made the cyst smaller and it did grow back a bit but not much so it was there but i was in no pain...every few months it would flare up a little bit and be uncomfortable for a day or two but would ease back down and sometime i would go for 6 months with no flarring up.

i got sick and tired of this thing after it flaired up about a year and few months ago. I went to the doctor and he said right off "pilonidal cyst" =surgery. i was afraid but knew it had to be done. surgery was a breeze, 30 minute surgery and i woke up feeling like a million bucks...a little sore back there, but the relief of knowing it was out and gone from my body was priceless! the doc said everythign went so well and he was able to extract it with no issues. they used a new technique that "glues" the incision (which was about 3 inches long) back together instead of stitches. The glue eventually dissentegrated and i had a checkup once every couple of weeks to make sure it was healing properly. after a month and a half, it was all good and healed up.

I feel so great and have been doing atheletic activities with no pain. I do shave the area back there where hair was once a week to once every two weeks (you can get laser hair removal) and here i am a year later still feeling great. I was on the couch for one week off of work after the surgery and couldn't move much the first few days...they have to cut a little deep but every day i got better and better and eventually was on my feet again walkinga around after about a week. I know some people have to get the open wound surgery but mine was closed wound surgery and it healed fast with the "glue" so be optimistic about what your going through, there is a good chance some of you will have a minor experience rather than a major one...keep your head up and be strong and surgery will be over before you know it and you will be writing a nice story like mine soon...you can do it! God Bless, Kevin


Date: April 13, 2010

Story

to the story below. I had the surgery too and at first they stitched me up but I had a little hole on the bottom that would drain. The doctor said that was normal but to keep an eye on it. I suggest you keep going to your doctor every few weeks because mine eventually turned into an infection and everything that was sewn together was infected and I had to have surgery agian but keep the wound open and I am now using a wound vac which I have been told by many people that it is really effective. So we'll see where that goes. As for the pain.. I never felt pain after my surgery. I never took any of the pain meds my doctor prescribed me. I have a really high pain tolerance but it was uncomfortable to sit and my doctor told me not to sit or if I had to for class to sit on my side. It still was very uncomfortable though. I'm not sure it could just be pain that you're feeling because you were cut open? I didn't feel any pain at all not even the first day but I think i'm just unusual like that. haha But I would keep going to the doctor every few weeks to make sure it doesnt turn into an infection on the inside!!!


Date: April 13, 2010

Story

hi to all polinidal pain sufferers i have been dealing with this disease since i had taken a real bad fall down my own flight of steps in june of 2008. when i had fallen with the adrienaline rush i had, i had gone on to work feeling nothing at first but after the rush had subsided the pain increased from the fall.. a couple of days later i could not sit nor stand for long period of time and still went to work with this incredible pain.

Finally i had gone to the ER and the doctor said i might have bruised or might have had a hairline factor on the tailbone. The doctor had given me some pain medication and told me to take it easy and to rest. This was a wednesday afternoon and i hd fallen on a friday to get a better an general idea.

Saturday i told myself get moving break up the stiffness in my lower back so my mother an i were heavy duty summer cleaning and still i couldnt sit to use the bathroom nor sit in general. It was a nice summer june day and i thought i was sweating while cleaning the basement out i went to wipe the sweat away and i had seen this greenish yellowing stuff dripping down my left butt cheek. My mother told me i might have cut myself from the fall but i told her the ER doctor would have noticed it if i had a cut.

So finally the next morning this stuff was all over my sleep pants i paniaced and a friend of mine had taken me back to the ER. The nurse told me this had to be seen ASAP an put me into a room. Now here comes a new ER doctor who explained to me what this was and what he was going to do. He was to lance an open & drain it an to come back in 2 days to have the packing out. He had put me on massive amounts of pain killers and antibiotics.

Two days later i go back they tell me to see a surgeon. The surgeon had told me the area was contained an everything is fine. To call him immediatley if the area feels like it is coming baclk. Jan of 2010 my lower back was feeling all this pressure and i had felt since my body was changing a bit i thought it might be signs of my period was coming into town. Then i couldnt sit or stand again. I went to the Emergency room again they opened and drained the area an told me to call the surgeon. The surgeon i had gone to see at first now didnt take my insurance. I had to find another Surgeon. The surgeon put me on antibiotic and a pain reliever and told me he would see me in a week.

