|
Date: June 30, 2009
StoryHi, Wow all these stories have gotten to me. I first noticed something was wrong in November of 2006. There was blood coming out of the area and I saw 3 holes. I was 18 at the time. I went to my GP she referred me to the surgeon who told me it was no big deal.
June of 2007 I started to get severe pain, I thought I was going to die I couldn't stop crying and screaming the pain was just too much to handle. I went back to the surgeon and she didnt give me an appointment for a surgery till the end of August which I thought was ok because the pain had gone away but sure enough it came back and it was really
swelling this time so I went to the ER hoping they would do something but while I was in the waiting room it
popped on it's own. So I ended up having the surgery in August of 2007. I had home care come to my house everyday to change the dressing, they were coming to my house everyday for 6 months! During the course of this time they tried the regular packing, acticote absorbent and finally the vac in the final 2 weeks which I think did the trick. After it closed up the skin cracked 2 days later and started to bleed. It never really healed because the discharge never stopped. When I went back to my surgeon she didnt even look at it and said we could do another surgery. I didn't like her attitude she was very cold so I let it be.
In November of 2008 I had another attack, this time I went to another surgeon who explained everything to me and I felt much comfortable with her. In December of 2008 I had my second surgery and I have not yet healed and to make matters worse another PC has formed below the original wound and there is a tunnel going from the first one to the second one. I went back to my surgeon and she suggested I do another surgery and this time she will keep me in the hospital one night and put me on the vac because after the last surgery home care did not respond to her request of putting me on the vac.
I am very nurvous and scared, I have been through this before but I want it to end. It is very depressing, I have already put my life on hold and do not want to do that anymore I was supposed to go back to University in September and hope that I still can.
Thanks to everyone for putting their stories up as it has helped me see that I am not alone.
Date: June 29, 2009
StoryMy name is Ashley and I'm a 30 year old female.
I am currently in the midst of a pilonidal cyst flare up. I have
never had surgery, but have dealt with the symptoms and flare ups
for about seven years now. I actually did not know what this was
until about two years ago, figuring it was just an ingrown hair that
got infected.
I was 23 when I experienced my first flare up. Like most people
with this problem, I was really embarrassed by it's location and
figured it was something I could take care of by myself. Every day I
doused it with peroxide, alcohol and antibiotic creams. It just kept
getting bigger and more painful. A week into it, the thing had
gotten so big and excruciating that I had to leave work because I
could barely walk (or stand, sit, etc). I was starting to think that
I was either going to die or have to go to the ER (I had no health
insurance at the time). However, to my glee...the following morning
I discovered that it finally had formed a head. I have never in my
life experienced anything quite so foul. Brown pus poured out of me
and it took an entire package of cotton circles before the drainage
slowed. It smelled so awful.
After I drained it, I soaked in a bath and proceeded to clean it
out. It was like instant relief. It healed up and like most people
with this problem, I thought it was gone for good. Ha! Fast forward
to two years later. I start feeling that itch and a dull ache...ugh.
I figure once again, another ingrown hair. It grows, but not nearly
as much as the previous time and manages to burst much sooner
(though not nearly as foul). I didn't have health insurance at this
time either, so I let it heal up and forgot about it.
Fast forward another two years, I am now married and have a one year old. My son and I have just gotten over a very mean MRSA infection and suddenly the itch has returned...followed shortly by the bump. I have gone through child birth and have lost much of my shyness as a result, so I decide I've got to go to my doctor (also partly in fear that it is infected with the MRSA). For those of you that don't know what MRSA
is, it's the extremely dangerous antibiotic resistant staph
infection.
My doctor looks at it and basically tells me it's probably a pilonidal cyst, but since it's so close to my recent MRSA
infection, we better go with the broad spectrum antibiotics just in
case. She also told me that I would likely need to have surgery to
cure it. I ignore this and take the antibiotics, which heal it up in
no time.
Later, I have another flare up and tell the doctor that I just
want to do the antibiotics because surgery sounds awful. It heals up
and all is good.
That brings me to present time. I am now in the midst of my
second worst flare-up. It's not quite as bad as that first one, but
it's borderline. This time, the antibiotics did not work and it just
kept growing. I'm scheduled to see my doctor tomorrow and they have
set my appointment up with enough time to do a lancing if necessary
(I'm thinking it's necessary). I'm so sick of the pain and want this
thing gone. I'm worried that I'm going to lose my job due to
excessive absences (I have other health problems plus I have to stay
home with my son when he's ill). Plus, I don't know anything about
the surgeons in my area (I live in Memphis TN and there are no
referrals in the forums for that area). I don't want to have surgery
and deal with recurring problems. I also feel overwhelmed with
decisions to make after reading this site. If anyone has any advice,
it would be much appreciated. I would love to go the less invasive
line and have the pits removed...but how do I make that happen? Feel
free to email me at Lunasea1039 at yahoo.
Date: June 27, 2009
StoryTo whom it may concern:
I am a 22 year old male out of Dallas, TX who has had difficulty from this for awhile, but I'll just start from the beginning and work my way to the present.
