JasonF

New Member
Hi There

I’m new to this forum and very scared. I have just started getting pilondial cysts in the past year. I’m in my 30s and never had them before in my life.

Anyway I had what I thought was a cyst removed by my dermatologist but it turned out to be a growth caused by overgranulation. I ended up getting 3 stitches and was washing the area daily and applying Vaseline to keep it clean. I would then put on a fresh bandage daily.

I stupidly (in hindsight) went ahead with a colonoscopy screening I had scheduled while my stitches were still in. I’ve been told that the wound is now infected and I’ve contracted enterococcus.

My dermatologist assistant called me at 4pm on a Friday to tell me this, and asked me to pick up Ciprofloxacin to treat the infection. I’ve started taking it but I’m worried because I don’t even know what strain of the infection I have. Research I’ve done also suggests that this antibiotic isn’t very effective in treating it. It also has deadly side effects. My dermatologist’s office is closed until Monday and I’m really worried.

Has ANYONE ever dealt with anything like this before? I can’t find anything online about it in terms of forums or people’s personal stories.

I’ve read that this infection can spread throughout your body and kill you. My dermatologist’s (see you on Monday-take the antibiotics) advice isn’t very reassuring.

Can anyone help here? I’ve also heard it can spread easily, should I even be going to work? Sleeping with my girlfriend? I’ve been wiping down everything and keeping the area covered with a bandage and clean but I’m still very paranoid.
 

r4nd0o64

Very Helpful
I'm not a doctor but I don't think you're going to die from Enterococcus in the next few days. You're taking a antibiotic that has shown it can fight that type of bacteria, sure there is strains that will resist cipro, but you don't really know which strain currently.

As for it spreading easily, you would have someone who also has some opening on their body touch your opening on your body or something like that.

Just take your prescribed antibiotics and call the dermatologist in the morning. Once you finish your course, they should be taking a blood culture to make sure the bacteria is gone.
 

JasonF

New Member
Thank you so much for the response! I just feel like I am in total limbo since I don’t know the strain and I can’t ask any questions. I’m assuming they did a susceptibility test on the biopsy to see which antibiotic would be most effective but I don’t even know.

I did an online video consultation with a doctor and he said that I shouldn’t panic. It’s possible that the enterococcus has “colonized” the wound and is present but that doesn’t mean I have an actual infection.

When she took the stitches out she did say the area looked like it was healing. However she did mention the granulation tissue looked like it was trying to come back. (This has happened over and over again) so she put some silver nitrate on it. It’s been weeping a little but it doesn’t look super angry or agitated and I’m not in any pain. There hasn’t been any puss or yellow/green liquid coming out either. Just some small amounts of blood.

I’m most concerned because I had that granulation tissue build up on my tailbone honestly probably for like 6 months or maybe more before deciding to get it removed or biopsied. I thought it was just another pilondial cyst and the ones I’d gotten in the past always went away on their own. I had it looked at to make sure it wasn’t cancerous a long time ago but didn’t get it removed or biopsied until recently.

So now im wondering....is it possible I’ve had enterococcus for 6 months? Or did I truly only get it a few weeks ago when I had the granuatlion tissue removed and the stitches put in.

I’ve been having other symptoms for honestly a long time that I haven’t been able to explain....including lower back pain, frequent urge to urinate etc. I had a ton of tests done on June 18th. All my blood work came back good and my urine sample should no trace of a UTI...but that was a few weeks ago. Is it possible I’ve gotten one since? I have an appointment with a urologist to investigate but it’s not for weeks.

I’m freaking out that the enterococcus has spread to my body and is damaging my organs. I really wish I could just check into a hospital and get put on one of the drugs that actual works for killing it instead of wasting time with cipro first.

