New here, first flare up at 27?

Discussion in 'Pilonidal Discussions' started by Noble1, Feb 21, 2016.

  1. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    Hey everyone,

    I'm very lucky to have found this site. I'm a 27 year old male that had my first ever flare up in January 2016. Went on a winter camping trip in Kentucky, camped in the cold and noticed a cyst next to a dimple on my left buttocks. Self-diagnosed myself, looked in the mirror and saw 3 dimples/holes on my natal cleft. Started to freak out, then scheduled an appointment with a dermatologist, who promptly told me that this was a serious disease that "is a general surgery issue". She prescribed two antibiotics, which may or may not have helped (I took the full course at regular times). The cyst got to be the size of a grape, and was IMMENSELY tender and painful. Probably didn't help that I poked at it and bumped into it by sitting down on hard surfaces. I got really depressed and started searching for cures relentlessly until I found a thread on here that gave me a homeopathic "cure" for the pain. I used a hot rag on top of castor oil and gauze on the cyst, then followed up with a vinegar/baking soda paste. Thinking it was all in vain, and that this cyst was going to have to be surgically removed, I was surprised when I saw whitish/yellow drainage ooze out of my topmost sinuses (right next to the cyst). I gently squeezed out what I could, and felt 90-95% BETTER.


    My physical and emotional well-being greatly increased, I started going to the gym again (hot tub really helps too) Been a few weeks now, and I've been exfoliating the area religiously in the shower, and I bought a coccyx cushion for my home office. I feel 95% better.

    However, I am still worried that without proper surgery, this will just keep coming back to haunt me at the most inopportune times. I just don't want to risk travelling abroad or on a motorcycle trip when this flares up miles from home. I'd really appreciate any guidance on this matter, which I've narrowed down by lurking on here for a few months:

    Option #1: Homeopathic: Keep using the coccyx cushion (better for you anyway), keep the crack clean, maybe get a bikini wax every once in a while (although I'm worried about ingrown hairs afterwards) and do the castor oil trick whenever the cyst comes back.

    Option #2: Surgery: Schedule an appointment with Dr. Dvorak in Lexington, KY (also discovered him on this forum). See what he recommends for my particular case and get surgery before this summer, so I can actually enjoy most of it. I'm a little unsure about my case since most people here develop pilonidal cysts and sinuses in their teens, and not their late twenties. I've also noticed that most people here would wait several years before they got surgery. Am I being too hasty on this?

    Any help would be greatly appreciated.

    -Noble
     
  2. kittygirl

    kittygirl Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    510
    Helpfuls Received:
    88
    Location (Country):
    USA
    cysts tend to happen earlier but some of don't get them until later, I didn't have my first until I was 32...and waiting isn't a good idea, the longer you wait, the more it could flare up...and each time it flares up, the infection could be making tunnels underneath your skin, you look fine from the outside but you have tree roots underneath, we had one user where it dug into the thigh! I had the cleft lift done after one flare up and I don't regret it one bit, one surgery and done is way better!
     
    Noble1 and Tonster found this helpful.
  3. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    So, when they do a cleft lift, they remove/clean all the tunnels (sinuses?) and they spread your cheeks apart so you are less likely to get cysts in the future? I'm going to call Dr. Dvorak today and schedule an appointment. How long did it take you to heal up after your surgery?
     
  4. kittygirl

    kittygirl Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    510
    Helpfuls Received:
    88
    Location (Country):
    USA
    basically they remove a cut out section while taking out the pilonidal area then shift the skin out of the problem area thus fixing the problem....I was a problem healer since I had minor complications but most are good to go in about a month.....
     
  5. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    Gotcha. I'm a teacher, so I'm doing about 70% standing, 30% sitting. Without rushing, how long would it take to be in working shape? I can understand not going to the gym hardcore for a month, but I really don't want to wait until summer to get my surgery if I'll have to take more that 3 days off work. I hate being away from my kids any longer than that.

    Also, this question is hard to answer since you probably have a different insurance provider: how much did your insurance cover for the surgery? (Sorry for a million questions. I just want to get to this over and done with...)
     
  6. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    Oh, I scheduled my appointment for next Tuesday with Dr. Dvorak (he is one of the few in Kentucky that do cleft lift). Aside from worrying about healing after the surgery, I am concerned that since this is my first flare up, he might recommend just lancing and draining the cyst, and seeing what happens from there. If I had to put my pain and discomfort on a scale based on what I've seen on the forums, I'm like a 3 or 4 out of 10. The worst part about the flare ups is sitting; My posture and lower back are fairly sore from awkwardly getting into my car, or trying to just sit down and read a book. Oh, and thanks again for being so helpful on this!
     
