A thank you, a story, and a "remedy" to try

Discussion in 'Pilonidal Discussions' started by Jon D, Feb 13, 2011.

  1. Jon D

    Jon D New Member

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    First off, let me just say thank you to all of the people out there sharing their stories, both the the good and the bad. I remember the first time I came across this site it was a tremendous amount of help and information that's not available to most people, so thank you. Because I've taken so much from this site, the forums, and the stories, I feel I should share my story and what I have done, if for nothing else, to attempt to give back.

    For those looking for the "remedy" I'll post that below so you can skip the story if you wish. I feel I should say here that I've been inflammation free for well over a year. I don't believe it's a cure, but it's cheap, there's no recovery time, and no embarrassment (jeez, I sound like I'm trying to sell snake oil [​IMG]). I would encourage you to read through my story, I think you will see why a year and a half is such a big success. I'm not trying to sell anything I swear.

    My Story: I've been dealing with this cyst for about 10 years now. My first occurrence with my cyst happened in back in 2001 when I was 20. I thought I had fallen down and bruised my tailbone, that is until it got worse and worse until it was the most excruciating pain I'd ever felt in my life. There was a point I think I almost passed out from the pain. I have an extremely high pain tolerance, I broke my arm as a kid, and had a severe ingrown toenail that required surgery and this was way worse than either. So those of you with kids/friends/spouses with this problem, they aren't being a wimp about it, it hurts.

    Anyway enough side tracking. I ended up going to a doctor when I couldn't take the pain anymore and I starting to think I was about to die. I don't think he knew exactly what it was, or if he did he didn't share the information with me. He ended up opening up the cyst and draining it on the spot. This, by the way, was hands down the single most embarrassing moment of my life, I'm still trying to fix the emotional damage [​IMG]. I walked out of the office with a second butt packed with gauze and a memory that I really wish I could repress. But I figured all was well and when it healed I should be good to go, right? (I think some of you see where this is headed).

    Wrong. After several weeks, maybe even a couple of months the wound created by our glorious all knowing medical establishment was pretty much healed and I was back to normal, for a few months. About six months after my first drainage my cyst came back, with a vengeance. Given my last experience with the doctor and the fact that it apparently didn't do any good, I decided to ride this one out. Probably not the best decision of my life but it was less painful and definitely less emotionally damaging. Eventually the cyst burst (with a little assistance), drained over the next few days and I was off and running again.

    To sum up the next several years, my cyst would flare up every 4 to 6 months burst, drain, heal, repeat, like clockwork. It got to the point where I would pick at he scab that would form over the hole so that it would be draining constantly and I would have to deal with the bursting aspect (gross, I know).

    Eventually I got a job where I had insurance coverage and I decided to inquire about surgery to rid me of this nightmare cycle of nasty. After 2 months of trying to get an appointment, my doc informed me that it was considered a cosmetic surgery (aka not covered) but if I had the money the surgery itself wasn't that big of a deal. If it's not readily apparent in my above statements I don't have a lot of love, nor trust for the medical establishment here in the states. I decided to do my own research, and that's when I came across this site. I read countless stories the various surgeries and the results. It was increasingly obvious to me that the surgery options were definitely not to be taken lightly. While I had a good boss, I was working a job that required a good amount of driving, climbing ladders and such, a 1 to 6, possibly 12 month recovery was just simply not an option. So, I resigned myself to just dealing with it for the rest of my life, it was a sad realization.

    Fast forward a year and half and 2 eruptions later. I was in the middle of yet another painful inflammation (6 months, like clockwork I'm telling you), and I started considering the surgery again. I wound up here reading more horror stories about year long recoveries only to have a relapse a few months after healing. After a lot of reading and looking for some sort of miracle non-surgical cure discovered in the past 6 months, all I could find was "either get the surgery or deal with it." Well somewhere in the 20th something page of a google search buried deep in a 200 page pdf (what else are you going to do while you sit around for 3 days waiting for that scene from aliens to occur from your back side?) I found something that worked for me (please read the remedy below, I'll detail what I found). Here I am about 18 months later without a single eruption or major flare up. My self confidence is coming back and for the first time in 10 years I'm not living with the fear of my cyst rearing it's ugly head. So, without further adieu...

