Personal Stores Archive #2

Personal Stores Archive #2

Stories from Dec 15, 2000 to January 31, 2001


Date:: Wednesday, January 31, 2001

Story

I discovered my cyst in April & did not know what it was. I went to the doctor in November & was told it was a pilonidal cyst. Unlike most everyone on this page, I had not experienced ANY pain from this cyst, just some yellow drainage. I was given antibiotics to control the drainage and after six weeks the drainage didn't stop. After further consulting my doctor & reading up on the subject here & on the internet I decided to have the surgery before I experienced some of these nightmare stories firsthand. I was put to sleep in the hospital & had the cyst removed in a procedure that took about 40 minutes. My wound is not fist sized as mentioned here but he did have to dig down about 4 inches to get all of it. The wound is of course open & very sore. The only sore part of the wound is around the edges where the incision was made. There is no feeling deep in the wound. The hydrogen peroxide does not sting until it gets to the top of the wound where the incicion is. They say I'm healing fine & should recover completely in six weeks.

Date:: Monday, January 29, 2001

Story

hi,i am a 14 year old (young, i know:)),i am nervous too but not alot. im having my surgery in about 4 months. my parents alwasy tell me its nothing to worry about. now since its been a while since i know this i havent been nervous about it anymore, u old ppl should cheer up. this sugery is simple nowadays think of the thousand ppl who got this during world war.thank god that u found about it now coz if u didnt and left it you would be regreting urself by now.

With hopes for a safe sugery for y all

Date:: Sunday, January 28, 2001

Story

Hi. I am a 40y/o male who is about to have my surgery this Thursday....I am nervous and don't know quite what to expect but this site has been a blessing. On Christmas Eve I couldn't even sit the pain was so unbearable;I thought that I had bruised my tailbone..a few days later I noticed this pus in my butt crack..the pain went away and i just thought i had a boil or something...3 days later it burst again so I went to my doctor and he said it sounded like a pilonidal cyst and sent me to a surgeon and gave me Keflex..This was my first flare-up although I have had back pain off and on for about a year but just figured it was from standing on my feet all day at work..Well the surgeon told me that this has been going on for awhile and I have 5 sinuses...He is going to marsupialize them,etc..Guess the weird part will be having to wear the maxi pad he recommended after surgery and then using the nair on my butt to keep the hair away...He did warn me that it is uncomfortable surgery...Thanks again for sharing stories and making me realize that I am not some freak with hair growing inside my butt..Will let all know how the surgery goes and the healing process..

Date:: Sunday, January 28, 2001

Story

Hi!! I am a Mexican pacient who suffered from this horrible disease. I write to let you know that I was operated in a Public Hospital that is part of the Social Security System in my Native Country. The operation was performed by an excellent surgeon, his name is Carlos Campero. I want to encourage everyoane of you to take the operation with calm and resignation.

Date:: Saturday, January 27, 2001

Story

I had my first encounter with my pilonidal cyst in October of 1999. I thought that I had bruised my tailbone because the area there was sore. 2 days later the pain was unbearable. I had my mom look at it, and she said that it looked like I had a pilonidal cyst. She had one when she was my age. So I made an appointment to see my doctor. She confirmed that I had a pilonidal cyst and sent me home with some Tylenol 3 and something for the infection. She said that if that didn't work she would have to refer me to a surgeon. The next day the pain was so bad all I could do was lay in bed on my stomach and cry. My mom immediatly called my doctor and she arranged for me to see the surgeon. I went to the surgeon the next day and had it lanced. That was a lot of pain. And packing it was the worst. After lancing it and it had healed up I had to schedule surgery. I went in for surgery in January of 2000. This was an outpatient procedure. The surgeon stitched it closed. I went in at 8 am and was at home by 1 pm. BUT this was no where near the end of it. In April of 2000 I had to have stitches to close the rest of the wound. By July 2000 it FINALLY healed up. I was so excited that this was finally over. Then a couple weeks later a small hole opened within the scar. So my surgeon had to open up a section of it for it to drain properly and start over again. Well, to make a story short it cleared up a few weeks later and since September of 2000 I have had no problems. Im glad that I opted to have the surgery...the pain of the infected cyst was worse than anything I have every been through before. Best of luck to anyone who is having the surgery or has had the surgery.

Date:: Saturday, January 27, 2001

Story

Greeting fellow sufferers and survivors! My original story was 10/28/80. I'm having surgery this week, Wednesday,1/31/01, by a plastic and reconstructive surgeon. This is my fourth surgery in about 23 years. I've been open and draining for about 10 years now as I thought that was my only option after three surgeries. This surgeon promises success and I'm really banking on it. He is a perfectionist and has an excellent reputation in the community. Best of luck to all of you, I hope you only have to deal with this cyst/sinus only once in your life. And, as I keep telling everyone, stay off the ice! Scar tissue is not as elastic as normal skin and will splt very easily if you hit the ground!

