I'm so tired of it coming back, but I'm scared. What do I do? (Long)

Lillaixi

New Member
Hi.
As I'm typing this I'm laying on my side on the couch, feeling a good amount of pressure and pain from the same spot as usual. The stupid thing came back again. I've had it come back maybe 4-6 times, maybe even a time or two more, since I was 17. I'm 22 now. I've only had it lanced, every time its came back I get it lanced then I just hope that it doesn't come back again because I'm terrified to take the next step for it, which would be surgery. I've never had any kind of surgery before, and I'm such a scared baby about any of that kind of stuff. Just the anxiety and thoughts about it alone fill up my head and that's what ends up making me just do the hope it doesn't come back thing. Every lancing I've gone through has been the most painful awful thing I've ever had to deal with, and I just know that I'm going to have to get it lanced again and I'm stressing myself out over that. The pain is unbelievable, and the girl I see at the surgeons office in this small town I live in can't give me anything for the pain of it being lanced besides that numbing the area stuff (that feels like it does nothing when its being done). I'm an extreme crying yelling in pain mess while its being done, and just thinking about that feeling almost puts me into tears every time. I had a appointment there a couple days ago, doctor said it looked okay gave antibiotics and said to call if it gets worse, and that shes going on maternity leave until after labor day. So there will be a guy stepping in for her while shes gone. Called and made an appointment and that's going to be on Wednesday, in two days. It's really red and inflamed right now and hurts a ton. Walking is hard, moving in general is just super painful. All the usual stuff that comes with it. Except sometimes randomly there's this really really bad stabbing pain I'll get for maybe 3-5 seconds. It looks like the scar from where they cut in to lance it is kind of puffed out. The whole spot is really tender and it might be grapefruit sized or a little bit smaller than that maybe? I'm not good with size stuff. >.< So I have the appointment in two days with a guy I'm not sure who it is that's stepping in for my doctor and I'm sure if I even make it two more days without having to go to the ER it's going to have to be lanced again. I'll have to deal with that AGAIN. Then after that is over I'll have to figure out what to do.. Because I don't think I can keep dealing with this. Even though I'm beyond terrified of the surgery options. Ever since the very first time it showed up its basically in my mind all the time. Every single time I'm sitting down, I always think about it. Always trying to keep off of it and sit and lay on my side. After 5 years I'm just tired of it...
So I've basically been researching about it since the first time it happened, options and everything online about it that I could. Most of the things I've read tend to point to getting a cleft lift. Gosh I'm so scared of every single option. The closed excision sounds like the one I would be most comfortable with but I don't even really look at that as an option, read so many bad things about it and it not working and coming back anyways due to it being closed. Open wound scares me a ton a ton, even though it seems like it may work? The recovery time just about everything about it seems awful to me. My mom would be the one helping me with the aftercare of things from whichever option I take and she works a lot and I'm just worried something wont get done right or something I don't know. Then there's the cleft lift. That one seems like the most successful and recommended options. I'm really worried about the scarring from it, I'm scared it will be this huge ugly thing that will make my whole butt look gross and different and never the same.. Then I'm worried about the tube I've read about that comes after the surgery... I'm really really afraid of the healing process and the after surgery care.. I'm just so absolutely terrified of all of it. I honestly might not even be considering it if it wasn't for the fact that Dr. Thomas Bascom has his office in Eugene Oregon, and that's 2 hours away from me. That just seems like incredible luck to me and after all this that I might just have to go for it.. I wasn't sure if I should ask the guy I see at my appointment on Wednesday about a referral or something to maybe go see Dr. Bascom, or if I should just call their office in Eugene directly, or if my health insurance would even cover the surgery.... So I'm not sure how to handle that, and I'm a little worried if/after I get it lanced I'll just fall back to the hoping it doesn't come back thing. (I'm sure it will..) I think it might be time though.

Do you think a cleft lift is the right answer? If so can you tell me about it, anything about it, literally anything. How bad is the scarring, aftercare, recovery, etc. ANYTHING. I'm just not doing very good right now, and need help with this from people that understand. Sorry about how long this is and if you've read any of it thank you for your time.
 

