Stories
Date: November 16, 2009
Story--- I was 15 years old when I first experienced pain in my tailbone area. I was almost certain that I had broken my tailbone. I remember going to the symphony one night with my family, and I couldn't even sit down. My father took a peek (and I was so embarrassed, being a female), and he automatically knew something was wrong. We immediately scheduled an appointment with my pediatrician. When I went to the doctor's office, I was told I would need a routine surgery. She said that it would be healed in a month's time after getting the procedure done. My first surgery went exceedingly well, but about six months later, it needed to be repeated. My surgeon moved to another state, so when I needed to have yet a third surgery, I was sent to another doctor.
--- After a few failed attempts, this surgeon decided to hook me up to a "wound vac," a portable vacuum that they put onto my wound for a couple months. Needless to say, this didn't work either. It was extremely painful to change the dressing (which had to be done three times a week). I remember being a tough seventeen-year-old and just sobbing and screaming while the doctors and nurses changed the sponge which was tucked between the wound and the vacuum. It got to the point where I had to be taken into a procedure room and hooked up to an IV so they could give me intravenous sedatives and painkillers. This surgeon operated five different times before deciding that he had done all he could and that I needed to go to someone else. I was referred to yet another doctor.
--- This doctor decided to take out the biggest chunk of tissue yet, sure that the previous surgeons simply hadn't removed the entire abcess. He carved enough out of me to merit a five-night stay in the hospital. The nurses packed my wound every day with gauze/curlex-- six feet of it per packing. Everyday, the new skin would grow into the fibers of the gauze, and everyday they would pull out the gauze, painfully ripping and pulling my raw skin. I cried and cried for months on end with every dressing change. When I was sent home and my parents started to do the dressing changes, it became somewhat less painful. While poking the gauze down into the wound with forceps or Q-tips (or whatever we had on hand) was still horrible, I was now able to slowly pull the gauze out while sitting in a warm bath. Six months later, the doctor was confused. My surgery simply wasn't closing the entire way. Just like the rest of the surgeries, my wound would close to where only a tiny, miniscule area remained open. While barely larger than the head of a pin, it continued to drain and bleed, and this doctor said that he was referring me to someone else.
--- I've had 3 surgeries with this new doctor thus far, and one included a skin graft. They took the graft (about 3 inches by 2 inches) from one of my buttocks. The experience was terrible. Even though it was outpatient surgery, it was extremely painful (not so much the pilonidal abcess, but the location from where they took the graft). I wasn't allowed to sit or lay on my right side (the side from which my graft was taken) for an entire month. The skin graft (done two years ago) has left a fairly impressive scar, but it has healed nicely. Unfortunately, a tiny portion of the surgery (the section where they didn't put the first graft) hasn't healed entirely. I do have to stress, though, for anyone considering a skin graft with their doctor, that the area where they put the first graft did, indeed, heal well. This surgeon has also been fond of using silver nitrate on the wound. It cauterizes (burns) the wound to help healing and remove granulation tissue. This hurts. I will not lie. The first few times he used it, I nearly bit through my lip while trying to silence myself.
--- I'm having my twelfth surgery this December 15th after my last day of college finals. I'm now 23, and I've been dealing with this for eight straight years. The physical problems of the surgeries have been very difficult to deal with: I'm currently on four different pain killers, sleep medication, and antibiotics. I've gotten to the point where Advil and Tylenol do absolutely nothing, and Vicodin is like a drop in the bucket when it comes to pain relief. I drive to school everyday, so I just have to live with the pain all day until I get home (since I can't drive while taking Percocet). The drugs also make me so dizzy and sleepy that I just don't feel like myself. I feel drugged and lifeless. Since I've been living with considerable chronic pain for the past eight years, I've also gained about a hundred pounds since my first surgery. I was on the swim team in high school, and I used to love playing basketball. However, the surgeries have made exercise and activity so incredibly painful. For the past six months, I've had multiple mornings where I would have given my left arm to be able to stay in bed all day. I am a student, and even sitting in class for an hour is exceedingly painful. I also have scars that will last a lifetime even after I lose the weight (which I have started to do already-- 10 pounds down!).
--- But beyond all the physical problems, I truly believe the emotional ones have been harder to handle. After dealing with the pain this long, I've finally started attending a support group for sufferers of chronic pain here in the Denver area. Along with the chronic pain comes chronic depression and chronic fatigue (which only make the pain worse). Anyone who hasn't gone through this surgery can try to understand the pain, the frustration, the embarrassment of bleeding through your gauze (and jeans) while you are sitting in a classroom, etc., but, in the end, it's just impossible to describe to someone else. So besides feeling so incredibly embarrassed in the first place because of the disgusting nature (and inconvenient location) of this condition, I also feel so-- alone. I also have moments of rage, thinking about all the doctors and hospitals that just couldn't fix me. Above all, I realize, after eight years and twelve surgeries, that my parents have been so incredibly supportive, but I can tell that this surgery is kind of becoming old news to them as I feel more and more discouraged everyday. I also had plans of joining the Peace Corps and then attending graduate school, but the Peace Corps doesn't allow medical "liabilities" to join, and I can't possibly spend another five years sitting in a desk while I'm constantly having surgeries.
--- I don't know what the future has in store for me. I don't know if this will be my last surgery or my twelfth of many. I don't know if the pain, even if I am healed, will ever go away, nor do I know what lingering limitations I might have down the road. After eight years, it has become harder and harder to be hopeful. Everyday I feel a little bit more "unfixable." But after an entire night of reading these stories that everyone was so generous in sharing, I feel better. It makes me realize that those of us who have had complications are truly rare cases, and I feel like there's a light at the end of the tunnel, so to speak. I'm so thankful to have found this site, and I'm so grateful that people have had the courage to post their own, unique views of their experiences. Above all, I think what comforts me the most is to know that we're not alone in all this.
--- If anyone out there wants (or needs) to talk, I'm leaving my email at the bottom of this entry. I know that, after having shared my story, I feel better. Even better yet, if someone knows of an online support group for pilonidal cysts, I would appreciate it if someone would please email me the contact information.
--- Good luck to everyone during the healing process, and I hope you all will continue to post updates of your successes for the rest of us!
---Virginia from Denver, CO (my.mnemosyne at gmail.com)
Date: November 13, 2009
StoryMy name is Briana and I have had 2 failed surgeries on my pilonidal abscesse. I guess I have put myself in this positoin because I haven't started to reaserch this problem until now so I was depending on my doctors to know what the best thing to do would be but I was wrong and now Im in big trouble. I just got it removed the second time on Oct. 30th and just the other day it opened at the top of my incision. Im searching frantically for a surgeon in my area that is informed about this problem but I can't seem to find any. So if anyone knows of a surgeon or doctor in the Edmonton Alberta area I would be so thankfull for the help.
Date: November 12, 2009
StoryHi all,
Oh what a horrible thing to go through!!!
I have just come out of hospital following drainage of abscess, this was the second episode of this 1st being 3yrs ago. What a painfull experience!!!
Following 1st surgery and drainage i had daily packing done at home by district nurse which was also a very painfull experience!!
This time around the surgeon doesnt want wound packed, he just wants a dressing change every other day.
I was just wondering if anyone has had this type of aftercare and how did it go?
Claire.
Date: November 12, 2009
Story
Date: November 08, 2009
StoryI have been reading all the stories on this horrible condition and I have had on and off problems with this for years. I can't believe doctors don't do more for the pain when we are getting it packed with gauze. I would be happy with being knocked out everyday so that I don't have to endure it again. Call me a big sook but I have had 2 children naturally without any pain killers and can compare the packing to giving birth. It is that traumatic and everyone in my doctors surgery were freaked out by how much screaming I did when I first had it done. I am looking at the internet
again about it as I can feel that is may be coming back and I thought I might find some miricle story on how to forever rid myself of this. But all I found was everyone's different but similar stories and has made me feel not so alone.
Good luck everyone!
Date: October 27, 2009
StorySo after reading a bunch of stories about other peoples’ horror stories, I decided to encourage people via my own unique experience.
My problems started happening in the winter of 2009, when I was 20 years old. I’m a college student, and the end of Winter quarter was coming up. I had just been sick with the flu for a week, so when my tailbone started hurting I just tried to ignore it so I could buckle down and study for my exams. I also work in an office job, so basically most of my days are spent in some sort of uncomfortable chair. My tailbone was bothering me more and more, but I talked to my roommate (who’s father is a Dr. and she’s a pre-med student) and she said that her tailbone had hurt for a while the year previous because she would always study in these really uncomfortable wooden chairs in the library. I was encouraged by this and decided I would tough it out and eventually the soreness would go away.
I continued to ignore the worsening pain. I went to class. I went to work. I even went to the gym. The pain reached a point where I was having difficulty sleeping. I live in a metropolitan area – and I’m a poor college student – so I don’t have a car so going to the doctor is kind of a hassle. By Monday night I was just crying and crying because the pain was so bad. I had a really hard time walking places; I had to walk so slow and I would get out of breath walking 10 yards. My sister came over and suggested I call the consulting nurse. I had been doing a lot of research online and guessed that I might have a Pilonidal cyst. The nurse told me to go to urgent care if I was in a lot of pain. After a long a creepy bus ride, I was finally at urgent care. I saw a doctor and he immediately diagnosed it as a cyst. Woo. He said it seemed to be already draining, so lancing it wouldn’t really help. I told him that I would rather NOT have any cuts etc because I wasn’t in a very good position to get my wounds packed (me being a college student living with a roommate). Anyways, the doctor prescribed me some antibiotics and I went home. I was supposed to get a Vicadin prescription, but somehow the pharmacy didn’t fill it. That was a nasty surprise when I got home!
So that night and the next day were pretty horrible. I still went to 1 of my classes (we were doing finals review and I couldn’t afford to miss anymore class!) and to work (I wanted to avoid the awkward conversation with my boss). But that night, a miracle! I was lying down on my stomach trying to study and I felt a little rush of wetness. I got a washcloth and laid it on my crack when I finally fell asleep and when I woke up that washcloth was basically soaked in the most disgusting fluid ever. But my cyst felt WAY better. I continued taking my meds and using hot compresses. I went back to the doctor a couple of days later to check on how it was doing. The meds were working but the doctor still gave me a referral to the surgeon.
My appointment with the surgeon was for sometime in the next week or so. He checked out my cyst, we made awkward conversation, he told me my “Chi was low” and gave me a referral for acupuncture (HA!). He’s a great guy though, really tried to make me feel comfortable. We talked about options (thanks to the internet I already knew A LOT), and he suggested a phenol treatment.
Basically what happened was he got some surgical instruments and started digging into my sinuses to clean out all the crap that was in there. I couldn’t really see what he was doing, but jesus it was like he was stabbing me. Not as bad as the actual cyst because I knew it would be over soon. After he had thoroughly cleaned the sinuses, the surgeon gave me a local anesthetic and injected the sinus with the phenol. Phenol is an acid that burns tissue so the sinus will seal itself up. I didn’t feel any pain or burning (the surgeon was amazing!). I got a small bandage, cleaned up, and left the surgeon’s office. I was able to meet my sister for lunch and sat on a hard bench to eat.
I didn’t have any further pain. My sinuses are all closed up. It’s been about 8 months and all is well. By some miracle I avoided many of the horrifying things other people have dealt with. So just know that there are ways around cutting! Somehow I got a series of really great doctors who knew how bad it would be for me to deal with surgery (university doesn’t care if you want to take 5 weeks off for surgery and I couldn’t afford to take a quarter off or just not work over the summer).
I think this website is great to give people a feeling of support, but I know I was REALLY freaked out after reading some of the stories. I read a girl’s story that said she also had read so many terrible things that she told herself that if it turned out ok for her she would write an encouraging post. I agree!
Some things I learned:
1. Don’t wait to go to the doctor. It won’t go away. It will only get worse and you will regret not going sooner.
2. Don’t be awkward/ embarrassed when you see a doctor. They are a medical professional. They went to med school. They cut open dead bodies and they have definitely seen a lot nastier things in their training than a cyst. If you become a doctor you can’t get grossed out by the human body. This is a pretty common problem. The doctor has seen it before.
3. Don’t let someone fast-talk you into surgery. Luckily I have insurance with a really great company that pays their doctors on salary so they don’t push people to have unnecessary procedures. My cyst is finished and I never got it lanced or went into surgery.
4. Don’t get discouraged. Your life is not over. You will eventually be able to sit on hard surfaces. You will be able to take car rides. You will be able to ride in airplanes. You will be able to have a sex life.
Your life is not over!
Date: October 26, 2009
StoryI'm a 20 year old female college student who isn't overweight or "hairy". I first noticed my pilonidal cyst when I was about 15 almost 16, being such an awkward thing to have I never told anyone about it until one night when I was 16 and I was crying unbearably due to the pain I was in- it had gotten infected. My mother then took me to urgent care where we had it lanced and honestly, I don't really remember it that much. I do know though that the doctor did not tell us near half of the information we should have known.
I do not recall packing and unpacking the wound with gauze or anything of the sort. About a year later I went in for the surgery and once again, I have vague memories on this. They did leave the wound open, but once again did a terrible job of explaining the aftercare to my mother and I. I wish then that we would have done the research on the internet or asked more questions but the doctors never once made it seem like that big of a deal and it never occured to me that it would ever be a problem for me again.
I'm now a junior in college and two weeks ago after driving back to school I noticed it began to hurt again. I went into student health where the doctor there perscribed me antibiotics. Just three days into the antibioatics my roomate had to drive me to the emeregency room because of the pain. I then had it lanced. The lancing wasn't unbearable, no, it wasn't pleasant either. Luckily I had someone with me in the room to calm me down and to take care of me when we got home.