When I was 19 I was having a prostate exam at the doctor's office, just a routine visit. He noticed that I had three little "dimples" in the mid-section of my butt. He informed that I had what were called "pilonidal cysts" and that corrective surgery had to take place in order to remove them - roots and all. Unfortunately, though at the time I had no way of knowing this, the doctor was confident in doing a surgery that he was not exactly qualified to do. He removed a good deal of tissue, basically the entire crack about an inch deep, stuffed it with gauze and instructed me to soak it three times a day and change the dressing once a day.
After a year, the wound had not healed up and I had developed a pretty severe infection. I was now 20 years old. The doctor referred me to a local surgeon who put me to sleep and removed more necrotic tissue. After a time the wound had become relatively small and I made an attempt to join the Armed Forces. At MEPS (Military Entrance Processing Station) they found active bleeding back there and gave me a temporary disqualify; told me to fix it and come back.
This time it gets infected again, plus I experience a reoccurance of a cyst. The doctor who did the first surgery goes back in to take out EVEN MORE tissue. This time I have a gigantic hole in my back side. The next day, I sit in the bathtub to remove the gauze and for some reason my butt won't stop pouring blood. I keep trying to put pressure on it with towels and re-dressing it; but it won't stop bleeding in a pulsing manner. I call 911 and tell them that I'm starting to get dizzy and see spots because I'm losing a lot of blood out of you-know-where. The EMT's pick me up and take me to medical city in Dallas. They rushed me into a room while I was bleeding back into the IV they had put in to rehydrate me. I was pumped full of delodid (spl?) so they could go in and stitch up the Fenal Artery which had been ripped when I pulled out my dressing that morning. A wound specialist came into the room and began putting a Wound VAC on me. I wore the wound VAC for quite some time, maybe about five months. The company thought the wound was doing well enough that they could take the VAC off, and the wound still didn't heal.
I moved to Georgia due to some personal issues in my life. Now at the age of 21. I go and see a colon/rectal specialist in Savannah, and he tells me they're going to have to do a wound debridment plus a rotational flap. They do the first rotational flap in february of 2009. The flap fails and opens up. The same plastic surgeon does a SECOND rotational flap later that month plus a Z-Plasty across the right cheek. I spent a month in the hospital laying on my stomach while I turned 22. After I was released from the hospital, the wound dehists again; but this time it was only in the middle part, not on the cheek. I go to another hospital in Statesboro where they put me in a Dive Chamber - which a pressure chamber that pumps you with about 800 times the normal oxygen level to make your body heal A LOT faster. My wound finally healed, but after about a week of walking it opened just a little bit at the bottom. As of today, the wound is about the size of my pinky fingernail, and only about half a mm deep.
I will continue to update my story as it goes. But I can tell you as a guy who has had 5 surgeries on his butt in the past 2 1/2 years, things will always start getting better.
My suggestion is to try the oxygen chamber. When nothing else was working to heal my body - that did.
Thank you for reading.
-Brad
ete.brad at gmail.com
Date: June 22, 2009
StoryHello,
I am a 42 year old male living in Manitoba,Canada that had pilonidal surgery on June 17, 2009. This is day 5 of my open wound recovery and I feel pretty good aside from not being able to sit. My wound is 4cm long x 2cm wide x 2cm deep and completely out of the midline (CRACK). I am very worried about the recurrence rate after reading some of your stories. I am hoping that since mine developed late in life that it won't return!!!! I had a bad hockey fall on my tailbone when I was 12 years old that periodically gave me a weird sensation in the tailbone area for as long as I can remember. I had to sit on a doughnut tube for a week if I remember correctly. Hopefully this is the cause and not an ingrown hair or something. This web site has been very helpful through out this nasty process. Good luck to everyone! Feel free to respond.
Cheers,
Laurie
Date: June 20, 2009
StoryWell hello good people.. I am a 19 year old female who recenty experienced her first P.C. Man o man I have never been through so much pain in my life.. As many of u mainly women I waz so scared.. N embarrassed, extremely.. I spend about 5 dayz with it.. My dayz I spent mainly standin and nitez I spend layin belly down cryin in my pillow.. On the 5th nite I decideed 2 look it up.. So I googled "pain in upper butt crack". Man waz I amazed at all the stores and all the info I found.. 4 a while I thought I waz the only person.. The more I learned and the more storyz I read the more embarrassed I became.. Hairy butt.. Lol my butt not hairy..
Well the pain waz so bad I thought only 2 thingz can happen I'm either goin 2 die from the pain or tell my mom.. 4 a second I thought death waz on itz way.. Mom waz sleep.. So I went into my 21 year old bro room teary eyed and told him.. He laughted and told me 2 get out and 2 go shave my butt.. Lol brotherz.. I try 2 make him look but he said "hell no I'm not lookin at ur butt" u got 2 love him rite.. The next day I told my Lil sis 2 take a pic and I sent it 2 my mom.. She workz on the phone so she didn't response rite away.. But when she did man she waz scared.. No lie it lookz like u have a second private area, Lil sis still callz it my second va ja ja lol
anyway I researched everything so I knew wat it waz wed went 2 my fam dr (Thursday morinin it poped, grandma told me 2 put Vicks on it so it could pop, and it did.. Very stinky but made it feel way better)Fri saw a surgeon.. Monday had surgery.. Scariest day of my life.. Itz been a whole week.. And itz been pretty good.. I had a open one.. And my mom cleanz it.. And man does it hurt some timez... Itz stickz 2 the gauze and my mom tryz her best 2 not let it hurt but boy does it...
