Personal Stores Archive #46

Date: December 30, 2008

Story

I am so glad that I found this website. . .what a savior.

This will be long. . . I am a 24 year old woman. . .and I can't even remember how old I was when I had my first experience with my pilonidal cyst. I know that I was in high school. I was told it was a boil and that I just needed to let it come to a head and rid itself. It came back a short time later, and my GP sent me to a derm. I was told that I had a cyst, that had become infected and was prescribed antibiotics. This cleared it up and a few months later it was back again. I decided to just deal with it, and I did for the next few flares, but finally needed to see someone else. Around this time I was a junior in high school, my GP sent me to another derm, and this time I got the diagnosis Pilonidal Cyst, I was told about it and shown the three teeny tiny sinuses that I had, none of them draining ones however. I was told he would remove it, but that it may come back. WHAT?!?!?! So anyway, I had my first surgery. He removed it sewed me shut and sent me on my way. (obviously he left the sinuses) When it was time to have my stitches out, it was swollen really bad and had to go to the ER to have them out.

One year later, it was back. I went to the same derm, and was told that it was to big and that I had two options. Have open surgery or deal with it. I've been dealing with it ever since. I have a flare up at least once a year, maybe twice, and I just did what I had to do to get by. But when I was 9 months pregnant and had my last flare, I knew I had to get medical help since I didnt want to put my baby at any risk. So I had my first lancing, and it was awful. It stunk and hurt so bad, plus I was ready to drop a baby at any moment. The Doc told me it was an empty space about the size of a chestnut under my skin, no hair or cyst. Really just the three sinuses, which had grown, and this hole for things to get trapped in. The surgeon who lanced was awesome, and she even had one! She said she would be more than willing to talk to me about options if I felt that surgery was what I needed. I decided to wait and see.

So here I am 9 months later, and I am having another flare. I have made the appointment for a consultation. I cant do this anymore! My sinuses are now the size of a pencil tip and the cyst area seems larger than ever. I'm scarred that I have let it go too long. I will keep you all posted on what comes.

Date: December 28, 2008

Story

I am 15 and am almost halfway though my sophmore year of high school (thank god) and I noticed my first cyst almost exactly 1 year ago. Since then I have had about 5 "flare ups" and am even in the middle of a flare up at this moment. My worst one was about a month ago. It was the size of a half-dollar coin and hurt worse than anything I'd ever experienced and to top it off, It hurt like that for an entire school week. Sitting in those hard chairs for hours is hard enough but I nearly cried every time I sat down (and did a few times). I've told all my friends that I have lower back problems. Only one of my friends actually knows what I really have. I want surgery more than anything in the world but it would cost my parents almost 4,000 dollars that they don't have. I may get the surgery as a present on my 16th birthday in March but I doubt it because my parents can't just pull large sums of money out their butts. I hate my "condition" and I hate that I need this surgery just to be a normal teenager again. But Wish me luck. ~Much Love

Date: December 23, 2008

Story

One of the worst,but with a good ending.

I stumbles upon this website yesterday, and could not believe the amount of people with similar stories. Well, my story is not a good one, but, so far, has been blessed. Although my story is not recent, the scars will remain and my heart goes out to each of with this issue. I am , what would be called, the primary recipient for this problem. I'm a male and of Hungarian decent, which means about as hairy as one would wish to be. This pilonidal cyst laid me in the hospital for over a year with six operations and two different hospitals. Now, part of the problem is it happened back in '84, and the second part was it was in the military.

I believe mine to have started from the amount of sit-ups that was required to perform throughout basic training and subsequent Navy schools. I went in in 1983, and stayed in hospitals in November of 84 until back to active duty in Feb. 86. The first four surgeries were at Philadelphia Naval Hospital( which has since been imploded and leveled, thank God) The 5th and 6th surgeries was done at Scott AFB, IL.(they fixed all the mistakes). I endured 3 spinal anesthetias and 3 generals. My worst surgery was the fourth, as I was cut open over 12 inches in length, 3 inches wide, and my tailbone was visible as far as the depth goes. This was measured by my father who flew out to see me for a week. I don't remember a whole lot for about three weeks due to the fact that I had a bad staph infection and fever got to as high as 105. They were not able to put me in an isolation room, because it had ants in it. Yes, this is all true.

And it gets better. I am 6'4" and before surgery was a very fit 225 pounds. Before I came out of the staph infection, I had diminished to 164 lbs. I actually did not care if I lived or died. So many mistakes by the doctors, I will not even go into that. My condition improved and the doctor wanted to discharge me to active duty. Thats when I got so scarred I started shaking. Then they found another tract and told me it was time for a fifth surgery. I had had enough. My father got me transferred to Scott AFB. What a difference! Two more surgeries followed. I don't need to into the amount of pain that I endured, I have read in these stories enough pain. Lets just say in the year I was in, I broke two headboards and 3 bedrails. (My incision required three rolls of gauze and when they pulled it out, my hospital bed endured the brunt of my pain)

I did manage to heal and finish my six years in the Navy, something that I really wanted to do. I did have back surgery in 2000, that I believe was linked to the cysts( Oh, I forgot, I had a total of 32 tracts that formed over that year. I have the nastiest scar to prove it.I still have trouble with the scar, but an happy to say no reoccurrance in the past 22 years. The scar gets aggravated and my legs fall asleep constantly. They just cut so much out of me. Your body is tough on how much it can take.

With this story being told, here is what I have learned.

1. Clean, Clean, Clean.
2. Get second opinions.
3. Your paying the bill and its your body.
4. If your job requires you to sit all the time, invest in the tushcush.
5. Keep your faith. This is a hard one to do at certain times.

My hope is that everyone afflicted with this painful,and sometimes reocurring disease can find peace and wellness. This website has been great to find that you are not alone.