Date:: Saturday, January 27, 2001

Story

I had my cyst operated on about 6 years ago and my doctor butchered my ass. it is scared and the top of my crack is crooked. The hole of the cyst reappeared but in a slightly different place. Whats strange is that it has never drained or bothered me since the operation, its just ugly.

Date:: Sunday, January 21, 2001

Story

I first notice symptoms when I was in my late teens. I had an incredible itch at the base of my spine. I dealth with it by scarching it until it bled and drained. I spoke to my doctor several years later about it. He said the recovery from surgery is very painful (confirmed by a friend who had it done - he said he'd never go thru it again) and as long as it drained regularly he wouldn't recommend the surgery. So, I've lived with this (so has my twin sister) for over 30 years now. Once or twice a year I get the itch and I scratch it, it drains and it's over (okay, it's a little sore for a few days from all that scratching) until next year. I can live with this. My sister's symptoms are exactly the same and she said she'll live with it too.

Date:: Sunday, January 21, 2001

Story

Date:: Saturday, January 20, 2001

Story

January 20, 2001

What's up! If your answer to that question is, the level of the green pus draining out of my butt is the answer then we have something in common. My name is Todd, when I was a senior in high school, i.e. 17 I was walking up the stairs at school and I felt a sort of moistness in the area of my behind. I went into the bathroom and looked at my butt in the mirror and to my dismay there appeared to be blood on my jeans. Like others, I too assumed that I had either sat on some red stuff or had cut my butt. It wasn't until months later that I discoverd the open wound in my "crack." I made an appointment to see the doctor for the wound that never seemed to heal and drained wierd stuff. I saw my primary care physician, he told me it was a cyst. He gave me antibiotics and reffered me to a surgeon. This surgeon told me that as long as the cyst didn't bother me to much that I should just keep it clean and not worry about it. However, if it continued to flare up and drain then I should get it removed. It did continue to flare up and drain, therefore, I got it removed on december 12, 2000. A general surgeon performed my surgery. I was reluctant to get the procedure done because, who likes surgery? However, I am glad that I did. I was in and out of the hospital In about five hours. Recovery is painful, this being the case I didn't do much besides lie around for the first week. After two weeks I had my stitches taken out ,but there was a catch, this type of procedure seems to be a "lingering" one by which I mean, even after one gets their stitches removed you still have fluid that will probably will need to be drained, as was the case with me. Approximately two weeks after having my stitches removed I had lots of fluid drain out. (This is probably the most annoying aspect of this problem) I am 22 years old and I am a college student. When I had a large amount of fluid drain out, I was out late on a friday night at a work Christmas party. Luckily for me I was wearing a long shirt so know one but me knew that it had happened. Usually, if people see wet spots on the bottom of guy's pants they might jump to the conclusion that you "dumped your drawls." I also have an image to maintain, Being that I am a "good looking" guy who is 6"2, 180 it doesn't do me much good for me to walk around campus or what have you looking like I just don't like using the toilet. I probably have rambled on long enough. I am now in my sixth week of recovery. The pain is gone, but I still am making use of many gauze pads. The pilonidal cyst has been a formidable foe for me for about four years now. Hopefully, with the aid of products such as nair(yes, I am a stud and I do put nair on my crack and get a smooth butt to try to prevent in grown hairs which is thought to be one of the causes of pilonidal cysts) I hope that my cyst is entirily gone and will not recur. For those of you who are in "limbo" about getting your cyst removed, my only advice is to get a "good" doctor and find out exactly what your problem is and listen to them. However, I don't remomend that you play the game of antibiotic, flare up, antibiotic, flare up game to long. I would get flare ups, then go on antibiotics for about 3 years. I am glad I found this site! Before today I thought that I was living a rather unique existence. I hate to say it but, I'm glad that I'm not alone. Not that I would wish a cyst or any medical problem on anyone. Stay clean!

Date:: Friday, January 19, 2001

Story

My name is Natasha and I'm 16 years old. This year has been very hard for me and my family, but things seem to be turning around. On new year's eve I was making cookies in my kitchen for the party later on that night. I'm a very clumsy teen, and when I went to wash my hands I hit my lower back on the marble counter-HARD. I didn't feel any immediate pain, but it did sting a bit. The beginning of the week went by as usual, until on wed. when I began to feel alot of pain in that area. On thurs. I had to have my mom pick me up from school because I was in so much pain. Friday rolled along and I couldn/t dress for school that morning. he pain became unbearable, and no one around me had any idea what was going on. On sunday I went to the ER and the doctors there took some x-rays and said I had fractured my coccyx. They gave me some silly pain killer that I could have gotten OTC, but I didn't complain. They told me my fractured coccyx would take 6 weeks to heal! I wasn't about to sit around and wait that long in that much pain, so on mon. I went to see the orthopedist I work for. He examined me and confirmed the broken tail bone, and gave me Vioxx (ARTHRITIS MEDICINE!!!). On wed. of that week it happened. I saw smelly, disgusting pus coming out of between my buttcheeks. It was very embarassing. I took my temp. and saw I had a fever. Now, I'm not stupid... I know pus+fever=INFECTION. I was home alone, but I called my doctor up and asked if this was normal. He said no and sent me to my regualr doctor. Well, to make a very long story short, they FINALLY discovered I had a mighty big abscess (think the size of an ORANGE) and sent me to another hospital for sugery. The next morning they opened me up and found not one, but TWO HUGE INFECTIONS. It's been 8 days since my surgery, and I'm healing perfectly. I've stopped taking the pain killers and I'm off the antibiotics. The total gauze the doctor had initially inserted into both abscesses comes to a whopping 9 ft.. We are all amazed at how well I feel. In a few months, the doctor will be removing the cyst. Wish me luck!!!