The next two days I spent on my side watching movies. As far as packing it with gauze I'm thankful my roommates are nursing students and this doesn't gross them out the least. The day after the lancing the packing and unpacking was terrible. After the second day though it's a breeze, I'm able to unpack it myself, sit in the tub for twenty minutes and then I have someone pack it again. I am scared though since just with the lancing I have had to miss some class and knowing that lancing will not permatly remove the cyst I'm aware that I most likely will need to get surgery on it again. This scares me due to the months of healing time when I will be extremely busy finishing up college, interning in the summer, and then hoping to find a job upon graduation.
I'm happy now to be aware of all the sites for information on this and to know that I'm not alone. It is sad to realize that these seem to be ongoing problems throughout life.
Date: October 23, 2009
Storymy son a 18 college student called home in pain with a large bump on the top of his butt crack. He went to the doctor and was told he had a cyst and given meds. the infection healed one month later the cyst was back and bloody drainage and pain once again back to the doctor he was given meds again. after the third trip to the doctor I asked him if this was a pilon cyst as a coworkers son had one when he was a teen. Finally the doc said it's time to see a surgeon for a consult. Come to find out the surgeon found three other cysts that we did not know where there. surgery was scheduled right away. My son had his sugery in May and it is now oct and the wound is still not healed!!!!! One area was so deep almost to the colon. As you would guess it that is the area that is not healed yet. I pray it heals soon it's a tough area to take care of yourself at college!
Parents beware when your general doc tells you it's just a cyst and prescribes meds more than once!! Ask could it be a pilon cyst you'll save yourself and child alot of doctors visits and longer healing time. Good luck to all of you new to this painful problem. As a parent packing the wound was the hardest thing to do because you know that you are hurting your child and yet it has to be done.
Date: October 22, 2009
StoryMy story is rather straightforward. I'm a 22-year-old male, I have a lot of bodily hair, and I usually spend a lot of time sitting down. I go to college and live with my parents. When I was 19, I discovered a lump right above the crack of my buttocks; since my mother is a chemist-bio-pharmaceutic and she studied some notions of medicine in college, I told her (after overcoming the embarrassment of course :S) and she checked it out. She found lots of ingrown hairs within, but she didn't thought much of it.
Then, shortly after turning 20, I found blood when wiping after defecating. I was also feeling a pain right above the crack. Concerned, I had my mother check it again. She saw a red, hot lump, definitely an indicator of an abscess. After reading for a while, it was most probably a pilonidal cyst. Since this was now a serious medical condition, we decided to put all awkwardness aside and act ASAP. We do not have social security because public healthcare in Mexico is nigh-useless, so I was put on antibiotics while we could find a doctor that 1.- could treat it, and 2.- was not a dishonest rip-off. We eventually found a proctologist through networking; a great physician, and a great man, reassuring and comforting when dealing with his patients. It was official: I had a pilonidal cyst. On our first appointment, I had the cyst drained. Dear God, to this date I still remember how I screamed in pain when the doctor punctured it, no matter how much anesthesics he used! DDDX
The operation, by contrast, went quite smoothly. I was nervous when I was brought into the OR, but the anesthesiologist shot me with what I think was morphine, because I started feeling quite mellow while at the same time I stopped feeling any pain. It didn't even hurt when they put me the big scary spinal blockage. With only partial anesthesia, I had the cyst cut away and removed; I felt nothing at all. Recovery was smooth as well, I could walk on my own after only a few hours. From then, I was bed-ridden for four days, on a liquid diet.
Now, although recovery was mostly smooth as well, the personal part is the part I hate most about treatments, because I usually use the computer or watch videos on my iPod to entertain myself. At the time, I didn't had a laptop or an iPod. It was the three longest, most boring days in my life. As soon as the third day passed, I pretty much jumped out of the bed, as fast as the wound allowed, and sat in front of my computer. Maintenance consisted in removing a special gauze and a spongy strip impregnated with colloidal silver, spraying with lidocaine (supposedly to ease the pain, only problem is, lidocaine burns me really bad D:), cleaning, putting a new strip and a new gauze, and resealing the wound. Every week we had an appointment with the doctor, where he would verify the state and remove stitches when appropriate. I really hated the way there, because there were two ways: the highway, or an avenue all cluttered with Mexico's infamous wall-like speed bumps. My mother is mortally afraid of driving in the highway on account of being chaotic (which I find strange because, as chaotic as it is, I love driving in the beltway), so I had to endure the bump-ridden path.
After six months, we thought the wound had already closed. Guess what? It wasn't. And it turned out that was the time I started riding my bike again to do exercise. The wound opened again, and we had to go to the doctor again to have it treated. Any kind of physical workout was verboten for the entire year. I think I gained 10 kg that year, which I only lost recently.
After a year and a half of the operation, both the proctologist and the resident doctor of my college's gym examined it again. They both declared it fully healed and gave me green light to resume physical workout without restrictions, though I try to avoid excessive tension on the muscles that were right above my coccix.
On a personal level, however, I didn't really felt too unfortunate, and I actually took it quite well. It was just an unfortunate incident, it happens, and I thought nothing else of it. In fact, I even got many sick kicks from grossing out my friends by describing the cyst in graphical detail. We even used to joke that one of my teachers, who has way more bodily hair than I do (and we hated him as well), probably had three cysts removed in his life. And I remember when one of my friends accidentally stumbled upon a flask where the cyst is to date conserved in formaldehyde. He came running to us, terrorized, screaming he had found a flask with a chunk of meat floating inside. I told him it was my pilonidal cyst. We all cracked up XDDD
Date: October 22, 2009
StoryDepending on the size of the wound, 8 weeks is not enough. My doctor keeps telling me 3 to 4 months.
My pilonidal cyst was removed right away. It was pretty deep down and the I hate the daily changes. Don't be fooled by the doctors because they won't tell you what will actaully happen.
Date: October 21, 2009
StoryMy 15yr old daughter found a lump at the top of her bum about 4 years ago when she was 11. Our Doctor sent her straight to hospital and she remained there for 5 days, she had a pilonidal sinus abcess. The surgeon drained, cut out the infection and then she had to have daily packing the help it heal which was extreemly painful for her, after we left hospital she then had to return everyday for another month to have the dressing changed, not easy when you don't have transport, she had about 5 weeks off school, but that wasn't the end because about 9 months later it came back!
She spent about 3 days in hospital this time and then the same old routine of daily dressing changes after that, about a year after that it came back again etc etc. This time she has been abcess free for the last 2 years, except, about 4 months ago I noticed she had a lot of blood on the back of her pyjamas, on closer inspection her now 6" abcess scar had burst open and it was pouring with blood! We went straight to hospital where we saw about 5 different people from a nurse to a surgeon and none of them knew what to do! All they could suggest was dress it daily until it healed and make an appointment with the consultant surgeon who had treated her with her abcess.
By the time we saw him it had healed and he couldn't see what all the fuss was about. Since then it has burst open another 2 times, the latest being this morning when she shouted me into the bathroom to show me loads of blood in the toilet! All I have been doing since we saw the surgeon is dressing it everyday until it heals and that it what I have done today.
But this can't be right can it, has she got to go through life having to put up with this every couple of months? And what of her career, she want's to join the police force when she finishes her education, will this interfere with her plans! I asked about plastic surgery for her, she has such a horrible looking scar and I thought a skin graft would strenghen the area and stop this happening, but the surgeon said it was a daft idea!
Personally, I think she has now suffered enough but with no one to help and nowhere to turn what do we do now, she's just so young to keep going through this. I'm glad I found this website today it's been a great help, and to all of you still suffering, you have my sympathy!
Jan, UK
Date: October 20, 2009
Storyhi erika from seattle thank you sooooooooooooooo much for sharing your story. i am 14 and in 8th grade. this site actually says the sinus forms when girls go through puberty. that explains alot huh!!! i had a hard time telling my mom about my pilonidal sinus too. i actually got surgery a couple days before you and im doing great. my surgeon got to close my wound so i have a pretty weird scarr. But thank you again, i feel like im not alone anymore!
Date: October 20, 2009
Story
I am going to try to provide Pilonidal.org with a detailed, step by step, story about what I've gone through and how I've dealt with my cyst. This is a personal story and should not be used as fact for anyone else. Everyone has different experiences with everything. However, for anyone who is nervous or unsure and needs a detailed experience explained to them, then I hope I can help!
PRE-DIAGNOSIS STAGE
My name is Erika. I am a 20 year old young lady from Seattle, Washington. I am a very chubby girl, 5'6" tall with a very rare disease called 'congenital-adrenal-hyperplasia'. This disease causes my body to produce extra testosterone. Which produces more hair growth in not-so-normal places (for women). CAH also causes other problems, such as very few monthly periods and an even more difficult time at losing weight. Some people may have other, more serious symptoms/signs of this disease as well, but I do not have them. I was diagnosed at age 11 and decided not to worry about fixing it until after high school. However, being a teenage girl, big, and hairy, is never easy. So, I had my problems.
One of the problems I began to notice was a strange "pokey" feeling, like a sliver, between my buttocks, more towards the cleft of my lower back than anything. This began when I was in 7th grade (11/12 years old). This was also around the same time I cut my hair super short. Like a lot of people, I went through a very "punk/goth" stage between middle school and high school. One night, I reached down and decided to investigate the strange "pokey" thing. One thing lead to another and I started to pull at the sliver. It didn't hurt and didn't seem to be attached to anything. It just slowly came out as I pulled. Once it was all out, it looked to be about an inch or two in length. I quickly realized it was hair. And not just one strand, it was 4 or 5 combined together with a tiny bit of a discharge like substance. It wasn't until a year ago that I made the connection that the hair coming out of the hole in my cleft was the same as the hair on my head. This meant that the hair had somehow worked its way into the hole. Maybe in the shower or from getting caught in my clothes/underwear. I'm not sure.
Anyway, I didn't think anything of this situation. I honestly thought it was just some random little "issue" that would fix itself later on. This was not the case, however. After a couple years of the little hairs and me pulling them out, they had stopped. Probably because my hair finally got longer and didn't get in my crack as easily. After not seeing or feeling the little hairs for quite some time, I finally forgot about it and moved on.
When the summer after my senior year of high school rolled around, I noticed that the hole where the hairs had once come out of was slightly larger. After some time, I developed a large boil on the cleft, above the empty "hair hole". This was a frequent problem and something my mom and I both had to deal with every so often. After a couple weeks, the boil got smaller and stayed small.
The next part is a little blurry, I don't really remember how and when it happened but the hole in my buttocks crack began to leak. The discharge was whiteish/yellow, sometimes brownish/red and smelled awful. I was afraid to tell my mom so I kept the problem to myself for a while. I ended up putting wrapped up toilet paper or paper towel between my crack in order to keep the leakage from getting on my clothes, which didn't always work as it is. But, I wasn't going to school so it didn't seem to be a big deal. I figured the hole would heal over and go away. This, also, was not the case. I finally told my mom what was going on after a few weeks. The discharge kept leaking from the hole and the boil would grow and not go away. My mom was a little confused and didn't understand what I was trying to explain to her. She figured it was just the pus/blood from my boil and told me to wait it out and let it heal on its own. Which was our normal remedy for a boil.
DIAGNOSIS STAGE
After a couple weeks, the boil went away but the hole kept leaking. By then, I was too embarassed to bring it up again and figured I would just give it time and not say anything about it. This lasted about a year and a half. The boil never went away and turned into another place for my sinus tracts to leak from. My mom still didn't understand what I was telling her and blamed it on the boil. Finally, about a year ago, we went to my doctor. By this time, I was always tired. I would sleep until 3 or 4 in the afternoon and wake up, STILL tired. It wasn't until a week ago that I figured out that this sleep cycle was due to my chronic infection from the pilonidal cyst.
Anyway, when I went to the doctor, I showed her my hole and the boil. She didn't seem too bothered and said that it was a cyst that needed to be removed. She told me to find a surgeon I trusted, gave me antibiotics and sent me on my way.
I was already stressed about all my other problems, all I wanted to do was cry about having another problem to fix. So I went home and cried.
But then, for a good 2 to 3 months after the doctor's appointment, I had some good luck. The boil disappeared and the leaking had completely stopped. Probably due to the antibiotics. This made me very happy, obviously. So, I jumped to conclusions and figured it was all over.
A few months ago, however, I was laying on my back and all of a sudden I started leaking more than ever! So, I started doing research. I wanted to know my options and wanted to understand what I have. I finally found the definition for a "Pilonidal Cyst" and everything clicked. It was like a light bulb turned on in my head. This is what I had and it felt a lot better. So I did more research and found Pilonidal.org - which gave me a lot of answers. I finally felt like I wasn't alone.
THE GAME PLAN
After another few months of frustration, being scared, hurting and leaking every second of every day, my mom and I found a surgeon. Her name is Dr. Helen Kim and works in both Bellevue, WA and Issaquah, WA. We made an appointment for Friday, October 9, 2009. I drove my mom and I to the appointment and found the place right away. We checked in and finally met with her. She was very gentle and knew exactly what the problem was. She was happy to hear that I had done my research and that I already knew that the healing time would be at least a month. While we were there, she looked at the hole and the boil and worked out a "game plan" for me. We decided that I would not have the wound closed and I would have an "open" healing. My mom and I were pleased with this due to how severe the cyst had gotten. We made the appointment for surgery for one week later, October 16, 2009. I would check in at Overlake hospital at 8:40am and surgery would begin at 10:40am.
