31 year old male with pilo

Jake001

New Member
Hi there,

I have suffered from a pilonidal for a while now. When it’s been bad or I have been researching I have always come to this site for guidance and thought I would share what I have been through.

I first had a flare at age about 25. I have what I think is one pit and quite a small superficial tract and abscess maybe about the size of a large marble when it’s bad. It flared up and went away a few times a year, because it was so superficial it just popped like a spot discharged and healed. The whole process lasted about ten days and maybe happened three times a year. I was referred to a surgeon who suggested doing a flap procedure or possibly leaving it and seeing how it goes. If it wasn’t bothering me then I could opt for the latter.

I am a gay male and so probably have a more invested interest in how my ass looks, so wasn’t too keen on the flap to be honest. Given how small the disease was I thought it was a bit extreme.

Over the years it has probably flared more and more frequent. I noticed it had become larger than ever before, about the size of a golf ball. It also felt much deeper and didn’t discharge. It was beginning to affect my life quite significantly and I felt I should probably do something about it.

Over a year a go I asked my GP to refer me to Mr Lund to see if I would be a candidate for fibrin glue, he seemed to be the only person who does it in the U.K., and from reading all he has published on pilonidals seems to be not only very knowledgable about the disease but also keen to improve surgical outcomes with less invasive procedures.

After about 6 months of waiting I called up to chase the referral. I know it’s not urgent but thought this was probably long enough. I was told I did not attend my appointment. I was furious (internally). I had not received anything in the post and would absolutely not have DNA’d an appointment, I think anyone who has one of these knows how desperate you can get when it starts getting bad, and your just trying to get through things waiting for that appointment. Anyway I now needed to get a new referral. My GP did this for me and then COVID happened so everything has sort of been put on hold. I checked in with the department last week, to make sure I wasn’t going to be assigned an appointment and miss it. Have been told they have the referral but no date set and will most likely be a very very long wait.

I found discussing it with my GP to be an absolute nightmare. I think they mean the best when they want to refer you to somewhere more locally, but don’t appreciate that not all surgeons deal with this well and it might be a bit of a sensitive area for some.

it’s currently flaring up again the last couple of days. Bigger, deeper and more painful than ever before. I’m considering weather to go to A/E atm and will see how the night goes. I’m really worried with each flare the disease is getting bigger forming new channels and cysts. Maybe this is irrational but that’s what it feels like.

I just feel a bit hopeless with it all and the NHS how it currently is. I have thought a lot about trying to see if I can get it done privately and have applied for a loan. Not sure if I it will get approved.

This isn’t a particularly helpful post, I just needed to rant a bit about it. I haven’t told anyone I have this, so decided to just post on here... anyway at some point in the future hopefully I can post a happy update. But for now, fuck pilonidal abscesses!!!!
 

6yearwonder

New Member
Hey I know your pain I’m a woman with this which is rubbish as all the drs think only men get it! It’s really important to get better and have a decent looking bum! I was also going to put in for a referral with John Lund aswell as I was recommended to him from previous patients. You can definitely contact your GP and ask for your referral to be expedited if you feel it’s getting worse with the wait it might help you see him sooner. Also steer clear from A&E is my advice I’ve never had any luck there and they usually waste your time and send you home.
 

oneyear

New Member
Hi there,

I have suffered from a pilonidal for a while now. When it’s been bad or I have been researching I have always come to this site for guidance and thought I would share what I have been through.

I first had a flare at age about 25. I have what I think is one pit and quite a small superficial tract and abscess maybe about the size of a large marble when it’s bad. It flared up and went away a few times a year, because it was so superficial it just popped like a spot discharged and healed. The whole process lasted about ten days and maybe happened three times a year. I was referred to a surgeon who suggested doing a flap procedure or possibly leaving it and seeing how it goes. If it wasn’t bothering me then I could opt for the latter.

I am a gay male and so probably have a more invested interest in how my ass looks, so wasn’t too keen on the flap to be honest. Given how small the disease was I thought it was a bit extreme.

Over the years it has probably flared more and more frequent. I noticed it had become larger than ever before, about the size of a golf ball. It also felt much deeper and didn’t discharge. It was beginning to affect my life quite significantly and I felt I should probably do something about it.

Over a year a go I asked my GP to refer me to Mr Lund to see if I would be a candidate for fibrin glue, he seemed to be the only person who does it in the U.K., and from reading all he has published on pilonidals seems to be not only very knowledgable about the disease but also keen to improve surgical outcomes with less invasive procedures.

After about 6 months of waiting I called up to chase the referral. I know it’s not urgent but thought this was probably long enough. I was told I did not attend my appointment. I was furious (internally). I had not received anything in the post and would absolutely not have DNA’d an appointment, I think anyone who has one of these knows how desperate you can get when it starts getting bad, and your just trying to get through things waiting for that appointment. Anyway I now needed to get a new referral. My GP did this for me and then COVID happened so everything has sort of been put on hold. I checked in with the department last week, to make sure I wasn’t going to be assigned an appointment and miss it. Have been told they have the referral but no date set and will most likely be a very very long wait.

