5 months later my wound isn’t stable.

Unhappyman

New Member
Hi,

I had a pilonidal sinus excision with primary closure back on Star Wars day May 4th. In the two weeks with the stitches in situ I had an infection which was treated with antibiotics. After 2 weeks my stitches were removed but a portion very close to my anus had not healed. At that point it was 4.5cm deep and around 2.5cm in length.

I was with my UK GP nurses for 4 weeks having daily packings, during which period the wound got shallower but then deeper again.

After the 4 weeks I was moved to a chronic wound clinic. There they started to use smaller lengths for packing and after a 6 week period my wound had closed to the point where it no longer required to packing. I saw my surgeon and he said my wound was superficial.

I went back to work for 3 days a week for 2 weeks and the wound had opened up again at the bottom, a very small hole which was bleeding. I had to see my GP Nurse because the wound clinic already discharged me. By the time the nurse had squeezed all the blood out she had broken down the tissues and left me with a 1.5cm deep wound again.

So I went back to wound clinic for daily dressing. Another 4 weeks and there was no visible hole. I have one week without any dressing over the top, just a barrier cream and my wound now looks infected. In one day i got puss again and it opened up at the bottom. By this point my surgeon has already discharged me form his care despite my wound never fully healing.

I don’t know what to do. My surgeon doesn’t want to help me, my GP can’t help me and having daily dresssing etc just seems to initiate a circle of healing and breaking and healing and breaking.

I would appreciate any advice as I am a 29 year old male who has had the worst 6 months of my life. My 30th is next week and will be ruined and my trip to the USA In 5 weeks will have to be cancelled because I can’t bear to think about sitting for 8 hours and opening up my wound even more. I just want my life back.
 

marvin95

New Member
I would look into getting a different surgery done by an expert, such as the cleft lift. I went through the same process where my primary closed wound failed to heal even after packing for a few months by a wound clinic, must mean something failed. I refuse to get the surgery re-done due its high recurrence so am looking into other options. Try travelling to other places if necessary (am in Canada, considering going to states for it). Good luck
 

Unhappyman

New Member
Thanks for your reply Marvin. Having looked at this forum for about a week it does look like cleft lift is the best rescue operation for failed ops. If I went down this route I could probably get to See Miss Senapati who seems to be the UK specialist. What baffles me is that my current surgeon seems convinced that it will heal.

Having had the antibiotics for a few days the opening has closed again so I will have to see what happens when the course is finished. At the moment I sit down for maybe one hour maximum a day out of pure fear that it will rupture if I sit down for too long. Not what I expected 5 months post op.


I would look into getting a different surgery done by an expert, such as the cleft lift. I went through the same process where my primary closed wound failed to heal even after packing for a few months by a wound clinic, must mean something failed. I refuse to get the surgery re-done due its high recurrence so am looking into other options. Try travelling to other places if necessary (am in Canada, considering going to states for it). Good luck
 

Unhappyman

New Member
Update. The wound has now broken down for a third time and looks infected again. That’s 4 lots of antibiotics in 6 months. And my bloods are apparently okay. I have been washing it twice a day and hair drying the area dry. There must be a channel under the surface.
 

Luke Wade

Very Helpful
Hey Unhappyman

I was in the exact same boat as you had excision with closure, then having it opened and packed. Was told it would heal.. The thing is I waited 7 years to get further surgery as I trusted it would finally heal.. It didn't. Those 7 years really affected me mentally - depression and anxiety, felt completely let down and abandoned by the system.

So I took control of the situation myself and researched the best surgeon for this in Europe: Miss Senapati. Thanks to this forum!

And I've been healed for 2 years now! The new looking bum takes some getting used to but it's not so bad and completely worth it.

I actually checked right in the crack for myself (2 mirrors and awkward position) for the first time in a year a week ago and it looks 100% great. I owe my sanity to Miss Senapati! The surgery is genius.

I advise you get a consultation booked in with Miss Senapati.. Trust me you wont regret it.

Luke
 

6yearwonder

New Member
Hey Unhappyman

I was in the exact same boat as you had excision with closure, then having it opened and packed. Was told it would heal.. The thing is I waited 7 years to get further surgery as I trusted it would finally heal.. It didn't. Those 7 years really affected me mentally - depression and anxiety, felt completely let down and abandoned by the system.

So I took control of the situation myself and researched the best surgeon for this in Europe: Miss Senapati. Thanks to this forum!

And I've been healed for 2 years now! The new looking bum takes some getting used to but it's not so bad and completely worth it.

I actually checked right in the crack for myself (2 mirrors and awkward position) for the first time in a year a week ago and it looks 100% great. I owe my sanity to Miss Senapati! The surgery is genius.

I advise you get a consultation booked in with Miss Senapati.. Trust me you wont regret it.

Luke
Hey did you go through the nhs? I’ve asked for a referral to Miss Seapati. I’ve had extensive PD and 4 failed ops over the last 6 years. Recently my entire wound is breaking down and constantly infected and I’m worried how long the referrals gonna take.
 

Unhappyman

New Member
I called her PA who said she could only be consulted through two private clinics. One in London and the other in Portsmouth. But I managed to get mine sealed up after getting rid of hair and having rigorous cleaning/drying. So I was lucky. I’ve been happy with it for 4 months now (13 months post op).
 