I went home and felt fine. I was a little excited that I finally felt strong enough to get this done. 2 1/2 years of that cyst and the leaking was enough. However, I knew I would start to get nervous any minute because this surgery would be my first and also the first time I would ever be "put under" with general anesthesia. So the nervousness was going to hit, I just didn't know when.
A few days went by and finally the night of October 15th rolled around. And I was shaking. I was crying and nervous. I was terrified of not waking up from anesthesia. I was terrified of all sorts of little things as well as the pain. I got hardly any sleep. Probably about an hour of off and on sleep.
SURGERY: PRE-OP
I woke up at 6:30am. I took a shower. I was instructed not to put on any sort of makeup or powders as well as hair product or deoderant. I was also told to wear loose clothing. So I wore pajama pants and a loose sweater. We (my mom, father, and I) left the house at 8am and arrived at the hospital about 15 minutes later. We checked in and went to the second floor. I was checked in for the second time and given an I.D. bracelet. Then, after showing my license and insurance card, I signed some papers and was then taken to my room. #3! Which is my lucky number.
My mom and dad came with me and hung out in the room. My dad left after a bit though because the room got a little crowded. I was given bags to put my clothes and shoes in. Then I put on the gown they gave me as well as the socks. I then climbed into the bed and waited.
I cannot tell you how terrible the waiting is. The worst part of surgery, for me, was the waiting. I waited and waited and waited until what felt like a whole day. Finally a second nurse came in and began the pre-op procedure with me.
I answered questions, like my name, age, health history, family health history and so on. Then I was given a couple things to sign and was told all of the safety signals. After that, I pee'd in a cup across the hall. When I came back, I crawled back into bed and was covered in a warm, thick blanket. Once the paperwork was done, my surgeon came in and answered my questions as well as asked a few.
While my nurse tried to find a good vein for my IV, I then met my anesthesiologist. Her name was Gene. She was awesome! She reminded me of the little woman that makes and fixes the suits in the movie The Incredibles. She was fantastic! And funny! Which is what I needed. She asked me more questions about my health and answered any questions that I had.
The nurse couldn't find any good veins so Gene decided to do it. She placed the IV in my wrist and taped it down. After a few minutes, she left to make sure everything was ready, came back and injected a wonderful cocktail of anti anxiety meds into my IV. Then I was wheeled away. I said bye to my mom, told her I loved her and was in the O.R. faster than I could blink.
I was wheeled up next to the OR table and thought that I was going to have to scoot myself onto it. One of the very attractive male nurses helped lift me to get a couple things situated behind me. When he layed me back onto my bed, an oxygen mask was placed over my mouth and nose. I was instructed to breathe the cool oxygen in deeply. I did. After a few seconds, my anesthesiologist instructed me to breathe in something else and that it would burn slightly and that was normal. So I did. And yes, it burned.
SURGERY: POST-OP
Next thing I know, I'm opening my eyes in some seperate recovery room with a nurse hovering over me. She asked me how I am and was very nice. I started to wake up more but was slightly confused as to why the right corner of my top lip felt swollen. Not to mention my throat was sore and I felt like coughing up mucus. But soon I ignored it and was in a good mood, talked to the nurse and made her laugh. Within 15 minutes they cleared me for the second recovery room. I was finally wheeled back to where I started out, but in room #16 this time.
I got out of bed with help from a nurse, sat down in the most comfortable recliner medical chair and was fed juice and crackers. My parents got to come in, gave me cute little gifts, and sat and talked to me. After a while I was given a pain pill despite the fact that the only pain I felt was sore arm and leg muscles. The prescription for pain meds was filled right there so we got to leave with meds in hand!
After that, I was given a hospital water bottle full of ice water, more crackers and was wheeled downstairs. The nurse said bye after offering to help me into my parent's truck and then left. I was in no pain on the way home and felt pretty darn good.
HEALING TIME
Because this has all recently happened, I am only still in the first week of recovery. It has been four days since I had surgery. The first 3 days I had no pain. Dressing changes were fine, I felt hardly anything but dull pressure whenever my mother packed the hole. However, pain today was terrible. Even after I took two pain pills. I screamed a little. I've gotten into the shower twice for about 5 minutes each. I end up getting too shakey and sick to my stomach after standing for too long, probably due to my nerves.
Saline is a big relief. It is my best friend. We've already gone through rolls and rolls of gauze and pads and tape. It is a stressful experience, one that will make me sympathize with anyone who gets surgery for a pilonidal cyst. But, from what I read, serious pain lasts about two weeks at the most, so I'm crossing my fingers!
I am only able to lay on my side or stomach. Walking happens slowly. I'm trying to get used to going to the bathroom. And I'm doing all this, trying to avoid as much pain as possible. Still, that is rather difficult.
I hope this story comes in handy to anyone wanting a detailed experience. If
someone needs someone to talk to, you can email me at: akire743 at hotmail dot com
and I'd be happy to answer any questions or just talk to you.
Goodluck to anyone with this disease!
- Erika, Seattle WA
Date: October 15, 2009
StoryI started having pain last Thursday in my tailbone. I had the pain before and thought it would go away; however it didn't. I went to WEBMD and it diagnosed a Pilondial cyst. I was grossed out as I researched this thing. By Saturday, I was in the emergency room due to the pain. The doctor confirmed that it was a cyst and gave me antibiotics. I was shocked because I read the meds don't work. Of course, indeed they did not. I had to wait to see me regular doctor to get a referral to a surgeon.
I had already scheduled an appointment with my regular doctor for the upcoming Tuesday. That morning I noticed that the bump started to look like a pimple. I got very afraid because the ER doctor in the ER told me that if it began draining it could be contagious...I have a six month old son so I was scared to death. I went to my scheduled appointment; again my doctor confirmed it was a pilonidal cyst that was draining. This is where the pain starts.
I went in to get a referral to a surgeon to perform the procedure; however my doctor decided she would do it her self under local anesthesia only. I was flipping out b/c I read that this was the worst way to go. I asked for general but was told that they did not have it at the clinic. So, I had to endure pain while they tried to squeeze out the fluid.... then made me walk to the surgery room.... the squeezed it again to get out fluid before the local could be given. It hurt so bad when he gave me the four shots of the local...he shot me directly in the sore areas. However I was still not numb enough so, the doc gave me another shot...Ouch. I asked if she could make sure it was numb before she cut because I did not want to feel anything.... well she just went to cutting. I told her I could feel it but she continued. I was literally crying on the table. I hurt worse than labor pains...trust me!!!
Once she was done she sent me hone with a packed wound. I am still in pack wound stage. I got it changed today, which hurt like hell!!! No Sympathy at all. I am praying that the wound heals and the cyst NEVER returns. I do not want to endure this pain ever again. I am still sore and restricting my movement.
MORALE OF THE STORY: GO TO A COLON/RECTAL SURGEON, GET GENERAL ANESTHESIA, GET A NURSE IF UR GOING HOME WITH THINGS TO DO!!!
Date: October 14, 2009
StoryHi, I am a 22 year old male in good health, and I had a pilonidal cyst for about a year before I finally had the necessary surgery to remove it (an open cystectomy, meaning they could not stitch it shut but rather left the wound open to heal).
First off, let me say that the information I read on this web site is very accurate, and gave me a good idea of what to expect with respect to the surgery. I put off having the procedure for quite a while due to school (my sr. year of college), trying to find a job, and in general being afraid of having a surgery. It even got to the point where I scheduled a surgery, then backed out at the last minute and decided to try more antibiotics.
I didn't have to same problems with my cyst that I've read other people seem to have (it didn't hurt a great deal or have a large impact on my daily life). However I could tell that the cyst it's self was fairly large, and this is probably what scared me most about having the surgery.
Well....I finally had the procedure and it wasn't too bad. They put me to sleep and I remember nothing, and when I woke up there was a nurse right beside me who immediately asked how much pain I was in, and what she could do to make me more comfortable. I went home from the hospital about 4 hours after having undergone the procedure and was doing ok, except for being a little sore. Unfortunately, the worst was yet to come.
The next day, the at-home nurse came to change my bandage, and the packing in my wound. I will not lie about this experience, because I know how much it sucked to have people basically lie to me before my surgery telling me that changing the packing would not hurt. It did...the first day especially, changing the packing was near excruciating even with the vicodin they gave me at the hospital. And worse yet, after the nurse left my wound would not stop bleeding. It bled for about 5 or 6 hours and my parents used several rolls of paper towels to sop up the blood. It soaked my shirt, my shorts, and the couch I was laying on. Finally we got it under control, not before contemplating calling an ambulance more than once. Believe me, it is suuuuccchhhh a scary experience to think that at any minute you're going to have to call 911 and ride to the hospital in an ambulance. I'm not attempting to scare anyone reading my story, but simply to educate. If you have a rather large cyst and your surgeon explains that the wound is going to be pretty large and deep (mine was a little bigger than 9x5 cm and 5 deep), I would recommend at least asking about the possibility of staying in the hospital over-night or at least until you have your packing changed the first time. I'm not saying that your wound will bleed like mine did, but it's a possibility...and I know I was upset that they had rushed me out of the hospital when I clearly still needed to be there.
Now the good part of this story...after this experience my doctor prescribed me percocet instead of vicodin, and the bleeding was never as bad as that scare on the first day. After about a week the pain associated with changing the packing becomes totally tolerable also. From here on out it's just a long process of laying in bed and eating lots of protein. I'm in week five of healing, and the nurses and my doctor say that the wound looks beautiful. I am just now starting to be able to sit for short periods of time, which has made life much more tolerable.
However, no one seems to be able or willing to estimate how much more time the healing process is going to take for me, but judging on the progress I've had so far, I'm guessing about another month. The moral of this story...it's not that bad, and you can get through it. The first couple days after surgery kind of suck, but after that, baring any sort of infection, it's just dealing with the boredom that seems to be the worst part. I hope my story has helped anyone reading it, I've tried to be as honest as possible about my experience. Good luck, and get well soon.
Date: October 13, 2009
StoryHi.I am a 42yr.old woman.I have just found this site. I had my first experience with this medical problem at age 16. So between my age of 16 and 21, I had 8 surgeries. Yes, 8. It continuted to open back up. Terrible thing to deal with at that age. I went through five doctors within that time also.
After the 8th surgery I was cured. I married at & things were great. I never was able to have children. Luckily I didn't because I was in a marriage that should have never had happened. So I divorced him after 6 1/2 years.
I remarried at 30. Hoping for children.
And as of age 41, I had a complete hysterectomy. I do have a 17 year old step daughter. Dissapointing to say the least. Never knew why I couldn't get pregnant. Maybe all of those surgeries. Well, around 2001, it busted open again! I now have had three more surgeries...unbelievable! I now have developed a bladder disease. I'm having terrible lower back pain. And just had my first MRI. Also I had never seen a neurologist. Didn't really think it was anything I needed. My life is a mess...
The forties were supposed to be great..Just can't seem to get well.
The MRI has shown there is something at my spine.
So now I am waiting for an appointment with a Neurosurgeon.
Could it be the cyst again?? Well,I don't know. I guess we'll have to see. I am experiencing terrible pain.
I am doing aquatic therapy once a week because I also have pelvic floor dysfunction. And I see a Women's health Physical Therapist. She is working on the scar tissue on
my back side. They think my bottom is filled with scar tissue. I guess after 11 surgeries that is surely a possiblity. Well, hang in there each of you..I hope you each
do not have to go through all I have encountered for the past
26 years. LHC from South Carolina :)
Date: October 12, 2009
StoryHello all! First I would like to thank those who submitted their stories and who put together this website because it was a great help to read up on my disorder.
Now to my story. I'm a 19 year old male in college and this thing first began to hurt me about a year or two ago. Well, there wasn't anything there, it just hurt. I thought I had hurt my tailbone some how. Well it mostly hurt when I pushed on it or sat wrong. So starting last month (beginning of September) it started to hurt again and I thought I strained my back from lifting heavy things after I had moved in my new dorm. So I just forgot about it and went to bed that night. I can't remember if it was that night or the next when the pain turned into a bump and I got chills.
Well, the next day I felt the area and noticed a bump. I went home and over night it grew very large and very painful. It hurt so much I couldn't lay down comfortably, sit, or walk right. So I made an appointment for the doctor Monday (the only available day). The pain started Friday so naturally I was in dread when I found out I had to go through the whole weekend with this thing. So I waited it out, waking up many times at night crying. I also had fever on and off. I was prescribed pain killers over the phone and they didn't work at all. My mom suggested I take plenty of hot baths to help the pain and this worked some what. Saturday night I took a hotter bath then usual. Afterwards, I went lay down and I felt no pain and the thought that it had popped came to my mind. Never did I force it to pop. So I whipped myself near the cyst and a ALOT of blood/brown smelly stuff had came out. I pushed the rest out and alot of gunk came out. I felt so much better. When I woke up, over night it had leaked more and that was gross of course.
Monday I went to the surgeon and he told me it was a pilonidal cyst. He suggested surgery and we scheduled it the next morning. I had the surgery and was attached to a wound vac. When the nurse turned it on there was alot of pain but it subsided and I felt no extreme pain from then on. I was up and about the day after the surgery with no pain and could still walk, albeit with some difficulty. I also had trouble getting up from the bed or chairs and need someone to hold me as I got up. I was able to return to school after a week. The only unbearable pain was during my first sponge change and the next couple of sponge changes.
How the wound vac works is that they place a black sponge in the hole (and mine was as large as my doctor's fist) and they attach it to a tube and the tube is attached to a vacuum that you have to carry with you. It is a light weight device that provides constant suction on the wound to take out all the liquid that's in the wound. It also helps with blood flow to the sight and brings the bottom of the wound up. So the first sponge change was very hard for me.... it was the worse pain in my life. The sponge stuck to the fresh skin and was ripped off.