JonH21

Very Helpful
I’m sorry for your pain. Pretty much anyone on this site knows what you’re going through. It sucks. I will try to explain what I’ve had done as maybe it will help you. First off, the pain you are experiencing sounds worse than any other post op pain I’ve had from surgery. Maybe surgery is something you should look into. Because let’s be clear, some people have luck avoiding surgery and if you’re really lucky it’ll go away on its own... but it’s rare and surgery is typically the only (possible) solution.
I’ve had mine lanced, I’ve had silver nitrate treatments, open healing, closed incision, and the cleft lift. The last thing you should be concerned with is what your butt looks like. And to be honest, with the right surgeon, it really doesn’t look that horrifying. You can tell that you’ve had surgery but it’s not god awful looking. Who even is going to see your butt anyway? A few people on this earth? I can’t speak for everyone, but the cleft lift is what I would strongly recommend if you want to have the best chance at living a normal life. In my opinion and personal experience, the other techniques are a waste of time and money. Again this is my opinion. You should find what works best for you. Just make sure you do plenty of research. If Bascom is close to you, you should definitely look into it. To answer your question about cleft lift... basically they reshape your butt. They move the incision off to the side so it heals better and gets air. Having an incision in the deep natal cleft right down the crack is not a good healing zone. They will then stitch you up, or close you up with some other type of closure. Mine were internal stitches that dissolve after time. Some also place a temporary drain in. Some don’t. The after care is much easier than most open or closed incisions. With the right care, little dressings are used, and you will be back living a normal life in a few weeks. The pain is only moderate in my experience. It gets better each day. It’s about sucking it up for a few weeks. Some people say they don’t experience any pain st all. I wasn’t that fortunate but it was not all that bad. I wish you all the best my friend. I’m always willing to help or give any advice I can.
 

DarlingCurse

New Member
I feel your pain and anxiety. I went to the ER in November because I knew my cyst had come back but because of how sensitive I was when they would touch it, they couldn’t lance it like that so they sent me to emergency surgery. I was terrified, however, surgical teams are usually understanding and try to comfort patients because it is very scary, especially for first timers. I panicked so bad I cried and hyperventilated and they held my hand and told me it was okay until I passed out (from anesthesia).

Surgery is definitely not fun. And although my recovery time will hopefully be different than what you experience, it’s definiely worth it. I had a closed excision that opened up, I’ve dealt with packing since January. Now I have a wound vac because other methods weren’t helping me and I see my wound care doctor every Friday. It’s a very slow process, and the area it’s in doesn’t help at all. Don’t let this scare you away. Everybody heals differently. I’m 21, so I’m young, but I’m also overweight and I don’t eat as healthy as I should. I also have a high chance of getting diabetes so things like that hinders healing a lot. But it will heal eventually, and it sucks. I actually lost my job because I obviously still have a hard time sitting, but I’m in a place where that doesn’t affect me (I live with my boyfriend and his parents).

Cleft lift would be a great chance if you can find someone in your area who specializes in it. I should have done that my first time around after reading all of the horror stories on here. However, I still have faith in my surgeon and her team and they’ve been so nice to me and very understanding, so I don’t regret that.

Also, having great support will help a lot. My boyfriend has done my dressing changes before the wound vac and has been so great to me. My parents and friends are understanding of my situation and try not to make me push what I can’t do.

It’s very common to be scared, and nobody blames you. You aren’t a crybaby, surgery is scary, this disease is scary, so don’t worry. You have plenty of supporters here if you have any questions!

Take it easy! If you can stand it, try a warm sitz bath. It might help the cyst pop and also should help relieve the pain a bit.
 

Lillaixi

New Member
Thank you both so much! I really appreciate the replies, helped me feel a bit better about things. Tomorrow (well it's past midnight so today I guess) is when I'm going to get it lanced. Really struggling in my head about getting it lanced again, especially with how large and tender it is right now. So I'm kind of killing myself with stress over that, really not looking forward to that pain again, and that shot of numbing the area just doesn't do it. :(
Thank you again you guys are great I really really appreciate it. ❤
 

