A symptom on top of symptoms. Ideas?

Glinda

New Member
Hello. I am a woman in my 50s and last week, I was diagnosed with a pilonidal cyst. I can't feel or see any evidence of a cyst, but I'm told that's common. I had terrible low-low back pain for four days and then the draining started. Ewww. I started searching for information online and ended up here. What a treasure trove of information this site is! I realized two things: I have a pilonidal dimple thingy in my butt crack that has been there my whole life. I never paid attention to it, except when it would get irritated and drain gunk, which started maybe 15 years ago. Maybe once or twice a year. It was never bad and I always thought it was some weird form of misdirected acne.

This time around, before the draining started, I just felt mildly ill, like I was fighting something. I wasn't worried about it being COVID-19 because I rarely leave my house and haven't been around people in a long time. Once the draining began, it went on for days. After doing lots of reading here, I went to see Dr. Lisa Schatz in Denver. She confirmed the diagnosis and told me that it's common for pilonidals to "burn themselves out" if they've been around for years, especially in someone my age. For the record, not only am I not hairy, I have essentially no body hair at all, anywhere (the hair on my head is normal). She seemed surprised that my pilo was getting more active instead of less. She said she couldn't do anything yet because of the infection, so I'm currently on a course of Keflex and I'll see Dr. Schatz again next week.

So, on the fourth day after seeing Dr. Schatz, just as the Keflex was really kicking in and I was feeling better, I felt a new discomfort higher up, at the very top of my butt crack. It was bleeding and very sore. It felt like a blister to me when I touched it, but of course, I couldn't actually see it. My husband said it looks like a small split in the skin. Kind of deep. It's directly in line with the dimple, but about 1 1/2 inches higher up. What in the world? I'm trying to figure out if this is just another manifestation of the whole pilonidal situation or something concurrent but unrelated. Has anyone else had this kind of symptom in addition to the more obvious pilo stuff?

Dr. Schatz said that in my case, the surgery will involve a deep incision that will be up to six inches long and will be finished with three layers of stitches. This sounds awful and painful, but she said the healing is faster than the surgery where a gaping hole is left to heal from the inside out. She made it sound like she's expecting to find a lot of tunnels in the sinus. Or something like that. This is all freaking me out. Still, the skin-split hole is painful, so I was wondering if it's common for this to happen in addition to the weeping dimple hole. Ugh. This is all so nasty.
 

HappyPhantom

Very Helpful
Hello, Glinda!

I don’t have any input regarding your new additional symptom with the small skin-split hole near your original sinus - but my educated guess is that because it’s in the same area (generally speaking) and at the same time, it’s connected somehow to your pilonidal cyst. There’s a lot going on under the skin and it’s not the most forgiving area in the first place.

On one occasion, I did have a little discomfort and pain in a new spot on the other side of my cyst (on the...uh, other cheek) but it resolved and never gave me any more trouble. May not be the same thing, but my point is that the area is under a lot of stress and lots going on under the surface and not many other conditions affect this particular part of the body.


That’s interesting what your doctor said about some cysts burning themselves out a long time. I’m a 45 year old woman and I’m really hoping mine sort of gives up the ghost in the coming years. But one thing I do know for sure: there does not seem to be any rhyme or reason (beyond a few patterns regarding food, clothing and behaviors that I’ve been able to detect and adjust) to why, how and when these cysts act up the way they do. It’s the strangest thing!

I have a quick tip for you in case you haven’t tried it yet (and this is my official “broken record” line - haha!) but resting with a heating pad on the area is SO soothing and helpful.
 
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Glinda

New Member
Hello, Glinda!

I don’t have any input regarding your new additional symptom with the small skin-split hole near your original sinus - but my educated guess is that because it’s in the same area (generally speaking) and at the same time, it’s connected somehow to your pilonidal cyst. There’s a lot going on under the skin and it’s not the most forgiving area in the first place.

On one occasion, I did have a little discomfort and pain in a new spot on the other side of my cyst (on the...uh, other cheek) but it resolved and never gave me any more trouble. May not be the same thing, but my point is that the area is under a lot of stress and lots going on under the surface and not many other conditions affect th


That’s interesting what your doctor said about some cysts burning themselves out a long time. I’m a 45 year old woman and I’m really hoping mine sort of gives up the ghost in the coming years. But one thing I do know for sure: there does not seem to be any rhyme or reason (beyond a few patterns regarding food, clothing and behaviors that I’ve been able to detect and adjust) to why, how and when these cysts act up the way they do. It’s the strangest thing!

I have a quick tip for you in case you haven’t tried it yet (and this is my official “broken record” line - haha!) but resting with a heating pad on the area is SO soothing and helpful.
Thank you for the thoughts. Believe me--my heating pad hasn't had this much of a workout in years. My husband is trying to convince me to take sitz baths, but I immediately get bored sitting in the tub.
 

HappyPhantom

Very Helpful
Yes the baths were way too much for me too. That was my go-to method until I switched to the heating pad. I just don’t have the time or patience for the bath and it never really made enough of a difference.

I’m glad you found this website and community - there’s so much good information on here and it definitely helps to know we are not alone. It has becoming increasingly clear how common this condition actually is.
 

Glinda

New Member
I went back to the doctor today for my post-infection follow-up. It turns out, the little cut was actually one of three new tiny holes from the sinus and the bruise that showed up last week is somehow related. The doctor said all of things I have going on back there are part of the same problem. She also said my pilonidal situation is "complex" as the main dimple/draining area is not a typical presentation in position or type. Whatever that means. I can't see it; I don't know.
Surgery is coming up in two weeks.
 