Well the nurse used no saline as did other nurses use afterwards which helped ease the pain GREATLY. So now here I am, October 12 and the doctor told me Thursday that it would take two weeks max for it to finish healing. There are some complaints I have with the VAC like the hard to get seal in the crack that comes loose alot, and the over all stares you get at times.
The nurse told me that people who normally have the VAC are not that active as I am. I go to class with the VAC, walk around with it, everything. I take sponge baths because you can't get the area wet. I was told that I was very lucky to have the VAC because of its excellent ability to heal to I suggest that you ask for the vac if your doctor thinks its best and your insurance will cover it. I pray to God that this thing never comes back and I'm praying for all of you tonight that this nightmare never comes back for you either or even comes to you if it hasn't.
Date: October 12, 2009
StoryHello, this is my story:
I awoke one chilly december morning to a pain i have never experienced before. I couldn't lie down, I couldn't stand up, and I definitely couldn't sit down. I frantically dialed my mother who came to pick me up and take me to the E.R.
Luckily, at this time I was 18 years old, so I was considered a
pediatric case and was able to be seen by a doctor quickly. After a
short examination they told me they would have to drain my cyst and
I freaked out. They put me under and before I knew it I was awake
again, disoriented and distraught. I didn't understand what had
happened to me, as the anesthesia was apparently quite strong. They
explained what happened and I immediately started crying and asking
for my mom. When we left the hospital I still couldn't sit. I felt
so uncomfortable in my body, like it was rebelling against me.
I slept on the fold out couch for a week because i didnt want to
be alone. Taking out the gauze from my wound was the second most
painful part of my experience (the first being the initial pain from
the cyst). I said things to my mother as the pulled the gauze that I
would never say to anyone under normal circumstances. After that I
was constantly showering and bathing, always vigilant to any slight
pain or discomfort.
It's been two years almost and I have not had to have it drained again. There have been times where I can feel a slight pinching or some sore-ness
from the cyst. Every time this happens I have a mental break down
about a potential lancing, but it's yet to come to that point. I
shower daily (since I do not have a tub) and wash with antibacterial
soap and scrub gloves and so far that's been good enough for me.
I've been reading these stories for a little over a month, and
some are downright depressing. I feel so fortunate that I haven't
had the problems others have had. But more than depressing these
stories are reassuring: I've never met anyone with this condition in
real life ( even if I did I probably would never know, its not
something I talk about to people I don't really know) so it's nice
to hear what other people are doing to deal with this as well as to
know there are people out there that are much stronger than me.
I don't know what to expect from this post. Maybe it will help someone. I hope it does. I know I sure needed help when I first dealt with this.
peace, love,
Kayla
Date: October 12, 2009
StoryHello I'm 34 years old man, I've had this terrible diseases for years. It began when was aronud 21 years old and I felt a little boil in my talebone I belived that it could be like any other boil, but things came worst after 2 days the pain was incresed a lot and one day I could nt wake up and walk normally, my mother took me with a physucian who prescribed me only pain killers and antibiotics but the problem was the same I went after 2 morte days with surgeon and he drain me, It was the worst experience of my life I cried like a baby because the pain, after that things came better, after that experience I had more experience with less pain, but 4 years ago after a long trip in car (12 hrs) I began with pain the my talebone I was in acations with my fa,mily and I tried to look like nothing hapended but after a coplue of days the same history than he first te pain was terrible I could not wake up and I finnally went for a ER, a general practicer attended me and at first lok he only wanted to give me pain killers and antibioticis, but after a lilttle duscussion with him he took the decision to drain (thx a God)... by theway I'm general physician.
After last episode I used to drain by my self this absecess I travel with scapel everywere, I have a scapel at home, I hate my diseases and Im really afraid to take the decission for the open surgery, I feel my self frustrate and when this absecess appears I feel really depressed.
Date: October 09, 2009
StoryHello All!
I am a 22 year old female from MN. When i was about 20 years old i noticed that my tailbone was hurting, i thought it was just from sitting wrong because i sit at a desk for 8 hours a day. But when the pain didn't go away and just got worse, to the point where i could sit, lay down, or stand with out being in serious pain. I researched it on the internet and actually found this website. I called up my DR's and scheduled an appt. They then informed me that yes it was a pilonidal cyst, gave me some antibiotics and pain killers and said it should go away. YEA RIGHT!
The next day i ended up in the emergency room because i could not stop throwing up as the infection had gotten so bad. They lanced it (worst pain i have EVER felt in my entire life) and sent me home with my mom. All was good until about 6 months later when it started to drain from the incision where they had lanced it. I had been referred to a colon rectal surgeon so i set up an appt with them. I was VERY fortunate and got the BEST surgeon. He was the President of the Colon and Rectal surgeons of America. He lanced it again and this time it was a piece of cake. I didnt feel anything, he was very upset at what the ER had put me through.
I had surgery in September 08. They took about a piece about 5-6 inches and about 3-4 inches deep out of my tailbone/back. It looked like some one had taken an ice cream scooper to my back. So i had to let it heal from the inside out and scrub it everyday until it bleed. I went into the DR's about every 2 weeks so he could check it, clean it, and re-dress it. (even tho i could clean and re-dress at home no problem) about 8-9 months later it was almost fully healed.
It is now Oct 09 and i have not had a flare up. Although i can't sit for more than 2 hours in a chair without it getting alittle sore. And occasionally the scar tissue with tear and it gets alittle inflamed and sore. But i had gone to the DR's and they said it is completely normal because the scar tissue is going to be weaker.
Good Luck to anyone dealing with a pilonidal cyst and have a quick road to recovery!
Date: October 09, 2009
StoryHi, my name is Lena. I suffered with Pilonidal Disease regularly, about twice a year. I would have it lanced by the local doctor (extremely painful). I eventually went to hospital where a large area was scraped away, leaving an open wound.
The first time the nurse came to change the dressing and re- pack the wound, I screamed down the whole hospital. The matron must have heard me and felt sorry for me so she told me that half an hour prior to having the dressing changed I should take a couple of strong pain killers and then sit in a warm salt bath. I should then slowly pull the dressing away and out of the wound. It worked!! No pain at all.
I recommend this to anyone who has had the operation or is going to have the operation.
I had the operation in 1986 and have never had one again!
Date: September 25, 2009
StoryHi my name is Elizabeth. Im from arkansas. Im 18. I have a cyst on my tailbone. I discovered it when i was 15 years old. I went to a local surgeon and he lanced it. Everything was fine.
That was in the spring of 05. The summer of 05 i started noticing that my tailbone was hurting. My stepmom looked and the spot where it was lanced was leaking. So i went to my family doctor and it had an infection. So he sent me to a surgeon. The surgeon did surgery on me in the fall of 05'. We waited and waited and it would never heal.
By now it was the spring of 06. a year had passed and i wasnt healed. very aggravated. he sent me on to a wound healing center. they helped me as much as they could. they got it so close to healing and then it opened up to its same size. there was nothing else they could do. so they sent me to a plastic surgeon. he did surgery on me 3 times. nothing ever worked...my last surgery was winter 08. there was nothing more the plastic surgeon could do. he sent me to another wound healing center. they had this new thing that they had tried on a couple other patients and its stuff they injected into it to fill in all the holes. because unfortunately i have tunnels coming off mine going out to the sides. well i went back to them just the other day and the injection was rejected. it didnt work.
so now im going for my 5th surgery with my 6th doctor in 4 years. can you imagine how frustrated i am?? very. its a never ending uphill battle. sometimes i wonder why it happened to me. i just now started wondering about other options. maybe there is someone that can help get this healed.
Date: September 24, 2009
StoryHi all, just wanted to reassure people here. I went for surgery at the end of August. Had two large areas cut out. The wounds were left open, also had some stitches.
The first week was not really painful at all, probably helped by the pain killers!
The second week was a little more uncomfortable but still not bad.
By the third week I was not taking any form of pain medication and was back at work - a 45 min drive each way.
By week 4 I was back in the gym. I may have been lucky as I have kept the wounds clean, had the dressing changed daily and have had no infection (fingers crossed!).
I am now at week 5 and the wounds are closing nicely, no pain at all. I hope within the next couple of weeks that the wounds will have closed up enough so that I dont have to have them packed. I hope this helps people that read some of the more depressing stories listed here. From my experience I would say it is really not that bad and well worth going for surgery rather than trying to live with it.
Date: September 23, 2009
StoryI was in 8th grade when I discovered what I soon found out was a Pilonidal Cyst. I just wanted to say that being a 16 year old girl having to go through this is not easy. I've read a lot about it and it says it occurs in men a lot more but I do not find that to be true. Sitting in school looking around the room knowing no one else as this condition makes me really upset. I've been really strong through the entire process but it's been going for about 3 years now and I just wanted to say that for anyone that has ever had it you know what I'm going through. It's not something I wish upon anyone but it'll somehow make you stronger.
Thanks.
Date: September 19, 2009
Story
When I was 16 years old I remember starting to get this pain on my talebone. At the time i thought nothing of it, a spot, i thought possibly, i carried on sitting on the hard chairs in class and slowly but surely the pain got so bad I couldn't walk.
I got my mum to look at it and realised and that something really wasnt right.
I ended up in the doctors room as he drained it and put a dressing on it.
He advised at the time not to operate and it would clear up by itself.
Little did i know that I would be left with two little pin holes on my talebone for the rest of my days.
I was given a spray called IRECLENSE- which is basically a saline spray in a can and i cleaned the are with this every day. I actually can't recomend this spray enough as i would get a flare up pretty much every week as the years went on. It never became an cyst again and i fully believe it was all down to the spray, as it flushed out the sinus's before infection could take.
I got to 26 years old, the age i am now and one out of frustration of not being able to go on long car journeys, or sit down at my work decided enough was enough and saw a my doctor, the doctor i had since birth.
I told him my problems and he gave me cream, and advised against surgery.
So away i go again, using the cream which really made the wound moist and things stuck to it, not helping at all.
Six months passed and it flared up so bad it was the straw that broke the camels back.
I booked an appointment with a different doctor and told her my problems.
Within a month i was seeing a specialist and just last week i got it operated on.
I was told that the best option with the lower chance of it coming back was to take the sinus away and leave the wound open, getting it packed daily and allowing the wound to heal from the inside out- looking at 8 weeks healing.
I was nervous, very nervous but i was taken in, knocked out and woke up in NO PAIN, lying on my back, a bit confused as to why i wasn't feeling any pain in the area.
I slowly came to just in time for the surgeon doing his rounds.
He explained to me he had taken the sinus away and i had packing in and wished me all the best.
I got dressed, a mere 5 hours after going in and waited on my ride home.
I sat in the car on the way home again NO PAIN...and that night had a good meal and went to bed feeling great.
The next day, odly the only pains i had was muscle pain in my body, a small side effect to the anistetic.
The nurse came in and took the dressing off, cleaned me up with saline spray and took out the packing..I FELT NOTHING, she put the new packing in, around 6 inches of packing and again FELT NOTHING.
Its now four days after and im still feeling good, youf feel the odd twinge and its a bit uncomfortable to sit but apart from that its healing nicely im told.
So really the purpose of my story is to say i suffered this for 11 years, i read web pages, horror stories and watched clips on YOUTUBE but it wasnt that bad and wasnt as sore as i thought it would be.
I have been told there isnt a 100 % chance of it going but its an 80 % chance of it being gone for good and after the years of being uncomfortable and in pain its a chance im glad i have taken.
So please men and women everywhere do whats right for you and if you dont agree with the docotor get a second opinion.
I have copied the link for the spray as it is a GODSEND!!!
Peace and love to you all!
A scottish dude xx
http://www.hyperdrug.co.uk/Irriclens-Sterile-Saline-Aerosol-240ml/productinfo/IRRICLENS/
Date: September 19, 2009
StoryHello, my name is Jessica and I am a 23 year old female from New Jersey.
I had my first pilonidal cyst at 16 years old. It was a very bad infection. I was forced to go to the only available surgeon at that time who was an hour and a half north from me. He lanced it in his office and took out the infection under local anesthetic. I spent the evening crying, vomiting, and in a lot of pain.
After it healed on it's own, I had my first surgery preformed by said surgeon. I then had a years peace with the whole thing. I got into a car accident at 18 years old and a week later, I had another cyst. I had it lanced. It healed up and pocketed and came right back very soon after.
I started seeing an infectious disease doctor who put me on Clindamyacin and Rifampin any time I had a flare up there after. He also advised that I only use dial soaps, and he prescribed me a liquid soap to use on the infected area called Hibiclense. I also was using Bacitracin ointment up my nose to stop any antibodies from entering my system and causing more cysts.
All of my previous lancings and surgeries had of course also caused me to contract staph in my blood. The antibiotics would help with small cysts that I got on my inner thighs from the staph, but never really curved any pilonidal flare ups. I had it lanced more times than I can remember at the hospital whenever I couldn't tolerate the pain anymore. They usually drain it, and flush it with saline, pack it, and send me on my way. I would find myself planning my work schedule around hospital visits.
I had a second surgery with a different surgeon when I was 20. Again, after a few months, I had another flare up. It was every couple of months for a while that I would get one. Recently, they have been much more frequent. Every other month or so. Just a few months ago, I had a very bad flare up, had it lanced, and right after it had healed, it came right back.
