New Guy Here, Need Some Advice...

Discussion in 'Pilonidal Discussions' started by B1993, Dec 29, 2015.

  1. B1993

    B1993 Helpful

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    First off, hello everyone!

    I wanted to give you guys a brief (hopefully brief, lol) description of my cyst history and I was wondering if you all could help me make the decision on getting surgery or not. I know the decision is ultimately mine but sometimes it is nice having others think with you.

    Anyway, I first discovered my cyst on October 2nd 2014 while doing sit-ups. I felt a weird pain by my tailbone and then it went away after like the 5th rep. I did not think anything of it and finished my workout. When I took my clothes off to shower is when I notice a rather bloody/watery spot in my underwear.

    I went to my primary doctor the next day and he gave me some antibiotics. I went back for a fallow up two weeks later and he recommended I do not get surgery. I then went to a surgeon in December 2014 and he also recommended against surgery as I told him the cyst has never caused me any pain really. He also claimed the risk of infection on surgery was roughly 40% with a recurrence rate of 40% (closed wound).

    I did not like those odds so I decided to live with it. Fast forward a year.....I have had no serious flare ups or drainage. Sometimes if I gently press on it a tiny dot of blood/watery looking stuff appears on the toilet paper. But that is rare.

    I would say the biggest the cyst ever has gotten was back in August when it was super hot and I was working long sweaty days in the shop. It was the size of maybe a half a stick of chap-stick. Right now I would guess it is marble size.

    It doesn't bother me too much, I still workout and run all the time, sitting for long periods of time is not too fun but then again my entire butt hurts when I sit to long. I can push on the cyst pretty hard and it doesn't hurt at all.

    Now on one hand I would like the cyst gone because it is annoying knowing it is there. On the other hand, I feel like the risks of surgery might be worse than having this thing. I have seen what some of you have gone through after surgery and it sounds absolutely horrific. Especially with going through all that and then having a cyst show back up a few months after.

    Anyway, sorry for the long read. I definitely did not keep that brief! I apologize for that. So I guess if you were in my shoes, would you opt for the surgery or just live with it?
     
  2. tyty501

    tyty501 Very Helpful

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    In all honesty, if it really isn't bothering you too much, I'd live with it.
    I've been through three surgeries now and it just seems like it's never ending.
    If you decide to go with a surgery, do the cleft lift.
    I've had all three (open, closed & cleft lift). The closed excision honestly shouldn't even be done, the success rates are low.
    Open excesion is hell on earth and not worth it.
    The cleft lift has been pretty smooth for me so far pain wise.
    I'm about 3 weeks post op, but I've already had some of the bottom stitches come undone so it could end up being another failed surgery (probably is with my luck).
    But yeah, if it's not bothering you or infected, I'd just live with it until it is.
     
  3. tyty501

    tyty501 Very Helpful

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    I also say if you do surgery, go with the cleft lift because out of the three, it has the best success rate.
     
  4. LILLY

    LILLY Very Helpful

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    At some point you will probably get tired of dealing with it. That's what decides it for most people.
     
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  5. Dr Immerman

    Dr Immerman Very Helpful

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    The previous posters are giving you good advice, and your evaluation of the dismal results with other operations is correct. However, in the right hands this is a fixable problem. If it is bothering you- find a surgeon with lots of experience, to do a cleft lift.
     
  6. krisrenee

    krisrenee Very Helpful

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    Idk but from what I find out, the longer you leave it alone, the deeper and bigger the cyst gets. I read that they can wrap around your tailbone/spine. One girl had part of her tailbone removed. I had mine like that for a couple years. I was really into exercise and when I'd do ab work on the floor, I'd get a strange lump a week or so later but it would always go away. Well in October I went for a 13 mile bike ride, and behold, it was back but this time it didn't go away. Went to dr and found out what it was. Two weeks later it abscessed badly. Erupted at home and get to go get it opened more and drained. My abscess had almost 2 cups worth of fluid in it. Nightmare. Once it abscesses the first time, more abscesses are likely to come for frequently. Everybody is different. Some people have sinus tracts that allow drainage to flow out without it ever becoming abscess. So idk. The thought of a cyst sitting inside of you doesn't seem like something you just want to deal with. I had the excision and my case was very simple. Surgery wasn't that big of a deal. I never got an infection. I had no post op pain or drainage. I had my sutures removed a week ago and I feel great. If all else fails and you get the excision, you can't go wrong with cleft lift. Not everyone will need a cleft lift because not everyone situation is the same. I know people who had one surgery (excision) and I talked to many Drs and nurses I work with about it and they have many testimonials of patients getting an excursion one time and years go by and those patients never have anymore problems. I know people personally as well. Some people get lanced once and never had a problem again. I'm talking older people. Years gone by. So it all depends on your personal case. Just know you're not alone.
     
