All roads lead to Dr. Senapathi

paininarse_uk

New Member
Hi - this is going to be a slightly longish post, but I want to share my experience of having suffered with Pilonoidal cyst in the UK. (not sinus! I will explain why)

I developed a lump on my arse back at the end of 2018 in the winter and initially I thought this was just a bruise I had incurred somehow. Initially it was just a lump which was slightly sore to touch and it healed on its own. After it healed I thought nothing of it and continued to go about my business.

In 2019, I started doing Crossfit and as a part of the exercises you end up doing quite a few sit ups, after a few months of doing this towards the end of the summer the "bruise/lump" had re-appeared. This time I was certain it may have just been my overdoing the exercise, however whilst it would heal, it returned a further 6 months later in 2020. This time continuing to persist and forming a sort of a pimple which was really quite painful.

In the summer of 2020, I decided to reach out to my GP and ask them to see it, due to Covid, it was quite difficult to get an in persona appointment but I was eventually seen and told that I had pilonoidal sinus and it would need surgery. I would be referred on the NHS and get seen.

Whilst waiting which was a 6 odd month wait, I found the cyst which had formed was now forming on a regular basis, then draining and it was becoming quite annoying and uncomfortable. The worst part being the cyst although small would drain and stick to my underwear (sorry for the graphic detail). It honestly was quite small no bigger than 1 to 1.5 cm in diameter and just a small circular lump. I was now in to the spring of 2021 and my wife and I were expecting a baby. The last thing I wanted to deal with was an arse crack infection when the new baby arrived so I decided to go down the private medical route. Thankfully I was fortunate enough to have private insurance through work.

I saw a consultant, Dr. Abulafi at the Shirley Oaks, he is a highly respected colo-rectal surgeon and honestly has been nothing but professional. He initially recommended we try antibiotics along with some scans to check if there genuinely was a sinus and tunnel which was causing the infection. Antibiotics helped reduce the swelling but the issue kept recurring. The scan also did not reveal a tunnel or sinus or any significant pits.

Mr. Abulafi therefore decided to treat my issue as a cyst that had been infected and sought to remove the infected tissue and skin without flap closure. The surgery was performed in April 2021 and honestly I don't remember much from the day.

After the surgery, I was honestly in almost no pain as I couldn't feel my arse, walking around and sitting was fine a day after surgery but the weeks that followed were frustrating. The biggest issue was that the wound had been left open so the nurses had to change my dressing almost on a daily basis for nearly 2.5 weeks. This meant daily visits to Shirley Oaks. Although the visits were painful, the bit about your sh*t getting stuck on to the dressing in the morning was really annoying. As a result I would shower just before going to the hospital and then remove the dressing completely.

After 3 weeks the wound appeared to have completely healed and I was advised to just keep the area dry after my showers using a Hair dryer. I thought it was all done and I was going to be smooth sailing from here on end... how wrong I was...

After about 2 weeks of the heal, the would swelled up and drained again. I went into complete panic and booked an appointment immediately to see the doctor.. he checked it and said there were no visible pits but used Silver Nitrate to expose the wound again, honestly this stung like crazy!!! and I was in pain for the next day or so... I was worried I was going to have to do that whole daily dressing thing again.. but the doctor suggested I just leave it and let the skin grow on it again properly and it did.

About 6 months went by issue free and then around May this year (2022), the would started swelling up again and draining. This time, there is no obvious drainage point and it just feels as though there is a layer of skin and then underneath it fluid builds up and releases. I have been to see Dr. Abulafi again and he gave me a course of anti biotic which calmed the wound down but then again it flared up towards the end of June. I have now had a letter to see Dr. Senapathi as he has said she specialises in this area.

I will be going down to Portsmouth at the Spire to see her next week and am really hoping she says its a minor issue and it can be fixed easily. It was re-assuring to read how many people here have seen her and I really feel for people that have this horrid disease!

Having read everything on here I hope she can give me some clarity.. really hoping its not another surgery.

I hope my post helps some people here out. I will update once I have spoken to her.
 