I underwent yet another surgery in November. This time, he lanced it open as long as 4 inches and it was as deep as 4 inches. My insurance covered wound vac therapy for about a month and a half until it healed up again. The wound vac therapy was very draining. You have to carry around a 3 pound bag containing a portable wound vac 24/7 with a tube hanging out of it that mysteriously goes up into your clothes, kind of obviously to your ass. I decided that the general public probably thought it was a catheter and that I was just peeing through it. I know it's gross but it was the impression that I got from most people. One girl actually said to me " Wow! I've never seen a purse like that before!" Yeah, if you try the wound vac therapy, dont' think it's easy, but it might work better for you then it did for me. You have to plug yourself into the wall every night to charge the battery, and if it is low, it beeps incessantly, and it's a little bit uncomfortable, but you would have a visiting nurse 3 days a week to change it. Again, it's not fun, but I really thought it would work. I just think my case is too far gone for this sort of therapy.
SO! Here I am, a month post the wound vac therapy, and I have a sore butt. I just noticed it today and that's how I happened upon this page. I was showing my mother, who has packed and unpacked and seen it all over the past few months, information. I am going to my infectious disease doctor in a few days and he will most likely put me BACK onto intraveinous antibiotics, which are stronger than the oral ones.
I left it out of the history, but I did have about a months worth of intraveinous antibiotics about 6 months ago which was again, not fun, but I'm sure it aided the cause.
UPDATE-I have undergone another surgery a few weeks ago with a new surgeon who has a strange technique to stitch it a certain way that it will heal correctly. I’m not too hopeful and was told that I might have to have another for what he’s trying to accomplish to work. So, I’m still right where I started. No closer to being healthy. This is but a small chapter in this epic novel that is pilonidal disease.
Since writing this I have also had another surgery in April of 09’. I had a really large terrible flare up and instead of having it lanced at the hospital, I scheduled an extraction of the cyst with surgeon number two post haste. He was wonderful enough to get me in for surgery within 3 days. He removed it in the hospital while I was under anesthesia, and reportedly told my mother that it was WAY worse than he thought it would be and very infected. (My pilonidal cysts tend to tunnel inward.) So, after ward they tried the wound vac and pic line a second time. I actually woke up from surgery with the wound vac attached. Last time they waited a few days to attach it, which they thought might have been detrimental to the healing process. Leaving it open for a few days = healing which = pocketing which = flare up.
This time, the dressing changes were extremely painful. Much more so than I had remembered from the previous one. The fact that the surgeon added a stitch to the bottom of the incision right above my you know what for support to the skin, definitely didn’t help. I had nurses coming to poke and prod and tear and press on the wound. Extremely unpleasant. The first few weeks are hell.
After it heals a bit and gets smaller, the dressing changes are still very uncomfortable but not quite as painful. It took well over a month for it to make significant process. The wound continued to heal in circumference, but the depth was not getting any better. It took until The end of July for it to be healed completely. In the process, I was forced to resign from my job and was put onto temporary disability. I am sure other people can attest to how much this disease interferes with your life in a major way.
I had my surgery on April 1st, and am updating this on August 21st
.
September 19th 2009- I glad that I was haven't found a job or started classes in the past two months since being taken off of temporary disability for this. I am feeling the tenderness on my tail bone for the past two days. Here we go again.
Date: September 17, 2009
StoryHi,
Like the last post, I am also a 27 yr old femaale who THINKS that the internal bumps
along my tail bone are cysts.
I noticed a slight twinge the other day (like a zit) but in the past few days the swelling has increased. It looked to be a bump on both sides...so not fun. I feel fine in the morning, but by the afternoon the pain starts. I have a desk job, so I am sitting about 75% of the day which seems to make the pain worse.
Apparently, 3 of my uncles and my cousin have had these. I am a little freaked out and slightly embarrassed.
If anyone is in the Brooklyn NY area and can recommend a good dr, I would greatly appreciate it (you can email me at mlvhess
at yahoo dot com). Or if you have any advice I would love to hear it.
Thanks
Date: September 17, 2009
StoryI am a 27 year old woman who just recently was diagnosed with PC. About three weeks ago I noticed some pain near my tailbone and thought I had just bruised it somehow. A week later I had a huge lump and was in extreme pain! I didn't know what was going on and figured it was a boil or something. I went to the doctor and she told me that it was a pilonidal cyst. So after getting scheduled to see a surgeon I proceeded to do lots and lots of research about this. The things I read on the internet about it scared the crap out of me! Thankfully I found this site and was able to listen to other people's stories.
I just saw my surgeon and hour ago and thankfully I don't have to have surgery at this point. The medication is taking care of the flare up and I am no longer in pain. I will probably have to have surgery eventually since we all know it doesn't just go away but since I don't have insurance, I would like to wait as long as possible. I just wanted to thank everyone on this site for all your words. You truly have helped me during this painful and tough time in my life!
Date: September 17, 2009
StoryMay 2004-
The first time my cyst flared up, I was 19. I just bought a truck, and I thought maybe it was from all the bumps (and I just read on a website today that back in the old days they used to call it Jeep Disease).. I was also promoted at my job, so I was really stressed out.. Well, they put me on the antibiotics for a week and a half... nothing... after a week of not being able to move at all, I went back to the DR to get it lanced.. it was the WORST pain I have ever had. After the first 'surgery', I was fine...
October 2006-
I had just broken up with my boyfriend of 7 years.. this thing always seems to come back when I'm stressed.. That was the second time I got it lanced, and the pain was a little less harsh than the first time... But it had gotten bigger, they said they drained about 2 cups of puss out of it.. GROSS!!
March 2007-
It was a month after I found out I was pregnant, and the damn thing came back again!! I was 3 months pregnant, and stressed out from planning a wedding, and then planning a baby on top of that! This was the 3rd time I got it lanced... at least this time they didn't need to pack it... It just sucked because I couldn't lay on my belly and I couldn't get the anesthetic either...
July 2007-August 2009
It has come back periodically through this time frame, but it usually popped/drained on its own, flaring up for a day or two and then the pain going away after it started draining...
September 2009-
As I sit here typing this now, I can feel it coming back... and it feels like it did the very first time I got it... It isn't swollen on the usual area like it has for the past 4 years, it is starting to swell right below... so now I am thinking that I am getting a whole new one? Or possibly the tracks have dug deeper into my 'cleft' (crack).. either way, I just had my DR call in a prescription for an antibiotic, praying that I caught it before the infection grew too intense for antibiotics to do anything...
It is nice to know that I am not alone in the suffering, I am a little suprised to see so many people with this problem.. and I do believe it is hereditary, my mother suffered with this same thing for many years.
For the person who posted their story before me, I pray that you do not get it while you are pregnant, being pregnant is uncomfortable enough, then trying to deal with this too...
Good luck to everyone out there dealing with this very literal 'pain in the ass'!
Date: September 04, 2009
StoryAugust 2008 – We had just bought a house and we were renovating, I noticed that I was getting a tight pain at my lower tailbone…didn’t think anything of it, just thought I had maybe pulled something while we were moving things around. Sure…woke up the following morning and wasn’t really able to get out of bed, the tightness was there but felt larger? The thing that started to worry me was I was tired…too tired. Stayed in bed all day. The following morning I woke up and I was crying…I couldn’t move my lower body it was too painful. My husband (boyfriend at the time) rushed me to the hospital. They took me in ASAP proceeded to poke and probe at my bum (me screaming) the doctor told me that I had a Pilonidal Cyst and that it had to be drained. First time I had heard of it? I told them that I didn’t care what they had to do, just get it out of me. I was put to sleep and woke up with no pain…just a sore bum. And I was happy.
At home - nurse came and went wasn’t too painful, in a weeks time I was fully healed and ready to get on with my day to day.
June 2009 – We are getting married in 2 months! My fiancé had decided he wanted to go to Vegas for his stag (awesome idea! ) The night before his flight I started to feel a pinching pain…no tightness just pinching…so I thought it was scar tissue, SURE he woke me to say good by the following morning and I was tired…yup that too tired feeling. I didn’t want to ruin his trip so I didn’t say anything to him…I was just going to wait until he came back (3 day trip) to go to the hospital (ya what can I say, I’m one of those people that needs someone they love to be with them while at the hospital). So the weekend starts to pass and I am trying so hard to just go abouts living, I lasted until Monday morning, called a cab and went to the hospital. Sure enough it came back it was horrible…I cried and cried because I couldn’t get a straight answer out of anyone, no one could tell me why I have it, and how to be rid of it. Finally a surgeon tells me that they will have to remove it. More than happy to comply I hop on the bed and told them “Lets GO”!! I’m put to sleep and wake up feeling really crappy…not in pain but my eyes had swelled up because of the anesthesia, so I look like I got beat up!
Took a cab home…they guy had asked if I wanted to go back to the hospital from the way I was lying in his back seat…lol, felt horrible…no pain just the anesthesia.
At home – first day the wound nurse comes over (good thing it’s the same nurse as the last time)…ya so I’m thinking its going to be like the first surgery a little bit of warm water (saline water?) swabbing around the incision put the gauze on and ready to go…OH was I wrong… he started to tug (gently) on the gauze strips that the hospital had used to pack it. It was the worst pain I had ever encountered. My younger sister was there and had to leave because of the way I was sobbing. If I wasn’t touching it or sitting on it I felt nothing...it was a shock to feel the pain, after the nurse left I cried for about 10 min…I was in shock…as the days and weeks went by packing got easier and easier…to the point where I felt nothing. Healed up really nice
August 2009 – So we have 2 days to the wedding, and I’m stressed. Woke up and yup…that really tired feeling, went to move and yup that tight feeling. Grabbed my stuff and shot down to the doctors…turns out its back!!! AGAIN!!! So I’m at my doctors freaking out because I don’t understand why it keeps coming back??? I’m kina hoping someone can help me out with this part…the second (June) surgery that I had was on the left side of my bum just below the clef, but when the doctor was squeezing it nothing came out it was sooo deep. This time I went to the doctor it was on my clef…he squeezed it and stuff came out, does this mean its kina better then the last one? He gave me antibiotics so I could enjoy my wedding and my honeymoon without any pain…but when I got back he told me I would need another operation. I am waiting for a surgeon to call me with an appointment.
Does anyone know how to get rid of this pest for good? Or do I have to live the rest of my life worrying about it? What if I get pregnant? How would one deal with it then?
Thanks,
A very confused PC Sufferer
Date: September 02, 2009
StoryI had been dealing with my pilonidal cyst for three years before the pain/grossness became unbearable.
I visited a general surgeon who remarked that my cyst was "particularly nasty." He suggested that I have surgery, be in the hospital for several days (to manage the pain), and use a wound vac to expedite the healing process. Needless to say, I was nervous about the entire ordeal, but anxious to rid myself of the overwhelming discomfort of pilonidal disease. My biggest concern was the after care. I had read that eight weeks could be expected for open wound surgery and thought this would be extremely inconvenient.
My surgery was April 30, and I was in the hospital for two nights. Throughout the entire ordeal, I never experienced intense pain, just an occasional dull ache. I was attached to a wound vac for five days, but it affected my mobility which was unacceptable to me. Because of this I was given the go-ahead to use the "primitive" daily packing technique. My wife packed my wound (which was four inches long and one and a half inches deep) every day for nine weeks. While this was the stage I was most nervous about, we adjusted quickly to our new routine. Packing was never painful, just uncomfortable during the initial getting-used-to phase. I can honestly say that nothing you experience post-op comes close to the awfulness of dealing with a cyst on a daily basis.
Four months after surgery, I still have several inches of discoloration, but my wound is closed, and there is no sign of recurrence. Occasional pain is felt, but seems to be scar tissue issues that pose no real problems. I just wanted to share my story with everyone, because my fears about surgery proved to be unfounded, and people dealing with pilonidal disease need to know it's not going to be as bad as they think. The pain is minimal, and the healing process is not nearly as tedious as it sounds. The benefits of having this problem resolved far outweigh any temporary discomfort you will experience following surgery. The anticipation is by far the worst part of the entire procedure. I encourage anyone dealing with pilonidal disease to have it taken care of as soon as possible.
Date: August 23, 2009
StoryI am a 29 year old Woman Living with this Disease. And as you all know it is quite literally a "Pain in the Butt". I got my first abcess when I was 21. I went to the emergency room in horrible pain and had it lanced. I was given no info other than I had an abcess. I didn't get another one for about 3 years. Same thing; lanced and no info. After the second one I started to get an abcess every 3 months or so sometimes even two at a time. I have been to numerous doctors & taken numerous antibiotics and was given numerous reasons for this.
I just got two abcesses in June and went to a surgeon. I had the surgery. I was seriously excited to never have to deal with this again. Everytime I have had an abcess it has been extremly painful. I have broken bones and been in less pain than dealing with an abcess, so as I said I really wanted this surgery. Unfortunatly, I got another abcess 2 months after the surgery. I am so frustrated with all of this. I have to miss quite a bit of work and it is humiliating to explain to your boss that you have a huge, painful infection on your hiney. I was so happy to see that there is a website dedicated to Pilonidal Disease. I get frustrated because I don't fit the typical description of a person suffering with this. I am a fit, healthy woman who works mostly on my feet and I don't think my rear end is hairy.
I will post any information that I find useful or effective. Thank You for creating this site!
Date: August 22, 2009
StoryMy 16 year old son had some drainage in his underwear. He had no pain. I noticed 2 small holes at the top of his butt crack. My sister who is a nurse said he might have a pilonidal cyst. He does have a lot of hair and he likes to sit at the computer to play video games.
I took him to his pediatrician who took a quick look and sent us to see a surgeon. After the surgeon took a look, he scheduled us for surgery the next day. He went to a wonderful children's hospital and had the surgery in the morning and the doctor wanted him to stay overnight to receive IV antibiotics as a preventative since he was not infected. He did not need any pain medication.