Date:: Wednesday, January 17, 2001

Story

January 17, 2001

I'm 35 years old and a survivor of Pilonidal Cysts. I had my first flair up at the age of 16 and at the age of 23 I had a cluster of cysts removed. In 1991 I had a second operation to remove a smaller cluster of cysts and I remember the surgon joking that he would just cut along the dotted line. In the past 9 years I have not had a flair up or a boil but I do check myself at least twice a month and during the summer I shower twice a day. My scar is thick and long and it's become more pronounced since I started loosing weight. I've read a lot of horror stories on this site so let me give you some words of hope and advise. If your doctor is a jerk find someone else to treat you. Go into the doctor's office armed with information and don't be afraid to ask questions. Surgery is painful and recovery can be long but it is well worth it. When the treated correctly you can be free of pain and swelling for years and years. I realize that the cysts can return and that is the reason why I do bimonthly checks. If and when the cysts returns I plan on cathing it early and having it treated agressivly. Be healthy.

Date:: Monday, January 15, 2001

Story

I don't even know where to begin! This website is wonderful though; I only wish I could have found it a few years ago. I’m 18 years old/female, and have been dealing with pilonidal cysts for about three years. At first I was too humiliated to tell anyone about the condition, including my mother. I tried to ignore it myself, hoping that one-day the pain would go away. Unfortunately weeks passed, and then months. I personally had no idea I was dealing with pilonidal cysts, but my mother finally encouraged me to talk to a doctor. The doctor said it was totally unnecessary to see it; after all, it was only hemorrhoids. So, we made an appointment to see someone who specialized in hemorrhoids. Finally, he was able to tell me that I had three pilonidal cysts merged together. I had reached the point where draining them would be useless; surgery was my only option. We found a really good doctor to perform the surgery last summer. I waited so that I could do it after my high school graduation and before my classes began in college. The surgeon was able to stitch up the wound, but after three weeks, it had to be opened up again because it hadn’t healed. So, after the second surgery, they didn’t stitch up the wound. A nurse came to my house twice a day for more than a week to change and pack the wound with gauze. I was doing pretty well after the first month…but I haven’t gotten any better since then. In October, the surgeon opened an area up again with local anesthesia. It is now January (SEVEN MONTHS) after the first surgery, and the wound hasn’t healed completely. I can feel that the cysts are coming back…flare-ups began again today. I have had to deal with unbearable pain for the past few years, and especially during the past seven months. I really don’t have to describe it, because I know you all have been there too. So now, after two operations in the hospital, countless numbers of excruciating visits to the surgeon’s office…I’m still in the same condition as I was when I first noticed the pain three years ago. I’ve finally decided to stop going to the doctor’s and to live with the cysts. If after all of my effort and praying, and I still have this problem…there has to be some reason why I am supposed to live with this. I don’t want to discourage anyone who is contemplating whether to have surgery or not…just be hopeful that it all goes well…I pray that it does.

Date:: Friday, January 12, 2001

Story

Today is exactly six weeks after the surgery. "Almost done," is what I find myself telling everyone. I am a 22 year old female and first noticed pain when I was 16 or 17. I remember the night I first felt it very vividly. My sister was laughing at me because I told her I could swear I was growing a tail. Since then it's bled, been sore, annoying, drained enormous amounts of puz, and had two major flare ups. (that bloody open nasty wart looking thing) I had my first surgery september of 1998. It was a simple removal and I was stitched closed. Of course as luck would have it, IT CAME BACK. Six weeks ago I had my second surgery this time it wasn't quite so simple. They left a hole in my back. The wound was 12cm long 5cm wide and about two inches deep. (that's not counting the small part they were able to stitch closed) I'm a very small girl and 2 inches deep meant you could practically see my bones! I have to confess I STILL haven't seen the hole or crater whatever you want to call it. I have got to be the biggest chicken to walk the face of the earth so I dare not look at it. The first week after the surgery was a true nightmare. I thought I was going to die of pain, the vicaddine did nothing. I just about killed my poor boyfriend everytime he changed the dressing. During the first week the gauze kept getting stuck to my wound and he'd have to yank it out. I tried to complain to the doctor but he just told me that was good. He said that by pulling it out like that I got rid of old dead skin thus promoting the growth of new one. (yeah, since it wasn't his skin being yanked out) Taking a shower was another nightmare. The first time the water felt so hot in my wound. I, again, (sorry babe) yelled at my poor boyfriend to make it colder. (no the water wasn't that hot it just felt it) During the second and third week the wound drained like there was no tomorrow. The pain did get a little better, I stopped taking the vicaddine during or after the third week. Little by little it's closing and "I'm almost done" Even though the pain is nothing compared to what I already went through I'm still really uncomfortable sitting for long periods of time. Six weeks later, I think it's safe to say, I survived. I'm not done healing. I still have an open wound, I still walk funny and I get tired amazingly fast. Before I stop writing (what unintentionally is turning into a novel) I do have to say that my doctor and whole medical group were very kind to me. After the first visit, he ordered home health nurse visits for me and had my saline gauze and other supplies mailed to my house. I hope that it was all worth it. I don't know what I'll do if this thing ever comes back. If you're unsure.... I decided to do it because, I had help, (boyfriend whom I live with) I had insurance, I'm young so the healing's faster, and It was my only CHANCE of getting rid of it. The only alternative option is "dealing with it" That wasn't one I was prepared to do for the rest of my life. Take care and good luck on your experience I sincerely hope that it's better than mine.

