Today is my PC’s 26th birthday, haha!

HappyPhantom

Very Helpful
So, I was just thinking about my cyst’s timeline, and I just realized that it was actually 26 years ago to the day that I had my first lovely experience with the beast. Labor Day weekend, 1992, I was a senior in high school.

I’ve learned so much over the past two decades - my goodness, back then I used to just ride out the flare up bc there was zero info and docs didn’t know what to do for me.

I’m still avoiding surgery (for various reasons) and am committed to managing the inevitable flareups (with my doctor’s assistance) as they happen, as well as find ways to keep the flareups from happening as often.

So this post is kind of a lighthearted reaction to my realization that it’s my cyst’s birthday weekend. Haha!

I am so grateful to this community, and so comforted in knowing that I’m not alone. Last night I was quite weepy And upset, which is a feeling that I suspect many of you share. I hate this stupid disease and at times, get very upset about it.

But this weekend, as I’m dealing with my latest flare up (currently draining) I’m laughing and celebrating 26 years with this awful thing. Hell, it’s lasted longer than my marriage! Haha!:wigglebum:
 
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PITA76

New Member
Happy Birthday PC! Yours is only a year older than mine (summer before my Senior year too). Weren't those super comfortable school desks fun?!!
 

HappyPhantom

Very Helpful
Oh geez, yeah those desks were the worst! Back then I had no idea what the cyst even was - I called it my “butt spur” LOL
 

Riley

New Member
It's interesting to know you've just managed it for so long. I discovered mine in 2011 (an ex boyfriend saw the pits and alerted me to their presence lol), and didn't have the first flareup until 2013. The flareups were so infrequent (didn't get the next one until 2016) I was hoping I wouldn't have to do the surgery, but I also had one last year and two this year now. I also am hesitant to get the surgery because my doctor wants to do open would healing, and I'm worried about how long it will take to heal and if there will just be more issues after that. Also I really like the way my butt looks when it's not flaring up and am concerned with what it will look like after all is said and done. Part of me wants to continue to manage it unless it gets unbearable, so it's interesting to see you have! Happy birthday PC, lol!
 

HappyPhantom

Very Helpful
it’s such a tough call with the cyst, to operate or not. I understand that it’s a problem that will not heal on it’s own and is an internal structure that needs to be physically removed...but....I mean...I just can’t bring myself to do it until I know for sure it won’t come back.

I have managed my cyst all these 26 years and know how to get through it, although i do know that the cyst worsens with each recurrence. I’m just bound and determined to not let this thing take over my life, and I feel that once I start the surgical path, my body is going to have to fight even harder to manage the wound.

That said, I do believe in the cleft lift results I’ve been reading about - and I personally also believe that soon, laser surgery will be perfected for these beasts. I’m kind of waiting for that, bc I’m a big fan that idea versus physical surgery.

In the 26 years, I’ve seen such a huge evolution in information, techniques, tips/tricks and they’ve all helped me tremendously. This forum has been monumental for me.

I’m only just now (in the past five years) even dealing with doctors that know what it is and how to handle it, and I live in a major city.

I have a really specific regimen that I do to manage my cyst when it’s flaring up, pre-flare up, and also a regimen to try to keep in from flaring up in the first place - I’ll be happy to share it if you’re interested. It’s a lot to write out and I’m cooking dinner at the moment, haha!
 

AnxietyWoman

New Member
it’s such a tough call with the cyst, to operate or not. I understand that it’s a problem that will not heal on it’s own and is an internal structure that needs to be physically removed...but....I mean...I just can’t bring myself to do it until I know for sure it won’t come back.

I have managed my cyst all these 26 years and know how to get through it, although i do know that the cyst worsens with each recurrence. I’m just bound and determined to not let this thing take over my life, and I feel that once I start the surgical path, my body is going to have to fight even harder to manage the wound.

That said, I do believe in the cleft lift results I’ve been reading about - and I personally also believe that soon, laser surgery will be perfected for these beasts. I’m kind of waiting for that, bc I’m a big fan that idea versus physical surgery.