I found discussing it with my GP to be an absolute nightmare. I think they mean the best when they want to refer you to somewhere more locally, but don’t appreciate that not all surgeons deal with this well and it might be a bit of a sensitive area for some.

it’s currently flaring up again the last couple of days. Bigger, deeper and more painful than ever before. I’m considering weather to go to A/E atm and will see how the night goes. I’m really worried with each flare the disease is getting bigger forming new channels and cysts. Maybe this is irrational but that’s what it feels like.

I just feel a bit hopeless with it all and the NHS how it currently is. I have thought a lot about trying to see if I can get it done privately and have applied for a loan. Not sure if I it will get approved.

This isn’t a particularly helpful post, I just needed to rant a bit about it. I haven’t told anyone I have this, so decided to just post on here... anyway at some point in the future hopefully I can post a happy update. But for now, fuck pilonidal abscesses!!!!
i feel you! I’m a 34 y/o male, first time I had a flare was in 2007 and went under the knife in 2008 and was fine until 2014, now 2020 it’s back but in a different even worse spot, had it cut open and cleaned out at Emergencyroom cus I was afraid of blood poisoning, it never healed and now I got another one on the other cheek aswell. I want to have a experienced doc to fix it this time(as I had the first time in 2008). Problem is this issue is not common in Sweden and I’ll really have to look around for a experienced doc. I never told any1 about my issues until 2020, now all my good friends and ppl close to me knows about it. I don’t feel ashamed about it anymore and I feel I have to explain to my good friends why I can’t hang out with em anymore as much as I’d like to. I can be home for 2 weeks at times. How do u guys try to relief the pain at home? I eat ibuprofen and treat with ice and xylocain for the pain, I also eat antibiotics ALOT due to my problems and if it’s really swollen I also eat beta pred. Docs saying only ibuprofen works out of all these but my experiences thought me different.

If any1 knows about a experienced doc in Sweden please send me a pm!

pit picking seems like a procedure that leaves minimal scars etc, check it up! Last time I educated myself about different procedures was in 2008 and it seems they came along way!
 

oneyear

New Member
sry for my bad english, i guess you already noticed its not my nativt language :D I hope you guys can understand me anyways!
 

6yearwonder

New Member
i feel you! I’m a 34 y/o male, first time I had a flare was in 2007 and went under the knife in 2008 and was fine until 2014, now 2020 it’s back but in a different even worse spot, had it cut open and cleaned out at Emergencyroom cus I was afraid of blood poisoning, it never healed and now I got another one on the other cheek aswell. I want to have a experienced doc to fix it this time(as I had the first time in 2008). Problem is this issue is not common in Sweden and I’ll really have to look around for a experienced doc. I never told any1 about my issues until 2020, now all my good friends and ppl close to me knows about it. I don’t feel ashamed about it anymore and I feel I have to explain to my good friends why I can’t hang out with em anymore as much as I’d like to. I can be home for 2 weeks at times. How do u guys try to relief the pain at home? I eat ibuprofen and treat with ice and xylocain for the pain, I also eat antibiotics ALOT due to my problems and if it’s really swollen I also eat beta pred. Docs saying only ibuprofen works out of all these but my experiences thought me different.

If any1 knows about a experienced doc in Sweden please send me a pm!

pit picking seems like a procedure that leaves minimal scars etc, check it up! Last time I educated myself about different procedures was in 2008 and it seems they came along way!
Hey we have a Scandinavia forum here but I’m not sure if there’s much help there but definitely worth a look? You need to be careful with pain killers and antibiotics as too much can make you unwell I’ve had a lot of problems from the amount of antibiotics over the years. Do you sit a lot and do you get holes or cysts and how far down the cleft?
 

oneyear

New Member
Hey we have a Scandinavia forum here but I’m not sure if there’s much help there but definitely worth a look? You need to be careful with pain killers and antibiotics as too much can make you unwell I’ve had a lot of problems from the amount of antibiotics over the years. Do you sit a lot and do you get holes or cysts and how far down the cleft?
Its far down unfortunately, I don’t sit part from on the toilet I stand all days and if I get to tired I go lay on the bed on my stomach. I get got 1 cyst on each cheek, both in a bad spot. What problems have you gotten by the antibiotics and painkillers?
 

6yearwonder

New Member
Its far down unfortunately, I don’t sit part from on the toilet I stand all days and if I get to tired I go lay on the bed on my stomach. I get got 1 cyst on each cheek, both in a bad spot. What problems have you gotten by the antibiotics and painkillers?
Hey sorry for such a late reply! I’ve had lots of bowel inflammation, not sure what’s caused it but anti biotics make me really unwell with my stomach and fatigue and a lot of other side affects. I’ve been on them at least once a month for 7 years and so it can destroy the bacteria in your bowel aswell. If you have a cysts in you actual cheeks that sounds very painful and not like what I have heard or before. Do you get irritation in the skin? Are you draining fluid out of them?
 
Top