They put a large bandage on his butt cheeks that tied in the middle like a shoe lace so his dressing could be changed more easily. After 2 days, the doctor wanted him to come back to the whirlpool area for the next 5 days to have his dressing changed. The initial wound was quite large and pretty deep. Following that week, I had to pack his wound with packing strip soaked in saline once a day and cover the area with a gauze pad after he used a shower hose to rinse the area. The wound has gotten smaller and smaller. The doctor has checked it once a week for the first 2 weeks and the next visit is in two weeks.
Last visit he did put some silver nitrate in the wound. He also recommended we shave the area. I used an electric trimmer but plan to send him for laser hair removal when the wound is all healed. I also got him a special cushion with the U-shaped cut out for him to use when sitting for long periods of time.
So far all has gone well. When I mentioned my son's condition to other people I am surprised to hear so many people had this problem. I guess he has been lucky not to have any real pain and we took care of the problem at the first sign of trouble so hopefully it won't recur.
Date: August 20, 2009
StoryHi everyone, first of all I´d like to say I feel your pain!!
I am 21 year old woman, from Spain, and had this little hole bothering me since I was about 17, it was itchy every once in a while, incredibly itchy I must say! But other than that, it was fine.
Then one day in my 20s I felt this pain in my tailbone, but because I had spent christmas riding a motorbike with my best friend I thought I had harmed it then.
But the area started to swell and swell and one day after work I came home and to find my knickies stained and smelled this AWFUL odour! I freaked out and went to the doctor who said I had a Pilonidal Sinus (something I had never heard of in my life) he gave me antibiotics and I was fine!!!!
UNTIL......................8 months later, I became pregnant and this HORRENDOUS disease came back to me, but this time it wouldnt come out on its own, not even after taking antibiotics, a huge boil appeared (I did not have a boil the first time) so it had to be drained, and people, dealing with this in pregnancy, is
something I really do not wish not even for my worst enemy. Not able to sleep or walk for days, when I had it lanced it was so painful as well, the most HORRIFIC pain I´ve ever experienced. But its gone now, and I am praying for this cu** to stay away from me until I have my baby and can have decent surgery and end with it for good, I feel cursed!
My advice to you is to go seek medical advice IMMEDIATELLY, because it only gets worse, and does not go away on it´s own, and there is no home remedies for it.
i live my email below if you want to ask anything, specially pregnant women, I can help: sully_popcorn
at hotmail dot com
Date: August 19, 2009
StoryThe first occurrence of the pilonidal cyst occurred way back in 2003, when I didn't realize that it was a pilonidal cyst and would require so much of attention.
It started with tremendous swelling and pain and later on it just burst with a drainage of blood and pus. Honestly, I didn't pay any attention to it thinking of it to be just a big boil and thought it was not something to be worried of. The flare ups started since then and occurred at varying frequencies, sometimes there would be no flare ups for 8 - 10 months and sometimes it would occur at even 1 month intervals.
It was in 2007 that I finally decided to visit a doctor who said that I had a condition called Pilonidal Cyst and required and operation. I was a bit freaked out since I'd never had an operation before. I postponed it further [not advised at all]
It was finally on June 4th 2009 that I got operated. It was a one and a half hour operation with spinal anesthesia, so I was almost awake during the surgery.
The surgery was a closed one with stitches. The next day, I was able to sit and have my lunch and breakfast. I didn't experience any post operative pain. Maybe because I was on a strong dose of painkillers and antibiotics [Ace Proxyvon and Augmentin IV respectively]
I was released 10 days after the operation and the stitch was opened 4 days after. For the next one month, I had regular sitz baths for 15-20 mins and dressing with gauzes and Bactroban [antibiotic ointment]
Finally I am out of this, I have resumed my normal lifestyle and can sit and work for long hours without any hassles.
So my advice to all those suffering from this horrendously painful condition, DON'T NEGLECT and DON'T POSTPONE. The surgery is not as fearful as it might sound. I have gone through it and can say that it's nothing compared to the pain I had endured for the last several years. Just remember to be careful post operation and get your wound dressed regularly.
BTW, I am 29 year old male.
Some tips:
1. Don't panic
2. After surgery, wear loose clothes.
3. DRESS THE WOUND REGULARLY
4. Use toilet papers.
5. NEVER TRY TO TOUCH YOUR WOUND.
6. Avoid getting your wound in touch with tap water [can lead to severe infections]
7. Don't sit for long hours.
8. Have normal diet and preferably increase your intake of protein [after consulting your doctor of course]
9. Practice deep breathing [increased oxygen helps heal wound faster]
Take care & God Bless!
Date: August 19, 2009
StoryI thought I would add my story as I am female and there don't seem to be that many females with this condition.
My first experience with pilonidal sinus was 11 years ago, when I was 16. I had a massive abcess which drained on its own after about a week. The doctor at the time told me that surgery was often horrendous, and worse than living with the sinus, so I decided that I would just live with it.
So for the last 11 years, I had flare ups every so often. Sometimes I could go 3 months without it flaring up; other times I would have several flare ups within a few weeks. The flare ups were never as bad as the abcess I had the first time - they were just uncomfortable when sitting in certain positions and there was some drainage. However, nothing that kept me off work so I think I was pretty lucky compared to some people on this site.
Then about 2 years ago, I had quite a few flare ups in a short space of time, and I started to think that it probably wasn't good for me to leave this thing untreated. I therefore decided to have surgery. This was a tough decision, because as I said, it didn't give me major problems. It was more that I was worried about it getting worse as I got older. But at the same time I was worried that surgery may actually make things worse.
I had my operation 3 weeks ago - a Bascom procedure so the wound was closed with stitches. I am hoping that my experience will reassure people that the surgery is not always horrific. The pain from the wound was worst for the first 3 days after the operation but not unbearable. On a scale of 1 to 10, if the pain of the abcess was 10, the post-op pain was 6 at the most. The main problem over the first 2 weeks was not being able to sit down. I spent the whole time either standing or lying (not on my back). 2 weeks after the operation, I was worried that the wound was not healing very well as there was a small bit at the bottom of the wound (in the natal cleft) which seemed to have come open a bit. My doctor said it looked pretty good though and said that due to the location, this bit often takes a bit longer to heal but it would do so in time.
I had 3 weeks off work, as I have to sit all day and this would have been impossible. But now, 3 weeks on, I am back at work, and able to sit more or less normally for a hour or two at a time. I then have a little walk and can carry on. The bit that wasn't healed last week looks like it's almost healed now. There is still some tenderness around the wound, but this is only noticeable when it is deliberately touched. I am still being careful how I move to avoid splitting the wound open while it is still a bit fragile, but hopefully in another month I will be able to get back to running etc.
Finally, in terms of appearance, the scar I have is virtually invisible, as it is mostly in the natal cleft. I was worried that surgery would leave me disfigured, but in my case it will be almost undetectable once the scar fades away - it looks no worse than a scratch.
It is obviously still early days, and only time will tell if my pilonidal sinus will recur. But I hope this story is useful because there are so many horror stories on this site, and I just wanted to balance that out a bit!
N, England
Date: August 13, 2009
StoryMy son is 18 and has had a 2nd surgery for a pilonodal cyst. He is now on a wound vac for 2 weeks with nurses coming every 2 days to change the 'dressings'
This is so trying for all of us. He is such a trooper through it all. He is the one one who found a new surgeon after the first surgery went awry. I can't believe after 9 months he has still not healed. I don't know if our story is helpful, but this is a serious disease in any case, so common, yet so unheard of.
Date: August 13, 2009
Storyhi. I'm a 24 year old female who's been dealing with pilonidal disease for about four years. I had my first flare up in 05 nearly a year after having my first child. I remember the excruciating pain and not being able sit, stand, sleep, or even take care of my son. Luckily I had friends to care for him. I'd waited about four days into it before going to the ER. The doctor there had lanced the area and drained it giving me a referral to a surgeon. Being that I didn't have health insurance, it was hard to find a surgeon who would do it. Only a few days later, I had consulted with a new surgeon in my area and he was determined that I did not have a pilonidal abscess. He did do surgery though and a friend of mine had to pack the area everyday. Approximately, 6 to 7 weeks later, I was pretty well healed and thought i'd never have to deal with this horrid disease again. Until the beginning of Aug. 09, and that familiar sore feeling came to my tailbone. I knew what I was in for. Now four days after having the abscess lanced and drained, I feel a lot better, just hate the re-packing. I will have to have surgery after this flare up heals. Hopefully this will be the last one.
Date: August 12, 2009
Story13 August 2009 awwwwww ITS A RECURRENCE STORY
hi
This is John from Germany . I will share very shortly my recurrent experience with this crazy disease
Year 2002 , I had a bump in my natal cleft and in a month I decided to get rid of the uneasiness at any cost and an opeartion was performed to remove , no idea if it was lancing or excision and my little brother and dad always packed me and I never saw my wound till the end . I guess I did not treat properly thinking that its healing well
Year 2009 - in the month of June I had similar experience and I was sure that I might need another surgery , I went to the doctor and it took 10 secs to confirm and asked me to do another opertion within 2 days. I agreed
June 13 , I was operated for the second time , though I was very sad I felt psychologically better because I know how its gonna feel later.
3 days later I went home. I am 26 and lived a single life for the past 8 years ,no girl friend, no family, no love, no care.
I started packing unpacking my wound slowly to see a horror behind me , it was great pit and awful smell. I was depressed instantly.
Its a month now , I live alone, noone to talk to but this site has given me a good level of confidence. I visit the doctor every Friday who is very happy with my progress.
Its not a fatal disease but it just sucks so much time and energy while making us feel embarassed at times coz our ASS is Punctured.....
For those experiencing this problem , I would say its 10% Surgery and 90 % post operative care , if u dont care your wound properly, you might have a recurrence......
I leave my email for u , ask me and I will definetly write back
to u ::: johnofaugust27 at yahoo dot com
God luck for Recovery
John
Date: August 05, 2009
StoryHi everyone. I'm a 30 year old gal who experienced my first PC flare up (ever) in October of 2008. Like so many other people I thought I had just bruised my tailbone or something like that.
When I noticed the bump, and increased pain, I figured something was very wrong and scheduled an appt with my primary doc. That's where I heard the term pilonial cyst for the first time. I was given a round of antibiotics, some pain killers, and sent on my way. My doctor said she would be recommending me to a surgeon and that sometimes a PC has to be removed. The thought of that terrified me. I crossed my fingers and hoped that it would never return.
From October to April I had no problems. Then in mid April I had another flare up, followed by two more consectuive flare-up's until finally it just wouldn't go away. I was practically in a panic by the time I finally saw the surgeon at the end of April. He took a look and said my case was "not that bad" (WTF?). Mainly because of the short length of flare ups and because I've never had any draining/lancing.
At the begining of June I had a closed excision done at the doctor's office, using general aneasthesia to numb the area. My bump (I named it Reggie) was about the size of a grape with two sinus tracts in the midline of my crack. I got REALLY worked up over the whole surgical experience only to find that it wasn't that bad. The flare up's and dreading the next problem was much worse. Had surgery on a Thursday (9 stitches total in my midline) and was back at work on Tuesday. Healing has been a lesson in patience as far as sitting and doing day to day activities. I invested in a Tush Cush (best invention ever).
Since then I have slowly and surely gotten better and had no
major problems or infections. I have one last follow up appointment
in two weeks, but the doc says everything is looking great. The best
advice I can give everyone is to get it taken care of ASAP. The
doctor said the reason I only had to have a minor, closed surgery is
because I caught the PC early and had it removed. It gets worse with
each flare up. I experienced no pain during the excision and
afterward it was uncomfortable but not outright painful. If anyone
has any questions about a closed surgery or needs a good doc in NC
feel free to email me (akw0130 at hotmail dot com).
Date: August 01, 2009
StoryHi my name is Christiana and I am 22 years old. I have been suffering from this for the last 4 years. I also found out that I have something called
Hidradenitis Suppurativa (HS).
Soooo fricken painful! No one understands the PAIN! I've been dealing with boils under my arms/groin/breast and then i start to feel a discomfort on my tailbone! I am a young woman. Looking at me I am normal, if not glamorous...if people only knew.
I was taking a final exam and I was scared I couldn't sit still. I went to the ER, crying and lying down across chairs and they told me that they couldn't lance it! Finally I had surgery...it took me a whole summer on my stomach to recover. It is so disgusting. Actually a before this cyst I had another one that was broken because my brother was jumping over me and landed on top of me. A gush of puss-like liquid created a sewage smell in the room and I rushed to the bathroom. It's sooo embarrasing. If I smell anything off around me I think that maybe i'm draining! Right now I am starting to feel tender again. I don't know what to do :-( I have responsibilities and a job. This thing dominates my life. If I flare up, i'm out of business.
Date: July 27, 2009
StoryJuly 28 2009
Hi Everyone I am a 36 year old female and have to post this blog. I am recovering from my open wound surgery on July 16th. I have been dealing with this for 10 years.
1999 I woke up one morning and could not walk I thought it was my tailbone because when I was 14 or so I had fallen down playing hockey and fractured my tailbone. I took myself to the er and the sadistic Dr in the Er lanced me open (with no meds or anything) it hurt like heck, the smell is so foul it almost made me throw up. After 2 weeks of antibiotics and a wick sticking out of my crack I was better. Thank god it was over...so I thought.
In Oct 2000 After I gave birth to my son I was feeling alot of pain in that area again, I asked my Dr and she said it was from childbirth and it will go away....well that week I was doing dishes and smelled a foul ordor and felt a gush...yes it had "exploded" went to the dr was put on anitbiotics and everything was fine.
Free and clear for 7 years....