I just wanted 2 tell my story and thank all u great people 4 helpin me out especially the women.. Itz great 2 know I'm not the only one..with diz hairy butt disease, even if our buttz have no hair.. I lasted about a week with it and I thought I waz goin 2 die.. Don't know how u all lasted yearz.. Yearz with it.. I prey mine never comez back.. I have faith in my dr and my mom 2 help it not happen.. This website really helped.. Us people with second or 4 guyz first vagina in r butt crackz have 2 stick 2gether lol.. Sorry itz the truth and we all know it..
Well thankz I look forward 2 hearin new stories.. And informin everyone on how my progress goes.. I've even got my mom lookin at the site.. Well She iz my nurse now so she haz 2 be informed.. Again thank u!! J.A
Date: June 20, 2009
StoryI discovered I had a pilonidal sinus when I was about 20. It was excruciating but despite the repeated trips to the doctors for antibiotics I refused to consider surgery - particularly when the doctor said the operation was 'quite unpleasant'. However, when it all got too much, I saw a different doctor who put a new light on things and I finally agreed to get it seen to. The best thing I ever did. 26 yrs on, I haven't had a day's trouble since. My only regret is that I spent so long avoiding it and enduring needless pain.
Date: June 18, 2009
StoryHello all,
Here is my story:
I am a 26 year old male currently. When I was 18 and just graduated from High School, one day I felt some tenderness on my backside. I went into the bathroom to check it out and noticed I had a bump at the tip of my crack, lower back area. I was very scared and had always been terrified of doctors and surgery. I went a year and half I believe of living with this thing on my backside. I finally got sick of it being painful one day and told my mom about it. She then made me an appointment with a dermatologist. The dermatologist misdiagnosed me with pyrogenic granuloma. He then "burned the tip of the cyst off at the surface and dug into it a little ways to burn that too. He said he didn't feel comfortable going any deeper so he stopped the procedure. I then went home and was treated with some cream stuff for the small hole and even though there was still half of a little knot or ball inside me, I was painless, no draining anymore and was very happy. I didn't have insurance at the time and the dermitologist wanted me to see a surgeon to remove the rest. would have been expensive so I opted not to do it.
I lived with it with no problems until about 4 weeks ago. The cyst had grown back and flared up and made an outer "ball" looking thing again. It was painful to sit and I thought it was finally time to get this thing taken care of. I scheduled an appointment with a surgeon and he confirmed it was a pilonidal cyst. I was scared because I had read some horror stories about it and seen gruesome pictures on the net of open wound surgeries. I knew it was time to face it though so today, 6-18-09, i had my surgery. My cyst had gone back down and was smooth again on the skin so there was no infection. The doctor cut it out ( about a 4 inch incision) and "superglued" everything back (newer procedure) the surgery took 20 minutes and i am at home chilling out feeling amazing. I encourage anyone with this awful ailment to get the surgery and not just lancing or anything that will probably not completely take it away. The doc said there was a minor 2% chance of it returning but the surgery usually will take care of it for good. these things can form (and did in my case) by ingrown hair. the doc wants me to have laser hair removal back there and that is a no brainer to prevent this thing from ever happening again. I know many have had worse experiences but I am very blessed that everything has turned out great and hope this encourages those who are contemplating the surgery...piece o cake, go for it and feel great afterwards!
Sincerely,
KK
Date: June 17, 2009
StoryHello all. My first experience with all of this was when I was 15 years old. Not having a driver's license, I'd ride my 10-speed to get around. Once day, I came home and felt "wet." I thought that maybe my period had started early, but when I went to the bathroom to investigate, that was not what I found. I yelled for my mother, who instantly knew what it was. She took me to my family doctor, who gave me a couple of locals and them proceded to drain it. He squeezed it, I think, and then gave me a stich.
With a prescription for antibiotics and cream, I was sent home and
told to schedule an appointment with the surgeon.
My mother did just that, but the surgeon declared that a
pilonidal cyst was not the problem and sent us on our way.
When I was about 19 years old, living on my own and having no insurance, it flared up again. I called the same family doctor, who ordered me a dose of anitibotics
and we were able to nip it in the bud before it flared up too much.
At about 21 it flared up again. Again, I had no insurance, but
was unable to get in touch with the doctor fast enough and had to
drain it myself, with the help of my older sister. I sat in a hot
tubs and squeezed and squeezed. It healed and all was well.
At about 22, guess what was back? Again, it flared up, and still
no insurance. Even though I couldn't really sit down or put on my
own shoes, I still drove for 3 hours to stand at a Pearl Jam
concert, hoping it didn't choose that moment to break. A couple of
days later, it broke. This time I was completely on my own, sitting
in the hot bath water and pushing and pushing to drain it.
After that occassion, my cyst did not really flare it's ugly head
for 14 years! Mind you, it hurt to sit "square" for long periods of
time, and it would get tender and sore periodically, but never did
it get so bad that it needed to be drained.
Now, at 38, I had another flare up. I was able to see my new
family doctor and get a round of antibiotics and keep it at bay. I
was sent to see a surgeon who said I should have the surgery; I had
a 70% change of another flare up, but, then again, maybe I'd go
another 14 years without one.