Date:: Thursday, January 11, 2001

Story

I must say that I feel very lucky after reading all these painful stories! I am a 20 y/o female who had surgery about a week ago. Since I've had two friends that recently had this surgery, I knew what a "lump on the tailbone" would mean. I had a tiny little lump, about the size of the tip of my pinkie finger, just to the side of my tailbone. The only reason I noticed it at all was because I had the slightest tinge of pain while doing sit-ups. Embarrassed, but determined to deal with it while it was small and not painful, I went to the doctor.

Sure enough, the tiny little lump was a pilonidal cyst. After the horror stories of surgery and packing from my friends, I was a lot less than excited. However, the doctor was suprised that I came in so early--tiny lump, no pain. It was the smallest cyst he'd ever seen. He wanted to operate immediately (Jan 2, 2001).

The surgery went well: I arrived an hour early, was put under general anesthesia, and 40 minutes later woke up minus a cyst. My incision was less than two inches long, and had been stitched completely shut. I did not need packing since the cyst was caught early and was so small. Now, a little over a week later, I'm almost completely healed. My stitches come out Friday. (Thank God--they itch!!) I've been able to sit (with the aid of a pillow) since five days after the surgery.

**********If anyone who found a little "lump" on their tailbone is reading this--go to the doctor NOW. The sooner you go, and the sooner it is removed, the less time, pain, and embarrassment you will endure.

I did not have any packing, sitz baths, or anything of the sort. DO NOT WAIT!!! You will only increase the pain, surgical skill needed, and recovery time to heal!

----Andrea

Date:: Tuesday, January 09, 2001

Story

I am a 32 year old male, with a nasty cyst. I also had never heard of this condition prior to my own discovery. My signs and symptoms were exactly like others in the stories...A mysterious pain developed in my tailbone region... I am writing this two days after the lancing of the cyst. The lancing was no party, according to the Doctor, Lidocaine doesn't work as well on tissue affected by infection. Something about the PH of the tissue. It was very painful. Also, the unpacking of the incision the next day was no party. I hope this thing heals up and never returns...like everyone with a pilonidal cyst. i agree, this is a great web site.

Date:: Monday, January 08, 2001

Story

What a great site. But to tell you the truth, after reading the personal stories below, I'm more scared of surgery now, then ever. I am female and will turn 36 in two weeks and have had my Pilonidal Cyst since age 19. I had it lanced three times in the first couple of years. Through past years, I have had "flare ups" anywhere from twice to 12 times a year. I was thrilled when I actually went a year without a flare up (back in the early 90’s). During the last few years, it seems like it's gotten more frequent, but I'm scared to death of the surgery. I have a good friend who is in his early 50's and had surgery a couple years ago. He was on disability for 6 months! He couldn't sit for two months and was in pain for almost a year. To this day, he still feels a little pain. He told me it wasn't worth the surgery and that the after affects hurt a hundred times worse than the cyst coming and going. He really made me have second thoughts.

I usually get a flare up while driving. So this year I took precautions on my 8-hour drive to see family over Christmas. They didn't work. That lovely little pain that sparks in the middle of the night reared its ugly head on Christmas Eve. The pain wasn't too bad, and I sometimes wonder if I'm just getting used to it. The swelling and pain subsided after only five days, but this weekend, it came back again. Oh yes, sometimes, I'm "lucky" enough to have it almost go away, then it comes back after a week or so.

I'm trying to decide if I should get it lanced and clean it out next time it comes back. It makes me sick just thinking about it. I actually visited a male doctor on a referral last year that really made me feel uneasy. I was considering surgery, but after meeting with him, I changed my mind. He really scared me and seemed to have no sympathy whatsoever. I talked to a nurse friend of mine about his recommendation and she just about had a fit. He suggested that I come in for surgery when the cyst was in full force. My friend said absolutely not. I should never have it operated on while it was active. So yes, I must agree with the many people below who say to make sure to find a good doctor and one who knows what he is doing.