    The Remedy: I'm under no false illusions that this is some sort of cure, my cyst is still there, and every once and while it makes itself known. I'm not a chemist or a doctor (but lets face it, your doctor can't reliably fix this problem either) and I can't tell you why this works for me, just that it does. What I can say is this; not only have I not had my cyst burst for a year and half, I have never gotten to that inflammation stage where I can't sit down without cowering in pain and I have had no drainage of my cyst, nothing, zero, zilch, nada. What does it take? 3 things, 1. Castor oil, and 2. Baking Soda, and 3. vinegar. Yes, that's it, $4 from your local shop and I've only used the Castor oil once in the very beginning.

    I wish I could give credit where credit is due but I don't remember where I read this. But, somewhere I read that people use castor oil on regular cysts to bring the crap to the surface and speed up the bursting process, which is why I originally used it. I was waiting on my cyst to burst and I wanted to get it over with. It actually didn't work as intended (it never burst, it just went into remission and was gone 3 days later!) but it's worth mentioning since it only cost a dollar and I can't discount that it had no effect plus it relieved the pain. The baking soda and vinegar came from some place where they said it decreased inflammation in boils. So here's what I did/do:

    1. Grab the castor oil and get it on a piece of gauze (warning: apparently the castor oil will stain cloth and such). Use a heating pad or what I did if you don't have one, put a washcloth soaked in water in the oven till it's hot. Lay down somewhere where you will be comfortable for about 15 minutes with your butt exposed. Place the castor oil gauze on the cyst then put the heating pad or the heated washcloth on the gauze and take a nap. 15-20 minutes later wash off the castor oil.

    2. Grab the vinegar (I use white wine vinegar) and baking soda. Mix a small amount of each together until it forms a sort of paste. The consistency doesn't really seem to matter. Spread the paste all over the cyst, be generous the mix is cheap. Leave it on for 15-20 minutes and then wash it off and be on your way.

    That's it, like I said before I only used the castor oil a few times the first time I did this. I have had that "oh no" moment (those dealing with this know the oh no moment) a couple of times when I sat down since I did this the first time. All I do now is the baking soda and vinegar thing twice a day, once in the morning and once and night, till the "oh no" goes away. It really does just reverse and go away in a couple days, I'm not pulling your leg here. I wanted to post this a long time ago but I wanted to make sure it wasn't some one time fluke before I did.

    In the interest of full disclosure I did make some lifestyle changes during this time frame. I've been vegetarian for about 2 and a half years now (though I did have a couple of flare ups after switching), I quit drinking, and I've lost 60ish pounds over the last 2 years. The weight loss mostly comes from the fact that I don't have to worry about aggravating my cyst by working out, which was a definitely cause of flare ups. I mention this because I can't be certain that they don't have something to do with my current situation (or lack there of!)

    But, I firmly believe in the baking soda/vinegar combo and I would encourage everyone suffering with this to give it a shot. I can't guarantee it will work for you, but the only thing you have to lose is about $4; oh and maybe a $15,000 bill from the hospital. And when it works you get to call your doctor an overpaid hack and tell him/her to get their pound of flesh from some other sucker, which is always a plus (unless you live in Canada, in which case just shake their hand and tell them to keep up the good work).

    Thanks for reading this, I hope it helps and good luck.
     
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  2. MaVeRiCk7

    MaVeRiCk7 Very Helpful

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    Glad to hear that it has worked out for you, I am unsure as to the fact that is this solution a temporary one? I can understand how embarrassing surgery can be and I have lost count on how many people have seen my backside its almost famous. There is a permanent surgery and a cure if you like well I call it a miracle as it has cured some people including me. The surgery is called a cleft lift that makes your cleft shallow enough to keep pilos out and better still there is no cyst/abscess or anything you just have to give it that big push and have surgery.

    In all cases it depends on your circumstances and your luck like you said with your remedy you cannot guarantee everyone will be cured by the cleft lift however it is the only known and successful cure out there. I was willing to take a risk and now I have been cured from a pilo that I have had for 3 years after 3 failed attempts until I had my cleft lift.
     
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  3. Pita82

    Pita82 Very Helpful

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    Who would've thought...
     