Six months later, I was back on the phone to the family doctor begging for anitbiotics. He wouldn't give them to me. Call the surgeon. From the morning to the afternoon it swelled up and out signficantly.
When I finally got the surgeon's office, it was obviously going to
need to get drained. The nurse told me the doctor couldn't see me
for two weeks! I just started laughing! My family doctor wouldn't
see and now the surgeon wouldn't see me. I asked the nurse if I
should just go to the ER or plan on spending the next week in the
tub? She took pity on me and squeezed me in for a lancing the next
afternoon.
Remembering what my doctor had done 24 years earlier, I figured I'd go to the doctor, have it drained and go to work. I couldn't have been more wrong! This time, the local didn't particularly work and the pain was horrible. I was screaming and begging for the doctor to stop. When he did, he was happy to report that he'd got out 20 cc's of goo. I was in shock; I hadn't expected that much pain! I walked out of there, not really understanding anything they told me, sat in my car and cried for 20 minutes, and then drove home for an hour in WLA
traffic.
When I got home, I went to take a shower. I wanted to put a fresh
bandage on it. I'd turned down home health care, thinking it would
simply be just putting a new bandage over it twice a day. When I
took off the bandage, my husband declared there was something
sticking out and should he pull it out? I said absolutely not. I
took a shower and spent the night in horrible pain.
The next morning, I called the surgeon, crying. He told me to come into the office, the nurse would give me a prescription for Vicodin and show my husband how to change the packing. I had to have that first packing done with only extra strength tylenol. My screaming and crying nearly made my husband pass out, and it became clear in that moment that there was no way he could take care of it. It took three days to get the home health people set up, and in that time I was driving back and forth, nearly an hour each way, to have the nurse change the packing. Fortunately, after day number two, the pain from having the packing changed wasn't nearly so bad. A week after lancing, there was no more ooze and I was told that I didn't need to keep packing it. Give it two more weeks and then call to schedule surgery. He would preform
a closed surgery, and only if it got infected, would I have to worry
about dealing with it being open.
As this doctor's after care wasn't all that (being sent home without any pain killers or making sure that I completely understood what was required to pack it) I'm hesitant to have him do the surgery. This week I met with another surgeon, closer to the house and a colon/rectal specialisty. She WILL NOT do the stiches;
will only leave it open.
So, I set at my desk, freaking myself out looking at pictures of people's surgery, reading about failed ones, successful ones and the like. I have to work: I do not get paid for sick time or vacation time. If I do not work, I do not get paid. I also have a small child to take care of, so the idea of being laid our for a month doesn't seem like a real possibility. Additionally, my husband cannot change the packing and there is nobody to help me. My mother has passed on, my one sister lives in another state and my other sister is currently going through having a double masectomy.
All that being said, the risk of infection, or it not healing
right or getting another one makes me consider that maybe I should
leave it open. It is not the surgery, it is the aftercare. Should I
make a choice based on long term results or what my immediate needs
are?
Or (and I cannot help but be inclined to lean towards this one) leave it be and maybe hope for another 14 years of good forturn?
Date: June 11, 2009
StoryA message of hope from a 6ft tall 34 year old woman (with a non-hairy bum!) who had surgery with no complications, other than a horrified boyfriend:
I had a pilondal cyst that I clearly remember feeling pain from by the time I was in 6th grade. I remember specifically because it became painful, then impossible, to sit cross-legged ("indian style"), which was (and still is; sorry knees) my preferred way of sitting. My parents told me I was imagining things and/or that I just bruised my tailbone because I was going through rapid growth spurts and was a klutz and sometimes fell flat on my butt. By high school I noticed a rather large red painful bump at the top of my bum crack, researched and figured out it was a p.c., but I was too embarassed to say anything and be a "monkey girl," so I suffered through it, with no intention of dealing with it. In comparison to some other stories on here, it wasn't so bad.
Then, at 18, on one of the first nights I spent with my first "real" boyfriend, I awoke (naked) in the middle of the night to find both him and me covered with blood and smelly pus; the cyst had fully drained itself while I slept and as I'd tossed and turned it had gotten all over the sheets and on him too! I thought I was going to die of embarrassment. This had never happened before. I'd had some minor leaking in the past, but I'd learned that eating fiber and taking sitz baths and not sitting certain ways helped reduce inflammation, so I had only had a few minor flare-ups....however I had not taken the new occurance in my life- physical intimacy-into account; I suspect our inexperienced teenage aerobics triggered this cyst explosion...SO incredibly embarassing AND I was still on my parent's health insurance, so I had to explain to them too. Ugh.
Long story short, they didn't do much for me at the ER, but I ended up having the whole thing removed a few months later; day surgery, it was a breeze. It was pretty deep, but my boyfriend was a saint and helped me pack/unpack it with gauze...this was back in 1995. Keeping it clean was the most important part.
It took about eight months to fully close, and now my entire family giggles anytime someone utters the phrase "half-assed" because my butt is literally stiched half shut. I've decided to embrace it and since you can see the top of the scar out of the top of my jeans (a monkey stamp, not a tramp stamp, thank you) I've learned not to be shy about it....and have been amazed at how many people I've met at parties. etc over the years that had the same problem!I do still have trouble sitting cross legged for any real length of time and sitting in a hard chair is still hard; there's no padding on my butt(!) but I have never had any further issues with it in almost 15 years. I'm cured, I think!