I remember reading one time that one in three women will get a pilonidal cyst in their early adult hood. It amazes me how we can send a man to the moon, but we can’t figure out how to get rid of this terrible condition. Good luck to everyone and know that you’re not alone.

Date:: Saturday, January 06, 2001

Story

Wow!! I feel like such a baby after reading some of these stories!! 7 inches?? Goodness, mine is only about the size of a silver dollar!!! I first was diagnosed with my cyst in 1996 at the age of 17! My grandmother took me to the ER because I had this tiny, swollen, pink colored bump. When the DR told me what it was I immediately started crying because a dear friend of mine had just went through the same thing!! She referred me to a general surgeon and gave me tylox for the pain and Keflex for the infection. DIDN'T WORK!!! I went to the surgeon about 4 days later. WHAT PAIN!! He lanced it with no numbing no NOTHING. He cut, pressed and sent me home. No packing this time. About a year later I married and pretty much thought it was gone. I still felt the bump but there was no pain. Well, to my amazement, it reoccured soon after my marriage began. PAIN PAIN PAIN... This time the ER doc numbed it, cut it, pressed it, put water through it, then packed it(which, I am sure you are all aware, the packing hurts the most). Anyway it went away for another year. Then of course came back. After going through this again I said I AM HAVING THIS SURGERY!!! It is amazing how quickly we forget pain. Anyway, for the next year it came back about every 2 months. It went away...I thought. From 1999 until last night it NEVER came back. I had it lanced and packed and everything and my husband said during the whole thing I was yelling, "I WILL NEVER GO THROUGH THIS PAIN AGAIN....NEVER EVER EVER". I am really going to have this surgery..I think. I have been reading these horror stories, and I do not know if it is really worth it if it may come back. I think some of you are lucky. Mine never drains on it's own or pops or anything. I have to have it lanced everytime. Well, I will keep you posted. I will be seeing a surgeon soon. Thanks for listening!!

Date:: Friday, January 05, 2001

Story

Well, like alot of the people here, I had no clue what I had to begin with. I noticed pain every once in a while on my tailbone, especially between my regular drives between Alabama and North Carolina, but ignored it and it would go away. Well, this June, it got pretty bad, and thats when I noticed the swelling. Being the stubborn 21 year old guy I am, I waited until September to see a doctor, having a slight phobia about various people seeing me with my pants down, but he knew what it was immediately. Mine had tracked about 2 1/2 inches up to my lower back and made a nice large abcess there where it was draining. A common theme here seems to be doctors lancing the thing, and it just coming back a couple of weeks later. Same here. Take note those of you who have not had this done yet, it just dosent seem to do a thing besides cause pain. (Besides, I spent the night in the E.R. because they couldnt get it to stop bleeding, only to have it reappear again 2 weeks later, so my view on the matter is a bit tainted) Anyway, I tried finishing my classes, but started to get behind from missing classes and couldnt catch up, so my advisor told me to get a medical withdraw. I had my surgery ~ November 29 or so, and since then, about 2 inches of it has closed up (with granular tissue) leaving about 1/2 to go. The only major complication I had was a bad batch of saline solution used to wet the gauze before packing. It caused me so much pain, taking Perkoset, Vicoden, and Darvocet did NO good. No fun. But once I figured out the saline was causing me so much pain (about a week and a half) it has been relatively easy to deal with. My doctor today just burned some of the granular tissue off with Silver Nitrate, similar in effect to dry ice. Not much fun. Ok, time to end, but words of advice, make sure your doctor knows what it is and how to treat it properly, and then just do what he/she says. Pretty simple. Oh yeah, and Im over the whole butt phobia now, not much of a choice in that. Good Luck, God Bless, and quick healing. Take care!

Date:: Thursday, January 04, 2001

Story

January 4, 2001 To the 23 year old guy whose story I just read that states he is in Cyst Hell:. First off as you can tell you have lots of company. Second go to a whole new Doctor those guys are bozos and obviously are scared to deal with it. Shame on them for making you feel like some freak. I know the feeling quite well myself. Third do not allow them to make you feel it is weight related there are tons of thin people that have this it is just bad luck and seems to be in the genes. See a colorectal specialist if you can. I know doctors are expensive and in fact I had no insurance and was adviced to seek help from Vocational Rehabilitation who paid for everything. It was interfering with work flaring up all the time so they paid for the entire surgery. There is help out there although options are limited, I know, I lived with it for over 20 years of flare ups. Have the surgery you will be far better off. Try Iodex for the flare ups have your local pharmacist order it if they do not stock it. Apply liberally and use a heating pad it promotes draining. Take Care and Good luck.