Lillaixi

New Member
Well, I went and miserably had it lanced by the doctor that was filling in for my usual lady. It went the usual screaming and crying and shaking and all that comes with it for me. I'm not sure how I felt about the doctor.. Maybe just not the best feeling? I don't know, some of the things he said just wasn't comforting? Just an off feeling i had about him I guess. The nurse was a sweetheart though. Before the lancing when I first got there I mentioned the cleft lift, the nurse wasn't quite sure what it was. Explained that the doctor I would be seeing and two others here do the closed excision one, the pit picking one, and the open wound, she said they have been successful. I believe she said no one they have done the surgeries on have had it come back. Later after the lancing the doctor was mentioning the open wound, matter a factly talking about it. I really don't like the sound of the open wound method. I brought up the cleft lift again, and he wasn't very sure what it was, he said that if that's the one I'm really interested in that they could do that but... and went on saying stuff about the other methods. (I was a little confused because they both didn't really seem to know what it was then to say they can do that for me if I wanted didn't seem great I don't know) I don't think I would want the doctors here to be the ones to do anything.. I did ask for a referral to be able to see Dr. Bascom but they said I had to get it from my primary doctor. (Which I don't see super often, so she doesn't know everything that the surgeon I've been seeing for most of the lancings I've had does) but I guess I have to schedule an appt. With her to get a referral to Dr. Bascom. I have another appt. With the fill in doctor in 6 or so more days for a check up on how it's going since the lancing. I'll try to figure out more then I guess about the steps to take in order to I get in touch with Dr. Bascom.
One of the things I'm typing this at the moment for is that after the lancing for the second time ever after any of my lancings I had it packed, and was told to take it out the next day and have my mom repack it for me. She was told to make sure she pushes it all the way in as far as she can and what not, and that I'm supposed to do it for a week. The next day I took my pain medicine 30 minutes before then went for it, took the packing out myself, that was miserable. Terrible. After a second or two of pulling I really wasn't sure if I could actually handle it. Mom asked if I wanted help but I was afraid to let her do it. I ended up getting it out after a minute or two but it really put a toll on me. Then it was time to do the packing.. man.. It was so painful. I was yelling quite a bit and I started feeling so so sick from the pain I almost threw up. Kind of hurried her in the end because I was so close to throwing up. It hurt so bad. Now it's about bed time and when i wake up im going to have to do it again and I'm just struggling. Was crying just thinking about it and the stress from it and the anxiety is just messing with me. I'm just not sure how to handle it all right now. I'm not sure how I'm going to deal with the packing for 6 more days. I have no idea how I'm going to deal with it when I wake up. Is there a certain position I should be in when it's being packed? I was bending over, should I lay on my stomach maybe? If any of that even matters. Anything and everything helps. Thanks to anyone that reads this. Just need to talk to someone I guess.. Thank you!
 

DarlingCurse

New Member
Well, I went and miserably had it lanced by the doctor that was filling in for my usual lady. It went the usual screaming and crying and shaking and all that comes with it for me. I'm not sure how I felt about the doctor.. Maybe just not the best feeling? I don't know, some of the things he said just wasn't comforting? Just an off feeling i had about him I guess. The nurse was a sweetheart though. Before the lancing when I first got there I mentioned the cleft lift, the nurse wasn't quite sure what it was. Explained that the doctor I would be seeing and two others here do the closed excision one, the pit picking one, and the open wound, she said they have been successful. I believe she said no one they have done the surgeries on have had it come back. Later after the lancing the doctor was mentioning the open wound, matter a factly talking about it. I really don't like the sound of the open wound method. I brought up the cleft lift again, and he wasn't very sure what it was, he said that if that's the one I'm really interested in that they could do that but... and went on saying stuff about the other methods. (I was a little confused because they both didn't really seem to know what it was then to say they can do that for me if I wanted didn't seem great I don't know) I don't think I would want the doctors here to be the ones to do anything.. I did ask for a referral to be able to see Dr. Bascom but they said I had to get it from my primary doctor. (Which I don't see super often, so she doesn't know everything that the surgeon I've been seeing for most of the lancings I've had does) but I guess I have to schedule an appt. With her to get a referral to Dr. Bascom. I have another appt. With the fill in doctor in 6 or so more days for a check up on how it's going since the lancing. I'll try to figure out more then I guess about the steps to take in order to I get in touch with Dr. Bascom.
One of the things I'm typing this at the moment for is that after the lancing for the second time ever after any of my lancings I had it packed, and was told to take it out the next day and have my mom repack it for me. She was told to make sure she pushes it all the way in as far as she can and what not, and that I'm supposed to do it for a week. The next day I took my pain medicine 30 minutes before then went for it, took the packing out myself, that was miserable. Terrible. After a second or two of pulling I really wasn't sure if I could actually handle it. Mom asked if I wanted help but I was afraid to let her do it. I ended up getting it out after a minute or two but it really put a toll on me. Then it was time to do the packing.. man.. It was so painful. I was yelling quite a bit and I started feeling so so sick from the pain I almost threw up. Kind of hurried her in the end because I was so close to throwing up. It hurt so bad. Now it's about bed time and when i wake up im going to have to do it again and I'm just struggling. Was crying just thinking about it and the stress from it and the anxiety is just messing with me. I'm just not sure how to handle it all right now. I'm not sure how I'm going to deal with the packing for 6 more days. I have no idea how I'm going to deal with it when I wake up. Is there a certain position I should be in when it's being packed? I was bending over, should I lay on my stomach maybe? If any of that even matters. Anything and everything helps. Thanks to anyone that reads this. Just need to talk to someone I guess.. Thank you!