:-)
Good luck to all, there is hope--and I hope you have a supportive parent or partner, because unless you have a head that rotates completely, it can be hard to take care of yourself at first! *hug*
Date: June 11, 2009
StoryHi, I'm an adult man, and just turned 30 last week. My experience with Pilonidal Disease started 3 years ago in July, 2006.
My life in 2006 involved a lot of sitting. See, I worked full time in an office, attended 4 night classes and 2 more on Saturdays to finish my degree (with lots of study and project work time as well, obviously), and held a senior role on an advisory board that met about 30 hours a month whenever most everyone's schedules could align. Plus, to relax I played online video games with friends for, I'd say, and additional 10 hours of sitting per week. In other words, I was sitting for approximately 85 hours per week.
In April of 2006 a lot of this changed. I was graduating from university and only had one class left. So my work week dropped to approximately 55 hours per week! But my gaming time made up some of the slack, so I still sat for about 70 hours per week.
Now, I wasn't in great shape back then, but my then fiancé (now wife, thank God! I'll explain below) and I went for long trail walks in the river valley, and walked everywhere else because we didn't have a car yet, living in the downtown core. I was athletic for most of my life but, ironically it seems, in several sports involving sitting, such as rowing and mountain biking. And I was able to jog every once in a while when the urge struck me. So I wasn't too overweight.
With that background I hope you can put yourselves in my shoes a little better. With 6 final exams done in April, my wife and I left for our first vacation together the night of my last exam. It was great! All except I kept getting VERY itchy in my butt crack, especially while driving it seemed. It was so frequent that I was getting frustrated and itching rather roughly in an attempt to make it go away.
A few weeks later, back home, we were sleeping in our tiny, but hot apartment (it was a record heat wave in our city that Summer) when I woke and itched my butt crack again, but this time I felt something. Something like a small scab, or divot. I woke my wife up to get her to check and she said it was a small hole.
I've only heard of these kinds of things happening in several parasitic cases, so I pretty much freaked out. We check, double check, triple checked, tried to sleep, toss and turned... it was torture waiting to go in the morning to the Dr.'s office. When I went, the Dr., who now I believe was in the midst of their residency and therefore inexperienced with this concern, said she has never seen this, have I noticed any bugs or parasites (to which I almost passed out upon hearing) and then assigned me to see a general family doctor. I went to him right away, and he set me in the right ballpark in terms of what I'm experiencing - a "Pilonidal Cyst". He sent me to a general surgeon, who looked at it and suggested surgery. I was too naďve, not to mention afraid, to press him too much for answers and options, so all I asked was, "If I don't get surgery yet, can it become cancerous?" He said yes. Surgery was scheduled for a couple of weeks later.
When I woke up in the recovery room, even on the heavy anesthetics the surgery used, I was in pain. We went home after a couple of hours and met with our first home care nurse, who trained my wife in how to care for the wound. That's when I found out the wound was 5cm long, 2cm wide, and 3cm deep. We were to change the packing daily, have baths/showers, and go back to work after 6 weeks.
My wife bravely took up the responsibility. I feel genuine sorrow for this, because she's had a rather sheltered and safe life with no serious accidents or experiences, whereas I came from a military and close protection background before meeting her and going to university. I was a little more accustomed to field first aid and combat wounds that sometimes resemble what we were dealing with. Anyways, she bravely learned how to do all of the necessary things, cleaning the wound, checking depth and for infection, redressing, and caring for the instruments and supplies. Now, I consider myself a fool for how I behaved back then. Within a couple of weeks I had read a few books for fun and grown bored so I went back to playing on the computer. STUPID decision. And After 6 weeks I was back at work - maybe a little too soon. AND, I embarrassingly never thought to look online for information on this disease. I wish I did.
Over the course of the next 16 months, I endured infection after infection, tear after tear, and "pocket" after pocket in the wound. The surgeon suggested a second surgery, which happened in October, 2007, three weeks after my wife and I got married. This time the wound wasn't as big as the first, but it was still massive. And it was lower in the cleft. A week after the surgery I was fitted with a wound vac.
Now I have some points to say about the wound vac. Your local health care organization will argue that they are in short supply and that other more serious patients might need them. If you're on the waiting list enough time in advance, it should be a problem. You will benefit from it! BUT, and it's a big but (no pun intended), it hurts. See, they stuff a sponge into the wound, cover it with airtight tape, and plug a weak little vacuum into it. It sucks away at the wound, pulling all the stuff out and helping it heal (much more efficiently!). But taking the sponge out was murder for me. Apparently the new growth can start to absorb the sponge a bit, making the removal of the sponge quite literally a tug-of-war. The first time this was done on me, it took 90 minutes to get it out. It hurt, a lot. But in about 2 months I had healed almost to the surface, as opposed to 6 months. It was worth it!
With the wound vac off and the wound nearly healed, I returned to work (I took 2.5 months off this time). It wasn't long before another pocket built up and burst. I blamed it on sitting and bad posture (but still didn't think to look for this site, frustratingly). Months went by with hopes growing and crashing with every tear and flame up/drainage.
