This is my 6th recurrence in 4 years....idk what to do.

#1
I was 20 when I got my first pilonidal cyst. I remember one day starting to feel pain at the very top of my butt crack. I literally typed in, pain at top of butt crack and starting reading through all the articles. I found one that talked about a pilonidal cyst. All the symptoms lined up with mine but it was quite embarrassing as I am a woman, 130 lbs, and did not sit all the time. I decided to play it off and thought, "Oh no, this is not that, I'll be fine." Fast forward a couple of days and the pain was absolutely unbearable. I could not sit down, lay on my back, relax in the bathtub (because of the position you have to be in to do so), and I had enough. I told my now fiance about it and she suggested we go to the hospital.

I remember telling the nurse that I thought it may be a pilonidal cyst and she didn't even know what I was talking about at first, she said she would let the doctor know. Hours later a doc came in and examined me and confirmed that indeed, it was a pilonidal cyst. She told me I had the option to have it lanced and drained, and in her experience, that helps people with the pain. I said OK. The pain even with local anesthetics was almost too much for me. My girlfriend had to leave the room because she couldn't take seeing me in that much pain. The smell was awful, and it lasted for about 10 minutes. They packed it up with gauze and told me I'd need to recover for about 3 days. After the three days, I removed the long stringy gauze from my behind and I was feeling awesome, no more pain!!

Fast forward to literally 2 weeks shy of it being a year since my 1st cyst, it came back. The feeling of dread came over me as I still remembered the pain like it was yesterday. I went back to the hospital knowing that the last time I was good to go in less than a week, and they lanced and drained it again. I took the pain like a champ since I knew what was coming. They suggested because of the recurrence, to go see a surgeon. I went to meet with a surgeon in my town and he suggested we do the surgery in a couple of weeks when my skin has recovered from the trauma of being cut open. I agreed because I just wanted this to stop.

I was put under, and I remember waking up crying and very cold, I had to be kept back there with hot blankets on me for over 2 hours before they let my family come in to see me. I was not in pain obviously yet. I do not remember what procedure he performed (I didn't know there were so many approaches until now) but he basically cut me open really deep, did whatever he had to do, and sewed me back up. I was told I would be back to work in 2 weeks.

The next day was BRUTAL. Because of the placement of the stiches, ANY move I made pulled on them and hurt extremely bad. I had body aches all over from laying on my stomach. My girlfriend was very, very accommodating to me, waited on me hand and foot. I remember trying to get up and walk around after week 1 was over, that was a big NOPE. I was still in so much pain. I honestly believe I got a botched surgery because this doesn't seem to be the norm after surgery.

Needless to say, I was off work for 6 weeks. Luckily, we were living with my girlfriend's parents and my job was GREAT about the whole thing. I got my stitches out and expressed my concern to the surgeon about having pain still and he just suggested that I keep up the pain meds and I should be fine.

I can't remember how long it took to fully heal and not drain anymore, but I want to say it was upwards of six months.

To my demise, around one year after my surgery, I got one again!!!! Now mind you, I am a petite girl, I take very good care of myself, I am Italian so I do have a lot of hair and it's very thick, but I kept the area free from hair, I did everything I was supposed to do!!

I refused to see the surgeon again for the lack of compassion, and the (in my opinion) botched job he did. So I went back to the ER. They lanced it open again and because of the scar tissue and the trauma that area has suffered from, I barely felt it with the numbing shots. They suggested I see a different surgeon and I just flat out told them I'd rather come here, be better in 3 days, than be down for 6 weeks again all for the same result.

It came back again about 6 months ago after me not having it for almost a year. My mamaw suggested that I use a drawing salve for it before going back to the doc. I used PRID salve in a little orange circle pot, lathered it up on a gauze and stuck it there for a couple of days straight (changing it out every few hours). And it worked!!! It was amazing.

Well now we're at today. This is 4th day I've been dealing with my cyst. I've used the salve, I've done the warm compresses, I've bit my tongue and just dealt with the pain all day long. I get married in April and I have been paying on medical bills (almost $400/month) since the first one started. I just don't know what to do. I cannot afford to go back to the ER but I also don't know if I can handle the pain. I'm questioning if it's even worth it to keep causing more trauma to myself because I have two open holes that are never closing up and a really ugly scar that is long and always raised. I just need advice. I can't keep dealing with this.
 
#2
I'm so sorry you are dealing with this. It really is so terrible. It sounds like you need a procedure that will likely take care of this for good, and the cleft lift is a great option. People on this forum have had amazing success with the cleft lift/Bascom procedure when done by the right person. I definitely understand the financial strain, but I hope you are able to look into it because I really think it could end this for you. Feel free to private message me if you have any questions about the cleft lift or want information about the surgeon that performed mine. My surgery was about 5 weeks ago and I am fully healed.
 
