My Story

Discussion in 'Pilonidal Discussions' started by Kurt M, Mar 10, 2014.

  1. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    Hello. I am an 18 year old from Winnipeg, Manitoba and at the beginning of October, 2013, 3 days before my 18th birthday, I had my pilonidal cyst lanced for the first time. For 5-6 days (ish) before the ER trip, I had no idea what was causing this unknown and extremely uncomfortable pain in my coccyx region. At first, I thought it was pain coming directly from my tailbone as a result of a trauma that I had potentially not noticed at the time, while working a physical job in a warehouse. By about the 5th day, I physically could hardly do anything without being in extreme pain. I was in dire need of money, so I was continuing to work through the physical pain that I was passing off as a benign tailbone pain. While working I tried to eat an apple, and just ended up throwing up anything I got down. Even walking would cause me to experience shock-like throbs in my tailbone.

    Finally, when my anxiety took control (i have GAD) and made me go on a frantic internet search in the evening of the 5th day to self-diagnose my problem, I came across "pilonidal cyst" and found I was exhibiting all the symptoms and knew I was in for a trip for the Emergency Room. This instantly scared me, as with further research I learned it would need to be lanced and likely result in surgery to try and get rid of once and for all.

    When I got to the ER the next day, after sleeping (somehow, must've been a miracle), I immediately told the triage nurse that was asking me what I had wrong with me that I 100% most definately had a Pilonidal Cyst. I luckily got in within an hour, which was lucky as I usually wait 5+ hours at Emergency Rooms before any assistance (it's just how Winnipeg is, and it SUCKS). The doctor on duty took a single look at my rear and told me I definately did have a Pilonidal Abscess and that it would be lanced. In quite extreme pain already (the cyst lump had came to a head and was already starting to show where the sinus would be, so in other words, close to popping on its own) I was very scared as I knew what I was about to be in for. And just as I had thought, I would go through the worst pain I had ever felt in my life that night.

    For some side information, I have had a appendicitis when I was 7 years old, which required me to be on constant IV morphine for the multiple weeks that I was hospitalized while the hospital doctors had no idea what was wrong with me. When I compare the un-medicated feeling of the appendicitis occurance, to the pain I felt during the lancing, the lancing absolutely blew the appendicitis out of the water. The 20 minutes or so of the general surgeon cutting into the abscess and squeezing out all the puss, and then continueing to pack a few feet of gauze into it was the worst and most traumatizing experience I have ever gone through. To this day when I even think about it, I immediately begin to sweat because of how horrifying the pain was. I will NEVER EVER let a ER doctor lance my abscess ever again without being HEAVILY medicated if not put to sleep completely, because that experience is one no one should ever go through. The trauma alone of the lancing has turned me into a severely anxious and paranoid person about my health problems, I worry I'll never be the same somewhat carefree kid I once was.

    Once I was done shaking and sweating and nearly breaking the metal bed that I was clutching to during the lancing, the doctors were quick to send me on my way with a amoxi-clav prescription(which I would later learn isn't even a preferred anti biotic for the treatment of this problem, I now take cephalexin to fight the infection of my pilonidal), with instructions to pull 2 inches out every second day of the gauze packing, without any pain medication given to me for the gauze removal. I found out the first day of pulling it out that it hurt like crazy, and my GP prescribed me some T3's to help with it.

    I have not have another infection since that date, but my cyst is almost constantly severely inflamed, which causes me quite a bit of pain on a daily basis (which I now have a physical dependance to codeine, as a result of trying to cope with for many months now).

    In the months before seeing my surgeon, I would also be pleasantly surprised (jk) to find out that I have scoliosis (dad also has it) and that I would likely experience back pain at times as a result of it, which I had been. I waited 2 months to see a surgeon (due to Canada's referral system), one Doctor Yip of the St Boniface Hospital, who would tell me that "These abscesses are tricky and you're better off just living with it than getting it removed, as you might have either an unhealing wound or pain the rest of your life either way". Immediately I burst into tears, as the 2months waiting to see him had been the roughest time of my life, with sinking depression and generally intense anxiety due to the trauma of my first experience with the infection.