In the 26 years, I’ve seen such a huge evolution in information, techniques, tips/tricks and they’ve all helped me tremendously. This forum has been monumental for me.

I’m only just now (in the past five years) even dealing with doctors that know what it is and how to handle it, and I live in a major city.

I have a really specific regimen that I do to manage my cyst when it’s flaring up, pre-flare up, and also a regimen to try to keep in from flaring up in the first place - I’ll be happy to share it if you’re interested. It’s a lot to write out and I’m cooking dinner at the moment, haha!

Hi! I actually am new and made an account specifically to reply to your comment. I’m a 24 year old female who got my first flare up about a month ago. I managed but with antibiotics. It came back and I think because I lean on my tailbone quite a bit. I’d be so thankful if you were to share your regimen and tips on how to deal with this thing? As I really want to avoid surgery and excessive antibiotics. Thank you. Appreciate any kind of advice you can give me
 

HappyPhantom

Very Helpful
Hi, AnxietyWoman (I love your name, that would be me as well, haha). Welcome to the forum and I’m happy to provide my info.

All of this has been learned over the course of 26 years from various other people as well as what works for me from my own weird ideas. Your cyst is like a beast that will be mostly dormant, and then wake up and get angry from time to time.

I’ll break it down into sections.

1. To support my internal system
- cut way back on sugar and high fructose corn syrup, in general keep a close eye on my sugar intake.
- take 1 65 mg of iron supplement daily

(I find that whenever I get lazy on these, I start to get that “oh no, here it comes” feeling. Whenever I feel it coming back, I switch to absolutely ZERO sugar, increase my fiber and take 2 65mg iron pills every day till it passes and then get back on my daily regimen).

2. To try to not anger the Beast
-absolutely no thong undies, never ever. Ever. Only cotton full-butt undies!!
-try not to do tight layers of undies/leggings
- sleep in loose layers or even commando
-keep area super clean, super dry.
-I’ll apply a dab of castor oil or diluted tea tree oil with a cotton disk every once in awhile

3. When I get the “oh no!!!!! It might be coming back” feeling
-immediately cut out all sugar, take my 2 65mg iron supplements once a day
-clean and dry the area
-dilute tea tree oil with water, soak cotton disk (like the ones for makeup removal) fold it in half and tuck in my butt crack so it’s up against the cyst. I do this morning and night.
-have doc on call to get antibiotic if I feel that the area is starting to get a burning hot feeling (my cyst will go into abscess from time to time - not every time though). Just have the info ready so that you can act fast if you need it.

4. If the beast has started to go into a full on recurrence/lump is there and swelling:
-switch from diluted tea tree oil on cotton pad to diluted , raw (Bragg’s brand) Apple cider vinegar on cotton pad, tuck that in butt crack so it’s really drenching the area
-lie down on bed, put on Netflix or whatever and place heating pad on lower back, on “high,” about 20 mins at a time.
Repeat as needed, but most of the time, this is enough to get the cyst to burst on it’s own. If you do this for a few days (morning and night) and it doesn’t burst, it’s time to get those antibiotics. Especially if it’s starting to get burning hot and very painful.

5. “MayDay MayDay - the beast is mad”
If the cyst is infected and antibiotics haven’t helped, get thee to urgent care or primary to get it lanced and drained. It’s awful, but you HAVE to get the infection out. At this point you have to have professional help. Follow all doctor’s directions on home care.

6. When the beast is draining, either from your heating pad routine, on it’s own or after a lancing
-keep extremely clean and dry. I douse a baby wipe with Betadine to clean the area, and then douse a cotton round with Betadine and tuck that in the butt crack so it’s up against the cyst. Then I cover it with gauze and Tegederm, change morning and night.
-I stick with showers rather than baths, and bleach the tub floor when I’m done

My supplies:
-unscented baby wipes
-package of cotton rounds
-Braggs or any other Raw unfiltered apple cider vinegar
-tea tree essential oil
-Betadine (povidone/iodine antiseptic solution, the dark brown stuff)
-heating pad (single most valuable item in my arsenal)
-gauze squares
-Tegederm adhesive film (made by 3M, can find at pharmacies) another brand is Nexcare. It’s better than gauze tape - it’s waterproof and doesn’t budge.
-tailbone cushion (can find on Amazon) so you can sit relatively comfortably.