#3
Hello Katie, I'm recovering from my latest pilonidal cyst. I don't know how many I have had over the last 25 or more years. With the first few, I would see my family doctor. I don't think she knew what the real problem was. She prescribed me antibiotics each time, and they seemed to have no affect on the cyst. Each time, after I had the antibiotics, however, I would become really sick--some different, larger infection. A partner in her practice told me I was experiencing a "super infection", caused by the earlier doses of antibiotics. After that, when a new cyst developed, I explored the possibility of having surgery, but everything I read about surgical outcomes indicated that surgery provided only temporary relief and a long recovery time. For this latest outbreak, I searched online and found that some people have used essential oils successfully. So after using the warm compresses to open the cyst and starting the draining, I did 2 things: I cleaned the area well, then mixed a few drops of tea tree oil with a little petroleum jelly, and wiped it over the entire area. That has reduced the swelling and inflammation, stopped the itching, and lessened, then stopped the pain. From what I understand, some people have found that routinely applying tea tree oil to the area where the cyst develops has been able to prevent future cysts. I don't know this for certain. I also ate raw garlic cloves mixed with manuka honey a few times a day before the cyst started to drain to build up my immunity internally. I wanted to suggest you try this though, in case it helps. It has helped me.
 

jtrem

New Member
#4
Jane, I'm writing in response to your post. Next month I will be 67 years old. I first experienced a pilonidal cyst when I was 21 years old. Had no idea whatsoever what was happening to me. Simply to make a long story short, I had numerous flare ups per year for about the next 20 years. Excruciatingly painful and disabling, like so many here. I never attempted surgery because I had spoken with so many people who had bad experiences and VERY long and painful recovery times. When my youngest daughter, who will soon turn 29, was about a year or so old was when I had my last bout. For some reason (very thankfully) after having suffered with this malady for over twenty years, I didn't have them again. I do know that I had become quite anal (no pun intended) about cleaning myself and keeping myself clean after bowel movements and still do. Imagine my dismay when yesterday I discovered a painful swelling at the top of my anal cleft (which was not where my initial pilonidal occurred). I went straight to my doctor this morning and got a prescription for an antibiotic. He wasn't sure if it was, in fact, a pilonidal, as he'd never treated me for such. He said it might hopefully be an ingrown hair. The pain is too familiar for me to think it is but I can hope. The reason for my post is your mention of tea tree oil. I also used to suffer, well into adulthood, from cystic acne (many bouts of Accutane) and still use a mixture of tea tree oil and pure aloe gel to treat any potential breakouts. It seems to work quite well with inflammation and skin infections. So far today I've applied this gel mixture twice to the area that I suspect is a pilonidal and it seems to have helped with the pain. So do you find that using your tea tree mixture helps to prevent any flare ups? If so, I have no qualms about adding it to my hygiene regimen. Thanks.
John
 
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#5
Hello John,
Like I mentioned in my post, I'm recovering from my latest occurrence. I can't answer with certainty whether the tea tree oil regimen will prevent future outbreaks as this is something I have just started doing with this last outbreak. I read that other sufferers have used tea tree oil to help with the healing of their cysts, and once healed, have experienced no future outbreaks. I am using tea tree oil myself, and my cyst has greatly improved and mostly healed. I also am using roman chamomile hydrosol. It is used to relieve pain in minor wounds and to promote healing due to its natural antibacterial and antimicrobial properties and is reputed to be able to help to prevent inflammation and infection when used early enough. More information about roman chamomile hydrosol is available online. I am not suggesting that seeking medical care is not useful. I sought medical care and used antibiotics multiple times without success and actually became more ill and lost much time from work. Also, for whatever it's worth, in my experience, if you see a surgeon for a medical problem, you will almost always be told surgery is the best option. I have worked in the medical field for over 45 years, and have seen this almost consistently. Since so many people who suffer from these cysts have outbreaks after having surgery, I just felt exploring other options might be more useful for me. I hope this helps!
 

jtrem

New Member
#6
Hello Jane, Thank you so much for your response. As I initially said, this is my first possible re-occurrence in over 25 years. I still, at this point, don't know if it's an actual pilonidal or not. I'm hoping it's a fluke. It seems to be well on it's way to being healed. I have a couple more days of antibiotic and the pain is nearly unnoticeable. Needless to say, I've been applying the tea tree oil mixture multiple times a day. I've decided just to include it in my hygiene regimen. When I first came across this website I hadn't had a flare up for many years and reading the stories in this forum, knowing first hand what these sufferers are going through, is sometimes heartbreakingly sad. As I also mentioned, as you did, I didn't really explore the option of surgery because I'd known others who had very long and painful recovery times from the surgery and I really didn't want to experience that. The pilonidals themselves were painful enough. My younger sister also had a pilonidal but had the surgery. I have a nephew who also had one but don't know if he had surgery. My oldest daughter is 32 and my youngest will soon be 29 and neither have had a problem with it and as I understand, the problem usually presents itself at late adolescence or early 20's, as mine did. As I also said, I had a problem with cystic acne, but oddly enough I didn't develop it until I was in my early 30's. I also add tea tree oil to my shampoo to help with dandruff. Best of luck to you and hope your problem disappears.
John
 
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