I've never had an "official" lancing as the first time I discovered mine, it was already abcessed and just needed antibiotics for it and to keep it clean, and the next time I had it surgically done because they couldn't do it by bedside since I was so sensitive. I imagine the pain is very, very awful. Did they give you any sort of numbing agent or pain reliever beforehand? I've read that bedside lancings are done with a local anesthetic, so I wasn't sure. If you're unsure about your current surgeon, I would definitely try to get that referral for Dr. Bascom. I've heard nothing but great things about him and his procedures. It may take a while to get that referral but definitely try for it -- if not, you can always look at the forum for a doctor near your area.

I absolutely understand you being wary about the open excision, and I've read that most people recover from it and never had any reoccurances. However, I started off with a closed excision that opened up about two weeks later into an open wound, and I'm still recovering to this day. I have the wound vac now. The open excision is definitely a long, long process to heal from, and some people unfortunately never heal from it either completely or correctly. Like I said, absolutely stick with your gut feeling. The cleft lift is definitely worth the wait/money because it should clear up the problem completely and most people recover very quickly.

As for dressing changes, it will hurt like that for a while. It takes a while to get used to. I still sometimes scream and cry to this day, depending on the day (if I'm sore more than a different day). Try to hop in the shower or use some saline before a dressing change, if possible. The water/saline will loosen up the dressing that is packed in your wound, and most likely the pain is from some clotting around the dressing that's sticking as it's pulled out. I find that it's relatively smoother when I soak it first. Keep taking your pain pill before, because that should definitely leverage some of the pain you're experiencing. For position, my boyfriend would always remove dressing in the shower (which absolutely hurt and I wish I could have laid down for it, but it was easier to dispose of this way), and for packing I would lay on my stomach. That way, my boyfriend could get a better view of the wound and it makes it easier to pack because it's "open". Try not to tense up if at all possible because that will make the pain worse and make it harder for your mom to pack it in deep enough. Also, make sure she isn't stuffing too much dressing in because if it's too tight, that probably is part of the pain plus it doesn't give it the chance to close in like it should.

If there is still pain, you could try to ask for some lidocaine gel? The nurses at the wound care center gave us some tubes of lidocaine to use for dressing changes because it hurt so bad for me despite taking narcotics beforehand. Also, take deep breaths -- I don't know if you're like me or not but when I have a painful dressing change, I tend to hold my breath and that somehow makes it infinitely worse. Put something on TV or your phone and try to focus on that, even some calm music. That always helps me!

Also... if the doctor said they don't know the procedure but they can "try it", don't do it. They don't know the procedure itself and it may not help in the long run, or the flap might fail. It's better to go to a specialist.

Good luck!!
 

Cam4au

New Member
I agree with DarlingCurse above. Do not let them do that surgery on you if they do not have any experience with it.


I know what you’re going through. I had my cyst show up when I was 14 years old (a month before my 15th birthday). I remember going into the bathroom, getting some toilet paper to calm an itch, only to find puss and blood. I stayed up all night long researching what was happening to me, all while crying out every single tear I had in me. I found out that I most likely had a pilonidal cyst and read all the horror stories and the very few good recovery stories. I cried even more after finding out that it would probably take surgery, because I had never had a surgery once, in my entire life. I was so afraid and anxious.


I went to my family doctor and he diagnosed me with the cyst and set me up with a surgeon here in my town. The surgeon assured me he was very well experienced with this type of surgery and that he would keep me taken care of. He convinced me to have an open wound surgery (which I was in no way fond of but overall, i’m glad I chose it).


I’m going to be straight as possible with you. Recovery from this surgery is not the easiest thing in the world. But I promise you, it’s not the hardest.

