Advice on types of Dr's & treatments ? In Pennsylvania or in general?

blue.sunshine

New Member
Hi to all ! I am a new member to this website & prior to becoming an active member, have read multiple posts from the people going through this journey from this site & it has been very informative. I live in Pennsylvania (closer to Philadelphia than Pittsburgh). I personally believe I have had a Pilonidal cyst for perhaps a year, maybe 2, maybe even longer? I never knew what it was. It was never a giant abscess or super swollen, although I do recall a time about a year ago that some nasty fluid leaked from it once (it wasn't a lot). It actually became unnoticeable for awhile after that. I always thought it was just a sore, or from a bump/bruise. My job is active, as I am. I have been an avid bicyclist for many years, & looking back, feel that may have caused it. I have no thick hair or anything, but my cleft is deep. I guess I am fortunate in a way b/c my cyst was never as bad as what I have seen with what this disease can do. Long story short, I am seeking any local medical advisors who specialize in Pilonidal cyst treatment. I am unsure if I want to get any major surgeries; I would rather just have it looked at, gauge all options, & go from there. I know there are multiple routes to treat it: pit-picking, minor incision, the cleft lift, even laser surgery I have heard.

I have gone the last year or so with no issues. Maybe some occasional itching/soreness, but that's been it. Within the last few weeks I have noticed it flare up & become more sore. I will likely attribute that to the summer heat. It is now more of a open sore/wound than a cyst. It was only then I started researching it to come to find out it is likely a Pilonidal. It still does not seem to be fluid filled or anything- more like just a thin lump with a sinus? I never recalled the sinus before this year either. I would have to assume that the lump is the debris/hair? I have no idea. It's raised a bit, but flat. I have been using tea-tree oil, witchhazel, & aquaphor on it. It seems to help alleviate it a bit, but from what I've read these things do not just go away.:oops:

I have a Dr's appt w/ my PCP next week, but I feel he will not have expertise in this matter. I thought about going to a dermatologist instead? As I have seen so many times from many going through this, it seems like a lot of Dr's just lance it or go at it recklessly. I don't want to just have someone with no experience hack away at it. I am trying to be proactive b/c it's definitely more noticeable & bothersome than ever & I don't want it to become an abscess or get worse. Again, regardless of perhaps having this bugger for a bit, I am new to it in the sense of actually putting a name to it.

I do have concerns with my job, as it is active. I would not only prefer minimal invasive anything in regards to healing (I am late 30s), but mainly b/c I probably will not be able to take off work for months.

Do you guys know from experience what Drs to seek for opinions? Dermatologists? Plastic surgeons? I saw the posts in here for Dr. Caplan & Dr. Rosengart in PA. I do have some fears surrounding just going to anyone b/c part of me is hopeful I may even be able to live with it if the sinus/sore heals over? I don't want to go to any Dr's who just push surgery, esp the type that takes months/years to heal. I am at a loss & hope my PCP can give me some guidance, but am skeptical that he will just send me off to any old plastic surgeon.

Any advice would be appreciated on how to navigate this. I hope everyone is well & for those that posted here, thank you. It would be cool to hear updates as well. I will try to insert a pic here to show what I am working with....thanks in advance.
 

blue.sunshine

New Member
Update: PCP said it is a Pilo & referred me to a colorectal surgeon. I'm also going to get a 2nd opinion from a Pilo Treatment center via video consultation. I'm taking all their feedback w/ a grain of salt. I know for a fact I will either have to be in excruciating pain, have multiple recurrences in a short span of time, or be 110% convinced that any surgery (& the right one) is necessary if I go that direction. So far, I am treating it topically & ramping up my diet. I do feel, even though it never fully flared up into a full blown abscess, that it still was infected & drained a bit. It feels much better these last few days.

Outside of all this research & learning about it, I feel that (for me personally) accepting it was one of my biggest hurdles thus far. I have. And now I am ready to face it. I have discovered a great deal of tips to manage it in the last week, some from here & some from other sources.
One of the best sources/tips I came across was to treat it with acne face wipes (OXY/ Stridex). They must have salicylic acid. I got the 0.5% ones by Stridex which also has witch hazel & aloe. Within 2 days of using these wipes, boom...my area has calmed down & stays dry. The dull pain has subsided dramatically. I am now convinced moisture is the enemy for that area, even if that comes from the form of sticky ointments. I have stopped using the Aquaphor & only use liquid type ointments that evaporate fast. I still dab some Tucks medicated wipes too, as these soothe the area. I make sure to use both the Stridex & Tucks on the pits & the sinus. It makes sense after understanding the makeup of the cyst itself, which is supposedly caused by clogged pores. I also purchased a sitz bath & take 1 daily. I use Epsom Salt in the sitz & it eliminates the need to run a full bath just to get 20 minutes of relief.

I also purchased some Boiron Calendula Gel, which is a marigold healing ointment. It is clear, watery, & alcohol based. It is known to heal problematic wounds. I am upping my lean protein intake, drinking more teas than coffee (Echinacea & Turmeric), lots of water, & fruit smoothies daily. I have a fairly decent diet already, but just now am targeting more of these to fight off the infection. 2wks ago I was feeling sluggish & slightly ill due to the infection...now I feel like my normal self again.

I'm still early on in this, so who knows. I just have to take it day by day as we all do. I'll update again after my consultations but just wanted to share. I know we're all in different phases & situations, & I believe I'm coming through from a minor flare-up that forced me to acknowledge & discover what this even is, but I feel this may be able to help others who may also be coming out from a flare up/infection. I feel very fortunate that I am coming through this episode & feeling well enough to research more. My goal is to monitor it, manage it, & hopefully keep it at bay. Depending what that looks like, I'll re-route my direction as necessary. Take care all;)
 

Glinda

New Member
Blue, I was also recently diagnosed. At first, I thought, no, this is an awful thing. I don't want surgery. I tried to talk myself out of it, but as I thought about it, I came to realize that I've had this problem for years--I just didn't know it was a thing. This last flare up was seriously painful and the infection made me feel nauseated and overall sick. I did a lot of research and made an appointment with a colo-rectal surgeon as that seems to be the kind of doctor who addresses this particular condition. She immediately confirmed the diagnosis but then said that at this point, I was beyond conservative approaches and surgery was really the only option.

I thought about putting it off, but that seems like delaying the inevitable. As weird as the pandemic has been in disrupting normal life, it has made this the ideal time for me to have this surgery. Right now, I'm working from home, my workload is really light, and for the time being, I'm employed and have insurance.

All of that being said, I have slipped into a significant depression about this. The surgery, the pain, the post-op time to heal, the expense...sigh. Sad.

I hope you find a good doctor where you are and all goes well. It looks like you've found someone, but if you're still looking, look for reviews of colo-rectal surgeons who do a lot of anal fistual surgeries. If they do that, they will also know how to competently approach pilonidal sinus.
 
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