The week had came and told me more antbiotics an to baby the area an he would see me within the month. I see him an schedules the surgery for March 31ST. He had many surgeries scheduled for that day, he had pushed me off until April 2nd. Now and since the surgery i have been in much pain. Questions i wanted answered is it normal to have stitiching done or was is suppose to be opened to heal from the inside out? the other question is when will the pain subside the doctor said in 2 weeks but i dont know something isnt right i know my body like everyone else knows theirs on this page but it still really hurts like the first day of the surgery. Also is it normal for draining to still occur? i like the surgeon but the surgeon is to brief an isnt explaining much because i have a fear of this cyst might come back even tho he said he had gotten all of it out. not to sure what to do? thanks :)


2010

Story

Hi I'm the girl that just posted the really long long post. If you don't feel like reading it all I have two words for you: WOUND VAC!

After surgery instead of closing the wound the wound vac keeps it open, yes it sucks, but it heals it SOO FAST! Within a week my hole has went from 3.5cm deep to 1cm deep!! You have to get it changed mon wed and fri but it is SO worth it!!!!


Date: April 11, 2010

Story

Hello there my fellow pilonidal disease friends!! I come bringing good news! (I think) Okay you you want a good story!

Well, so far things have been good! But let me take you back to a day a long time ago. It was my best friends birthday to be exact. Sunday June 28, 2009. We were driving around and I noticed that my tailbone area hurt and felt like it was bruised. I didn't think anything of it because I had been riding my bike to the health club everyday so far that summer and I figured I just bruised it.

Well it started getting worse where I couldn't sit! I hate doctors so i hoped to god it would go away! By Saturday I had a big red ball at the top of my butt crack. I couldn't walk! I couldn't sit! I couldn't lay on my back or side! I couldn't even lay on my stomach with out being in pain!! I was pretty much immobile. The ONLY thing that made it feel better was taking a HOT bath! I was able to sit and have a few moments of peace before the pain came back!

My dad calls up his trusty doctor friend and describes what was going on and he's like "yup, pilonidal cyst." He made us an appointment for his surgeon friend that monday. So I get to the doctor and he says "yup, pilonidal cyst" Before I knew it he was sticking needles in my butt and injecting me with numbing stuff and my dad said my butt swelled up! Then he cut it open and I didn't feel a thing except the stuff oozing down my butt cheeks. SUPER GROSS I KNOW! But then he packed it and I went home. I was in SO much pain but then I took some of the lovely pain pills the doc prescribed me and I was fine.

Every day after that I had to take out the packing shower and then my dad would re-pack it. It was about an inch deep and the size of a pencil eraser. So after about two months it was closed enough to not have to pack it anymore. I went back to school and sure enough one morning I wake up to my underwear covered in blood and oozy stuff and it was back! this was sometime mid-october.

I went to the doctor and we had to start repacking it. This time he just pushed a q-tip in and it opened all the way back up. It was painful for about 5 seconds. This time my roommate/bestfriend had to pack it since I was at college. Mid-decemeber i went home for winter break and I went to see the doctor and they had me scheduled for surgery dec 22. I started crying because I didn't want to do it but he told me it will make it go away and i should get it. So i did.

After a few hours I was out of the hospital and at home. Surprisingly I was never in any pain. I had a stitch all the way up my butt crack and it looked pretty sick. Two weeks later I got the stiches out but there was a little hole at the bottom. My doctor said to keep an eye on it to make sure it healed. A few days later it started oozing. My doctor said that was okay but to watch it. I was supposed to not sit and to stay inactive until it healed. Well I'm a college student so that was hard. I missed a lot of classes because I was scared to sit or go to class. Hoping that if i stayed in bed it will heal!

Well it would close and then open and close and open so finally i made an appointment on march 17 to see the doctor. like 3 months after this has been going on! The nurse poked around and then the doctor came in. He squeezed my butt and then i guess he poked his whole finger in it and said it was infected. I cried and cried and cried! He told me I needed to go right into surgery! He started talking about this vac and packing it again. I cried for about two hours until I was calm enough to listen. I didn't want a vacuum attached to me!! I have to walk about a college campus! But he said it will heal it alot faster and keep it from getting infected. So I went to the hospital. they did the surgery and put the vac on.