Did I also mention my bachelor party is supposed to be this weekend? So much for that. I’m thinking I just won’t go. They’ll still have a good time without me. :)

When I asked about cipro, the doctor I got a second opinion from said that it won’t work...so I was like...can I take a break from it for two days for my bachelor party? He said no because then it won’t work to treat the infection...but he had already told me it wasn’t going to work anyway. Lol

I’m just going to continue taking it and hope for the best. Thank you so much again for the response. I feel like the only person dealing with this since there is very little on forums about it. I have no idea how I even got the infection, I was so diligent with cleaning everyday, applying Vaseline and putting on a fresh new band aid.
 

r4nd0o64

Very Helpful
So now im wondering....is it possible I’ve had enterococcus for 6 months? Or did I truly only get it a few weeks ago when I had the granuatlion tissue removed and the stitches put in.

I think you would of found out much earlier if you had it for 6 months (probably would of gotten tons of fevers, nausea, and other common symptoms of enterococcus). It sounds more likely you got during your surgical procedures, which is a common place to get bacteria like this.

I’ve been having other symptoms for honestly a long time that I haven’t been able to explain....including lower back pain, frequent urge to urinate etc. I had a ton of tests done on June 18th. All my blood work came back good and my urine sample should no trace of a UTI...but that was a few weeks ago. Is it possible I’ve gotten one since? I have an appointment with a urologist to investigate but it’s not for weeks.

Lower back pain and frequent urination don't necessarily sound related (but I'm not a doctor). You had your tests a month ago (including blood/urine) that were fine, so I doubt anything is spreading.

When I asked about cipro, the doctor I got a second opinion from said that it won’t work...so I was like...can I take a break from it for two days for my bachelor party? He said no because then it won’t work to treat the infection...but he had already told me it wasn’t going to work anyway. Lol

Well now you're getting conflicting recommendations from medical professionals. I would continue this course of antibiotics, wash your hands a lot, stay clean. I think you still can go to your bachelor party (I'd avoid drinking).

Monday call your dermatologist and also call your PCP to get another opinion.
 

r4nd0o64

Very Helpful
Keep in mind its easy for your mind to jump around and feel like you're current condition isn't being treated with the severity you think it deserves (trust me I've been there for other things)

But what is important is to stay stress free and follow the doctors instructions (if this doctor isn't dealing with right, get a new one).
 

JasonF

New Member
Hopefully you are right that I only contracted it when I went to the hospital. Everyone I’ve spoken to said it’s prettt unusual for someone to get it who isn’t hospitalized or who wasn’t at the time of infection.

I looked at it today and the area where the stitches were seems to be healing nicely. Unfortunately the hypergranular tissue is now trying to grow back next to where the stitches were (over and over again.) It’s extremely persistent despite having being treated with silver nitrate twice. A part of me admires it’s resilience. For something that is supposed to be infected though, it doesn’t look super angry, there’s no pain and there was no blood when I took off my most recent bandage which had been on for almost two days. (I’ve been told to try and keep them on for a few days at a time to dry out the wound)

If the infection hasn’t spread beyond the wound, then my understanding is that I’d be rid of it once the wound heals over completely?

Unfortunately it doesn’t look like that’s going to happen. Before this I hadn’t needed to go to the doctor since I was in my teens. With this trying to grow back over and over again, I hope I don’t end up being in a vicious cycle of being put on one antibiotic after another.

Regardless, thank you for taking the time to respond. It means a lot to me. :)
 

r4nd0o64

Very Helpful
Hopefully you are right that I only contracted it when I went to the hospital. Everyone I’ve spoken to said it’s prettt unusual for someone to get it who isn’t hospitalized or who wasn’t at the time of infection.

Weren't you in a "hospital setting" for your colonoscopy and your cyst removal?

Unfortunately the hypergranular tissue is now trying to grow back next to where the stitches were (over and over again.)

Granulation isn't always a bad thing.



No point in continuing this back/forth, you're just gonna get too stressed. Tomorrow you can start the process of seeing your dermatologist and PCP and getting their opinion.
 

JasonF

New Member
Update - So I went back to my dermatologist this morning.

Basically she said the lab didn’t bother to specify what strain it was. She also said that they didn’t do any antibiotic testing to see which antibiotic would actually be able to treat it. Then she said it doesn’t really matter what strain it is, finding out what antibiotic works is the most important thing. (I mean I get that but they didn’t do either of those things)

I explained that I had done a lot of research and couldn’t find ANYTHING online that recommended the use of cipro for any strain. She got very defensive and tried to continue to justify her logic. So since the lab messed up, they took another sample which they are going to send to a different (hopefully better) lab.