  4. adamt

    adamt New Member

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    Hi,
    I have had PS since Last July and had a flare up about one month ago, i have never taken antibiotics or surgery as i only realisesd i was PS this month, before i thought it was a sports injury

    Well i have been using heated castor oil packs for the last few weeks, which has soothed and calmed down the discomfort when sitting,
    but after reading this thread yesterday i started doing:
    Castor oil pack for 20 minutes
    then i used a paste of baking soda and white wine vinegar smearing on the sinus - let sit for 20 mins then clean off

    but on sunday i left the soda/vinegar paste on overnight till th morning as thought it would benefit me more - was that a mistake?

    my wife has just noticed that there are red dots on my bottom, she never noticed them before when applying the castor packs or paste,

    here is a photo of the red dots she just saw after the vinegar/soda paste:
    http://tinypic.com/r/2ebb95t/6

    Is this nornal when you have an infected sinus - my sinus was infected a few weeks ago, as i would wake with puss in underwear, but at the time had no idea why

    or is this due to this vinegar/baking soda paste?

    yesterday i also put some Manuka honey on my sinus as read it is helpful

    i know i shouldn't have done so many different things so close to each other, so will now have a few days doing nothing to the sinus and see what happens
     
  5. minnieNZ

    minnieNZ New Member

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    just read this thread and I too have suffered my PS for about ten years im now 26 and believe you me I have tried every remedy you can think of, some worked and kept the pilo at bay I think manuka honey was the best but like everything else the pilo was back, since Ive finally found out what I have (docters had know idea till this year) ive done research homework and read personal stories and the only way to beat this is surgery even though im scared and nervous I guess this is my last resort, each to their own and everyones different I guess.
     
  6. unique

    unique New Member

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    Hello, my boyfriend has 3 operations and the cyst is still here.... please tell my how long you put castor oil, baking soda and the vinegar ????? HELP !!!!!!
     
  7. whapo

    whapo New Member

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    Does anyone know if DMSO mixed with Castor Oil is a good idea? Should help the oil penetrate the skin, no?
     
  8. Eliz B

    Eliz B New Member

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    Wow. Thanks for this advice. I am 33 weeks pregnant and had been taking hot baths, sitting on a pillow, etc. and the pain was just horrific. I know it had to be drained, but I don't want to go through the whole surgery now, since I can't lie on my stomach and the baby may have a congenital heart defect, so we're being extra careful with her.
    Anyway, I took a hot bath (the cyst had been crusting over, eww) and then put castor oil on a gauze pad and left it on the cyst for about an hour. That was probably too long. But I took it off, wiped most of the oil off the cyst (ow) and went to bed. Every time I got up to go the bathroom, it was draining like crazy. I feel 10 times better this morning. It's still draining, actually, and the pain isn't totally gone, but at least it doesn't look like I'm growing a tail and I can actually move without gasping in pain.
    I'm going to the surgeon on Monday at least to make sure it's not infected now, but the self-draining was just a huge relief. Thanks!
     
  9. Liv2luv000

    Liv2luv000 New Member

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    Hi E - Did it end up coming back?
     
  10. Eliz B

    Eliz B New Member

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    So far, so good! Hasn't gotten inflamed or anything yet and it's been weeks. Technically, it's still "there," my doctor said, but it's very, very small and it's not bothering me at all. Seriously, it went from a good 2-inches+ in size to less than one-half of an inch after draining.
     
  11. ROB6ERT

    ROB6ERT Very Helpful

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    I WOULD NOT USE DMSO ON THIS. DMSO IS SUCH A GOOD CARRIER THAT IT CARRIES THINGS INTO YOUR BLOOD STREAM. I HAVE DONE ALOT OF RESEARCH ON DMSO AND USE IT, IT IS A GREAT PAIN RELIEVER BUT IF YOU HAVE ANY BACTERIA ON OR IN YOUR SKIN IT CAN CARRY IT INTO YOU BLOOD STREAM
     
  12. Renegade

    Renegade New Member

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    I have also started doing this, it helps a lot, within 3 days I had relief and been doing this for a week or so now. It definitively wont heal the cyst but can make it tolerable until a surgeon get rid of it.
     