What it is is a sponge that goes in the wound and they put tape all over your butt to create a seal and then they attach the vacuum. and its sucks everything together! It's supposed to be really good!!! The vacuum is annoying because its always attached to you and you have to go to a wound care clinic mon wed and fri to get it changed! while i was at home there were home nurses that came out to change the sponge but I would HIGHLY recommend going to a wound care clinic at the hospital. They seem to know more and they have doctors there that are specialized in wounds that look at you once a week! and if anything seems wrong the doctor looks at it and suggests something to do! it is awesome!

So for two weeks after my surgery it didnt really close much. But last friday (today is saturday) it was 3.5cm deep and 6cm long and monday it was 2.3cm deep and 4.8cm long and by friday (yesterday) it was 1cm deep and 3.5cm long!!!!!!!!!!!!

Within a week it healed that much!! It really is amazing!!! So that is where I am at now! So anyone with this problem I really really suggest the vac! this pilonidal stuff has caused me so much stress! but the vac is making it heal so fast i am getting back to my happy self again!! So please do it!!! I'd be happy to talk to anyone about this because I know how horrible it is!! My aim screen name is pinkisrockn and if i dont respond im probably in class or sleeping so i will respond as soon as i can! :) btw Im a girl and im 20 years old!! feel free to ask me anything you want :) and good luck everyone!!


Date: April 10, 2010

Story

Well, this just won't leave me alone. I have had this for 5 long years now - I got it at age 17. I had open healing surgery 2 months later. It healed initially, but kept reopening. After two years of this, we realized it had recurred. I didn't do anything more about it until it got infected - that's when it started to hurt! Before then it was just discharge. So 2 months ago I had the Karydakis Operation - a closed procedure which eliminates the risk of recurrence. Stitches were in for 3 WEEKS to ensure healing. Guess what happened next? The bottom part of the wound reopened, and now the doctor says the skin should heal over it - but for some strange reason it refuses to! Even the doctor is baffled as to why it doesn't heal. The top part healed fine, but I'm getting all this discharge from the reopened part. I can't ride a bike, or do any real exercise. I just think that, being a hairy young guy, I'm just meant to have it.


Date: April 09, 2010

Story

HELLO FELLOW SUFFERERS!!! I feel your pain (literally!) I am a 22 year old English girl and have chronic pilonidal disease. The first time I noticed it was in 2007. I had just got back from travelling and began to feel extremely sore at the top of my bum/lower back. There was a dull ache at the tops of my legs which eventually developed into a throbbing pain. My bottom area got so tender that I could not sit/lie down/walk/move without crying out in total agony.

My parents eventually drove me to the hospital - with me lying face down on the back seat, biting my scarf to stop me from screaming!! I was admitted for emergency surgery and had the abscess excised and drained under General Anaesthetic the same day. AAAHHHHH what a relief!!! As you will all know, that feeling after an abscess has burst cannot be beaten (ok...eating chocolate is preferable!)

I had the wound packed and dressed every day by a district nurse. It took about 3 weeks to heal and after that I had no problems at all....or so I thought.

A year later, in 2008, IT CAME BACK!!!! I felt that same dull ache, that same throbbing at the top of my bum. And I knew it was back. I went to my doctor, who prescribed me antibiotics. However, these didn't help and the abscess got bigger. I had to go into hospital for another emergency excision and drainage.

I thought my ordeal was over until one month ago this year (2010) ... IT CAME BACK AGAIN!!!!! Yes, really. I went through the same procedure as the last two times ... admitted into hospital, surgery under GA, excision and drainage of abscess, packing and dressing of wound by a nurse. Right now I am having problems with my wound site. It keeps weeping and I am currently taking antibiotics, hoping and praying that it will go away.

I have been referred to a specialist to discuss having a plastic surgery procedure. I think this will involve having a skin graft and stitches. This problem is literally a PAIN IN THE ARSE!!! I wish it would go away, as it really does stop you living life to the full. But reading this website and all your stories has comforted me...knowing I am not the only girl going through this makes me feel a little bit better. If anyone has had the plastic surgery procedure and has some advice for me...please reply to this comment :-)

Thank you and good luck everyone! xxx


Date: April 08, 2010

Story

I'm the British girl that wrote my story last week. Its now been 2 weeks since my surgery and i'm now able to sit (although with a memory foam pillow) and hoping to go back to work in a few days. My district nurse is still coming everyday to pack the wound although she say's its healed very quickly and won't need packing for much longer. The surgery itself (general anathestic) relived the pain tenfold and i'm so glad I had it and caught it early so it didn't become huge. I would recommend anyone to have the surgery (not under local, apparently thats very painful) and hopefully I am one of the sucess stories.