Dec 2007 starting getting sore again so I went to the DR asap and he put me on antibiotics...whew it went away!
Dec 2008 2 weeks before my cruise with my husband and son it started again.....pain, I had to go get it lanced open and on anti's again...this time it would not go away yuck finally got the ok to go on my trip however I couldn't go swimming or anything which stunk!that was 2 weeks of hell, so much pain and lancing and the wick insertion etc.....
I finally said I am going to have the surgery, I kept putting it off-went to a surgeon(Dr. Kripke in Paoli, PA) He was wonderful we scheduled the surgery for April 2 2009. Well 2 weeks before I cancelled my surgery....DUMB because 2 weeks later it came back full force...now the cyst's have become so much more painful then ever....went to DR Kripke, he thank god numbs it before he lances it open he lanced it open and on anti's again, May same thing, June same thing, Finally he said I cannot let you live like this every month severe pain, infection,fevers etc.... So I scheduled it for July 16th, don't you know 1 week before surgery AGAIN it came back!!! The worse one ever....I was in pain the last 4 months like I had never been in before this last time it had gotten so bad it exploded at work-how embarassing.
I am soooooo GLAD I got the surgery it was not as bad as I thought, I did alot of research and was making myself sick from reading and seeing graphic- worse case scenarios of surgeries from PS. Yes it was painful but I was lucky enough to have a surgeon who is awesome the surgery center was awesome, I was put on percocets, I do not take meds but these saved my pain.
For the 1st 5 days I took them every 4 hrs. I think my biggest fear was going to the bathroom the first time- I made sure I was eating high fiber foods and taking ducolax pills-it was not bad at all. I have a nurse that comes every day to clean and repack me. My wound was 4x2x4 inces deep, it is now smaller. The first couple of packing changes were painful but today NO pain. I have alot of drainage but I am healing Thank god- I pray it never comes back.
Please if anyone has any questions email me jenniferlholland
at verizon dot net I will answer any questions I have lived with this for 10 yrs and have researched it like nobody's business... I hope everyone who reads all of these blogs does research first before deciding on any surgeries and what type of surgery.
Date: July 24, 2009
StoryHi Everyone:
Just wanted to let you know that I have enjoyed reading everything about Pilonidal Disease.
This is my story. I was about 18 years old when I hit my tailbone on a toboggan sliding down a toboggan run. Didn't think about it at that time but my tailbone started to really bother me. I was a secretary at the time. This would be about 1969.
As time progressed I noticed at lump on the left side of my buttocks and it gradually got bigger and very painful. Had no idea what it was and as time progressed the pain was excruciating. I remember like it was yesterday. Finally it got so painful I couldn't sit or lay on my back to sleep so I had to take time off work. My roommate at the time finally took me not once but three times to the ER. As a young woman of 18 it was pretty embarrassing. They all said the same thing we can't lance it as it is not at a head yet so to speak. At no time did anyone mention pilonidal disease.
Anyway to make a long story short I finally went to my family doctor and told him if he didn't lance this boil I would. By this time I couldn't stand the pain anymore. I had sat in the bathtub soaking for days and days without any relief. I remember I never had any local anesthetic he just lanced this boil and took over a cup and a half of this awful smelling pus from my boil - it was instant relief. He paded me up with gauze and sent me home with antibiotics. This is when I found out I was allergic to
penicillin.
Anyway, everything worked out for me and I am now 57 years old and have not had an episode since then. The funny thing that did happen tho is my son at the same age I was started having trouble and he had fallen off a ladder onto his butt. Guess what - the doctor sent him to a surgeon and that is where I found out it was called a "Pilonidal sinus". He finally had surgery had apparently had two tunnels. There was a problem after surgery because the nurse forgot to take all the guaze from my son's area and he ended up getting a bad infection but it all worked out after all and it took him quite a few months to recuperate. My son will be 30 this year and has not had anymore problems. At no time in my life has my mother or father or any of my siblings had any problems with their tailbones.
Date: July 24, 2009
Story>I am a 39 year old male. My first flare up was in 2002 (7.5 years ago). Thought I had some sort of gastro or rectal issue. I had my appendix out the year before and was still going through rounds of antibiotics throughout 2002 and 2003 before being diagnosed with chronic sinusitis (deviated septum - nose) so the antibiotics were likely keeping the flare ups knocked down.
A year after my first sinus surgery, I had a massive flare up, and it seemed to repeat almost routinely every spring. My only correlation is that I work in an office and am more or less chained to a desk, PC and phone for 8 hours a day. I didn't get much activity in winter (5 months in Alaska), so by spring each year, I'd been sitting and less active than my typical summers which were full of hiking, rowing boats and fly fishing.
Each flare up would leave me in horrific pain, and only after a round of antibiotics from the GP or ER would I get better. Usually in a couple of days. The flare ups happened EVERY spring like clockwork with the exception of 2008, and I thought 'I'm better!'
However, I had other issues that had been sneaking up on me. I had been gaining weight over years of this on/off activity, and to aggravate issues, I have a carving studio that was a hobby that became a second job (I'd work nights and weekends to keep up with demand, sitting much of the time). Stress was a factor. I also wasn't watching my diet very well, relying heavily on caffeine to get me through the winter months of long hours of both office and studio work.
In 2005 I was diagnosed with gout in both legs. I always had some edema in my feet and legs, and it was very noticeable when I'd take my fishing waders off after spending a 10 or 12 hour day fly fishing Alaska's glacial fed streams - my calves and ankles would look like kneaded bread for french loaves from the way the waders formed on my legs in the water.
In the fall of 2007, I shot up 50 pounds. I couldn't seem to lose it, even with strict diets and exercise on and off for through spring of 2009. I was frustrated. In the spring of 2008, instead of having a flare up, both my lower legs swelled up so much I couldn't even get any shoes to fit, and at the worst, I could not fit my lower legs into my largest pants. I thought I might be on a downhill spiral to what end? I suffered some depression (I'd lost a good friend and my dad and another friend both had been struck down by strokes that left them incapacitated). So I racked it all to stress and mental state. I just had to find my bootstraps and get back on track. It just wasn't working.
The last week of June 2009, I started getting a flare up. To this point, no doctor or ER had identified that I was suffering from PC. I'd become good friends with my local GP, so much that I could actually call him anytime and he'd give advise over the phone or advise me if I needed to see him in the office or go to the hospital. When this started happening, I thought I was suffering from some rectal blockage - maybe something I ate? I had been popping gas pills for a few days as I had a horrible bloated feeling as well.
My GP advised me to try a liquid diet and milk of magnesia to assist a BM, and if the condition continued, to go to the ER (I had reached him on his cell phone at the start of the 4th of July holiday weekend). I did this for Friday, Saturday and Sunday. By early Monday I was still in excruciating pain and to make matters worse, I was having trouble urinating. The only comfortable position was to
place my rump in the air with my knees on the bed or on my knees facing the back of the couch. My scrotum had swollen up due to the trouble with urinating, and was painful to touch. I was in hell.
Called my GP again - he admonished me kindly for not following his advise and sent me to the ER.
I took as many Tylenol as I could and drove myself - my wife cannot drive and it was very early on a Monday following a holiday weekend - good luck finding a friend to drive at that time! I had to lean on a wheel chair to get myself in to the ER from the parking lot. Thank goodness it was not winter!
The ER doc prodded me once in the crack and I screamed in pain. He advised that it shouldn't hurt and he needed a closer look (I almost passed out). It only took him a moment and he diagnosed it immediately 'you have an abcess!' and 'you're headed for surgery next'. First, though, they wheeled me over for Xrays to make sure I had no rectal blockage - 4 days of liquid diet - I was as empty as could be. I didn't question or argue surgery. Under less pain, I would have. At this point, if they told me I had to be euthanized, I would have helped them. I was in the worst pain, increased not just from the PC, but from the pressure it was placing on my bladder preventing urination, that caused my scrotum to swell to literally the size of one and a half grapefruits. I couldn't care what they did, as long as the knocked me out.
The surgery crew was great. Turns out, I was lucky and had one of the best colo/rectal surgeons available, a guy that fixes other doctors mistakes! I also recovered from the anesthesia the easier than my previous 3 surgeries I had gone under in 2001/2003 for other issues.
I had to spend 3 days in the hospital, and had a Folley catheter placed as I could not urinate still. I started pumping off the fluids then. So much so, and with the IV antibiotics and the follow up antibiotics at home over the next week, I actually dropped 25 - 30 pounds, and a shirt and pants size. The edema that had plaguing me for the past 2 years so severely WENT AWAY. 3 weeks later, it's still gone. My feet look as good as when I was in college and very active. My knees, thighs, calves - all look like I did at 19. Still a slight bit of edema right at my ankle on the left leg, but that was common to me for the past 15 years. All my socks literally are falling off me now.
The first week out of hospital I still had the catheter, and my loving (saint!) wife cared for me day in and out. I am the sole provider, so lucky to have her at home with me in this time. I was more or less bed bound for the first week, and it took over a week of ice packs to get the swelling in the scrotum to completely disappear. In week 2, I was comfortable sitting in an easy chair and could move around a bit, but still fatigued. I took short walks, determined to increase my strength. The catheter was removed on my first follow up a week later. My wife did the packing for me and bandaging (I have a deep crack), and I would hit the pain pills 30 - 45 minutes before hand, it still burned when she had to pack it. I also sweated immensely during the first week at home. My mom brought us some
disposable bed pads (she is caring for my bed bound father from his stroke) and that was a great assist for the first week. The antibiotics made my stool very loose and I was prone to accidents with very little food and moving from the bed to the toilet. That stopped after just 3-4 days.
3 weeks now - 2nd follow up was good - doc said the open wound is healing very well and should close up soon. He wants me to watch the next 4 - 6 months for any recurrence or infection. I have to have a physicians release to return to work. I was surprised when he benched me for another 4 days, to return next week. I think he would have spaced it out further if I requested, however, sole bread winner and my leave is all used up. Thankfully, I have the studio income and some outstanding payments have covered our income needs. I feel for anyone without a loving spouse or partner, or anyone without the amazing health care and insurance that I am blessed with. It's still a bit sore to sit without a cushion or pillow, but I feel AMAZING - the weight dropped, the edema clearing so significantly and even swelling in my abdomen dropping off so that clothes are loose. The surgeon suspects that the PC (mine was the size of a hardball/baseball) had been causing infection throughout my body and I was really suffering from it.
I am capitalizing on my good fortune. Dropped the caffeine drinks for water and home made unsweetened iced tea. Keeping up the fluids. Cut my meals to small and of good nutrition. I take short walks and can't wait to get back to the gym. Mostly, I am dying to get back in my driftboat to flyfish the great rivers we have here in Alaska. I feel like I've had 10 years of bad removed from me.
If anyone wishes to ask me any questions or reach me, you can email me at eric at reeltrout.com
Thank you so much for creating this site, and to all that have shared their stories. Reading your experiences has helped me understand this horrible malady and gives me hope for the first time in nearly a decade that I can at least live with it, and at best, live WITHOUT it.
- Eric in Alaska
Date: July 21, 2009
StoryI had my first episode with a Pilonidal Cyst in 1981-82. The first sensation I felt, I thought it was a boil because I had them throughtout my childhood. The boils would ccome almost in the same area, on the back of my left thigh. When I felt a little pain on the top of my butt I just knew it was a boil, it will come to a head and I will be okay. It did come to a head and every thing was back to normal, I thought!!!
A couple of months later, the pain returned in the same area but only this time it was worst. I went to the emergency room in hopes that they could do something to help relieve the pain. They took a look at it and sent me back home the same way I came there. I cried all the way home. I did not do anything but try and wait it out which really was a problem because this thing had gotten so big that I was paralyzed. I was unable to walk, sit nor go to the bathroom for a week. All that I was able to do was lie on my stomach. My parents did not know what to do because the hospital sent me home. That week went by and finally it burst. There was this terrible stench in the room and I immediately was able to go to the bathroom. I have done some research on this disease and read that this condition rarely exist on African American and Asians. And that this was considered a "man's disease". Well folks, I am a 49 year old, African American woman. I am now experiencing sensation in the same area and I am afraid that this thing has returned.
Date: July 21, 2009
StoryI had my first episode with a Pilonidal Cyst in 1981-82. The first sensation I felt, I thought it was a boil because I had them throughtout my childhood. The boils would ccome almost in the same area, on the back of my left thigh. When I felt a little pain on the top of my butt I just knew it was a boil, it will come to a head and I will be okay. It did come to a head and every thing was back to normal, I thought!!! A couple of months later, the pain returned in the same area but only this time it was worst. I went to the emergency room in hopes that they could do something to help relieve the pain. They took a look at it and sent me back home the same way I came there. I cried all the way home. I did not do anything but try and wait it out which really was a problem because this thing had gotten so big that I was paralyzed. I was unable to walk, sit nor go to the bathroom for a week. All that I was able to do was lie on my stomach. My parents did not know what to do because the hospital sent me home. That week went by and finally it burst. There was this terrible stench in the room and I immediately was able to go to the bathroom. I have done some research on this disease and read that this condition rarely exist on African American and Asians. And that this was considered a "man's disease". Well folks, I am a 49 year old, African American woman. I am now experiencing sensation in the same area and I am afraid that this thing has returned.
Date: July 18, 2009
StoryMy 14 year old daughter's problem started in Jan.09 when she sat on my son's exercise dumb-bell. At first I thought it was just a bruised tail-bone. Three days later she came to me in tears and pain. When I looked at her back-side I saw some drainage, pits and two open slits/cuts down her crack. I took her to her pediatrician who referred her to a surgeon. He recommended removing the sinus and putting her on a wound-vac for 12-weeks. Two days before the surgery we cancelled it. First of all, her cycst had drained and she wasn't in pain. Secondly I wasn't sure that this procedure was the right one for her. Putting her through 12-weeks of wound-vac with changes to the sponge every-other day brought me to tears.