  7. kittygirl

    kittygirl Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    510
    Helpfuls Received:
    88
    Location (Country):
    USA
    I would think you would be fine with teaching but I would at least take a week off if you can, you're going to be hurting a bit possibly and or loopy from pain meds....it usually is a touch and go kinda thing with the sitting, you will start out trying to sit a little bit then stopping when it hurts, it'll only maybe be a few minutes at first then gradually working up to more as time goes on, it took me about three weeks to start to feel comfortable sitting back....a coccyx cushion or a tush cush will help out with sitting somewhat though and the coccyx cushion and or tush cush will help you to sit for the time being too....

    as far as insurance, I used to be under Blue Shield/Cross, I was to pay around $3,500 which my in laws and my parents helped out with but I can't remember what the insurance paid, my father in law said the insurance didn't pay out well compared to what his insurance does though....BS/Cross never seemed to pay out well though, I'm on Kaiser/Medi-Cal now and I generally don't pay for normal visits...

    as far as your visit with the surgeon, the surgeon will probably want you to get it lanced then wait about a month for the infection to leave, my surgeon had me wait about a month after my lancing for infection to be all gone....and my surgeon gave me two options, wait and see or go ahead with the surgery, I chose go ahead with surgery, I didn't want this again....
     
  8. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    FOLLOW UP:

    Visited Dr. Dvorak (Colorectal Surgical and Gastroenterology Associates in Lexington, KY) today and he recommends the marsupialization procedure instead of natal cleft for my case. He said that he's done hundreds of cases, and that mine is not serious enough for cleft lift. I guess that I need to trust his judgement, though. I was a little frustrated because it seems that the cleft lift is the absolute best option for most people, and that the healing times are shorter (unless I am mistaken). The doctor had really good bedside manner, and he even said that with the size and scope of my procedure that I could get the surgery on Friday, rest all weekend and be back at work (teaching) by Monday. The biggest issues is just changing out the dressings 3x a day, and keeping the area clean. Luckily, I scheduled my surgery for March 25, which is the Friday before Spring Break, so I'll have 10 days to try and heal the best I can, finish some reading watch movies the whole time.

    I guess this is a total "1st world problem" but I really want to be all healed up from this by the end of May so I can travel a little bit on summer break.

    Kitty- He said that the first round of antibiotics and the homeopathic draining that I did last month made the infection go away for now, and that if it stays that way, I should be good to go on the surgery.

    My biggest worry is worrying; I feel like this will go on forever, that it won't go as planned and I will just have another flare up after this surgery. The doctor seemed so nonplussed by the whole thing. Like it was no big deal and that he's done it hundreds of times. Guess we'll just have to see...
     
  9. kittygirl

    kittygirl Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    510
    Helpfuls Received:
    88
    Location (Country):
    USA
    it shouldn't matter how serious your case looks, you should be allowed a cleft lift if you want one...like I said before, I had only one flare up, my surgeon said wait and see or cleft lift....the cleft lift is the end of all this for most of us, the "seriousness" of your prior cyst shouldn't matter....

    edit: I was just looking at the surgery options page and he means open, don't let him to do open! open can mean months and months of healing as the hole left closes up from the bottom of the hole to the top.....

    http://www.pilonidal.org/treatments/excision-treatments/

    the last part of open mentions Marsupializaton... "An additional technique called “Marsupializaton” is also sometimes used (the edges of the open wound are stitched all the way around like a button hole) to keep the wound from closing too quickly. This technique speeds up healing time by several weeks."
     
    Last edited: Mar 2, 2016
    Noble1 found this helpful.
  10. LILLY

    LILLY Very Helpful

    Joined:
    May 17, 2012
    Messages:
    1,116
    Helpfuls Received:
    186
    Location (Country):
    Maryland, US
    The worst thing you can do is rush into surgery without looking into your options. What is your current condition?
     
    Noble1 found this helpful.
  11. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    As per my previous post, I had my first ever flare up on January 25th 2016. Went on a camping trip, skipped a shower, did a lot of hiking and sweating with thermal underwear, (which I hardly ever wear). The next day, I noticed a small lump as well as one major sinus and 3 dimples beneath it. I kept prodding the cyst/abscess until it got really swollen and inflamed. It hurt to sit, or put pressure on it. I scrambled for information, found these forums and realized it was pilonidal disease. I waited about a week with it like that, and went to a dermatologist, she gave me some antibiotics and drained it with castor oil and a heat compress. That felt amazing.

    Anyway, that was in February. Now I feel 95 to 98%. When it was the most swollen I was at a 5 or 6 out of 10 in pain. I am using my coccyx cushion at home, I am working with no issues at all. I'm still weightlifting and running. I clean the area twice a day religiously. It hasn't drained or "spotted" in over a week now.