HappyPhantom

Very Helpful
Well - I’m glad it’s all getting handled so quickly. Sounds like it’s not something to mess around with!

I hope the infection is calming down so you can get some relief in the next two weeks. Wishing you heaps of good luck!
 

Glinda

New Member
Thanks for your kind words and encouragement, HappyPhantom. I appreciate it. This is a really lonely road, as health conditions go.
 

HappyPhantom

Very Helpful
You’re most welcome! think I can speak for many people in this community when I say that it’s why we are all here: it is so good to speak with other people that know what this health condition is like. You’re right, it’s a lonely road - but not one that you are walking alone.

I’ll be rooting for you when you go in for surgery and I’ll be interested to hear how you do. I’m sure there are folks on here that can provide helpful tips and tricks for post-surgery care - I don’t have any of that, but I am certainly here for moral support!
 

blue.sunshine

New Member
Thanks for your kind words and encouragement, HappyPhantom. I appreciate it. This is a really lonely road, as health conditions go.
Hi Glinda & HappyPhantom-
I too have a PC, recently discovered. I'm F in my late 30s. I also feel I may have had mine for a few years, just unknown to me. Mine felt like dull sore/bruise & would come & go. It never appeared on the surface until this year & that's when I started researching & found a name for it.
Long story short- Glinda: please make sure you are fully aware what procedure your Dr. is planning to do (open excision, closed excision, cleft lift). I recommend also asking their experience doing such surgeries (pilonidal). I have found that (although new to discovering I have one), it seems like quite a complex & misunderstood condition. I also feel that not all Drs are equipped to treat it surgically, & some surgeries can cause further complications. That area of our bodies is tricky to heal, as well as one of the most used areas. I am not trying to sway your or anyone's decision to move forward into surgery, I am only recommending you take time to make sure whomever treats yours is very specialized in doing so, and you are aware of how the healing process will look.

I am lucky to have found ways to keep mine calm once I start to notice a flare-up, but also feel I will likely need some kind of surgery in the future if I want it gone. I have just seen & heard too many horror stories of unhealed surgeries, recurrence, & issues. Again, this is just my opinion. But being so new to discovering mine, I have researched a lot on the subject & want to make sure I don't rush into anything. Point being I even had a colorectal surgeon tell me he would not operate on mine saying he might make it worse. I wish there were more specialists who treat these & less invasive surgeries such as laser, etc. This is just my 2cents. I am possibly considering a cleft lift surgery, but also want to take my time finding the right surgeon & make sure it's the route for me. I cant speak for you or anyone...so I hope you don't take my post personal. There's also an awesome Reddit blog you can check out that is more active than this website, if you want to hear from others & see their status (the link is down below.) I agree that having support from others who are going through this is so helpful! I wish you both luck with whatever you decide. Feel free to email if you want, I check on here every couple days or so. Or find me in Reddit
 

Glinda

New Member
Hi Glinda & HappyPhantom-
I too have a PC, recently discovered. I'm F in my late 30s. I also feel I may have had mine for a few years, just unknown to me. Mine felt like dull sore/bruise & would come & go. It never appeared on the surface until this year & that's when I started researching & found a name for it.
Long story short- Glinda: please make sure you are fully aware what procedure your Dr. is planning to do (open excision, closed excision, cleft lift). I recommend also asking their experience doing such surgeries (pilonidal). I have found that (although new to discovering I have one), it seems like quite a complex & misunderstood condition. I also feel that not all Drs are equipped to treat it surgically, & some surgeries can cause further complications. That area of our bodies is tricky to heal, as well as one of the most used areas. I am not trying to sway your or anyone's decision to move forward into surgery, I am only recommending you take time to make sure whomever treats yours is very specialized in doing so, and you are aware of how the healing process will look.

I am lucky to have found ways to keep mine calm once I start to notice a flare-up, but also feel I will likely need some kind of surgery in the future if I want it gone. I have just seen & heard too many horror stories of unhealed surgeries, recurrence, & issues. Again, this is just my opinion. But being so new to discovering mine, I have researched a lot on the subject & want to make sure I don't rush into anything. Point being I even had a colorectal surgeon tell me he would not operate on mine saying he might make it worse. I wish there were more specialists who treat these & less invasive surgeries such as laser, etc. This is just my 2cents. I am possibly considering a cleft lift surgery, but also want to take my time finding the right surgeon & make sure it's the route for me. I cant speak for you or anyone...so I hope you don't take my post personal. There's also an awesome Reddit blog you can check out that is more active than this website, if you want to hear from others & see their status (the link is down below.) I agree that having support from others who are going through this is so helpful! I wish you both luck with whatever you decide. Feel free to email if you want, I check on here every couple days or so. Or find me in Reddit
My understanding is that the doctor is doing a closed excision. A 4-6-inch incision closed with three layers of stitches. She said healing will take about a month. She said she has been doing pilonidal surgeries for 20 years and she does a lot of them. She also said she does a lot do-over surgeries for patients who say other surgeons but had a recurrence.

I have had to learn a lot very quickly. I wasn't aware of pilonidal sinus disease until now. I told the doctor I could never feel a cyst lump anywhere--and I tried. After she examined me, she told me that with pilonidal sinus disease, the whole sinus gets infected and there may not be a cyst in the usual sense. She told me there's nothing typical about how my pilonidal situation is presenting. She will remove the entire sinus, which she has predicted will be quite extensive, but she also said this should be it--no more infections or cysts. She said open-wound healing is often problematic, so I will be stitched up.

Thanks for the reddit suggestion. The photos are freaking me out, but there is lots of good discussion there.
 
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