The surgeon suggested local freezing to cut it open and drain it again. We were pretty frustrate at this time that it had been over two years and all progress seems to be sliding backwards, again. We ended up leaving him for another surgeon, who set us up with a wound care clinic right away, in August, 2008.
This wound clinic was a mixed blessing. Firstly, we found out that a lot of the tips we were given we bad. For instance, and open wound (no matter what kind) should never be exposed to tap water (via bath or shower), and that us showering the wound regularly probably accounted for several of the infections. Second, I was using a donut pillow. They gave me a foam seat that's especially made for lower back physio recovery. And a host of other corrections. Following their advice, the wound healed remarkably fast! In two weeks it made up 90% of it's growth. It was pretty much done! And my wife learned new techniques for wound care (I already love her, but I swear she's a saint) such as massaging the scar tissue and area.
By November, I was out of bandages - the first time in 28 months! I still had a small tear every once in a blue moon, but it wasn't too bad. Then two days before Christmas a large pocket suddenly burst. I was feeling some discomfort leading up to it, and I was sitting at a desk a couple of time that week, but for it's size and lack of serious pain, we were surprised. We went right back to doing what we were doing with the wound clinic. It healed again.
Since January of this year I've had two micro-sinuses (very small sinuses, the diameter of a pin or needle) and minimal drainage, and one tear. Again, no pain and minimal discomfort. I was out of the bandages for a couple of months by the time the second micro-sinus occurred. But things healed. In fact, a couple of weeks ago I felt GREAT! I mean, I was able to walk comfortably again! I felt less restricted in general movement than I have for the last 3.5 years! I still wasn't sitting at all, except for driving - which I did do for a couple of hours at a time sometimes back in May.
Then last week, a day after my birthday, I was really sore. I figured I seriously bruised the scar tissue from sitting while driving and at the restaurant we went to for my birthday. But the pain grew, to the point that barely touching it hurt. After three years (which will be in the first week of this July), I can't recall when a pocket ever hurt this bad. It wasn't as bad as I've read. I could still walk, for example. And my wife caught me sleeping on my back a few times too. So it wasn't unbearable pain, but it was worse for a "healed" wound than I've experienced. Sure enough, Tuesday around 1:30AM it burst. We cleaned it up and found a small sinus. It's been draining since then, and the pain has been decreasing as well, but it is concentrated in one spot.
THAT is what finally clued me in to look online and find this site. And I have to say, I am SO THANKFUL, sincerely, for this site! I've learned that we have tricks to handle this! We have options! We're armed with knowledge and informed questions & practices! My wife and I are so grateful! It brings us hope that this is at least manageable, and at best BEATABLE! And we thank you for that positivity that until now was drowned in a lonely, frustrating and scary world!
The next steps for us are: we're back to daily dressing changes; we're leery about showering with a sinus so we use a waterproof bandage; I'm calling the wound clinic in the morning to set up an appointment (there weren't open since this started on Tuesday - funding problems); as I type this I have a heating pad on the area to help move it along and drain it more efficiently (as I'm convinced, thanks to the info on this site, that it's infected); and many other little things. We honestly feel like we have a good fighting chance now that we've found so much information and a great community for this disease! It's time to take control back! :)
Date: June 10, 2009
StoryHello everyone.
My name is Tea, and I had pilonidal surgery about three years ago. My story is slightly different from most of the stories that I read, so here goes. I have been battling hidradenitis since I was about 12, I'm 32 now. I suffer from the disease in my inner thigh area and, most recently, in my underarms.
About 10 years ago, I developed a pilonidal abscess in my tailbone when I started working in an office setting, mostly sitting during my workshift. After developing a 104-degree temperature and an indescribable pain in my tailbone, EMTs scraped me off my living room floor and rushed me to the emergency room via ambulance.
After anesthetizing the area, which was more painful than exfoliating my skin with a sea salt and isopropyl alcohol scrub, the surgeon drained the area and packed it with gauze, to be removed a week later by another physician, who specialized in cysts, boils, and the like.
The surgery left a teeny scar that could only be viewed if someone of the opposite sex was "up close and personal." No biggie, until five years later when I kept developing another abscess just a half an inch higher than my teeny scar. I was referred to a specialist, who scheduled surgery for me.
I thought the surgery would be similar to the one I had five years earlier. To my chagrin, I woke up in the hospital with a Jackson-Pratt bulb hanging from just above where my butt crack used to be. When I looked in the mirror, the surgeon sutchered at least four inches of the beginning of my butt crack together.
I asked questions prior to the surgery and had been through a pilonidal excision before, and I couldn't understand why I didn't have my crack, butt-crack that is.
My surgeon later told me that he cut out all the feet or distributaries the original cyst caused to ensure, or at least try to ensure, it didn't return. The doctor explained there was no way to tell how much he would have to cut away until he actually opened up the area, and he said if hadn't, the cyst would have surely returned. Another doctor, unaffiliated with my surgeon, commented on how he'd never seen such a careful and well-executed post-surgical sutchering (on one of my post-surgery-please-help-me-because-this-sitz-bath-ain't-working visits).