  7. B1993

    B1993 Helpful

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    Thanks everyone for the words!

    krisrenee,
    I am also really into health/fitness. I workout a lot and love to run. Although even with a small cyst, (marble size currently) I never do an ab workout that puts pressure on my tailbone.
    I was wondering how soon after your surgery were you able to exercise again? To be honest, that is one of my biggest fears of getting surgery on the cyst because I can workout fine now, but I fear a surgery could possibly get infected or something and then I wont be able to exercise for a very long time.

    I will say working out is one of the things that seems to help my cyst stay small. Whenever I sweat a lot, the cyst seems to get smaller and it feels fantastic.
     
  8. krisrenee

    krisrenee Very Helpful

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    Yeah you're pretty smart not doing ab workouts on the floor. One of my fav ab workout was the boat pose. But that 13 mile bike ride really sent me over the edge.. Yeah I can definitely understand your fears about possible putting a pause in exercise if you get the surgery. I returned to light exercise 2-3 weeks post surgery. And I had a closed excision. I was told to lift nothing over 10 lbs just because it could rip the stitches. The day I got them removed he said I can resume exercise if I wish. Just keep pressure off of the area. Everybody has a different situation. You say your cyst is marble size. Is it closer to the surface of your skin or do you have to press down down it to get a feel? Mine seems to be deeper and on the side of my tailbone. Hard to sit when it would swell up. But once it calmed down, I wouldn't feel anything.
     
  9. krisrenee

    krisrenee Very Helpful

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    SeemED deeper lol I am claiming no more cyst lol
     
  10. such_is_life24

    such_is_life24 New Member

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    Has anyone tried implementing the coccyx cushion in their workouts? I was thinking about getting one for bench pressing.

    @OP: I feel the exact same way you do. I'm 50/50 on living with it, and getting surgery done to get it over with. However, my surgeon (which IMO was very unhelpful) did not recommend it, and my parents are against it as well. To me, pilonidal cysts are really unpredictable. I've had this issue since Fall 2013, and have also had no major flare ups until recently. This winter has really aggravated my cyst somehow.
     
  11. Tonster

    Tonster Very Helpful

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    My decision was based on the fact the surgery couldn't be worse the recurring excruciating pain and drainage was.. If it's draining then the wound is not healed... after years of flare ups... mine went through a phase of draining the clear red liquid (that's the good stuff Serous). That means no infection... but it's not healing.

    Mine was pretty big and complicated... but oozed Serous for about 6 months before it got critical (pain 8-9/10.. crawling around... crying)

    So flare ups for years... drained and dealt with it. Then the daily serous ooze for 6 months and two-three massive flare ups... had to be dealt with under ED.

    For me.... the absolute key there is... the day it stops oozing Serous.... you may have a infection.. it gets inflamed... reddish skin... and a few days later you might be lucky enough for the greeny/yellow ooze (Purulent) to drain.... if it doesn't drain... that's when you get it lanced.... and a month later after antibitotics you consider surgery when it's not infected... probably after a few flare ups
     
    Last edited: Jan 5, 2016
  12. krisrenee

    krisrenee Very Helpful

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    You are 100% correct.
     
  13. B1993

    B1993 Helpful

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    Kris,
    My cyst is close to the surface of the skin. You cant see it when looking in a mirror at all though, but if you touch the area you feel it. I can actually sort of "grab" the cyst with like a pinch between my thumb and pointer fingers. I usually do this everyday in the shower to monitor its size.

    such is life,
    The unpredictable is what really worries me about surgery. I kept telling myself that what if I get it removed and then it comes back as a complicated case like Tonster is dealing with. Right now I don't mind living with it as it is very mild for me, but at the same time it would be nice to have gone.
     