Date:: Thursday, January 04, 2001

Story

Hi to everyone. I have been on this site a lot lately looking for some advise. So, first of all, i would like to thank the people that have let me talk to them. Next,I would like to share some of me experences of being a 14 year old girl with this embarassing problem. I think that i first noticed it in march of last year. My mom and i both thought that it was just a small cut from when i was on a cruise. It seemed to go away for a while and then, in November, its back. I went to me doctor right away becase it now looked like a hole the size of my pinky nail. Before the doctor even looked at it, she knew what it was. The next day, i went to see a general surgeon. Three weeks later, I was in for my surgery. I was out of school for two weeks and got very behind. About two weeks ago, (a month since i had my stitches out), my mom and i relized that it was wide open. well, i went to the doctor just yesterday and found out that i have an infection. The weird thing is that it is giving me cold symptoms. Im on some pills and other anti bacterial stuff. I will update the people that i have been talking to but i just want to let you all know that if you see anything wrong, go the the doctor asap!

Date:: Thursday, January 04, 2001

Story

I have been living in Pilonidal Cyst Hell for the last year. I am a white male, very close to my 23rd birthday, 6'1", 310 lbs. I have been told by the doctors that my ideal weight should be around 198-210 lbs, so I am around 100 lbs. overweight. I have a MASSIVE cyst. To make things worse, I have had to move around a lot, and have only been able to see the same doctor twice for this. I have averaged a MAJOR infection every four months! This thing is driving me crazy from the amount of pain it is putting me through. I don't know how to explain how big this thing is, but it is truly MASSIVE. All three doctors that have seen it have bascally said that is the biggest cyst that they have ever seen or heard of, particulary with how deep it goes. All three doctors have told me that they do NOT recommend surgery based on how large it is. I translate that to meaning that they are afraid to do it themselves. Let me try to make it clearer how large this thing is. One of the doctors that I saw for it practically started drooling over it. He when on about how he was treated these for over 30 years and had never seen or heard of one so huge. He called in another doctor to marvel at me like I was a circus freak. He started saying that he could write a case study on me, and said that he wanted me to come back the next day so that he could be prepared to take pictures of it. Of course he told me this, he did not ask to do it. Obviously I did not return for my follow up. Since none of the doctors that I saw was willing to remove it, the only way that is has been treated is by the lance and drain method. I was going through so much gauze that I think the lady at the store that I was trying to mummify someone. The second doctor I saw on the next flare up recommended that I tape the super thick maxi pads to it, since it drained so much fluid. That certainly worked the best, and I would recommend that everyone, even if you have a small one. You women reading this know how pads operate, and they were a lifesaver. If you have had one of these and found yourself away from home, without any new dressings, and desperately needed to hange the one that you had on, then you know what I'm talking about. I know that a contributing factor to the flare ups is that I have a difficult time properly taking care of it when it is being drained. Since I have moved around a lot, I don't have any friends or family around who can help me. I am married, but my wife can't do it. She has a weak stomach, and the first time that I asked her to change the dressing, she vomited at the sight of it, and then fainted. If I can't find a doctor willing to remove it, then I don't know what I will do. I certainly can't handle the thought of going through life having this thing drained 3-4 times a year. If I have to have one whole butt cheek removed, it would be worth it. Sorry to dump my personal horror on you. I found this site while I was trying to look for any new info on this thing and just wanted to let the people out there that think that they have it bad know that they should be thankful, not embarassed, because they could have been much, much worse.

Date:: Saturday, December 30, 2000

Story

Hi, I just want to say this is a great site. I'll just start off by saying for the record that I'm a 21 y/o male. I started feeling pain in my tailbone a little over a month ago. At first I thought I must've injured it somehow although I couldn't remember any striking injury and it sure didn't feel like a bruise. It was a whole different type of pain altogether. I went to the health clinic at my university and was quite embarrassed to tell the doctor that I had swelling and "unexplained pain" in my tailbone area. I was relieved that he almost immediately knew what my problem was. I didn't like having to take my pants down for the doctor (who does?), little did I know he was the first of the multitudes of people who would be seeing me with my pants down in the aftermath of this cyst. You'll have to get used to it, there's no way around it. Anyway, he explained to me what it was and that is may have been brought upon by trauma to the tailbone area or by prolonged sitting. He referred me to a general surgeon at a local hospital, my appointment was in two days and I wasn't sure if I could endure the pain for that much longer. That night, it burst on its own and, although messy, the pain pretty much stopped. I was reluctant to see the surgeon since the pain had stopped, but when I called him up he strongly recommended I see him anyway. When I saw him he said he wanted to schedule me for surgery to have it removed the next day. Again, I was reluctant since it wasn't very painful anymore, but after reading all your stories about it recurring I'm glad I did have it done. So, I initially went to the clinic to report my problem on a Tuesday, and that Friday I was in the hospital. This was the first time I had any type of surgery, so this was a brand new, and quite scary, experience for me. They gave me a spinal block anesthesia which numbed me completely from the waist down and also gave me something mysterious in my IV. Whatever it was, it did its job because I was giggling thoroughout the procedure. The only bad part of the whole thing was that my spinal anesthesia took three times as long to wear off as they predicted. So, I was laying on a hospital bed completely unable to move my legs for just about the whole day. That was the most frustrating part of the whole procedure. I felt absolutely no pain throughout my whole hospital stay... none until I got into the cab to go home. That's when the spinal completely wore off and the pain started. They gave me a bottle of Percocet at the hospital which I really did need to use the first week. I spent the whole week after the procedure face down on a couch, unable to sit and just barely able to walk with a lame shuffle. I had to go (and still have to go) to the school infirmary to have the nurses change the dressings on my wound. After the second week the pain more or less went away and it only hurts now if I sit with less-than-perfect posture. They say I'll still have to continue to have my wound packed for at least another month or so, it's very inconvenient. They told me that my wound was unusually large, though, so you all probably shouldn't expect to have to go through this for the same amount of time as me. Now, just a few days shy of a month since the surgery I still feel pain if I don't sit properly, and I have to pack the wound every day even still. But, it seems to be healing nicely and I'm glad I will not have to worry about it recurring once this is over with. It was a rough week after the surgery and I continue to feel the effects, but I'm sure a month from now I'll be laughing about the whole thing. A last note: I had never even heard of pilonidal anything before I was diagnosed, then the week that I had my surgery four other people I know were diagnosed with the same thing, and I found out my grandmom had the same problem when she was younger. Weird coincidence. Anyway, good luck, everyone, with your cysts. You're not alone out there.