Date: April 08, 2010

Story

Is there one success story on this site? Who moderates this Site? Are there any physicians taking part? Thanks!


Date: April 08, 2010

Story

i am having a flare up right now.... im set for surgery on april 30th...and im FREAKED OUT!!.... most of you have horror stories about getting 2,3 or more surgeries...making rethink this whole thing can i deal with the flare up for the rest of my life??...its just freaking me out.... would really like someone to talk to ,,,any advice...anything Kristyn


Date: April 06, 2010

Story

April 6, 2010 Well my story is a year long story of dealing with Pilonidal disease. I have already had three surgeries since May 2009 and I still have a big hole in my butt.

My first Surgery the surgeon stitched me up and things seem to be going well but 6 weeks later the hole opened back up and in June of 2009 went back in for another surgery at that time the surgeon stitched up most of it but left an opening with a drain in it which was removed one week later. Things were going well started my freshman year in college going to the health office everyday to have it packed, it seemed everytime it was just about healed it would open back up and start bleeding. needless to say went back to surgeon 3 days before Christmas at which time and informed me he would have to do surgery again and really cut it wide and deep and that he felt it would be best for me to take the next semenster of school off and I did.

On January 28th went in for what suppose to be outpatient surgery..went in and stayed in hospital for 3 days on Morphine they put me on a wound vac a machine that is suppose to heal and keep all bacteria out of the wound. Went home with this vac that was always on me, had nurses come to my home every other day to change the sponge that was attached to Vac...very painful to say the least...so things were going well Vac was doing it's job..hole just about closed not more nurses after 6 weeks but had a scar with a huge scab that of course starting bleeding..back to surgeon he removed scab and low and behold there was a hole under scar. At that time my surgeon told me nothing else he can do for me need to go onto a plastic surgeon to preform a flap surgery operation.

My mother and I went to plastic surgeon and the decided they were going to do laser hair removal down in that area, which hurt like hell and then she would preform the same surgery the surgeon did 3 times before...just didn't seem right. So my mother decided to do some more research..and found out about the Cleft lift surgery and we found a wonderfuly Doctor..Doctor Rosengart whom we went to visit yesterday and he assured me that I was a perfect canidate for the surgery, since I no longer have Pilonidal issues it is more of a wound that will not heal. He explained to me that after 2 weeks I would be healed and ready to have a normal life. It will be a year for me in May of no phyical activity, no swimming etc. I also way an active person...cheerleading since I was 5 and was hoping to do in college but was unable to, I am also a health and phys ed major so again I was very restricted.

I will be having my surgery and a couple of weeks, will update site once I am recovered. As of now I would suggest never to have area stitched, maybe leaving open after my first surgery would of been a better option. Good Luck to anyone going through this and hopefully you won't have to deal with what I have in the last year of my life.


Date: April 05, 2010

Story

im going through this right now.. i got my first flare up in november 2009 and since then i have had 3 flare up. the doctor wants to do a surgery but now i do now want to after reading all of these stories, mostly ALL of you have said you had this painful surgery and then it still came back... what the point of letting them cut me open if its just going to keep coming back?... im having a flare up right now... what am i to do?


Date: April 02, 2010

Story

I'm a 32 year old British female and had my surgery 6 days ago and still cannot sit or lie on my back. I stayed over night in hospital as I had surgery at 11pm. The surgeon left an open wound the size of a golf ball and the district nurse comes round every morning to pack it. I have spent the last 5 days laying on my side, propped up by various pillows, on the sofa bed in the lounge watching sky tv. And i am sooo bored!!

When all this 1st started 2 weeks ago I thought i had just bruised my coocyx. After 3 trips to the doctors and 2 types of antibiotics it became clear that it was getting worse so i was sent straight to hospital. After reading this site i feel alittle nervous as i didn't realise that it could come back, no-one has mentioned this to me at all.


Back to Previous Page

Looking for more stories?  Visit our archives.

This Archive was Posted: 07/29/2010.