I might revisit and edit this as I have time to think - but this is my general system. I’ve tried the baking soda/vinegar trick (make a paste and apply) but that made my beast really really mad, so I’ve only done that once.
For me, my cyst will go for years without relapse, and then I’ll have a period of 2-3 years where it’s acting up every few months. There doesn’t appear to be any rhyme or reason to it, but I find that common denominators for me are too much sugar, too much stress and getting lazy on my upkeep. My recent pregnancy brought on 3 relapses in the space of 9 months - ugggh. Sometimes the relapses will also occur along with the menstrual cycle.

I hope you find this to be helpful - again, this is what works for me and everyone is different. The heating pad is so key that I could marry it and live happily ever after.

But stay humble with this damned beast - although I have been able to manage it without surgery thus far, I do know that it is just a matter of time before surgery will be necessary. So far in the 26 years, I have been able to manage it in these various ways. I absolutely love this forum bc I’m always hunting for new tips and tricks to add to my arsenal.
 
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AnxietyWoman

New Member
Ahhhh thank you so much!! Bless you. It seriously sucks to have this but I've been optimistic after seeing that I'm truly not alone, so many women and men have it. I'm going to try the heat pad tonight. I feel so mentally exhausted by it. By chance, can you link me to the best cushion that has helped you on Amazon? I found one but the reviews were really bad and for some reason I can't find them in stores?

Sorry to hear that you've had it three times during your pregnancy, that's awful... How did you manage the pain/sitting down, while being exhausted by pregnancy in itself? Hubby & I are thinking about having a baby but I'm so afraid this pain will make my life hell. Ugh.

Again, thank you so much, like I said I'm new here and seeing how helpful all of you are is really wonderful and I'm glad that I'm not alone (but not glad that everyones ass hurts) xoxo
 

HappyPhantom

Very Helpful
Oh you are so welcome!! I was telling my hubby that if my advice makes your life even 5% easier with this dang cyst, then I’m really happy! We are definitely not alone - every single person on this forum knows what it’s like. To me that is SO comforting!

As far as the pregnancy - I was fortunate that I was home on maternity leave and could spend my days lying on my side. During any pregnancy - you have to kind of already assume there are going to be times and things that are super uncomfortable - this was definitely pretty bad and I was in tears a lot. You have a giant bump on your tummy and then can’t sit bc of the cyst - definitely uncomfortable, but so are the hemmorhoids, morning sickness and everything else - haha!! It’s just one more thing.

But, my baby girl is so freaking adorable, and my older daughter (6) was so helpful to me and so supportive. It all works out just fine - it’s all temporary.

There are pregnancy-safe antibiotics available if it gets to that point. The main thing is that they needed to make sure my cyst wasn’t draining/etc during delivery (it wasn’t). My doctor was really informed and helpful.

Pregnancy is bigger and better than so many worries and concerns, the cyst being one of them! You’d get through it. That’s when i discovered the joys of the heating pad! During pregnancy, you usually have lie on your (left) side at night anyway, so that helped. Don’t get me wrong - I’m not going to lie, it was pretty bad, but it was temporary. Looking back, it all just seems like a dream - and I feel like a champion that I could physically/mentally/emotionally get through that. I did, and you can too. With pregnancy, your doctor is so key for everything else, it’s nice that I had immediate support for the cyst too. You just feel really well taken care of during that time.

My first pregnancy didn’t have any issues with the cyst - I remember being pretty worried about it and as it turned out, I was Okay. Not sure why it came out during my second pregnancy - so, you just never know.

I’ll hunt for the link to the sitting cushion - I’ll be back in a bit!
 