Date: December 22, 2008

Story

Hey everyone I just had my surgery today. It was NOT bad at all. I had the closed method with a drain in it. I feel really good right now and really no pain so far. I waited 2 years before having this surgery and my advice have the surgery as soon as possible. I did not want it by any means, but it really is not a big deal. Good luck to everyone who is recovering or who is having surgery. Dan

Date: December 22, 2008

Story

Hi everyone, This site has helped me with very useful information. I am a 23 year-old female. About 7 months ago I had what I thought was just a boil in my butt crease. It was painful and when I thought it was ready, I drained it and didn't think more of it. About 4 months later, I was looking in the mirror (as you do) and I noticed a hole with a small lump under the skin. When I pressed it, it expressed foul smelling bloody pus. I was horrified and started an internet search. I realised I needed to see a doctor so I went to see a GP (who gave a completely wrong diagnosis). She referred me to a surgeon. The surgeon identified it as a pilonidal sinus and said that mine (which by this time, I had been taken care of and had not flared for many months) was a small one. The lump under my skin by that time had almost disappeared and when he pressed it, no discharge was present. He said the infection would not go away but surgery was an option I could take at my convenience. He also informed me about the risk of re-occurrence.

After this visit, I was just relieved that mine was a "small one" but I wanted surgery. Because all I wanted was for the hole to be closed. Once that's done I was sure I could prevent it from happening again by taking extra care of the area. While I was waiting for my surgery, I noticed that I had developed two more holes! There was no lump, pain or discharge but with this realisation came my determination to have surgery.

I had surgery on the 11th of November 2008. Excision with primary closure. It went well and I had little pain. I was told to stay off work for 2 weeks. My stitches were removed 15 days post surgery. The nurse said the wound was healing nicely and looked good. I was happy and relieved. I started to sit more and walk more. I even started a job (which unfortunately involves a lot of sitting). I am now over 5 weeks post surgery and yesterday I checked the wound and to my horror I saw a hole! It's bigger than any one of the previous holes. It is not discharging but bled a little because of the disturbance. I can't believe it. I don't know what to do. I don't want another surgery esp because since it offers no guarantees. I think I am ready to live with it. What i want now is for the hole to heal in as closed a manner as possible.

This is my story. it has been an emotionally difficult one to talk about. Any advice or comments are welcome

Date: December 19, 2008

Story

I "discovered" my pilonidal cyst about 6 months ago. I did not want to get surgery and tried to live with it but it got in the way of a lot of things and when it "acted up" it really put a damper on my day ( or few days sometimes). I consulted a surgeon and he said he usually doesnt recommend surgery but he said I was a good candidate because my cyst was far removed the midline compared to most cases. I felt really comfortable with my surgeon and he knew everything and more about pilonidal cysts and surgery that I had researched. I am about a week and half out of surgery and my wound is healing fast and I shouldnt have any problems. I'm really happy I got surgery and even happier (AND LUCKY) that my cyst was located in the area that it was and that Im healing without infection. To all that have it... Make sure you do your research and feel comfortable with your surgeon, dont let them know what you know about the cyst, and see if they can throw info at you.

Date: December 19, 2008

Story

I am 31 years old and i just got this thing like 2 years ago. I have had it drained 5 time in that year. I finally went to my doctor and said I am not leaveing till I see a surgen. So i had my sugrery on Dec 9 2008 and he stiched it. I had it stays closed I dont want another surgery. Oh And my whole family calls me monkey girl. Because my sister found on the internet that the dimple in the remains of a monkey tail. Melody

Date: December 19, 2008

Story

My son's story has a positive ending...finally! I have not visited this site in almost one year. I remember a time when I was glued to my computer reading every story and comment that I could find. The support and advice this site provided me, as the mom of a son with pil. disease was immeasureable. It breaks my heart to read all the stories of unresolved issues, unhealed wounds and lives not fully lived because of this condition.

But, the day finally arrived when my son was able to move on, and I with him. For 2 and 1/2 years my teenage son endured 3 open wound excisions. Healing failed at every attempt. Surgeons always suspected the cyst activity had returned and cut him open again. He was hooked to a wound vac for weeks and weeks, missing his proms, most of his Jr. and Sr. year of high school as well as having to stop playing his beloved sport of football. His activities came to an abrupt halt and he questioned whether he would be able to head off to college as other kids his age.

To make a long story short, we were truly "led" to find Dr. Bascom. My discovery of him was too bizarre to explain any other way. My son had his fourth surgery, the cleft lift, with Dr. Bascom last January. We journeyed from Nashville, TN to Eugene, OR to have the best surgeon perform this surgery. Within a few weeks after surgery my son had returned to his normal activities. No more weekly visits to the wound clinic, no more packing, oozing, prisma, infections, pain, depression and embarrassment.

This past Sept. we packed up my son and sent him off to college, enjoying life as a healthy young man! One of our physicians phoned us today to ask if we had contact info for Dr. Bascom to pass on to him as he has another patient in the same condition that my son was in. I asked my son if he would be willing to speak with this young man, to share his story and offer advice. My son's advice..."have a cleft lift procedure". My heart breaks for all of you enduring such suffering. I hope you will each find resolution.

Date: December 13, 2008

Story

The pilonidal dimple that i was born with 15 years ago and was told numerous times was closed just got infected. My doctors kept telling me that it was closed, there's nothing wrong with it, its just a dimple or a little hole in my skin. It got sore a lot but they just told me that its my fault. I'm a huge klutz and i'm in the dr.'s office all the time with bruises and sprains (i walk into walls, fall down stairs, ect. my firends think its hilarious that i can't walk across a plain, flat surface without finding something to trip over) well the dr told me that i have just fallen on my butt too many times.

I moved 2 years ago and got the best dr in the world at the nearby pediatriction's office but i didn't want to hear that i was making it up, again, so i didnt tell her and a few months my mom told her that i had it because my pants were falling down a week earlier and my mom saw the "hole" and was teasing me that i have it, but she always did. She mentioned it to the dr and she made me show her and that led to her freaking out and telling me to have the surgery to get it removed. My mom doesn't want me too because i just had surgery and i was on crutches for 2 months and it drove her crazy cuz i'm a wimp when it comes to pain. my mom said that unless i'm in excrutiating pain, i'm not having the surgery. The doctor doesn't want to wait (she wants to do a preventive surgery because if it is actually closed all the way through then there is a l arge chance that it won't come back and i will never have to go through the pain).