  13. whodalolly

    whodalolly New Member

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    I can't tell you how blessed I felt to have discovered this forum. Who knew that such a pain in the butt, (literally) would generate others to want to talk about it and share their stories ? Jon, I must thank you with all my heart, for sharing yours about the castor oil. I had heard stories many years ago about it helping to bring on labour in pregnant women who were desperate to get things moving, but I had no idea of the almost magical topical effects that it had. A few months back, I made a choice to re-join the gym after a 10+ year hiatus, and about a month into my regimen, I noticed some great changes, and one not so great one. It was a Saturday morning when I went to sit down for my morning coffee, and I couldn't help but to notice what felt like a small bump by the base of my tailbone. I thought it odd, but didn't think much of it at the time as it wasn't causing any discomfort. In 2 days, the mass had doubled in size and was VERY painful. I could hardly sit or lay, and driving was a new task for me, as I couldn't put any pressure at all on the left side. My right hip had become so sore from favouring my left cheek, that I was sure I was going to need a chiropractor to realign my spine once I was able to sit properly again. I made an appointment to see my doctor on the Monday, but before going, I Googled my condition and was pretty certain that I knew what it was (and was horrified to read the treatments and how people can live with this for the rest of their lives) Upon examining my 'posterior', my doctor instantly diagnosed it as a Pilonidal Cyst. When asked what lifestyle changes I've made recently, I told her that I'm working out 3 times per week now at the gym, and she said "That's it ! You've most likely broken off or opened a hair follicle gland, and the sweat has made it's way in there and been trapped with the oils of your skin. This is the result" She set me up on a prescription and sent me on my way. I was able to manage going to work for the rest of the week (because I'm a martyr and wasn't going to let this thing beat me, even though I have a desk job ~ I just positioned myself in a way that put as little pressure 'down there' as possible) until Thursday night hit and I was fit to be tied. That's when I went online and found this forum, but most importantly, your story and remedy, Jon. My boss advised me to take the Friday off and do what I could to take care of myself, and that's exactly what I did. I purchased the castor oil, the gauze, the white wine vinegar and baking soda (a little more than $4.00 here in Canada, but SO worth the cost) I took the above advise, doused the gauze with the oil, heated up a wet washcloth, and played Candy Crush for the next 20 minutes while laying on my belly. After wiping it off, I followed it up with the white wine vinegar and baking soda concoction, and settled in to beat the next level of Candy Crush (lol) I only repeated the sequence twice, and for the next couple of days, kept the gauze soaked with castor oil right on the spot. (I made sure to wear pants that I didn't really care about because as Jon mentioned, the oil does stain) I am skeptical that the prescription did a whole lot to help me, but I am CONVINCED that the castor oil did the healing. As ridiculous as this may sound, my boyfriend and I took 'progress' photos, and the cyst went from being the size of an orange wedge, to now being the size of a pea, in less than a week. There was no 'uh-oh' moment for me, as there was never any discharge from it...it just simply.....deflated ! I have no discomfort whatsoever today although I know and feel that it is still there. I have not stopped my gym regimen, but after showering now, I rub the area with a small amount of the castor oil, just as a precaution.

    To any skeptics out there: By the time my cyst got to the size it did, I was in tears from the pain, and the fear of having to get it lanced. I was desperate for an alternative, and had nothing to lose by trying this method. It was a godsend to me, and I couldn't wait to sign myself up to send this letter of thanks to Jon, and testimonial that his 'remedy' DOES work.
    Happy sitting everyone :)
     
  14. Robert Eden

    Robert Eden Very Helpful

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    Jon,

    Glad to hear you found something that works for you.

    I do have some questions about your doctor's statement that surgery wouldn't be covered because it was considered a "cosmetic" procedure.

    Where are you? U.S.?
    Did you get an opinion from another doctor?
    Did you check with your insurance company?

    I've read posts in the forum that this problem was solved ages ago and now it's covered w/o question. I know I didn't have any problems getting my surgery covered.

    Robert
     
  15. Travis

    Travis New Member

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    I wanted to chime in with this and tell my story, with relief related to the castor oil treatment.

    My pilonidal cyst started acting up a little over 6 years ago, in which I wondered wtf was going on and it ended up creating a 'wart' at the top of my butt crack on one side. It leaked the usual stuff that comes out when you get it lanced, but it would come out very slowly.

    Surgery costs as an uninsured patient kept me from going that route.

    So I swapped jobs (went from self-employment to working for the man), and it completely went away -- the 'wart' flattened out. I assumed it was stress-related. This was 3 years or so into dealing with it.

    Another 3 years later, it's back. And it's been back for about 6 months. During these past 6 months, it stayed swollen and painful. I would keep a band-aid on the 'wart' this time, and it provided complete relief, but the adhesive on band-aids eventually cause it to itch like there is no other.