    I had an appointment with my GP for the next day after the meeting with surgeon, and she told me that she didn't understand why he would say that. As a result, she referred me to Dr. Hutfluss (who I had read about someone on this forum having great success with a pilonidal surgery by him, and that he was knowledgable in Pilonidal Disease). I am currently waiting to see Dr. Hutfluss for another 3 weeks or so.

    Today (10/03/2014) I went to my GP as I recently had an ear infection and needed medication refills, and was having jaw/ear problems for the last few weeks (thumping in ear, ear aches, headaches, jaw clicking and other issues of that nature) and I would find out some even BETTER news (obviously sarcasm). I found out that I have something wrong with my TMJ (left side of jaw pops out of place) and that I will likely need oral surgery in order to not have an arthuritic joint by the time I turn 20. I'm also quite sure based off what my mom said that we don't have coverage for oral surgery via orthodontist, so that alone might be a expensive job.

    That is my whole last 6months, and honestly I feel like giving up so badly. I struggle to get anything done or be happy lately as a result of anxiety and depression caused by all the problems I've gained in the last 6months, although I have anxiety medications (lorazepam), they obviously arent the type of things that can be used daily or even frequently if you want to avoid having the nightmare of benzodiazepine withdrawal, which I already have the pleasure to experience opioid withdrawal. I also refuse to take antidepressants as a result of being scared of side effects and screwing up my brain, as they have a wide range of side effects. I often burst into tears when I think about what my life has become.

    This forum is the only thing that has given me hope in my situation over the last few months, but god damn it is so hard at times.

    Any and all feedback is appreciated, as long as its not negative!
     
  2. Teri92

    Teri92 New Member

    Joined:
    Mar 10, 2014
    Messages:
    13
    Helpfuls Received:
    0
    My word. My thoughts are with you. I truly am sorry to hear your horrid experiances with not only pilonidal but your other conditions, and what it has done to you.

    My case of pilonidal is mild but causing me much anxiety and sometimes what feels like mini bouts of depression, so I can't begin to imagine what you're going through.

    I've noticed that posting anywhere online and just letting it out slightly helps psychologically, so hopefully you're feeling slightly better now that you've let it out.

    Good luck with everything
     
  3. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    thank you for your response Teri92. It really is a hard thing to go through at this age, I miss being my old motivated and generally happy self... I want to go back so bad. Everything put on hold as a result, and although none of these conditions are necessarily going to kill me or extremely life threatening (my heart goes out to those with problems of that nature, I don't even think I'd be able to push myself to live through something of that extent with how I am already ), I can't stand the idea of having to wait potentially years to finally be comfortable and pain free again.

    I definately agree about the bouts of depression, feels like its something that just comes with the territory of being a pilonidal sufferer. This potential excruciating pain that you could be forced to go through at any time, that is so easy to vividly remember due to it being such a trauma when it first happens. Its okay when you distract yourself as best you can, but at the times when you start to think about everything.... it gets rough. I wish I didn't become such a pessimist/disbeliever from the suffering.

    I wish the absolute best of luck and the soonest possible relief from the anxiety and depression, and your pilonidal, my god I know it first hand and its crippling... I always think that theres hopefully a reason to why we have to endure these things, to grow, or evolve... or something like that.
     
  4. ellysparkles

    ellysparkles Very Helpful

    Joined:
    Feb 22, 2014
    Messages:
    382
    Helpfuls Received:
    35
    Location (Country):
    USA
    I'm so sorry you have to deal all these health issues as such a young age. I know having pilonidal disease takes it tolls on you mentally. But there is some good news, this forum has a lot of people who are going through what you are, or have dealt with what your going through. We're here to encourage you and support you. This forum has def. calmed my anxiety from what it was when I first started researching pilonidal surgeries. Sending you some good thoughts.
     