I'm a very self conscious person and showing someone my butt is awkward enough for me so thats my only reason for not getting it taken care of. Oh, btw the little achy pain i have in it might just be cuz i fall on my butt b/c the doc said it would hurt way worse than that. I hope i can get it taken care of!! <3

Date: December 04, 2008

Story

Okay, I'll try to tell you my story. I hope my translations will be good (I'm dutch, my english isn't that well.. especially not about sinus pilonidalis :P), but let's give it a try...

I'm a 19-years old pharmacy-student from the Netherlands. In 2001 (when I was 11 years old) I noticed some strange stuff, coming from behind. Because I had some troubles with pimples, I thought it would be a shor tlasting thing. But after a few months, there was also pain. I couldn't sit normally at the couch or a chair, without it being painfully. I finally dare to tell it to my mum. She took me directly to the doctor. He immediately saw it was a sinus pilonidalis, so he personally called the surgeon, and that afternoon, I was in the hospital for a check-up. The surgeon told me it was a sinus pilonidalis, and put something with nitrate on it. That was burning, but it should be helping.

A few weeks later i came back, it was bigger. There was only one solution: a surgery. That had to help, and i would be released. That's what i thought at that moment, so I was relieved. The surgery went well, but it left a big wound which had to heal from the inside, and 2 times showering at a day. Everything went well, the wound was almost closed, until after six months my mum found out 2 little small holes, as if they stitched in my skin with a 'knitting-needle' (don't know how to translate it :P). We went back to the surgeon and he had bad news: there was a new sinus pilonidalis. That was dissapointing, but the next surgery would be bigger than the first one, and they would close the wound this time. So here i go again, the second one!

After the surgery, it took only three weeks (!!!!) before the new sinus pilonidalis came back. Again i went back to the hospital, and there they told me that indeed, it came back. I was a little desperate, what would they do now? The surgeons told me that the sinus came from hairs growing into my skin, so i had to depilate. After a third surgery, we went shaving and all that kind of stuff.. but unfortunately... it came back again. Meanwhile, I was 2 years busy with a sinus pilonidalis. We asked the surgeons for advice again, and they told me about lasering. We had to contact a centre where they could laser it and that it also would be assured. After a lot of telephones, we found a centre in Amsterdam, the SNIP, where we made an appointment. They told me it was possible to laser that place, but the wound should be closed before it was possible!! I went on with a new surgery, which was left open again (the fourth surgery).

After (i thought) 6 months, the wound was almost closed, so i quickly made an appointment at the lasercentre. The luck wasn't on my side, 2 days (!) before the laserappointment, the sinus pilonalis came back. It looked like a 'cat-mouse'-hunt, the sinus was the mouse, the laserthreatment was the cat.. only the mouse was faster every time. The fifth surgery was there, it was my fourth sinus-pilonidalis-year. Yeah this went well!! The fifth operation was again an operation with an open wound and again, the sinus pilonidalis came back. Again, I was 6 months free of the sinus. So... there was the sixth sinus pilonidalis, and still no availibility for the laserthreatment. The sixth surgery was the last chance for the hospital where I was operated every time. If it would come back after that again, I would go for a second opinion at a academical hospital.

It was 2007... the year i finished my study at high school, and would go to the university to study Pharmacy. I had that dream, that i would go to university without a sinus pilonidalis, as a normal 18-year old teenager. Unfortunately... It was my seventh year with sinus pilonidalis, and even the sixth surgery (september 2007, during my first year at university) didn't work :( Not funny anymore. We decided to go for a second opinion in the Academical Medical Centre (AMC) in Amsterdam, because I had a lot of troubles with my intestines. We thought it would maybe something like Crown-disease. The specialist in the new hospital did a MRI-scan and that (fortunately) showed that i didn't had Crown-disease, it was really a sinus pilonidalis. That was a relief, but i still had that sinus pilonidalis. The surgeon told me to do the same surgery as they did at my old hospital, and.. if that wouldn't help again, he would do some kind of skin-transplantation, in Dutch a 'Zwaailap', I don't know the english name. It's a transplantation of your own skin. They rotate some piece of skin of your butt to the wound.

But.. he wanted to do the same surgery first.. so that was the seventh one, in may 2008, the second surgery during my first year at university. The surgery went well again, and after three weeks i could return back to university, to have my exams. Welcome back! The luck wasn't on my side again, after 2 months the sinus pilonidalis was there again. It was holiday, so there was no chance for a new surgery. The surgeon sent me to a nurse who was specialized in the deployment of stoma's, because my new wound was really deep. It first had to heal from inside, before a new surgery (the skin transplantation) could happen!! So, 2 months long we put some kind of strange stuff in the wound (called Prisma), which dissolved when it took op draining out of the wound. I also had a lot of bleedings during this period, the skin and tissue were damaged, so every 3 days i had a big bleeding. It also was painfuld. The Prisma-stuff helped, the wound was smaller after 2 months. We went back to the surgeon, and expected him to tell me that they would do the skin transplantation. That wasn't his planning, he wanted to talk with a plastical surgeon, to see if she would think if that skin transplantation would help. So, i had to wait a few weeks longer... before i could come for a check-up at the plastical surgeon. She (yeah.. finally, a female doctor!!) checked the wound and wasn't sure if the transplantation would help. After thinking for a while, she decided she wanted to help.. and told me what that surgery would be.

**Wowww..**, a huge, huge surgery!! But okay, it had a bigger chance for succes. It was oktober 2008 (yeah, 2 months ago!) when I was in the hospital for the surgery. When I woke up, I had a lot of pain. That afternoon, the 2 plastic surgeons who'd done the surgery, came to visit me. They told me they didn't do the skin transplantation :(, but the same surgery as all the times before. The transplantation would have been to big, because there was only a small sinus pilonidalis found. They closed the wound with a special technique (low on low), so that wouldn't give the tissue to form a new cavity. I had to lay on bed for 2 long weeks, missing all my exams. After 2 weeks the stitches were removed but the wound was still not completely closed. So, I had to lay down on bed for 2 weeks longer. After 4 weeks laying, I finally was allowed to sit. But the luck was for a short time, because the famous little holed came back in the wound, a sign for a new sinus pilonidalis. They became bigger everyday.