    Dr. Dvorak asked if I was in any pain and I said no. He noticed that the abscess was barely swollen, but that these things can lay dormant for years and years. He wants to do marsupialization. (Which after more research, seems like the wound closes up in 2.5 to 3 weeks) Still not excited about having a gaping slit on my lower back/crack...

    Which leads me to a crossroads:
    1.) I get the surgery on March 25, heal up at home for 10 days, get back to work, follow up every week with the surgeon to check the wound and hopefully be back to normal in 6-8 weeks.

    OR

    2.) I keep coping with any flare ups that may arise, do the castor oil drain, get antibiotics if necessary. Now that I know what it is, if I get a second really bad flare up, I can always go back and schedule a surgery.

    From everyone I've seen on here, waiting is just a ticking time bomb. On the other hand I feel relatively great right now and my life has not been severely affected... yet.

    What are your thoughts?
     
  12. john matrix

    john matrix Very Helpful

    Joined:
    Feb 24, 2016
    Messages:
    20
    Helpfuls Received:
    19
    You never know what the future holds. Your pilonidal disease could stay dormant, or, more likely, it could claim more tissue as the tunnels grow and the cysts deepen. A few weeks of recovery is a small price to pay, especially when you factor the constant anxiety of living with the disease. When you have pilonidal disease, your mind brews a million little anxieties—the fear of a flare up, of an embarrassing spot on your pants, of someone else noticing the smell of the discharge. The time I spent living with the disease was marred by so much wasted mental energy. How worthwhile is it to live with all of that, especially when you know there is a high probability of a large flareup—correctable only by surgery—waiting for you at the end of the tunnel?
     
    Noble1 found this helpful.
  13. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    http://www.afrh.fr/web-content/docu...s pilonidal sinus HS co-occuring Abramson.pdf

    I found this article (from 1960) about the procedure. They show a minor and severe case. Mine are all close together and in line, so I think mine would be like that, assuming I keep it clean. Looks like the wound healed up completely by the 19th day.

    I dunno. I really am 50/50 on surgery or just waiting it out. Is it possible for this to just go away?
     
  14. kittygirl

    kittygirl Very Helpful

    Joined:
    Jul 16, 2013
    Messages:
    510
    Helpfuls Received:
    88
    Location (Country):
    USA
    I don't click links I'm not sure of so no clicky for me but the fact that it's from 1960 is not good, my surgeon said open and closed shouldn't even be done anymore, they don't work....I would go back to your surgeon and ask that he schedules you for the cleft lift instead, tell him you don't feel comfortable with the other one and you really want the cleft lift.....besides, open means you need to have packing changes several times a day, they are hard I've heard to do on your own and scheduling a nurse to come around your teaching schedule wouldn't be easy.....with the cleft lift, you just need a simple bandage covering for a bit that usually only needs changing once a day but that's whenever and it doesn't need to be there for more than a week or two as long as later drainage doesn't happen....

    as far as one and done with cysts, it happens verrrrrrrrry rarely, some never get it again but most will get this again and again until surgery....
     
    Last edited: Mar 2, 2016
  15. Noble1

    Noble1 New Member

    Joined:
    Feb 17, 2016
    Messages:
    16
    Helpfuls Received:
    0
    That's true. The last thing I want is to be travelling somewhere, or in a time of year when I can't take enough sick days to really get better. How long did you live with this before surgery?
     
  16. john matrix

    john matrix Very Helpful

    Joined:
    Feb 24, 2016
    Messages:
    20
    Helpfuls Received:
    19
    I first began noticing blood in early 2014, though I've had the pit that caused all of this for several years. I didn't do anything about it until late last year, when the symptoms ballooned and became an everyday affair. I dealt with regular discharges of blood and pus, an uncomfortable wet feeling in my anal cleft, and an awful odor. I attribute the increase in flare up severity to transitioning away from office work—I started a job last summer in the natural gas industry requiring me to spend long hours outdoors, often in high temperatures. The sweat and heat likely put my pilonidal situation into overdrive.

    From that flare up forward, my symptoms continually worsened other than a three week spell in January when I was symptom free. I'm fortunate in that my pilonidal disease did not cause me severe pain. I looked at surgery like this—no matter how much a procedure hurts or pauses my life in the short term, it is a temporary interruption that will, hopefully, alleviate the misery of pilonidal disease. I know there is no guarantee any procedure will work the first time, but I would rather be aggressive and put myself in the best position to leave the disease in the past.
     
    Noble1 and Tonster found this helpful.

Share This Page