    Melbourne_Mum found this helpful.
  5. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    yeah, the nightmare I was in when I first began searching the surgeries up via google.... ugh. Life's rough now but back then was full on panic mode until I came across this godsend of a website.

    Thank you for your response elleysparkles, I appreciate it a lot.
     
  6. Teri92

    Teri92 New Member

    Joined:
    Mar 10, 2014
    Messages:
    13
    Helpfuls Received:
    0
    When some people have so much hope and courage on here when explaining their horrid experiences with this disease is so great to see, and it has definitely made me more optimistic about this whole thing. Like yourself, I try to forget about the whole thing, but when it creeps into your mind you can't help but feel so down about the whole situation and start to play the "why me?!" game!

    Like its been said many times on here, this site helps relieve any anxiety. Just read success stories on here and you're sure to be uplifted!
     
  7. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    ugh. Bad news kinda.... Although I meet a surgeon who I have heard has successfully done pilonidal surgeries/is knowledgable in the disease next tuesday (early, like 8am or something crazy heh) something concerning started happening today.

    The main pain i usually experience from not having infection and just the current typically inflamed cyst is that the underside of my tailbone hurts, and it can be difficult when sitting for long periods of time at all. It mainly begins to become painful if I sit and am not on a coccyx cushion for amounts of time ranging between 20 minutes on uncomfortable seats, an hour maybe if comfortable.

    Today above my sinus, i have been pressing around a bit to see if there was any pain, I felt a pinching style feeling when pressing above it in various spots and it would be a pain that would go away within a second or 2 of pressing on it but it would be actually somewhat uncomfortable, generally alarming because I immediately kinda begin to freak out at any change at all with my cysts pain, or condition in any way, as it scares me that it is going to be infected.

    Hopefully this doesn't progress into anything like having to get a lancing again.. god damn these freak out times
     
  8. Kevin B

    Kevin B New Member

    Joined:
    Mar 20, 2014
    Messages:
    5
    Helpfuls Received:
    0
    Hey Kurt,

    Hang in there and try not to freak out (easier said than done). This thing is scary as hell but there are thousands of people who have gone or are going through this thing....including me. Some cases are worse than others, but there are cures for it through surgery. There are really 3 different viable options. 1. Excision Open procedure. 2 Excision Closed Procedure and 3. Cleft Lift procedure. Read about them but try to focus on the cleft lift. When I was lanced, I was referred to a surgeon that told me I would have to have an excision with an open healing. That procedure would require me to have an open wound that would require packing the wound 2-3 times per day for 6-8 weeks. Not knowing any better, I scheduled the procedure, but quickly cancelled after reading about the open procedure. There was no way I would be able to mentally handle that recovery process. That's when I read about the cleft lift (a closed procedure with a 3-4 week recovery) and sought out a surgeon that performs them (Jordy Sacksner in Michigan). My consultation was amazing. He indicated that given my particulars (no pits or other sinus openings and shape of my cleft), I might not need surgery and that I would be re-evaluated in about 3 weeks. At that time if I haven't recovered well, or if I have a flare up before...he would schedule me for the lift. I went from complete despair to near jubilation. Hopefully I won't need it but if I do...I know I will be able to recover quickly.
    All cases are different but I urge you to talk to your surgeon about this procedure. If he doesn't do them...try to get a consult with somebody who does. Canada is tough finding docs to do this but I think there are docs in Minnesota. Maybe that is an option. Look for the hall of fame docs on this website.
    I hope this helps. Just know that you are not alone.
     