After a week I had to go to the hospital for a check-up, and the surgeon told me there was a new cavity, despite that lay-on-lay-technique. She put a drain in it, to help the fluid to go out. Last monday (2nd december 2008), i went to hospital for a new check-up. It was bad news: there was another cavity. How's the situation now? After monday i'm a little depressed. I don't know what to do anymore. The surgeon told me, that i have to put 'Kaltostat' in the wound everyday, to clean it from fluids (against infection). I have bleedings every 3-4 days. I asked the surgeon about the skintransplantation. She told that this is my last rescue, but is afraid that, like the previous times, new cavities will form. Than I would have a bigger problem than ever... there wouldn't be a solution anymore. So, the next weeks i have to go on with putting Kaltostat in the wound, to hope that it will become smaller. And I hope there will be a chance for an surgery soon, which helps me to release me from my sinus pilonidalis. And give me FINALLY the chance for a laserthreatment....! I'll dream on......... and I'll hope my dream will come out soon. 8 years is enough!!

Date: December 04, 2008

Story

I have had pilonidal abcess for 10 years since aged 15. I have had 5 open surgeries where they removed bigger and bigger chunks until there was nothing left. I had a surgery in january 2008 for the latest one and they removed everything. I had a wound from the top to the bottom of my behind and it was down to the bone. This wound has never healed, I have been in unbearable agony for 11 months. My clothes are constantly covered in gunk from the hole and I have had daily dressings for 11 months. I have had 8 courses of antibiotics which have caused me to get severe IBD (inflammatory bowel disease) due to antibiotic overuse. I also have complications of crohn's including uveitis and severe immobilising back pain from my coccyx to my neck.

The NHS will not allow me to have the Bascom procedure. I have not been given any pain killers, I am taking pain killer's given for my crohn's instead. I have never had more than a few months infection free. Everything gets reinfected and then reinfected again. The scar tissue is now so weak if I sit down too hard it rips it open again. I have to sit on a special cushion at all times and cannot go anywhere without it. I do not go out anymore because the combination of problems prevents me from doing anything enjoyable. I used to play sports, martial arts, swimming, walking, rock climbing, camping, etc and now I am housebound at the age of 25. Believe me this illness is terrible. PLEASE do NOT let your doctor over prescribe antibiotics. Every infection I get now is resistant to everything and nothing works. My immune system is shot due to the remicade I am now on for Crohn's. I am depressed and see no hope for the future, I cannot go to university to study even though I desperately want to and the music I love has had to stop. I could never even have a job, I am too ill so what do I have to look forward to any more?

Date: November 30, 2008

Story

I discovered that I had a leaky butt in high school. I think that doing lots of sit ups forced some in grown hairs, plus I have a very hairy rear. I went to the local ER and they bounced me around for awhile. However they all knew that it was a pilo.

I postponed the surgery until I was twenty. The surgery went well but the healing did not. I had a closed wound surgery, looking back this was probably a mistake because right after the surgery fluid began collecting and it could not drain. The surgeon would suck the juice out with a needle to no avail. Finally he had to make a small incision to release all of the collecting fluid. This made the pressure go away but the wound never healed. In high school there were three small sinus drainage holes on my back side I think of them now as three additional butt holes, because now I am 30 years old and they are still with me. I have some drainage right now and I think that its infected again. I have decided to live with my pilo because the previous surgery did not work and I can't afford to take time off of work. I have swelling that hurts because my tailbone feels full at least once a month of so, but then the swelling goes away. The drainage that comes out is minimal, but extremely bothersome to my nostrils. I refer to the draining as "that time of the month" for me.

My wife thinks its funny that I get a period also. Sometimes I think about having the surgery again, but I just really don't want to go through with the whole ordeal again, plus it might not work anyway. Keeping the hair shaved, {with nair} seems to be the most effective way to minimize the swelling and draining. Sometimes I might go a month or two without really thinking that I have four buttholes, but then I forget to keep my hiny clean and before I know it I'm gettin my period again. I guess I've just gotten used to having it and I have accepted that we are a team. Hopefully I can keep managing the situation alright, should I get to much drainage to frequently, I may be forced to go back and try the surgery again. I am glad that I found the other stories, and hopefully someone will be glad they found mine.

Date: November 30, 2008

Story

i am a 22 yr old female who has had this problem for about three years. the first time it happened it drained by itself and let me tell you, it was gross. the second time it happened was a few months ago and i had to go to the hospital and have it lanced. i have never experienced that much pain in my life! i am a big baby when it comes to needles and having them give me numbing shots around my butt was horrible, i have never screamed like that in my life! i am bringing this up now because i am in the middle of another one. my mom wants me to have surgery and my dad doesnt because they can come back. im kind of freaking out because i do not want to go through that pain again of the needles and i certainly am not up for packing it everyday. when they packed it when i was numb it hurt, i didnt like the pressure and i honestly dont know what to do at this point, im so frusturated and angry. my mom doesnt understand the pain that this causes, even though she was there when they lanced it. i just dont know what to do.

Date: November 28, 2008

Story

Just had surgery done week ago today. Open wound excision with 3 sinus holes (?) cleaned and stitched no real pain. Don"t see any real progress... Dr. said not to pack hole-everywhere I read says pack.

Date: November 28, 2008

Story

I'm a 28 year old Irish IT worker 4 days out from surgery. I was embarrassed going to the Doctor on my 1st Flareup as my GP is a woman, but the pain was so intense, I had to do something. I had 4/5 flare ups in total including 2 in 2 months that were all treated by antibiotics for the infection and not the cause. On the 4th flare up I got demanded a consult to a Surgeon based on reading here. I had 3 "holes" and arranged surgery for 6 weeks later (Lucky me based on some of the stories on here)

After the meeting the Surgeon told me to remove hair from "down there". I don't know if this was a reason or just a coincidence but I didn't suffer any pain or discharge from that time until my surgery. I used a cream and was pretty simple.