In the months that followed she had a reoccurance of the open slits/cuts down her crack that took anywhere between 2-4 weeks to close. In the meantime, I did research with the help of this site and also asked Dr.Bascom for advise. I visted a total of 4 surgeons in my area. I decided on Dr.Sternberg in San Francisco. He is very familiar with pilonidal. He answered all my questions and reassured me and my daughter that the cleft-lift would not be painful. While I was skeptical, he was in fact correct. On June 24, she had surgery. He used a rubber-band drain on her which was removed 9-days later. It has been 3 weeks and she did not have any complications. Good luck to you all, do your research, ask questions and get more than one opinion if possible.
Date: July 17, 2009
StoryPilonidal cyst runs in my family. My mother told me that I had an indention at the end of my spine when I was born. I am a 46 year old female. I started
experiencing pain from a small lump when I was 21 and in college. The pain got worse and a military docter did a closed procedure. I felt fine after 2 weeks post op. I have a small scar at the top of my cleft.
My father had an open procedure done when he was 21 and in the army. He had been having spontaneous drainage from it since he was 17, and wasn't aware of what it was. Since he lived in the barracks, he stayed in the hospital following his procedure for 8 weeks, receiving the dressing changes twice a day. Then he went on light duty. He told me that he had numerous tracts, one that was removed left a scar down his leg, and the cyst was the size of a golf ball.
So, when my 12 year old started having drainage, bad smelling and pus, from two sinus openings. I took her to see a pediatric surgeon at Vanderbilt. He suggested waiting until she was having so much pain that she couldn't take it anymore before having surgery. She wasn't experiencing any pain, but a lot of drainage. Which was bad at school.
I was afraid to wait and let it get larger and develop more tracts, so she had the surgery on Dec. 2,09. It was a closed procedure about 6 inches down the glutteal cleft. Stitches removed after 3 weeks, drain removed after 9 days. When the stitches came out, we found out that she still had an open wound about an inch long, and shallow. It has been 7 months since the surgery. A wound nurse has tried multidex gel, silver nitrate, sylvadene cream (because the nitrate was hurting her so much). I went to get a second opinion today, because I am so worried for her, and feel so bad for her. I thought that her surgery would have a good outcome like my fathers and mine. The new doctor suggested nystatin powder for two weeks, then come in and let him check it again. I asked about taking her to a wound treatment center, and he told me that is possible also. He told us that it didn't look infected, but it could have an infection underneath. He said that if it dosen't close a second surgery may be needed.
First, I hate to put her through that again, and also that the same thing will happen. She missed 4 1/2 months of school the first time not to mention the times that I had to make her cry from applying silver nitrate to the wound. It has been hard, and I just want her to get better. I'm not sure what to do if this dosen't heal. Who to go to, and what procedure to go with. If you have some suggestions, let me know. Thanks.
Date: July 16, 2009
StoryI wanted to provide an update to this forum given that six months has passed from my open-wound surgery back in mid-January. My wound took close to ten or eleven weeks to heal...I cleaned and packed the wound myself (not an easy task)...a small part of the wound proved quite stubborn and it required three extra visits to my specialist during which he would clean the wound, apply a chemical to facilitate the healing and pack the wound for me.
In short...so far so good. I shave the area on and around the scar every few weeks and I am relatively pain free although sometimes I'll be a little uncomfortable if I don't sit up straight in a chair.
I'm very glad I opted for the surgery but it does require a lot of diligence post-surgery with the cleaning, packing, shaving and doctor appointments. So those fellow sufferers who feel daunted by the healing process do not lose faith and continue to be vigilant with you post-surgery care and I think you will feel much, much better in due time.
Date: July 14, 2009
StoryHello
I'm a 26 year old female. I've been dealing with my polinidal cyst for about 5 years now. The first time i noticed any pain in the area was after a snowboarding trip i had taken. I thought i bruised my tailbone when falling so didn't pay much attention to it. A few days passed and the pain just kept getting worse and worse. After a week or so of dealing with the pain i wound up staying home from work for a few days
because i could no longer sit or stand without being in horrible pain.
I went to my general doctor who confirmed that i had a pilonidal cyst. I was put on 2 different kinds of antibiotics and was told to take them first before surgery/lancing. The antibiotics did nothing for me - and i wound up going to the ER
because i was in such horrible pain, not to mention it was 4 am.
First off the doctor was a complete jerk. She was rude and acted like i was 'bothering' her. She numbed me up and lanced the cyst (mind you that hurt so bad!!!!!!!!!!!!!!) After a few days of packing it started to close up and i didn't have any troubles with the cyst up until a few months ago.
Mind you for round two i was 16 weeks pregnant. Therefore i wasn't able to take any antibiotics and it flared up QUICKLY and boy was it painful. Within about 4 days i had to be seen by the doctor and again had to get it lanced and drained becuase they would not perform surgery while pregnant.
Wouldn't you know....i'm now 33 weeks pregnant and the damn cyst is flaring up AGAIN. I noticed the pain about 3-4 days ago and it's pregressively getting worse. I dread getting it lanced/drained because it hurt so bad both times i had it done. The doctor said at my last draining that it was so badly infected that about a shot glass worth of puss/fluid spewed out.
I plan on giving it a day or two more before calling becuase i'm hoping it will subside on its own this time.
It's nice to read other stories of women who can relate -
Date: July 12, 2009
StoryHello my name is Darlene and my store is diff. as its my 3 year old with pilonidal cysts. We find this out in April of this year and readin all ur stores made me see how she felt and why she was in so much pain. She gose
for surgery in Sept. of this year. I would like to know how
everything was after the surgery if someone can get back to me my
email is dritchie11 at hotmail.com.Thank you for readin my story.
Date: July 08, 2009
StoryI'm a 26 year old female in China. I had my first flare up just two weeks. I noticed one evening that my tailbone felt a bit painful and when I sat down and touched that part, it felt a bit swollen. I ignored it thinking it would just go away. On day 4, it got to the point I felt necessary to see a doctor. Unfortunately, the doctor didn't recognize what it was and simply shrugged it off. She thought I was eating too much spicy and oil food (which was not true) and since the weather was hot, too, she gave me some cream to apply to the area to "cool it down" and said no seafood, no spicy food, no oily food, etc.
I went home and the next day, I started to feel miserable. By evening I had developed a fever. It then got really bad as my temperature went up really high and I was living alone so I was scared to death. I called my parents living in another city and cried. I had to call my office manager for help and she came and took me to the hospital immediately. At the ER the doctor still didn't recognize what the problem was, but fortunately he was able to get my temperature down by injecting lots of antibiotics.
The next day, I had my fever under control and went to see another doctor. He diagnosed me as P.S. I had never heard it and was scared. He said I needed lancing immediately. I decided to fly back to my home city to have it done.
I had it lanced 9 days ago. I had a big hole on my butt now and I've taken two weeks off week. The doctor says I need to have the wound packing changed every day until the hole fills up. I don't know how long that takes and I'm really upset about it. At this point, I have the surgery scheduled in October to have it completely removed. I'm planning to take 3 weeks off work and then maybe start working half a day for another two weeks or so. I'm afraid of losing my job but I also don't want to deal with recurrence of this nasty disease. I'm just praying my lanced hole heals soon and I stay clear until my surgery...
Date: July 07, 2009
StoryI'm a 25 year old female who has dealt with Pilonidal Disease off and on for 7 years. My first experiences were when i was 17 and still living at home with my parents, a doctor and a nurse. Luckily because of their expertise I was never faced with some of the horrors that others have faced (un-anaesthetized lancing, allowing the abscess to rupture on its own and more), however there was a new kind of embarrassment – having my parents and their medical friends examine the area (including one surgeon mentioned on your message board, and not raved about) to decide the best treatment. The first time we tried hot soaks and more but wound up draining the abscess (with the help of lidocaine). The second time, about 6 months later, the abscess was excised and closed. I was convinced after this point that I was a lucky one – for a solid 5.5 years I didn’t experience a single flair up (lucky too as I spent a fair amount of that time traveling abroad and without health insurance). Unfortunately in February of 08 it returned. I didn’t know how to handle it at first, without insurance, living in a new city and without a PCP, so left it too long before going to Urgent Care in the hope of having it lanced. They were unwilling to perform the lancing at the urgent care facility so sent me to the ER where it was lanced and squeezed and drained with the help of lidocaine and percocet (they also graciously sent me home with some percocet tablets so I didn’t even have to visit the pharmacy that night – especially helpful as I’m not living with family members).
At first I thought that would be the end but within about 2 more months it had begun to flare up. Luckily I was more prepared this time with a prescription for cephalexin, which I used generously for the next year and a half to stifle nearly monthly outbreaks so that they never became too painful. Finally, after 10-12 courses of antibiotics and no end of flare-ups in sight, I asked my PCP about consulting with a surgeon. She referred me to a general surgeon who actually specializes in bariatric surgery. The meeting went well but the only option presented was excision with the open wound (marsupialization). I was happy with that before reviewing this site to get a real idea of the recovery time and after-care involved. That was also before my father got involved, calling the surgeon I had met only once from ACROSS THE COUNTRY in order to discuss the procedure (keep in mind that my dad isn’t a surgeon at all!).
My father was convinced by my previous surgeon and another physician that the Cleft Lift procedure was the best way to go, but unfortunately this surgeon is not familiar with. Now I am waiting to get a second opinion from a colon/rectal specialist listed on this site as having experience with that procedure (Dr Rombeau in Philadelphia). I’m hoping that he’ll give me good news and be able to schedule the procedure quickly, as I am loath to wait a lot longer and cancel the marsupialization procedure, currently scheduled for the end of July.
I am pretty much divided between terror at some of the stories on the site and feeling encouraged by the overwhelming support for surgical methods as a better option for those with PD. However, I can’t help but wondering if my case is more mild than others as it has never “burst” or drained on its own (the doctor claimed it was a pilonidal sinus but I have never seen or felt any drainage and wonder if he’s referring to the wound left from the last lancing/packing) and I’ve survived a year and a half already treating the area with only antibiotics and heat-packs. Some of the stories of botched surgeries or eventual recurrence make me wonder if surgery is the way to go after all. Could it be more recovery time than it’s worth? Also, if I don’t have a family member to help with packing in the future, would an open wound be difficult to deal with? Any and all advice welcome. I’ll post on the forum as well.
Date: July 06, 2009
StoryHello people, I am an 18 year old female and have been living with a Pilonidal Sinus for just over 3 years. It flares up around every 2 months and when it goes back down it is absolutely fine and doesn't bother me at all hardly. I am getting surgery soon to remove it (because it now can be covered by insurance) and I just wanted to say that it sure helps reading other people's stories, it gives me a fair enough idea of what to expect. To all the other sufferers out there - I know exactly how you feel and talk about it coz it definatly helps :)
Date: July 03, 2009
StoryHi,
Im a 23 yr old woman and I had surgery in March 2009. I had originally thought I had hurt my tail bone as I had been doing a lot of rowing and biking at the gym. Went to the docs and he told me I had prob bruised it. At this point it looked like a bruise but felt like a graze at the top of my crack. So he gave me really strong painkillers and sent me on my way. I took them and the didnt even touch the pain, it was now 5 days since the pain began to intesify so much that I couldn't sit properlly (it began on a fri/sat).
By the thursday (saw the doc on the monday) I couldnt move and was cryin hysterically with the pain. I have never experienced anyting like that in my life. I havent had any children or broken any bones etc so hadn't experienced that much pain before. My mum got so worried she phoned the doctor and asked for one to come out and see me, none were available to I had to speak to a nurse and describe the pain I was in and what the wound looked like. She asked if I had had any fluid come from it, which I hadnt, and she asked if it had a white line going through the middle of it, which it did. She told me to get to the walk in centre at the hospital asap, who then sent me to A+E and told me I had a pilonidal sinus.
I then had to walk what felt like miles to ward 3 of the hospital, up and down there stupid corridors at a pace where an old person with a stick could have over taken me at least twice. I managed to get to the ward, screaming and nearly collapsing in agony. I couldnt handle the pain any longer. Eventually they got me on a bed and gave me two injections in my butt, one of which was morphine. Gotta love the stuff, the pain went imediatly, and I managed to fall asleep. I was prept and had my operation at 2pm on the friday. Went home at 3pmish on the saturday. Had to get myself into see the nurse at the surgery on the monday, my mum took me luckily, but the journey was pure hell. It doesnt hurt like it does before you have the op, its just a diff pain when you get dressing changed, have to walk or travel. Managed to get the nurses to come to me for a week then 7 weeks from then I had to go and see a nurse every day to get dressing changed. That was pure hell. Couldnt drive so was relyin on friends and family to drive me.
I was off work for 6-7 weeks, had to see the nurse and get dressing changed daily for another 6-7 weeks after that. Thats 12-14 weeks of my life of living hell. At 15 weeks it finally closed over. It was 3 inches long by 2.5 wide by 3 inches deep, pretty huge. Its healed over ok and I check it daily and shower as much as I can. But still very uncomfy sittin esp as I have an office job. I have to carry 2 cushions around with me for when I have to sit at work or in the car or at home, its crap. I am currently booked into see the nurse tomorrow as its been hurting a lot this week, I think I have just sat on it too much, dont get up as often as I should at work, too much to do and I forget til I get a shooting pain go through me.
Fingers xed it isnt serious news tomorrow.
I feel for all of you suffers I really do.
Sam
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