  9. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    hey Kevin thanks for response. I definately have looked into the cleft lift, and every other procedure available for this surgery. Unfortunately, from research I've gathered no one specializes it in this city/country. I think there is potentially one in Ontario, that I plan to look into further if I don't feel confident in the surgeon im meeting. I'm honestly fine giving open excision surgery a chance, as I have went through some pretty ridiculous stuff pain wise and literally shrug it off due to a very high pain threshold. Unfortunately, this is also what caused my Pilonidal to get ever so bad before I got it dealt with on its first infection, literally went like 5days unable to walk without pain with pain increasing just assuming I "did something to my tailbone" lol. If I don't like the surgeon though and he does not seem confident ( although I have heard good things, someone on this site in fact that said they had surgery done by same person and that he was a good candidate ) then I will be looking into surgeons for something more specific to my wanting. The only reason for this is because financially I would like to not put more stress on my family than necessary, which would absolutely be the result if I were to go into the states to get the procedure. Honestly I figured if im going to get the cleft lift I might as well call Bascom up to get him to do it himself, as its gonna cost hella-money anyway, might as well get it done right the first time lol.

    Thank you very much for your response, and best of luck to you too with either not having surgery at all, or getting your cleft lift. I've heard almost entirely good things about the cleft lift so if it is necessary that it happens you'll be great im sure ! :)
     
  10. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    I first and foremost want to say I commend anyone dealing with severe chronic pain or any worse health problems that is basically in the same circumstance and mindset that I am in, and that I pray for nothing more than people like you and me to get the attention and help we deserve, and the lives we deserve.

    I am still dealing with this problem, no surgeries yet, just many many tests as it turns out the cause of my pain isn't necessarily the severe inflammation of the pilonidal cyst I have, and I also should start off by saying I have not had a flare up again yet.

    The severe amount of pain I seem to have on a daily basis is coming from basically under my tailbone, and it is so bad that I cannot sit for more than a short period of time (WITH a $80 coccyx cushion) not to mention strong narcotic pain medication which I am prescribed now, Percocet 5mg to be specific. I had recently (last friday) a bone scan done as to get closer to figuring out what the cause of this severe pain is, as it is still unknown 7months later after it began shortly after my first and only pilonidal flare up. I am writing this a close-to-last resort as I am at the point where I almost called a suicide prevention line tonight. I have become so unhappy with my health problems and severe, what I'd call chronic (7months now and counting) physical pain, and general limitness of my life and ability to do things that I have been contemplating again the idea of giving up. I just don't know what to do, I wake up in the morning and I just do not want to get out of bed, I just don't want to wake up.

    My "situation" seems to be worsened by living in Canada. The wait times between appointments ( which are relatively not far apart, as I am checked on by my GP every 3-4 weeks with copious amounts of other appointments for tests and consults to deal with other health problems as previously mentioned such as my as-of-late severe anxiety, and my terribly uncomfortable temporomandibular joint disorder, as well as many other physical symptoms I get these days.
     
    Last edited: Nov 20, 2014
  11. girl123

    girl123 New Member

    Joined:
    Feb 16, 2014
    Messages:
    34
    Helpfuls Received:
    0
    Hello fellow pilonidal sufferer. Boy! Can I ever relate to your depression. I won't got into my whole story but mine happened weeks after I gave birth to my first born and of course affected how I could take care of her and I'm sure you can only imagine the depression I feel :( worst part is everyone around us never understands because hey if we're not dying we're not suffering right? Urgh. So stressful!

    I am from Alberta and am currently recovering from an open wound excision and doing my best to stay positive but I'm entering month three and it's very frustrating and taking over my life! I am already planning my next surgery ( not to be a downer but just preparing myself for reality) haha. WHICH leads me to why I am answering you!

    I will never do this Lon process again so next time I'm getting cleft lift. There IS a doctor in Canada who is in Surrey BC. Dr. Jean Lauzon 604-538-8015. Here's the deal: you pay out of pocket and have to ask your province to reimburse you. You would have to fly down for the consult (525) and then back for the surgery ( cost I haven't found out yet) now the doc does expect you to stay in town for a MONTH. So pretty health commitment.

    I dug some more and called dr.bascom in Oregon! Surgery for all fees would be approx 9,000 US dollars. He only expects you to stay a week and can do a consult over the phone. Which I'm going tondo with him this week to get an opinion on my wound healing etc. from what I can tell it May actually be cheaper to go to the states!