As I said earlier I'm in recovery at the moment. The pain at the moment is mainly when standing up from lying down or sitting. Getting the wound dressed everyday is a bit of a chore but hopefully will be worth it in the long run.

Thanks to the site admins for the forum to share useful knowledge and to all the people who contributed their stories on the site. By reading those stories it brings strength to others. 

Date: November 27, 2008

Story

I am a 44 yr old female with a pilonidal cyst that has been driving me insane with pain for 4 mos now. I have no health ins but have been to the ER. The doc there told me my cyst is too deep(it feels to me that its wrapped around my spine) and i need a surgeon. With no health insurance and i dont qualify for medical assistance from the state of Maryland,,,i have chosen to IGNORE the symptoms. But with pain this bad its become an extreme challenge. I have become depressed and decided to ease my depression with the aid of a tanning bed (the lights help my depression)...and LOW AND BEHOLD THE TANNING HAS HELPED THE CYST!!!!!!!! i dont know how.......but it seems to work! my cyst is not bothering me a bit!!!!!!!!! HURRAYYYYYYYYYYY! Has this ever happened to anyone else out there??????? drop me a line anita amkBottumsup@yahoo.com

Date: November 23, 2008

Story

so I've had two "flare ups" in my life, the first one was when I was 21 and living away from home at college. I was feeing sick, like as if I was getting the flu, starting to feel feverish. I noticed that my butt was hurting when I tried to sit down, but I foolishly didn't make any connection, I had never even heard of a pilonidal cyst. About 4 days into this of worsening pain I went to the ER since the school doctor wasn't there on the weekends. I had to go to the ER in Greensboro, NC not the best hospital in the world by any means. I was so embarrassed because the doctor was young and a guy, which made the whole thing worse. By this time I had a fever of about 103 or 104 and was throwing up and couldn't eat. He diagnosed the cyst but didn't drain it and gave me antibiotics.

About 2 days later it was getting worse and I was so sick that I could barely move. I went back to the ER where I saw an older doctor who immediatly drained the cyst. It was the grossest thing ever, he drained alot of blood and pus from the cyst. After a few days I was much better. About 1 year later, when I had no health insurance it came back with a vengence. I went to the ER where they told me to watch it and if it got worse to come back so they could drain it. They also gave me some antibiotics, all told this cost me about 1,000 dollars. When it continued to get worse I saw a surgeon who drained it for me again, and offered to do surgery. Since I had no insurance I said I would wait on it. This visit cost another 1000 dollars. Now I have insurance but my doctor doesn't seem worried about it. It still hurts sometimes from sitting and my scar is pretty gross-the top of my butt is sort of misshapen now, and I have to ask my boyfriend to check if its getting red again. I had to basically do all research on my own and this site was the only one that was at all helpful.

Date: November 19, 2008

Story

hi folks thanks you for this site!!! I only add my story in frustration as I am currently dealing with a re-occurrence. My first experience was a 18 after falling on my rump on my 18th birthday. I woke following day to a large bump and some of the worst pain ever. I too thought that I had broke something. Thankfully Canadian health care allowed me to see a doctor pretty quickly I had it lanced-was told that I was born with this and sent to a surgeon.

The first procedure was a closed one and I did not have any issues with it at all. Even thought that the scar was pretty cool and wanted to get a tattoo of a boot lace connect the small scars over the incision scar!!! Well about 2 years later it was back with a vengeance!!! This time the new doctor suggested an open wound approach. Did that, had at home aftercare, was diligent about shaving and cleaning.

A year later.....there I was again...thinking 3rd times the charm.....same procedure...mind you I think that they are running out of cutting space by this time.....and same thing again....upon my 5th surgery-the doctor was so rude about the hair issue- I was crying in recovery. I mean really- I am (no pun intended) anal about body hair of any kind and use every product known to man to get rid of it. All that being said I did not have a re-occurrence for 13 years. My son who is 13 has never seen me suffer with this. Approximately 1 month ago I fell on my butt again and low- and behold for the past two weeks I have been suffering. It swells and drains and swells and drains. I am so to the point where I dont want the surgery again!!!! I dont know what to do. Oddly enough I thought that it was done and was looking at plastic surgery to rework the extreme amount of scarring. Guess thats out!!!! Thanks again for the site....I am going to take drugs and sit in the tub!!!!

Date: November 17, 2008

Story

I am a 40 year old female who was born with a Pilonidal cist that was wrapped around my tailbone and my spine. I never paid too much attention to it growing up. I had lower back pain but my mother always chalked it up to over playing. About 12 years ago I woke up one morning in absolute pain. I could not move. I went to my doctor who told me that he couldn't do anything. It did not present itself as a boil. I had no protrusions of any kind. I spent days in major pain going to 3 hospitals with no one doing anything. Until my mother took me to a completely different county to go to another doctor. We didn't even know what the problem really was. I guess that I just didn't understand what I really had. With in 3 hours I was being rushed into emergency surgery. I thought that it was all over. Until I woke up 2 weeks ago. IT's BACK.....

Date: November 17, 2008

Story

Well I'll start out by saying that I'm a 14 year old girl, and yes I'm overweight and my grandfather and mother have both had to deal with this as well.

Anyway the first time I ever had an pilonidal abscess (please excuse my spelling, I'm on pain meds right now for a 'flare up or reoccurance) was around the end of August, start of October of this year. The first day of high school I came home and lay down and I felt sore near my butt, like on the tail bone. I just thought that it was because it was my first day back, all the walking and sitting, so I shrugged it off. The same thing happened the next day, except it hurt a bit worse. I still thought that it was nothing, until later that night that is. I woke up and oh boy did it hurt. I couldn't switch which side I wanted to sleep on without it hurting. I got up and I just stood watching tv (Cold Case may I add just for little details) for about an hour, my mom (bless her) not knowing what to do. Of course, since I got zero sleep I didn't go to school (this was only my 3rd day too).

