New to pilonidal and navigating health care in Prague, Czech Republic

pilonidalprague

New Member
Hello, to summarise my pilonidal story so far:

I am 23 years old, and female but I have PCOS which causes excess body hair so my butt looks like a dude's. I'm from the UK but I've been living and working in Prague, CZ since September 2013, and I'm still learning how the Czech healthcare system works. I have Czech health insurance but I speak very little Czech, so finding and accessing doctors is not always easy.

I first had painful swelling near the top of my natal cleft, on the right cheek back in June. When my cheeks are closed, you can't really see any problem. I assumed it was cystic acne, which I get in all sorts of places thanks to PCOS. The swelling didn't go away though, and eventually it started draining small amounts of pus. I put up with it and never showed it to a doctor because it was small, and also up until the beginning of November I was dealing with a (thankfully benign) gynaecological lesion which had to be removed so that took precedent in my mind. Once that issue was dealt with, I saw a surgeon at a walk-in clinic one morning in November. The surgeon drained the abscess and put a dressing over it, there was no packing because the draining did not leave a hole. I went back to have it cleaned a couple of days later, and then it began to heal. It was fine for a few weeks after that, then just before I was due to visit home for Christmas, the abscess flared up again. I returned to the clinic and had it drained for a second time, and the surgeon told me in his limited English that it was a recurrent problem and I would need "big operation in hospital" to remove the internal infection. I will say that he did not use the term pilonidal sinus, but it's clear from what he did say that this was the diagnosis. Afterwards, I found out more about the condition using this website and other sources online.

When I went to the UK over Christmas, I had the wound cleaned and checked twice by a nurse practitioner, who also gave me antibiotics, which I took still hoping that I could avoid surgery. I could not get a doctor's opinion because there were no appointments available.

Back in Prague, at this moment in time the abscess seems to healing still, it is not swollen or draining, and just looks like a greyish mark, but I still fear it will flare up again. Aside from that, I have pain in my tailbone if I press on it (sitting down is not painful though), and a red line running down the natal cleft with a tell-tale dimple in it.

Basically, at this point, I am not sure what to do. I really don't want a "big operation" as the clinic surgeon said, because the surgical options look scary and I cannot afford to take a lot of time off work. I also have little idea who to approach here in Prague or where the good Colorectal surgeons are. Within the next few months I will be having all 4 of my impacted wisdom teeth removed, which will be bad enough and require time off. At work we are banned from taking time off from January-March and from July-September because we are so "busy". I worry about taking time off ill because I feel it makes me look bad. Part of me would love to just go home and spend a few months getting this sorted on the NHS, but I really don't want to give up my life here.

I guess my main question is - is it ok to wait for now and see what happens? Reading the resources here, it seems like surgery is not always a must. Also, if anyone else here is in the Czech Republic and has any advice, that would really helpful.

Thanks for taking the time to read this.
 

Robert Eden

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Works bans you rom time off for health reasons 6 months out of the year? Wow...

Yes, you can put off the surgery, but it can make it worse over time. (I myself put it off the first time). Antibiotics may help reduce a flareup.

No idea about Czech docs, but if you can go back to the UK, there is a Pilonidal Center of Excellence I've read about in Portsmouth. You can find details by searching the forum. They only do cleft lifts, which should minimize the amount of time you're off work.
 

pilonidalprague

New Member
Thanks for the reply.

Yes, it's quite draconian. I mean, you can be ill and take time off sick (which comes out of your holiday allowance, there's no separate sick days), but if it's anything planned like elective surgery then they don't like it during the busy times.

It's actually got worse since I posted this yesterdays - I woke up with new swelling in the middle of the natal cleft, and I can feel where it's tracked under skin from the initial abscess to the new one.

Reading about the centre is Portsmouth sounds great, although I'm not sure how I'd manage it logistically. It's good to keep in mind though, thanks. A cleft lift also looks and sounds preferable to other surgical options, so if I can find someone to do that here in Prague I would be happier than with an open wound procedure.
 

Justin123

New Member
I don't want to upset you, but I think you should get used to the thought that you will need surgery sooner or later. It's your health and it's important. Regarding the waiting time - there are various opinions. Some people say that the earlier you get rid off it - the better. But it's not the matter of days or weeks. If you don't get flare ups frequently and you can live with it without considerable discomfort - I think you can plan the surgery a bit later. If the flare ups are frequent or constant - you might have to think about the surgery sooner than you would like to.

I had a PC about five years ago, the surgeon postponed the surgery for about a month, I had a closed excision. The surgery went well, I had no complications. This winter the cyst came back. I have small flare ups about once a month. Sometimes once every two months. I will try to postpone my surgery to this autumn.

You have many surgical options, most people will recommend cleft lift, but not all doctors do this type of surgery, it would be better to discuss everything with the doctor beforehand.
 

pilonidalprague

New Member
Thanks for your reply and advice. I am considering seeking surgery this year, but I am still thinking that maybe surgery and its after effects could actually be worse than living with the cysts. Especially if I go through weeks of bother, and then it just comes back again. As of now, the swelling I have seems nowhere near as bad as the cysts I've read about it which have people crawling into hospital. But still, I don't want to spend forever not being able to sit comfortably due to constant infections. So, surgery is on the cards, but not until Spring at the earliest. Thanks again!
 

Robert Eden

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The after affects of the cleft lift (for me and the vast majority of people) are trivial compared with an active PA. I had almost no pain, just a little drainage. When you read the horror stories, be sure to separate those with excision and a cleft lift.

I don't remember anyone regretting getting a cleft lift.
 

Justin123

New Member
The reoccurrence rates after cleft lift surgery are very low. It's not 100% guaranteed, but it has much better chances than other types of surgery. Good luck!
 

Jojo55

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My son had the cleft lift , and was in no pain at all ! The drain caused some uncortable feelings , but once it was out he was like new better then new !
The pain from the cyst /abscess and tailbone pain when sitting was much worse then the surgery ! But I would not consider any surgery except the cleft lift
 

just_tessa

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Thanks for your reply and advice. I am considering seeking surgery this year, but I am still thinking that maybe surgery and its after effects could actually be worse than living with the cysts. Especially if I go through weeks of bother, and then it just comes back again. As of now, the swelling I have seems nowhere near as bad as the cysts I've read about it which have people crawling into hospital. But still, I don't want to spend forever not being able to sit comfortably due to constant infections. So, surgery is on the cards, but not until Spring at the earliest. Thanks again!
Hi. I just wanted to ask if you maybe found someone to do the cleft lift in Chech or Slovakia or anywhere near? Also, how have you been doing? Thank you for a possible reply.
 
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