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AnxietyWoman

New Member
Hello, sorry for the late reply. I keep rereading your message because it's very comforting to me. I've read too many horror stories online and my doctor isn't the most sympathetic guy.... But really I appreciate this because I need to hear that reassurance, that another woman can get through it. I feel so much better as I felt so hopeless earlier. I love this forum. I purchased a heat pad today and will be using it in bed after my bath. Thanks again. And yes you definitely made my life more than just 5% easier with your advice. You're awesome.
 

HappyPhantom

Very Helpful
Oh my gosh, this just made my whole week! Yayyyy!! I am so happy that this is helpful to you - no sense in suffering alone. You can ABSOLUTELY get through this (well, you can get through anything, believe me).

I got out my heating pad last night and am doing my tea tree oil cotton pad tuck it in the butt crack routine today, bc my cyst is kind of acting up. I’m really trying to have a sense of humor about it all and manage it, bc I’ve got so many other things on my plate. My cyst is super manageable right now - I doubled up on my iron supplements, doing the tea tree trick and zero sugar. Should go back dormant within a day or two. If not, I will up the ante with the Apple cider vinegar and heating pad.

I am so glad you got the heating pad - I love mine so much bc it was a total game changer. I haven’t had my cyst go abscess/need to be lanced and drained since I started using it to manage the flareups. (I just started using it this spring, after my last lancing in April when I was pregnant). Fingers crossed!! But I am prepared in case it does happen.

Anyway, I love this forum and I LOVE that I’ve had a positive impact on your situation. This disease is no joke and sucks big time - that’s for sure - but we are all in the same boat.
 

Worry10

New Member
it’s such a tough call with the cyst, to operate or not. I understand that it’s a problem that will not heal on it’s own and is an internal structure that needs to be physically removed...but....I mean...I just can’t bring myself to do it until I know for sure it won’t come back.

I have managed my cyst all these 26 years and know how to get through it, although i do know that the cyst worsens with each recurrence. I’m just bound and determined to not let this thing take over my life, and I feel that once I start the surgical path, my body is going to have to fight even harder to manage the wound.

That said, I do believe in the cleft lift results I’ve been reading about - and I personally also believe that soon, laser surgery will be perfected for these beasts. I’m kind of waiting for that, bc I’m a big fan that idea versus physical surgery.

In the 26 years, I’ve seen such a huge evolution in information, techniques, tips/tricks and they’ve all helped me tremendously. This forum has been monumental for me.

I’m only just now (in the past five years) even dealing with doctors that know what it is and how to handle it, and I live in a major city.

I have a really specific regimen that I do to manage my cyst when it’s flaring up, pre-flare up, and also a regimen to try to keep in from flaring up in the first place - I’ll be happy to share it if you’re interested. It’s a lot to write out and I’m cooking dinner at the moment, haha!
I’m very interested in knowing what your pre flare up and actual flare up regimen is. I’m currently in a flare up and I start a new job next week... I can’t deal with this right now! I am taking turmeric and using tea tree oil directly rubbing on the skin, I am also rubbing sesame seed oil on my scar and to the right where it seems a little puffy and sore
 

Worry10

New Member
Sorry! I got excited about your regimen that I stopped scrolling! I see it and I think I’m going to try the iron and Apple cider vinegar next! You are so helpful.
 

HappyPhantom

Very Helpful
Hi, Worry10! That’s so funny - bc I was about to type it all out no problem after I saw the first notification pop up in my email. I am just thrilled that I’m helping someone!!

Definitely utilize the heating pad - I’ve said before but it’s the single-most powerful item in my arsenal. It will knock down a flare up very quickly. Starve your body of sugar, do your iron supplements STAT, too. Good luck and check back in, I will have my fingers crossed!

I’m currently doing my tea tree oil cotton pad on the cyst trick and it’s now down to just a small irritation, even the draining has stopped. And that was the difference from just this morning to this afternoon.
 