Well I spent the day at home, embarassed and in a bit of pain. My friend invited me over to her house for the night, and thinking that maybe it would get my mind off the pain I agreed. Big. Mistake. Over the night I was able to sit down, but I was taking ibuprofeon all night and I (in all seriousness) think that it's a miracle that I didn't OD or get sick or anything. I was popping those things like they were M&Ms. Anyway, I was finally able to fall asleep on my friend's bean bag chair and woke up the next morning even more sore. We went to the mall and I had counseling that day, but I still went (again, not knowing what else to do). I waddeled (and I really did) around all day, and finally when I got home I rested for a while. I was able to sleep that night, but I woke up again around 5:00 and lay in bed (in pain) for an hour. My mom got me up so we could try going to a doctor, but nothing was open, so our regular doctor had a number to the family center at the hospital (which was also closed) and the nurse on the line said that we should go to the ER.

Well my mom drove me down and we singed in, all that, and when we got called in I wadeled down to the room and got changed, a bit nervous since I'm terrifyed of needles and she had to get her's lanced and I was just assuming that I would have to get mine lanced too. Well being self-consious I wanted a chick doctor, this is not so (this is before I found this site, btw). We waited and this male doctor came in and he told me 'Yeah...I'll have to talk to the surgeon because you might want to be under for this'.....great. Well the surgeon came in and told me that it wasn't ready yet, so we had to wait. They gave me vicodin, a prescription for more vicodin and antibiotics and I started bawling my eyes out. I was embarassed, in pain, and a bit ticked off (even though they couldn't do anything, but still). I got changed and we were on our way. I'll skip some of the stuff, but long story short I had to go back to the hospital (the surgeon's office which apparently handles this stuff) 3 times. All of them, I never got it lanced.

Eventually it went away, well not completely, there was still a bump but I was just assuming that that was normal (I had a eye sty and even though I got that cut open and drained, there's still a tiny bump although it's nothing compared to the way it was before). Fast forward to a few days ago. I realized that I was getting another one (well two, the last time I actually had three), and (very stupidly) I did pretty much nothing because I didn't want to have it pop or drain in school (big mistake and I'm now aware of this). I took some antibiotics that I hadn't taken (I only had a few left) and my mom had me soak in the tub and I cleaned the place off real well. Well it got bigger. A lot bigger despite our efforts. Last night it was so painful that I got zero sleep. Actually, last night, it also was leaking a little so I assumed it would drain on it's own...nope.

Now to this morning. I got up around 5:30 in a massive amount of pain and my mom decided that I shouldn't go to school (mind you I've been out around 24 days counting today, but I'm hoping that because of the condition I'll work something out and have to talk to the guidance counselor). Well my mom gave me some ibuprofeon and I fell asleep around 8:30 ish and woke up a half hour later to my cell phone ringing and my mom telling me that she (she works about 15 minutes away and since today's Monday she had to work) got me a doctor's appointment with our regular doctor (We live by a indian reservation, and my mom and I are both native so we get doctor visits for free, dental, all that). I fell back asleep and woke up about three hours later and I felt the most awful pain ever. I could hardly get up, walk, or sit down (as normal with these things, but it was very very VERY painful). I tried taking a shower (which I could do successfully both yesterday and the last time I had these) but ohmygod I was in so much pain that I had to get out after being in there for a minute. I sat down on the toilet (because it actually was okay sitting down for a few minutes) but then I got back up. And then when I was on there I felt the bump. It was a larger than a golf ball. I started bawling. I was in so so so much pain. I lay down in bed and I just start crying and yelling because no matter what this pain won't go away.

Anyway, my mom comes home and that poor woman because I'm crying my head off and yelling and stuff I'm in so much pain and she can't do anything for me. I got up (which took about 5 minutes) and was able to get dressed with my mom's help. Now, at this point I should mention that this sucker hurt so bad that I was literally bent over and wadeling. I mean like.....just bent straight over. My mom helped me into the car with a pillow and I lay down in the back seat for the ride (there was absolutely no way in hell I'd be able to sit). We got there and they let us go into the doctor's office without having to wait for a nurse. Well I got there and surprise surprise the doctor's a guy. Anyway, he tells me that he can take the pressure off of it/ lance it (really that's what I mean). So I kind of had little to no choice, there was no way in hell I was going to keep this thing, but I was still scared of the needle. ( And I will mention at this point that I was also a bit mad because I was told that they didn't do that sort of thing at our doctor, but NOW I'm thankful, then just a bit ticked off).

Well I change up and get onto the table and he comes in. He let's my mom spray some numbing stuff onto the area and boy it stung (I will mention, if it wasn't clear, I'm a bit of a weenie when it comes to pain so throughout all of this I'm crying and a couple of times I yelled because it really did hurt that much for me). Now instead of injecting me, that was all he did and then he (instead of cutting it like the would do at the hospital) he squeezed it with tweezers and all that yucky stuff came out. He cleans it up (which hurts) and then injects numbing stuff and squeezes more yucky stuff out and packs me up and I'm done (there's more to it, but it consists of me asking 'is it over' and crying so...I'll cut it short). I get up and feel soooo much better I'm not bent over, although I'm not completely straight, and I still have to waddle but the worst is over. I change up they give me more vicodin and antibiotics (the ibuprofeon just doesn't cut it as most of you may know lol). And now I'm done. I'm HOPING that I don't get another one for a while ( The doctor and nurse at the office today said that (well they said different things) but that I would either grow out of it or have to have surgery). It's very painful to go through everything and I should also point out that you should get medical attention at the first sign so that it doesn't get worse. Thank you for reading, if you did, and again sorry about the spelling if that kind of thing bugs you.