I had the surgery done and kept the wound open. I changed the gauze as the doctor told me to( this hurt the most but was honestly not that bad) and spent most of my first day or two on my stomach. I was able to walk just fine on the third day. The pain honestly was not that bad, it only hurt me if I sat on it the wrong way or moved my leg in a bad direction too fast. About 2 weeks later came around and I was able to return to my everyday life, with some limitations, no bike riding, swimming, baths, all things I could avoid easily. After the first week, I was able to sit normally with a bit of pain(nothing major) and on the third week I barely felt anything when I sat (only the occasional strike of pain that lasts a couple seconds, and that was only when I sat down very quickly and stretched one of my legs way too far.)


The next several months the surgeon had me keep the area CLEAR of hair. I shaved for the first several weeks and eventually was able to use hair removal cream like nair to keep the hair away. By this time school had started back and I was able to return to normal just like life was before I found out about this.

I had checkups with the surgeon every 2 or 3 weeks so he could check up on my progress and make sure that I didn’t miss any hair, or get any that might have made it’s way into the wound when I was shaving. (This was uncomfortable but defiantly bearable.) overtime after my wound began healing, I started visiting the surgeon once every month or two.


Overall, it took about 15 or so months for my wound to completely close itself after the surgery. This was just this past December when I had my last appointment with my surgeon where he told me it had completely closed. Though, like I said, I was able to return to my normal life within 3 weeks, healing just takes time.

I now am so glad I chose to do the open healing, as I’ve read too many stories of people with reoccurring cysts choose the closed option because it seems like it won’t hurt as much.

I would reccomend the open healing option from experience but in the end, it’s your choice.

(Oh yea, i do not have any visible scars either)

If you do chose this option, I can give you some tips to make your recovery much easier that I wish I would have known about when I was going through it.

1. When laying on your stomach, get a pregnancy pillow and put it between your waist and the bed(or couch). This will keep your rear extended up a bit and I personally found it to keep my back more comfortable.

2. Allow the wound to get some fresh air. I usually turned my fan on and pulled my pants down enough so that the area would get plenty of air.

3. If you are having someone else change your gauze, I found it easier to lay on my stomach and the end of a bed and spread my legs wide. It was easier for my mother to get to the wound and clean it.(within a few days I was able to do this myself)

4. Get a Netflix subscription and a few good books to keep you occupied for the first 2 or 3 days. I promise though, it gets better.


I’m sorry for this long post, I just felt like you should know my story before I give you advice and you chose whether or not to have surgery if you need it. Trust me, I know it’s the last option you want to chose, as it was mine. But if it keeps you comfortable when you sit everyday and prevents you from having to get it lanced continuously. I really recommend it.

Please feel free to ask me any questions you might have.

I wish you the best of luck and hope everything goes well with whatever choice you decide!!
 

Lillaixi

New Member
Thank you guys for the replies, it helps reading through things from other people. I have my check up since the lancing appointment tomorrow and I have a feeling the guy is going to try and push me towards the open wound option and I'm just not sure I can handle that. The having a big open hole part just messes with my head so much and I don't know if I can fight through my fear and anxiety enough to go that way about it I'm just really afraid of that option. My mom would be doing the taking care of me after surgery part and I worry a lot about the after care of an open wound and it not being done right or just any of it really and for a good amount of time too, I just don't know I have it in me.. cleft lift recovery didn't seem like it would be terrible, the tube part scares me a lot though. I also worry about it being an extreme step to take? My boyfriend and a friend watched the cleft lift surgery video (I refuse to watch it) and it seems like they're removing a lot of skin, I don't know it just seems like a big surgery.. I also really struggle with my body and worry that it'll make a permanent change or something to my body that'll cause me to struggle more on it.. Just a lot of thoughts in my head causing me a ton of depressed and anxious thoughts that I'm not quite sure how to handle. I figure I should just try and set up an appointment with Dr. Bascom to try and figure it out, not entirely sure how I should go about trying to get in touch or get an appointment with him.
Just wanted to say thank you again for the replies.. <3
 

RanchWife

New Member
I am so sorry, ive had surgery two times 12/26 and 4/6 both time 8cm wide 6cm deep. Sent home on a wound vac , has a home health come see me for dressing changes.
Pleae look at all your options, i regret having the surgery, were in debt because of it, and the sad thing is it’s coming back. I refuse to have surgery agin. But im a ranch wife and as of today i still cant ride my horse . Blessing sent your way
 
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