Date:: Wednesday, December 27, 2000

Story

Hi my name is Crystal and about 7 months ago I too thought I had brusied my butt and couldnt remember how I had done it. The bruise turned out to be the most painful thing i have ever had to go through. I hate to go to the hospital so i kept putting it off untill finally my mom had to make her 21 year old daugher get in the car and be taken to the hospital E.R. At the hospital they told me it was a pilonidal cyst and lanced it without numbing it in any way. That hurt so bad that i was scared to follow up with the general surgen. Then 5 months later The Cyst came back but my friend had just gone to the hospital and gave me some of her antibiotics. It went away and i was very relieved. A week later it came back but alot worse and i tried to put it off. Thinking I could handle the pain untill it burst but it wouldnt bust. It got to the point that i couldnt sit stand or even lay without being in constant breath taking pian. So off to the E.R.again. This time i went to a different hospital and was so glad that i did. The doctor looked at it and gasped saying I am so sorry. He said it was the worst he had ever seen. He gave me morphine and seditaves iv push so The lancing wasnt nearly as painful as the first time but i didnt follow up with him thinking it wouldnt come back again. 1 month later the cyst returned and this time it got really big and painful.It was leaking and I returned to the E.R. determined to do anything never to have to go through this again. This time the doctor allowed my mother to go in with me she watched the whole thing and as he lanced it I watched her slide down the wall. She got very sick. I did follow up with the doctor this time and he currently has me on antibiotics and packing the wound twice a day. I visit him tomorrow to set the date for my surgery. After reading all of these stories I hope and pray Im not going through with the surgery for nothing. I am very thankful for the person who made this web site. I have serched for info. on this disease and have been very unlucky untill today so from the bottom of my heart THANKYOU!!!! To everyone who is going through this horrible disease I pray for you and Wish you all the luck in saying bye bye to pilonidal cysts forever.

Date:: Tuesday, December 26, 2000

Story

First of all let me say thank you so very much for the gift of this website. Up until now I was so utterly embrassed by this condition and I thought I was the only person to experience such horror. I am a woman and I have been suffering with this problem for a little over a year now. The first time I had it lanced but the second, third, and fourth times I just took care of it the best I could until it drained itself. Since it has been well I've been seriously thinking about surgery but I was too afraid but now I know I'm not alone and that others have done it also, I will have the surgery. Once again thank you and I will be back again. God Bless.

Date:: Sunday, December 24, 2000

Story

The first time I had a flare up was in my early 20's. (I am now 30) I noticed what felt like a bruise on my tailbone, but couldn't remember falling down! It came back a few years later and a doctor explained that it was a cyst... told me to take hot baths to make it drain and call for antibiotics if it got "hot" or more painful. On and off for the next few years, it came and went. Last March, it became very irritated and painful (thanks to being in grad school with lots of sitting in front of a computer no doubt!)I had to have it cut open and drained. it healed over, but the doctor warned that if it came back, surgery was in order. I felt discomfort and a little pain a couple of times over the next 8 months, but refused to believe it was back! On Thanksgiving, it became clear that it was infected and would need to be drained again. Ouch! I ended up in the ER. I must say that although the actual surgery was more "intense" of a procedure, I found the draining in the ER the most painful thing I have ever experienced. The Lidocaine was painful going in and useless in numbing the area. I felt everything and I let everyone know it!!! I had the surgery to excise the cyst area a week later, done by a General Surgeon (who had experience performing the surgery on other young women). The first week was pretty painful and depressing. The doctor forbade sitting for the first week (not that i was dying to sit!), so I spent a lot of time on the couch. I was unable to take painkillers due to major nausea, so it may be much less painful for others who can tolerate them! After the first week I was able to go back to work and school. Sitting was comfortable again after the second week. My wound is healing well... the packing is just demeaning now... no longer painful.:) It looks like it will be healed up totally in the next few weeks. Right now, I am so glad i had the surgery. It was very scary to decide to do it, but it really wans't as bad as I thought it would be. i am looking forward to my future without this affliction! Good luck to all of my fellow cyst strugglers! I hope that healing comes your way!