Three years later and I'm still tailbone-abscess free, but I am so very insecure about having a keister that looks like its crack's been made with some type of clay. I AM IN NO WAY INSINUATING THAT I AM NOT GRATEFUL TO NOT HAVE THE PAIN AND HASSLE ASSOCIATED WITH THIS HORRIBLE BUGGER CALLED THE PILONIDAL CYST, but as a young woman, I can't help but feel anxiety when bending over to pick up a piece of paper because someone may see or ask me about my "fake butt crack." That coupled with not being able to feel comfortable in a bathing suit because of the scars that the hidradenitis boils have left on the inside of my thighs or not being able to raise my hands over my head when I'm dancing in a sleeveless shirt or dress for fear someone may notice the sinus tracts under my arms has just really caused me great emotional pain that I fight often to suppress.
I don't want to sound vain or ungrateful, but I just wanted to share my story with people who know EXACTLY what I've gone through and am going through.
Thanks for reading.
~Tea~
Date: June 10, 2009
StoryJune 10, 2009
Hi Everybody - I feel obligated to post my story here. Your stories encouraged me to take care of my "hairy mans butt disease" (can you believe they call it that?)...
I had my first "flare up" two years ago in september. About a month earlier I had kidney stones/infection and laid around with a high fever for weeks. Then I ended up with this thing on my butt. I really didn't want to tell anybody that I had this problem, I just though it was from laying around sick and that maybe I didn't clean myself good enough? It was summer and I am a sweater as it is. I kept this to myself for a couple of days, I think by the 4th day I could no longer walk. I had a huge blood blister looking lump the size of an egg hanging off my backside, I couldn't walk, stand up, sit down or do anything but lay on my belly in my bed and cry. Then in the middle of the night it "blew", I looked like someone shot me in my butt, for lack of a better description. Needless to say this was 100% relief and I felt better. Phew its gone, who needs a dr?
I didn't have another occurrence until next September. Now, this is my September disease. This time I went to the Dr, I remembered how awful it was last time and i didn't want to go through it again. I had done some internet research and found this website and done my own self-diagnosis. My Dr. said, yep its a pilo, here are some antibiotics you should be better in a couple of days and then if you want i can refer you to a surgeon. Well, why would I want that? I asked her for some pain killers since it was all i could do to even drive my car to her office, anyone who's had one, probably has been through the driving with your right arm on the console and the cramp in the left leg trying to hold yourself off of your butt so you can drive.. not fun. She told me I didn't need pain killers, that I could go home and take some ibuprofen. (I need a new Dr. she has apparently never experienced the pain of one of these things)
After a few days it "blew" again.. phew I thought, i can live on. This time it didn't go away. It didn't hurt all the time. Every now and again it would just flare up and then drain. By November and my wedding, I still had this thing, EMBARRASSING... time to tell the hubby what's wrong with me. Gotta love him for still marrying me, lol... He was as apathetic as he could be, i never showed it to him and he had never had one, so he doesn't really know what I am going through.
March comes along this year, and its still not gone. I haven't called my Dr yet because she told me I could see the surgeon "when its gone"... well its time to do something. She gave me a referral to the general surgeon and I had an appt for the next day to see him. Again, "yep thats a pilo" ... you think? (Everyone calls it pilo, its easier to say) It had drained already so I thought I was going to see him to schedule a surgery... boy was I wrong, he told me there's still stuff in there! OH MAN! I'M SO NOT READY FOR THAT! He tells me to drop my pants and bend over the table and lay on this silly paper pillow thing he had. He proceeds to give me about 7 or 8 Lidocaine shots that are "supposed" to make it not hurt? Well let me tell you, that was WORSE than any pain I have experienced! If I ever have to get that again, forget the lidocaine, just cut me. He told me that should do it after it was all done and that if I want to have surgery i can, its up to me, but that its going to come back. Well, I'm not coming back for this again, so lets schedule the surgery.
I had my surgery this past friday, june 5. I had the closed surgery. I had never had surgery before and I was terrified. The morning I went in there, I told the nurse I'm so scared, they gave me something to relax, and boy did that work! Next thing I know I'm climbing on the surgery table, asking questions about equipment in the room, what's this and that... I was looking forward to the counting down from 10, for some reason i've wanted to do that? I don't remember that part, don't know if I got to do it or not. The next thing I remember is being rolled into recovery when they were putting the hospital issued panties on me... whoa ladies what are you doing to me? They said they were putting my panties on me and that I was all done. Really? That was a cinch! What was I so afraid of? They gave me a coke and before I was even done with it, I was on my way out the door.
Today is Wednesday, june 10, its been 5 days since my procedure. I couldn't be happier so far. I was worried about the closed surgery from some stories I've read on here, but I am having a good one, so I have to share. I could not afford to take that much time off work or deal with the embarrassing leaks all over at work and discomfort so I opted for the closed wound with stitches. I did break a stitch this morning, going to the bathroom... sorry folks, it happens, pain killers back you up, and I recommend stool softeners. So far the only pain I have experience is this stitch coming undone. They told me I could resume normal activity a day after surgery.
Take my advice, if you have the stitches... take a week off work and lay around. Your body needs rest to heal. Its quite boring, but it helps! I have no signs of infection and virtually no pain at all. Granted I have pain killers, but I am taking them to ease the pain from the stitches and really thats about it. I feel like a new woman. I go monday to have my stitches removed and will go back to work on Tuesday.