    Some food for thought, in the meantime lets both work on our mental health ok ;)
     
  12. rkatt

    rkatt New Member

    Joined:
    Mar 12, 2014
    Messages:
    57
    Helpfuls Received:
    4
    Location (Country):
    USA
    I don't think I ever saw you mention this -- but are you taking any anti-inflammatories at all? like any NSAIDs? They help immensely with both pain and the swelling. Since my surgery I am taking 600 mg every 6 hours while awake, but will wean myself off of it as my incision closes.
     
  13. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    yeah as I have multiple pain conditions effecting me I have to take percocet 5mg daily, which is 5mg oxycodone / 350 mg acetaminophen, the tylenol portion being a NSAID. I remember when it was infected I was popping advils and tylenols in somewhat large dosages every few hours just to get through how severe the pain was as I was working a physical job at the time. God what a nightmare that was.
     
  14. rkatt

    rkatt New Member

    Joined:
    Mar 12, 2014
    Messages:
    57
    Helpfuls Received:
    4
    Location (Country):
    USA
    I'm sorry to hear that, but thought I'd clarify that Tylenol is not an NSAID. Stuff like Advil or Aspirin are though.. (unless there's some random branch of Tylenol that does contain the NSAID)... anyway I really hope you find a good solution for your issue.. :(
     
  15. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    thanks i appreciate it and yea youre right thats odd doctors have always said to me take a nsaid like tylenol or ibuprofen... but yea no I have advil and do find it does help a lot thanks again
     
  16. postiore

    postiore New Member

    Joined:
    Jan 16, 2014
    Messages:
    15
    Helpfuls Received:
    0
    Sorry to hear about your health issues :( I have more than one health issue myself and I think I can relate to what it's like to be overwhelmed by in all...I think many on here can. It really sounds like the tailbone issue will be resolved with surgery. In the meantime, you need to get it lanced any time it is flared up. Go to a different person if your first experience was bad. I had to have a bunch of lancing and there is indeed some pain, but with the local anaesthetic it was tolerable and I was much better off having it drained.

    It sounds like you really need surgery for it. If you go for the open wound surgery, you will have a longer healing time, but otherwise I think the negativity surrounding open wound surgery is blown out of proportion on this site. My understanding is that the majority of people who get it don't have problems. If you really want the cleft lift then go for it but don't think that is your one and only option. You can discuss it with your doctor and ask them to learn about it maybe.
     
  17. Kurt M

    Kurt M New Member

    Joined:
    Nov 29, 2013
    Messages:
    18
    Helpfuls Received:
    1
    Location (Country):
    Canada
    thanks for reply man. seriously god damn overwhelmed... it sucks. Takes a really different kind of day for me to even get through it without crying.

    Got an open wound surgery on my pilonidal coming up towards the end of this summer/in the fall sometime.... so worried about it too. doesn't help I have generalized anxiety disorder as well.... I just hate that I can't find people in my life who have it anywhere near how my life is. I think about all the time wasted... and whats yet to come. Haven't even got to live yet, only 18 and had just got out of highschool for 2months before the first serious flare up. I try to not even think about what the surgery wound will be like, given the fact that the infection got so bad first time around that I couldn't walk without extreme pain, and the lancing was just insane. I guess it depends how big the infection is, the local anaesthetic helps. For me sadly it didn't.. and it was the scariest most excruciating pain of my life even having my appendix fail inside me and rupture before doctors even knew what was wrong. I hate doctors, mainly because I haven't really met one thats living harder than I am right now... and I just hate it. I hate having to convince someone how serious my situation is. Chronic pain to go with the extreme anxiety disorder makes it so much worse than things even are... but it makes it to the point I can't function. I'm a mess.

    I've also just spent 8 hours in the emergency room last night, as I have a weird red bump that hurts like hell when i touch it on the inside of my leg around the groin area. So awesome to have to go again for another extremely embarassing visit, just to find out they don't really know what it is and send me off with some anti-biotics, of which my GP (the doctor I trust most) reccomended against me starting the course due to the fact I've taken 7 courses in less than a years time. All accompanied by slight opiate withdrawal (not nearly as bad as full blown cold turkey, but it was a med I had daily consumption of for over 8months), due to stopping with my extended release pain medication. So now I basically feel like I'm getting a pilonidal on the inside of my leg, hence the emergency visit, doesn't help with the cold sweats from either the withdrawal or potential feverish temperature, making things generally harder to determine.