Date:: Friday, December 22, 2000

Story

I have to agree with everyone when I say that this is a great site . You have done a wonderful thing by showing people that they are not alone with this problem .....Let me start by saying I'm a 31 year old female. I can't remember when I first noticed the soreness ,but I do remember when it flared up in April of this year. I couldn't walk because of the pain was so great that I was rushed to hospital and they cut it opened and drained it. Everything seemed to go alright, it healed fine and closed over .But then on the 25th of November 2000 it resurfaced and I was taken straight to the hospital again with yet another operation. I was doing everything the doctor told me to do with keeping it all clean etc.But while it was healing a second one surfaced and yesterday I went under the knife for the 3rd time in 7 months . I was told that I must wait for this one to heal properly now before they can remove the cyst. I am so afraid that another one may appear before this one is healed .I can't do any more then I am doing now .I sterilize my under garments and I bath 2 to 3 times a day . With all 3 cyst's they never did come to a head and burst. They just grew and grew untill I couldn't walk. For all the people who suffer from this condition, I truly feel for you all . I will write again in a couple of months to let you know how things turn out.

Date:: Tuesday, December 19, 2000

Story

Hello it's me again from October 27 who had the surgery on November 13th. Well I came from a visit with the surgeon today and all is healing extremely quickly. The vitamins and zinc that were suggested seem to be healing the two incisions faster than expected. He had to open them slightly to check for any pockets, bubbles, or infection but, the good news is no more packing with gauze from this point on. The lower incision where the actual cyst canals had formed and where the infection always abscessed has healed alot faster then the upper incision where the scar tissue had formed. That will be the one to have problems I believe in the future, if I have any problems at all. The doctor does not seem to think it will reoccur but says you never know. At this point I will be happy to be back to my normal routine and hopefully (cross your fingers) never have to deal with this again. Good luck to those heading for surgery and I hope all turns out well for you. Thanks again to Sasha the lady who started this informative web page it has been a huge help for all of us. Take Care. Have a great Holiday. - Sandra

Date:: Monday, December 18, 2000

Story

First, I must say this is a great site. I am glad I am not alone with this strange disease. About 2 years ago, I noticed a little lump near the top of my butt. It didn't hurt so I did not worry about it. Then, about one year ago, I felt a little discomfort. I went to the doctor because I thought it was a hemorroid, I had no idea what they were. So, the doctor searches for hemorroids and says there is nothing wrong. I'm thinking, there is a lump on my butt and nothing is wrong? She gave me a prescription for the hemorroids anyway and the pain did go away. This past September, the area began swelling and the pain was unbearable. I went to the emergency room and they said it might be a pilonidal cyst. They sliced it open and drained it. I took antibiotics for 2 weeks and then went to my regular doctor. She put me on more antibiotics and had me come back in October. She said it was just a small cyst under the surface and that she would remove it. So, she cut out this little cyst and put me on antibiotics for another 2 weeks. I thought it was heeling when 2 weeks ago it started hurting and swelling again. I went back this week and she drained it again and sent me to a general surgeon. Today, I saw the general surgeon and he cut out some more infection and wants to see me again in two weeks. He says the cyst is definitely pilonidal and is 1 inch by 2 inches. In two weeks, he will schedule the surgery. Until then, I am to take antibiotics to reduce the infection and keep the area clean with hot baths 2 or 3 times a day. I will keep you updated.

Date:: Saturday, December 16, 2000

Story

I am 40 years old, and have been suffering with these damn nuisances since 1975, when I got my first one. I was playing basketball and had white gym shorts on. It burst while I was playing, and at the end of the practice, the back of my shorts was red. Extremely embarrassing. I had two surgeries, once in 1975 and again in 1979, both times the wound was left open to heal from the inside out. Both times it took over 9 months to heal. Imagine wearing a huge maxi-pad on the inside of your trousers and trying to get a date. Not exactly a turn-on. I had flare-ups in 1988 and 1994, but they healed. I tried riding a bicycle-stupid me-while on vacation in Wildwood Crest, NJ. 2 days later, I was in a great deal of pain, and 2 months later, I'm on my way to surgery-again! On December 26th, no less. Helluva way to spend Xmas. While I am hopeful this will be the last time, I don't believe it will be. All I can say to those who don't have it--It's a pain in the butt. I hope that some doctor will read these and come up with a remedy to this. To those who do-- In the meantime, keep the faith!