    So about a week ago, I ran across this post and started trying the castor oil + baking soda/vinegar thing. After I got home the first night, I tried it and then took a hot shower. By bedtime, the swelling had gone down an estimated 30%, which was amazing versus this most recent 6 months I've been dealing with the flare-up. I proceeded to do it for 4 more adjacent days (5 total), and the cyst is in a completely livable state. Internally, the affected fat or muscle which appeared 'harder' than the surrounding area has shrunk an estimated total of 80% after these 5 'treatments'. (I'm talking about the cyst itself internally.) The 'wart' is still there, but half the size. I am assuming it will go away like before, but only time will tell.

    I'm so glad I ran into this post. It's very well-written and I thank you more than you could ever know! While it's not a complete cure, it's also not tens of thousands of dollars and pain-free!

    THANK YOU!!!!!!!!!
     
  16. yellerella

    yellerella New Member

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    Jon,
    I'm not sure how you don't have a million more "helpful"s on your reply, but I wish I could mark it a thousand times. I literally only created an account so I could thank you. I have been dealing with this for years now, and I have searched and searched for home remedies. (I have never ever gotten it professionally lanced as I allow it to naturally rupture) - I tried your suggestion: castor oil on gauze on area with heating pad for 20 min, then baking soda/white wine vinegar paste for 20 min and OH MY GOSH. I can sit! It's really silly, because the hip that I was leaning on so I could favor the pained side actually hurts more than the actual cyst now! (but that's cool because I CAN SIT NORMALLY AGAINNNN!!!!)

    Guys. Seriously. Everyone click "helpful" on this. Everyone who has this needs to do this. I want to shout it from the rooftops and such, I'm so excited.
    Thank you thank you thank you, Jon. You have SERIOUSLY helped me and you are SO appreciated.<3
     
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  17. Tara88

    Tara88 New Member

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    Im curious, all of you who have tried this...did you have an opening when you did this like was the skin broke or was it just a bump under the skin? I imagine putting the pack or even the paste on an open "wound" would hurt badly...
     
  18. yellerella

    yellerella New Member

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    Tara,
    As for myself, yes, it was open when I used the castor oil/paste procedure. Usually after it ruptures the pain subsides, but this time - after a couple of days - it wouldn't go away. That's when I started frantically looking for a home remedy to relieve some of the pain and stumbled across Jon's answer.

    The castor oil/heating pack doesn't hurt at all. I won't lie - the baking soda/vinegar mixture does twinge a little, but it's only very slight. (unless you put more vinegar in your mixture... like my finacee and I did the second time doing it... from experience THAT twinges a bit more...) BUT - it only lasts a very short while and after the area is cleaned off, it starts feeling a heck of a lot better. The paste mixture does harden a little bit, so rinsing it off at the very end also hurts a little bit, but goodness is it worth it.

    It relates most closely to the feeling of putting diluted peroxide on an open wound. It burns a little bit, but it makes you feel better because you know it's doing something good. (except in this case it'll also make you feel better because it's actually relieving some of the pain. :) )

    Hope this helps!
     
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  19. Allin

    Allin New Member

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    I am so scared of the pictures I saw for surgery and I was tortured the first time my cyst flared, in an ER here in Canada by a seemingly sadist set of nurses. They lanced me, drained me and the squirted alcohol in the wound. no local anesthetic. Then they packed me and told me we'd do this all week. Every morning i woke up, went to ER in Port Colborne ON, they unpacked, squirted alcohol in and repacked. It was more painful than anything Ive ever been through. (And Ive had serious pain. Two ruptured discs and a cut off thumb, this hurt more!) I just found out today that they were supposed to have frozen me.

    Anyway, it went away and now its back 5 years later and I am going in and out of full out panic. I feel trapped in my body and on top of that, my job is driving a tractor on bumpy ground..... I was very skeptical of the castor oil idea, assuming it mustn't work, until I came here and saw all your stories. Which I thank you all for and you Jon also for this treatment you posted. Ive bookmarked this page so when I feel trapped I can have reassurance.

    Ive started treatment today.My wound is closed and after first treatment, no drainage that Ive noticed, which of course scares me... but Ill be back to keep you all updated. Any reassurance is more than appreciated. Im just so scared to end up getting that disgusting mutilating surgery.
     
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  20. naomiama

    naomiama Very Helpful

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    If you need surgery look into cleft lift it is nothing like the horrifying open excision pics Im assuming your referring to, and it usually only has a 2 week down time after surgery instead of the long slow healing of the open excision. Castor oil might help get the infection down and manage flare ups but surgery is the only thing will get rid of the cyst, if you are having regular flare up Id highly recommend looking into surgery the more flare ups you have and the longer you wait the worse it can be.
     
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