Date: November 17, 2008

Story

Im a 20 years old male from Sweden who had his surgery 4 weeks ago. It was an open wound surgery where i had to visit a nurse everyday until TODAY! Im finally healed. There are lot a horror stories out there but as many people say, they are worst case scenarios. The surgery was painless and the only thing that hurt was the two first weeks of daily packing, but it wasnt as bad as i thought it would be. Max 5 min of little pain in standable.

Date: November 15, 2008

Story

To the one who wrote on Nov 14, you should really have a doctor look at it again. From what my doctor said, it can grow and get bigger. Another thing is, it make tunnels. When I had my surgery, dye was used to know how much to remove. My wound is about 3 cm deep.

Date: November 14, 2008

Story

About 3 years ago I noticed a little pea-sized lump near my tailbone. I assumed I had broken my tailbone (in a rollerblading accident - I had a lot of those!) and that it was just a bit of bone in the wrong place.

1 year ago, it seemed to reach the surface. It leaked pus and blood for about a month. But only ever a little bit. I saw a doctor and she told me there was nothing she could do (of course, she happened to see it on a good day). <p> It healed up for a while, but tends to come and go, particularly if I've done a lot of sitting in odd positions.

It's been leaking blood/pus for the last 6 weeks now, but it's so small that I don't know if it's worth doing anything. Does anyone else have a small one? It's so near the surface that it's just constantly draining itself.

Or is there hidden stuff below that I just don't know about?

Date: November 12, 2008

Story

Hi all, i'm a 25 yr old mental health worker, living in New Zealand. Moved here from England ten years ago. After my diagnosis I researched a lot and found a reference to WWII where it was dubbed "Jeep Diesese". And it says how 80,000 soldiers where hospitilized from the bumpy jeep driving and quickly deveolped Pilodidal cysts! Now I drive an old classic mini - and a week ago went for a long drive and as it is so bumpy I thought I had bruised my tail bone. A bump formed, I continued driving for a couple of days and just thought it would go away. Then on the third day it became much more painful and I started using a pillow on the car seat and avoided sitting down. Started thinking that day something was not right, I actually thought my tailbone was broken at this point. However I went to the toilet (no2's) and noticed blood in the bowl! Not good I thought, so a look in the mirror revealled greyish puss and blood coming from the bump. I thought great, it's popped and I can start sitting again! But my sister convinced me to see the doctor, so I DROVE to the doctors where I was told I needed surgery today. I did not really get told at this point what I had or was in for. So armed with my bit of paper from the doctor, I DROVE myself accross town in lots of pain to the hospital.

When I arrived they put me on a stretcher in reception where I lay for a couple of hours waiting to be seen. Once taken through the doctor explained to me what I had, what was going to happen and I was taken through where I was told to SIT on a hard plastic chair (wearing jeans) for about four hours! Once a bed was found I was taken through and gowned up and just lay there. I had no idea how long I was going to be waiting for, and the nurses did not know much - only that my surgery would be in the next 12 hours or so!

About 10pm that night the surgeon came in and told me I would be taken through very shortly and I answered a few questions. I was then taken through, fully awake as I had no pre-med and told to lay on my back! The pain was now agony. When I woke up I was back in my room hooked up to all sorts of machines. No bored as I was I thought I would have a play with the machines and started holding my breath trying to set the alarms off! One hour of sleep and I was sent home! My hospital experience was not the best but the aftercare I have been getting is fantastic. I spent the night at home and the next day (today) the district nurse arrived at my home to change the dressing. She will be visiting for the next couple of weeks to change it for me! Pain has been minimal, however today I started taking pain killers. My wound is 5cm long, 1.5cm wide and 2.5cm deep. Wish me luck !

Date: November 11, 2008

Story

I had my surgery on Oct 23, it almost been 3 weeks. I lived with it for 2 or more years and I have to say removing it was the best choice I had made. The surgery went fine, I was in and out within 3 hours. It was left open, change it two times a day. I had the hardest time changing and packing it the first time, but I am able to do it now. As for pain, I do not feel it at all. My doctor said some nerve ending may of being cut and I should start feeling it when they grow back. (waiting to feel some pain, however so far it is ok. I think it will be more painful than it really is.) I am able to sit (office job) and drive. Word of advice, do not wait, this is your health. I would like to wish everyone who had the surgery a well recovery and for those who have not, you have nothing to worry about.

Date: November 09, 2008

Story

Hello all. I'm Carlos from Portugal and I'm 28. First I want to thank this forum/site: it gave me the help I needed to overcome the pilonidal cyst plus the surgery I had.

My story may help all of you that still have doubts about making or not the surgery. I've had a pilonidal cyst for 15+ years! From the first visit to my GP I had the same answer: " the only solution to what you have is surgery". I had all the symptoms: a lump in the lower back, the persistent bleeding, the odour, and from the last years two pits, but it never infected, so I never had it lanced. Last August my GP told me that he strongly advised me to have the surgery because the cyst was already interfering with my spine and posture. He said that he never saw such a prolonged exposure to a cyst, and he was afraid that it could evolve to something more serious like a fistula. I cannot tell you why I waited so long: I wasn´t afraid of the surgery, I just thought It would go away.

So I was scheduled to have surgery on October 10th. I entered the hospital by 8 am and was out by 8 pm. I had the open surgery: they've made me a hole of 8 cm wide and about 5cm depth ! The surgeon said he never saw a cyst so deep. Incredibly I felt good as I was leaving hospital: I was able to walk by myself, and I even went home sited on car. The most important part of the recovery is your diet: I took a protein suplement (isostar 90 High protein) 60g a day, orange juice 3 times a day, plenty of vegetables and fruit.

On the first days I was a bit scared about the bleeding, but I had no real pain. Of course I was taking some antibiotics to prevent infection. I began my daily packings on day 3. The nurse told me that he also never had seen such a deep hole; I should expect daily packings till late December(!). The key word on the first week is rest with your bottoms up. On the second week the truly healing began: the nurse told me that you could almost see the wound filing up. He never saw such a recovery. By the end of week 2 I was able to sit for short periods of time. It's now almost a month since surgery: I'm back to work, I'm able to drive, and I only feel some mild pain if I stay sited for long time, and now the nurse tells me that maybe by mid November I'm done. Be persistent with the nurse care, take it easy on the first 2 weeks, and be extra cautious about your diet. DO THE SURGERY. Your life will improve greatly. Feel free to contact me for any info/advice on fmt20005 [at] gmail.com.