  14. krisrenee

    krisrenee Very Helpful

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    Oh okay. That's interesting. Maybe just go to doctor and see what he thinks? Is it in between your crack? I never knew I had a cyst. I just knew sometimes my tailbone with get a weird hard spot on the side and it would go away after a few days. Until one day it didn't go away. At least you know what you're dealing with. I didn't know what it was until it was too late. If the cyst is inside your crack like most people, then I can see your fear of making it worse because the natal cleft is a hard place to heal period because it's a deep damp place that gets little oxygen. If your cyst is closer to the top, then i wouldn't worry so much about surgery. You're aware of what it is and you pay close attention to it. So that's really good. If you one day get a really bad flare up and it abscesses, you'll definitely need surgery. Because abscesses in general anywhere on the body are recurrent if that hard scar tissue isn't removed. You never know. You might be a lucky one and escape an abscess. An abscess will really have you stuck in bed more than post surgery will. I didn't even feel like I had surgery. Maybe your doc can do an ultra sound on yah or something. Get medical advice. At the end of the day, you can always get second opinions from doctors. I would say see a rectal surgeon. They deal with these the most.
     
    Farid found this helpful.
  15. krisrenee

    krisrenee Very Helpful

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    But just know it'll be okay. Not everyone's stories are the same. I came on this side while I was laid up in bed with that terrible abscess. I was so afraid and hurting so bad. I didn't know what the next day would bring. One to find out I couldn't even walk one day. I was seriously so depressed for that entire week. And then reading all of the horrors on this forum. The pain from the lancing was all true. But all of the stuff after, I never had any problems or malfunctions. I'm 3 weeks post op and I still haven't had any malfunctions. I say that to let you know that your story isn't everybody else's story. Just know that these cysts can become dangerous issues if left alone too long. If a foreign thing inside of your body. And they grow. So just follow your gut and trust that it'll be for the best. I prayed for a good surgeon and that's exactly what I got.
     
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  16. B1993

    B1993 Helpful

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    The cyst is definitely towards the top of my crack, maybe like right where the crack starts or a tad lower. Its hard to be able to look back there and see but I am just going by how it feels.
    One of the biggest reasons I have for surgery is that I hate knowing I have a cyst there, which is definitely not part of the human body and it would be best to have it gone. Like you said, I am also afraid of what could happen if it is left alone for years and years, even if mine is not causing any issues (knock on wood).

    I might be leaning more towards surgery if I was out of college. I am 22 now and graduate next December, I have 6 classes left, I have 4 this winter and then 2 left for the summer or fall. So between school and work, finding time to get it cut out is conflicting.
     
  17. Baxter4321

    Baxter4321 Very Helpful

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    That's right about where my cyst was. If it's not giving you any problems right now, you could probably hold off until it does become an issue. Dealing with this thing and being in college sucks. There was more then one occasion when I would start a flare up over the weekend but I knew it couldn't be lanced yet so I would have to wait it out and see what happens and go try and sit through classes uncomfortably then finally after a couple days I would go to my last class for the week and then as soon as it let out drive myself to the doctor to get it taken care of. There were probably times I waited too long but after a lancing I knew driving would be tough cause it would be so hard to sit but I also didn't want to miss class so I would suffer all week. I waited until the spring semester was over then I went right for surgery, I couldn't sacrifice school. You just have to make the decision that's best for you!
     
  18. krisrenee

    krisrenee Very Helpful

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    You're 22.. Do you have insurance on your own or still under your parents? I'm 24 and still under my dads insurance. It's bittersweet my surgery needed to be done.. Better now than later when I have no insurance.
     
  19. B1993

    B1993 Helpful

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    I am still under my parents insurance which is nice. I had a cornea transplant in my right eye back in June and insurance covered like 99% of that.
    It seems like I just cant win when it comes to health issues. lol
     
  20. krisrenee

    krisrenee Very Helpful

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    Lol well you win when you're covered. I would've been living in fear of that abscess returning if I didn't have insurance and couldn't get the surgery. At least you are covered and can get good care.
     

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