I’ve been instructed to keep taking the Cipro despite the risk of the very bad side effects and it’s lack of effectiveness in treating this infection. Seems very high risk, low potential reward to me.

I’m very frustrated, I feel like we’ve lost a week that could have been spent taking something that will work. I also went back and did another urine test despite the one two weeks ago coming back negative.
Waiting for those results anxiously too.

She said that the area where the stitches were has healed completely and looks really good. In terms of the granuatlion tissue that formed to the right of the stitches, (where the entro test came back positive) she said she couldn’t tell by looking at it if it was infected or not. No pain, no bleeding....and there doesn’t seem to be any angry looking green or yellow puss.

So shockingly I made no progress today. Have to wait until Thursday to hear more.
 

r4nd0o64

Very Helpful
Sorry to hear

I’ve been instructed to keep taking the Cipro despite the risk of the very bad side effects and it’s lack of effectiveness in treating this infection. Seems very high risk, low potential reward to me.

I've seen the bad side effects first hand, friend couldn't walk for 6 months because of this drug. However there are millions of people who take this drug and it helps them with little side effects. It is easy to focus on the negatives, try to be positive.

I’m very frustrated, I feel like we’ve lost a week that could have been spent taking something that will work. I also went back and did another urine test despite the one two weeks ago coming back negative.
Waiting for those results anxiously too.

I think your concern is justified, I want to say that. However I want to say, you're ok. It's not like you're doing nothing about it. Cipro is not the first choice for this type of bacteria, if you're googling. That being said studies like https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685639/ show that almost half of the infections were resistant to cipro with "certain" risk factors. However all that means is you have a 50% chance of it not being cleared and if it doesn't they will put you on a stronger antibiotic.

Keep in mind you have two things trying to fight the infection, your immune system and cipro. You may not have the other risk factors that warrant using vancomycin for example.

With that all being said, I assume you have a primary care physician, it cannot hurt to get their opinion. For all we know the dermatologist has never treated this type of bacteria and is just starting you on cipro to avoid giving you the tougher stuff.
 

JasonF

New Member
Hey! I wanted to provide an update here. I stopped taking the cipro after experiencing swelling in the tendons underneath my kneecap. I also had some episodes where I lost some motion in my left leg and it stiffened up.

Thankfully this cleared up after I stopped taking the Cipro. This drug should definitely only be a last resort for people. Be warned!
So we did another biopsy, it showed light growth of enterococcus faecalis. They did susceptibility testing and found that penicillin and vancomycin were most likely to be effective. So I was prescribed amoxicillin for two weeks.
I was also referred to an infectious disease
specialist.
(Very embarrassing but he was great.)

He took one look at the area, he said it looked more like a pilonidal cyst. (That’s what I thought it was to begin with.)

He asked me if it was tender or sore and I told him it wasn’t. He commented that it looked dry, with no bleeding or puss. He pushed down hard on it and asked me if it hurt when he did it. (It didn’t)

He took a skin sample and did a third biopsy. He said that in his opinion it definitely wasn’t infected. He said it might be colonised with enterococcus, but there’s a difference between colonisation and infection. He was baffled that I was prescribed cipro, and even questioned the fact that I was then put on amoxicillin, commenting that you really shouldn’t take it unless you have an active infection which I did not. I finished the course anyway since I had already started it.

The result of the third biopsy came back yesterday and it indicated that the enterococcus was gone after taking the antibiotics.
Great news, but they still want to remove the cyst (again) which makes me nervous because that means another open wound, which means another chance it will get infected again.

I can’t really see the upside....everything I’ve seen on here says that if you’re prone to getting these cysts, they’ll come back over and over again regardless of how many times you get it removed. (I’ve already had it removed once and it came right back straight away.)

So right now, the enterococcus is gone which is great. My dermatologist still insists it’s not a cyst. I went to see a second dermatologist today, he said it’s a cyst for sure. For whatever that is worth.

Thank you for all your support and for being a sounding board. It was super helpful. :)
 
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