Date: November 07, 2008

Story

To the person who has had so many issues with pilonidal cysts- if you read up on it, almost every place I have looked has said that even if you have the surgery to remove it, there is a chance of it coming back. My doctor even told me that there was a chance it would come back and that one way to prevent it coming back was to scrub and clean your butt crack. I'm sorry if your doctor never told you that, but I doubt they were being money hungry. The first time you had the issue- what did you say, 11 years ago?- research on this problem wasn't very good. They originally thought this was a men-only problem. Obviously that was wrong given how many women have posted stories on this and many other websites. Doctors are people too, and if current research hasn't found everything out about a problem, they are only going to be able to tell you about what they know.

Date: November 07, 2008

Story

I am a 23 year old woman who has recently had my pilonidal cyst removed. I first noticed it when I had problems sitting, even in a very cushioned chair. I went to webMD to find out that it may have been a pilonidal issue, and took a warm bath. After my bath the pain went away as did the swelling. I thought I was home free. Boy was I wrong! About a week later I was at work and thought I had the dreaded "butt crack sweat" and went to the restroom to dry off. I began to panic when I saw a reddish-white "ooze" on the toilet paper. Being that it was the weekend, I had to wait 2 days before I could even call a doctor. I got in and the doctor that drained it (no need for lancing since it took care of that on it's own :( ) said that it was the largest he had seen. It took him about 20 minutes of pinching my backside before he found hairs. He reccomended that I see a surgeon. Upon seeing the surgeon, the cyst was almost completely drained by then, so of course he said to let it be.

One week later, I had the fun pain again. When I went back to the surgeon, he only saw a slight swelling and told me that I could either have the surgery or wait it out. I told him I wanted to get rid of the thing! I went in for surgery this last Wednesday (this is Friday) and afterward he came in and said "you were right- you needed this out." Now mine is very small compared to some of those I have seen in pictures since looking online- only about and inch to an inch and a half in diameter, but apparantly it was quite deep. My surgeon left it open and stiched the bottom to the sides so it is a little more shallow so it will heal better. Now I was told just to change gauze every day, but not to pack it. I was also told just to rinse it each day in the shower. We'll see how that works. I do have to say this- I have not had any pain since Wednesday, and I called my surgeon's nurse to find out if they used a long acting anesthetic- I was told that they only used a general so I must be a very lucky person to not feel any pain. *Keeping fingers crossed* Hopefully that luck will continue!

Date: November 05, 2008

Story

I am a 19 year old female and yes, like all the other people on this site, I have experienced a pilonidal cyst. The first time I really noticed the cyst was a couple of months ago. I told my mother that I kept feeling pain on my tailbone and that it wasn't going away. She kept telling me that it was from falling on my butt and I told her that I never fell. It was a Sunday afternoon and it was so bad that I was actually crying. I decided to go into the emergency room and my mother was going to meet me up there. I went in and the doctor began to tell me about what a pilonidal cyst was and said that was what he was diagnosing me with. They then gave me two shots in each butt cheek and sent me on my way with pain pills and an antibiotic. I started to take the pills that actually made me very sick. I ended up back in the hospital because of the pills. They switched the pills and gave me completely different pain pills and antibiotics.

Of course, when I got home I got on the internet and read everything I could about pilonidal cysts and looked at pictures. It made me very nervous about everything that was about to happen. I had to go to the doctor several of times until they finally told me that they didnt think that it was a cyst but if it was then it would come back. Sure enough, less then a month later the same thing had come back. I mad a doctor appointment the first day I noticed it. I didnt want to wait to get it looked at becuase of the pain I was in last time. The doctor then told me that it was infact a pilonidal cyst and made me an appointment with the surgeon. I met with the surgeon the next day. He gave me an antibiotic to try over the weekend. When the weekend was over I went back to the surgeon. He said it had gotten worse and we was going to cut it open and drain it. Right then and there he gave me a few numbing shots and made a cut.

Ive had to go back to the doctor everyday for the past 2 weeks to have it stuffed with gauze. Ive been taking very good care of it and as of right now I am done stuffing and pain free. But I still have to have surgery. I meet with the surgeon again in 4 days and he will take a look at it and determine when to have surgery. He has told me that I do have 9 tiny holes in my tissue that need to be removed. I have been very nervous however this website has helped me a lot. Thanks for giving me the opportunity to learn more about personal experiences!

Date: November 04, 2008

Story

This is just in reponse to my earlier story I dont mean to sound so angry,and I hope that the success stories I have read are all doing well I would just like to add I have read way more horror stories than success stories so as for me my mind is still not at ease for surgery.

Date: November 04, 2008

Story

I have been suffering with this for 11 years,the first flare up was 11 years ago I did not have any trouble for ten years and because I knew nothing about it I did not even know they could come back,well I was wrong about a year ago and at a brand new job it did come back.It was ok for about a year when it came back again it has come back every month since then. I have to say I am quite angry that as common as this is why have they not done more research on how to get rid of them. NOONE should have to live with this pain and for the doctors that say you must have it out so it does not come back should have their license pulled since having them removed does nothing they can still come back. Must be a money issue after all if there was a CURE you would not be paying every month or so to have it lanced. C'mon people we are in the year 2008 and maybe it would take several doctors getting this and ruining there career for them to do anything since they would be able to sit,stand,lay,or function. I dont mean to sound so mean but I read all these stories and have many of my own and it is rediculous.Yah and as far as having something to do with your period yah I have that problem but if you mention it to a doctor they will say no,until you are inside my body you dont know but every flare up is either right before my period or because of injury.Quit being so money hungry hell try laser surgery or something they can do a non invasive hysterectomy with outpatient surgery and minimal scaring get with the program.