Luke Wade

Very Helpful
Hey did you go through the nhs? I’ve asked for a referral to Miss Seapati. I’ve had extensive PD and 4 failed ops over the last 6 years. Recently my entire wound is breaking down and constantly infected and I’m worried how long the referrals gonna take.

I basically just asked my GP for a consultation with her at Portsmouth Hospital. My GP was actually quite reluctant to do it.. Weird - possibly because of cost. Though she's private In 2017 she was seeing some people via the NHS - I'm not sure what her current arrangement is. I guess she gets paid either way. It's worth pushing for
 

6yearwonder

New Member
I basically just asked my GP for a consultation with her at Portsmouth Hospital. My GP was actually quite reluctant to do it.. Weird - possibly because of cost. Though she's private In 2017 she was seeing some people via the NHS - I'm not sure what her current arrangement is. I guess she gets paid either way. It's worth pushing for

yeah I got told by a registrar at my local A&E that she was at St Marks in London so that’s where we’ve tried to get the referral to. I’m lucky my GP’s been on this journey with me so he was really supportive but it’s really worrying not seeing anyone’s stories with how the process went in getting into contact with her. I just want to get fixed and not have to take another antibiotic or deal with wounds.
 

Luke Wade

Very Helpful
yeah I got told by a registrar at my local A&E that she was at St Marks in London so that’s where we’ve tried to get the referral to. I’m lucky my GP’s been on this journey with me so he was really supportive but it’s really worrying not seeing anyone’s stories with how the process went in getting into contact with her. I just want to get fixed and not have to take another antibiotic or deal with wounds.

It was smooth sailing as soon as my GP sent the referral. Miss Senapati is great, felt very comfortable and looked after in her care.
 

6yearwonder

New Member
It was smooth sailing as soon as my GP sent the referral. Miss Senapati is great, felt very comfortable and looked after in her care.
It sounds sad but I’m really looking forward to seeing her! I’ve been told mines been put as urgent too so hopefully it won’t take too long. With the surgery and recovery what was that like ? In the past I’ve had to take a lot of time off work after ops so was wondering what the deal is with sitting down and timescales ?
 

Luke Wade

Very Helpful
Not too bad. My recovery was about 2 months. But fairly easy, sit to one side.. Take it easy. Pooping was the biggest challenge initially but they give you stool softeners to help with that. It's all worth it because it's essentially the end of having to deal with it daily. Apart from the obvious physical side of things Pilonidal Disease affected my mental health so was willing to do anything. Coming up to 3 years of no PD
 

6yearwonder

New Member
Not too bad. My recovery was about 2 months. But fairly easy, sit to one side.. Take it easy. Pooping was the biggest challenge initially but they give you stool softeners to help with that. It's all worth it because it's essentially the end of having to deal with it daily. Apart from the obvious physical side of things Pilonidal Disease affected my mental health so was willing to do anything. Coming up to 3 years of no PD
That’s amazing news congrats!! Yeah I’ll be coming up to the 7 year mark with this in October and it’s now starting to have that impact on my mental health. It’s the frustration of missing out on things that I want to do or even wear and that I can’t even consider starting my family with my partner until I’m completely better from this it’s starting to make me feel trapped. I’m pretty good now at taking it easy haha but 2 months is sounding good to me I’ve bought a great big body pillow aswell because I’m always waking up on my back after falling asleep on my side or front so hopefully that will help too.
 

Unhappyman

New Member
Update.

having weekly hair removal and twice daily showers I thought I was out of the woods for around 9 months. Sitting for long periods without discomfort and starting to exercise in the form of walking and jogging.

I used to be a cyclist and the pilonidal caused me to gain some weight so I had the bright idea to take the bike out for a short 30 min ride and see how I handled it, with the hopes of cycling to work to avoid Covid on the bus.

I did this yesterday and to my utter disappointment and surprise, it causes the top layer of skin to break across two parts of the scar. Now I will keep an eye on it and hope that it is superficial and heals up. No bleeding or anything but trying to ride a bike clearly put too much pressure/stretching there.
 

6yearwonder

New Member
Update.

having weekly hair removal and twice daily showers I thought I was out of the woods for around 9 months. Sitting for long periods without discomfort and starting to exercise in the form of walking and jogging.

I used to be a cyclist and the pilonidal caused me to gain some weight so I had the bright idea to take the bike out for a short 30 min ride and see how I handled it, with the hopes of cycling to work to avoid Covid on the bus.

I did this yesterday and to my utter disappointment and surprise, it causes the top layer of skin to break across two parts of the scar. Now I will keep an eye on it and hope that it is superficial and heals up. No bleeding or anything but trying to ride a bike clearly put too much pressure/stretching there.
Yeah the skin will split while it’s fresh a really good thing to help this is medi honey it’s a barrier cream so stops irritation when exercising but also helps healing! I’ve gone back to the gym and to my surprise it’s massively helped my wounds. I cycle on the large seated ones if you get what I mean ? And it’s really helped. Even though I need another op the skin closing over the top and getting smaller is massively helping me at the moment and my self esteem! I’m getting married soon and also planning a ‘proper wedding’ next year and want to start a family. So hopefully I can keep those going so I can get some of these things done before another op! How’s your pain like with cycling and exercising ?
 

Luke Wade

Very Helpful
I think my splitting was due to weak scar tissue, pressure and ultimately something needing to be removed still.
 
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