Worry10

New Member
So happy yours is getting better! I started the iron yesterday, and will continue with 2 until it goes down. Since I had surgery with the closed flap incision I can’t actually see or get to the new cyst, which terrifies me!! It’s all under the skin. This just doesn’t seem right, I mean how will a cyst drain?! I know you haven’t gone through this part yet with surgery, but I can’t seem to find anyone with advice on this part. I noticed some swelling went down and pain from sitting down to the toilet is better, so I’m just going to keep on keepin on until it gets better or worse.
 

AnxietyWoman

New Member
Oh my gosh, this just made my whole week! Yayyyy!! I am so happy that this is helpful to you - no sense in suffering alone. You can ABSOLUTELY get through this (well, you can get through anything, believe me).

I got out my heating pad last night and am doing my tea tree oil cotton pad tuck it in the butt crack routine today, bc my cyst is kind of acting up. I’m really trying to have a sense of humor about it all and manage it, bc I’ve got so many other things on my plate. My cyst is super manageable right now - I doubled up on my iron supplements, doing the tea tree trick and zero sugar. Should go back dormant within a day or two. If not, I will up the ante with the Apple cider vinegar and heating pad.

I am so glad you got the heating pad - I love mine so much bc it was a total game changer. I haven’t had my cyst go abscess/need to be lanced and drained since I started using it to manage the flareups. (I just started using it this spring, after my last lancing in April when I was pregnant). Fingers crossed!! But I am prepared in case it does happen.

Anyway, I love this forum and I LOVE that I’ve had a positive impact on your situation. This disease is no joke and sucks big time - that’s for sure - but we are all in the same boat.
Ok I have another question, don't mean to be a bother, but does this mean I can't wear leggings anymore??
 

smrhem

New Member
I am extremely late to this thread but this has been so helpful! I too do not want surgery there have only been 3 thus far I haven't been able to manage on my own, one of those 3 was lanced. I am currently nursing my ass with the baking soda acv paste, put tea tree oil on after bath and then use antibiotic ointment because I see a little of my skin has split first time that I've had that happen. My skin is also really itchy like my eczema would be
 

HappyPhantom

Very Helpful
Ok I have another question, don't mean to be a bother, but does this mean I can't wear leggings anymore??
I am so sorry that I’m only just now seeing this question! I hope that you have been managing well in the time that has elapsed between your question and my reply. Leggings are tricky - some of them are okay and some of them aren’t. I find that buttery soft stretchy leggings are totally fine but I run into trouble with compression leggings for workouts. I ended up wearing those JUST for workouts and not for hanging out. One of my flare ups was from a particularly tight underwear/compression leggings combo after a long yoga workshop day that makes me really hesitant now. So just consider the compression and fit so you don’t accidentally add too much pressure to that spot the way I did.
Hope this helps and again, so sorry for the delay.
 

HappyPhantom

Very Helpful
I am extremely late to this thread but this has been so helpful! I too do not want surgery there have only been 3 thus far I haven't been able to manage on my own, one of those 3 was lanced. I am currently nursing my ass with the baking soda acv paste, put tea tree oil on after bath and then use antibiotic ointment because I see a little of my skin has split first time that I've had that happen. My skin is also really itchy like my eczema would be
Hi! No worries at all - I’m so glad you found something helpful in this thread and I’m happy to answer further questions.
Have you tried the heating pad as well? What you’re doing now is right on track, I would add a heating pad (20mins or so, a few times a day). And if you haven’t already, make sure any tea tree oil you put on the area has been diluted (tea tree oil can burn the skin when applied directly). The heat from the pad also really helps reduce the itchiness!

Another suggestion that I have (if you don’t already do this) is to jot down the date of a flare up on calendar and note any potential triggers than you can think of. For example, stress level, food and drink, activity, clothing - and see if there are any common denominators with your flare ups. This might shed some light on what brings your cyst into a flare up and we can troubleshoot those aspects.

I hope this is helpful - Let me know if you have any more questions - I’m here for you! :) good luck
 
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