    Also just found out I've got relatively high blood pressure, something like 140/80, which is way better though than the in-store BP check that showed me at 150/125 (see someone TODAY type BP)

    I dunno man. I just lose hope constantly. I have good days and then my health takes a turn for the worse like the last few days, and I just go back to square 1 where im basically suicidal but too scared to do it so I continue on with my suffering, knowing all the more suffering yet to come... I wish this didn't all make me such a negative person... I hate that I'd trade my life and do anything to have nearly anyone else I know of's life... The normal average person doesn't know how good they have it. I hate that im such a self pitying worry wart as well... but its just what I've become... I meet with someone for cognitive behavioural therapy next month... mainly because I've accepted I need proffesional mental help to get me to a point where I feel like I will even be around to see the coming year.

    Sorry to bump post yet another extremely negative post in my extremely negative life story. It helps sometimes.
     
  18. sl1992

    sl1992 Helpful

    Joined:
    Jun 1, 2014
    Messages:
    34
    Helpfuls Received:
    12
    Location (Country):
    New Jersey, USA
    You've probably heard this advice before, but I would really suggest the cleft lift over the open wound excision surgery, I've had both and open wound excision and the cleft lift, and the open wound excision took way longer to heal and for me it had quite a few complications (took 3 years to heal and when it did the sinuses recurred again). I know there's a few threads around here on cleft lift surgeons in canada, maybe there is someone close to your area? And I'm also not saying that the open wound excision doesn't work in most cases, its a possibility that I might just be an outlier. In general open wound excision recovery time is 8 weeks and cleft lift is about 2-3 weeks, and in my personal experience open wound excision is not the way to go.

    If you must go the route of open wound excision surgery, then I would make sure your surgeon catches ALL of the tissue (my surgeon for open wound excision told me he was careful to catch all of it, but the second surgeon I went to for the cleft lift surgery took one quick look at the area and found a pit that the first surgery missed, close to the anus, this was most likely the cause of my recurrence).

    If you have any questions please feel free to ask! I also understand how draining this is (no pun intended) and how depressing one can feel with this terrible illness, and the anxiety that comes along with each doc visit, if you need anyone to talk to feel free to message.
     
  19. Brandonw

    Brandonw Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    412
    Helpfuls Received:
    29
    Hey there real sorry to hear about all of this. Its an extremely difficult situation and can be life changing at times. We are all here to help. If you have questions il try to answer them to the best of my knowledge. Its so hard to stay positive at times like these. Just keep going one day at a time and hopefully you can get things moving along.
     
  20. meganmegan

    meganmegan Very Helpful

    Joined:
    May 21, 2013
    Messages:
    140
    Helpfuls Received:
    22
    Location (Country):
    Canada
    Hello fellow Canadian! (Halifax, NS here)

    Your story sounds tragic, and I feel terrible hearing about it.
    As far as surgeries, people simply wont understand that there are no cleft lift procedures done in Canada.
    We take what we get- it's free. We shut up about it and move on.

    So yes, I to had an open wound method of surgery.
    I got very lucky- (All I hear about around here are all these facts about "It doesn't work, you have to get a cleft lift" or, "open wound is the worst type- it's barbaric" which will naturally make you weak in the knees thinking about)
    My case wasn't all that bad. My wound was only about 2" in length, 1" in width, and 1" in depth.
    I liked to explain it to people as "You could probably fit a dinky car in there just perfectly"
    And I had no complications- My wound closed up COMPLETELY in 5-6 weeks.
    I had a VON nurse enter my apartment once every single day until I was healed for the packing changes, and wound cleanings.
     
    Kurt M found this helpful.

Share This Page