Date: June 10, 2009
StoryHey,
Let me see where do I start with this!
I first felt something was wrong when i was 17 and being a bold girl refused to tell anyone on till i couldnt take the pain any longer (6months later) And that is when i met the lovely Mr. Stephens in mount carmel hospital in Dublin.He informed me what was wrong and gave me a lecture on waiting so long to get it fixed! As i was in my last year of school i had my final
exams coming up so he decieded i must wait till i had finished those exams and had come off the pill (ggrrr!)
First surgery went really well apart from the nearly 2years waiting for it to heal with daily trips to the hospital to have dressings done. I would also have check up with Mr stephens but he was very fond of silver nitrate (Ouch!!) or just ripping the wound open with what ever was near (stitches remover,tissue) and then i got the good news it was gone!! however over the next few years it would still feel a little odd but it wouldnt feel infected so i could carry on as normal.
Now roll on 7 years and it was back! So off to St Jame's hospital. It was nice to know my surgeon remembered me but only as the smelly horse girl (I had started working on riding yard during my first surgery) So a second surgery was carried out this time he stitched it closed, it healed and i was very happy as i had a really nice nurse who fixed me double quick time!(3months) But i hadnt been out of the hospital more then 2 months and it was back! So another lecture for Mr. Stephens and the nurse! So under the knife i went again, left with a open wound which took 6 months to heal, with daily dressings. If the nurse noticed something wrong she would fix it herself without me having to wait to see the surgeon. So that was all finished with at
Easter. But alas i felt something rip open 2wks ago and guess who am going to go see shortly!! well thats if he hasnt retired! how many people can say i have had a surgeon look after my ass for the last 8years!!
so all my fingers are now crossed that this will be the last time i have this evil thing!!
The best thing to come out of this is, nothing can embarrass me ever again!(good thing to as i know work in a sex shop!!)
So good luck to anyone who has this!!!
Rachel :)
Date: June 05, 2009
StoryHi, my name is Jo. I first had Pilonidal cyst about 2 years ago. The pain was unbearable, couldnt even sleep. When the doctors knew what it was i was referred to hopsital and the next day i had the operation. They left the hole open and i had to have it packed everyday until it closed. Thought i had the all clear until a year later the hole was still open and again i was referred to hopstial where they told me i needed another operation. This time they closed the hole and my chance were better of not getting it again. Recently ive been having some pain in the area and went to the docotrs today where they told me that it has come back. This will be my third operation. Im finding it hard to cope with this one, and is going to be for the rest of my life? I am 19 and a woman which is rare and dont know anyone who has had this. Also i recently started a new job and being off for about 4-6 weeks doesnt look good. I hope no one else goes through this three time.
Date: June 05, 2009
StoryI'm 20 years old and currently stationed in Germany.
About two years ago I was in High school doing sit ups in the Phys Ed class I had. I noticed a slight tenderness around my tailbone and thought nothing off it(we were on the hardwood floor after all). After a while I noticed the pain around my tailbone hadn't gone away, and it had begun to form a red lump on my hindquarters. I went to my family doctor as soon as I could and sure enough, he informed me that I had been attacked by the Pilonidal monster. I went in for a pre-op and then finally had the 1st surgery. I choose to do a limberg flap because of the quick recovery time. I woke up two and a half hours later gasping for air and had no idea where I was. One of the house nurses came up to me and informed me that I had just left the O.R and that everything went just fine. I looked down under my skivies and it looked like they strapped a couch cushion to my rear end. Two years later after I joined the Army I noticed my scar had begun to get a little tender every now and then. One day it got so bad I couldn't even sit down in my car to drive home from work. I went to the local Klinikum they have here and sure enough, it seems the Pilonidal monster has struck again. So far I've already had it lanced and I'm currently waiting for my 2nd pre-op. DO NOT LET AN ARMY DOCTOR PERFORM A LANCING ON YOU! IT FELT LIKE THEY USED A CHAINSAW ON MY HIND QUARTERS!
Anyway if you think you might have a bite mark from the Pilonidal monster, don't wait GET IT CHECKED OUT!
Date: June 04, 2009
StoryKeenan again... to add to my post. I did get surgery again on Monday June 1st and the doctor isn't sure if I will have further issues or not.
Date: June 04, 2009
StoryMy name is Keenan. I was first diagnost with a Pilonidal Cyst 3 years ago. I got it lanced and let the surgent remove the cyst. They closed the wound and it left me bedridden for a week. I thought I was in the clear, but a year later I started having trouble sitting down for long periods of time and I had to take frequent blatter breaks. It wasn't until 2 months ago when I started to worry about another cyst, I had some drainage along with some pain but I blew it off since I'm in the Navy. Wrong decision... last Thursday the bastered came back with a vengeance. It drained a lot and the pain was horrific. This was soo different than the Pilonidal Cyst I had... this time I had a sinus and the problem was right around my rectum. Needless to say I was in the ER on Monday night. The wound is still open so I'm trying to keep the area clean, I have to clean it after every bowel movement. The wound still drains, but so far no signs of another infection. Right now I'm nervous that I will keep having issues; I'm a very active person and this is ruining my life. If any one has any advice on what I should do please email me at patriotrocketk
at yahoo.com
|