Hey there. I had a failed open excision for PD previously with a surgeon in Bromley. I then saw Senapati and had cleft lift performed in 2017. I was out the hospital the same day, took a few months to completely heal but I've been healed for 5 years now, best decision I ever made. She's an amazing surgeon.
 
Thanks for sharing! Well I had my appointment with her yesterday she recommended I do a Bascom procedure, said it would be day case and I’ll be done in 20 mins with a 90% success rate.

I’m still thinking about it, only because I really can’t stand the idea of having to go through the whole healing process again with an open wound.. it’s really terrible!

Do you know what procedure you had? Was it at the spire?
 
Bascom. It was at the Portsmouth spire yes. A family member drove me down to the hospital the day before surgery, stayed 2 nights in a local hotel (stayed night before and the night of the surgery). Has Senapati told you to book a hotel stay also?
 
Thanks - yes its the same. Well we are still working out which date I can do it. I am in the process of changing jobs in August so my private insurance will have to flip over so that it can cover the costs of the surgery.
She said I could possibly just go home to Bromley after the surgery on the same day.

My main concern at the moment is, I don't have an active issue this is a preventative surgery we are aiming for and is it worth the trouble. I want to delay it and see how I progress. Plus I don't even know if my new insurance provider will cover me for a pre-existing issue as its through work.
 
Preventative surgery? Hmm if you have no issue with PD right now maybe wait it out a bit, might get lucky. But then again if I had PD potentially brewing - personally I would get it taken care of with the bascom but I'm biased as I had a pretty rough ride with having PD for years - wouldn't wish it on anyone.

You gotta go with your gut instinct though

I got my girlfriend to clean the area, I saw my gp a couple times over the recovery just to check things were all good, was kinda smooth going, just took a few months.
 
Thanks.
Yes I feel like I’m getting pushed to take a date in August by the Doctors EA. Seems like they have a fair number of slots open in August.

Yeah it’s been an annoying ride. The surgery last year really helped sort out May be 70-80% of the problem. It was becoming a continual discharge at the time.

At the moment it’s pretty calm, but I’ve had a few rough months.

Im considering just riding it out till I start my new role and get my new insurance sorted. I don’t want to rush into an invasive surgery especially if it’s not a burning issue. It possibly there but there are no guarantees with surgery.. in many cases the surgery just ends up making the situation worse than the disease itself.

Seriously the disease is the worst ever! I mean the stats are 26 out of 100k people who get it. What are the chances that we lucked out with this!!

Do you consciously keep the area really clean now, etc.?
 
The problem with these things it's quite common they like to get worse under the surface if left untreated, and then become a bigger problem, regular infections, cysts, pain. Sorry dont mean to freak you out - This might not happen with you but bare it in mind.

Sometimes you can live with it and have the odd flare up, but I guess it's a gamble. It's defo a personal choice but the success rate is very good for this surgery according to Senapati - I remember having total faith in her.

Before surgery with her I was having issues constantly due to a failed surgery at a Bromley hospital, I had a small wound that wouldn't stay closed and infections on and off for 7 years, I was putting off more surgery cos I was hopeful it would eventually heal (I was also kinda nervous about more surgery). I now definitely regret not having the Bascom sooner.

So in 2017 I was 100% on board with surgery with Senapati.

Now - not consciously no, just wash my body in shower as normal. My a*se looks different now but apart from that no issues in 5 years.
 
Thank you for sharing. May I ask how many weeks it took you to heal? Did the problem get a lot worse before you finally said enough is enough? I think mine is similar, I have a wound which has healed but underneath it an abscess has formed which flares up every now and again, I was trouble free for 6 months so thought it was done and dusted!!

I’m less worried about the cosmetic elements as I am married, as long as I can live a healthy life I.e do my workouts and take care of the family without having to worry about an arse infection coming back.. it’s now not even the bloody disease just the stress of having to get this nonsense sorted out!! Slight itching in the area and I start panicking!!
 
It took 3 months to heal (no more small wound) but like 6 months to fully heal, if that makes sense.

The problem for me was always kinda bad after my first failed open excision surgery (bromley hospital), I was left with an open wound that would heal and open constantly.

The cosmetic side isn't even that bad, just looks a bit different.

But yea if it keeps flaring up every now and then.. I really seriously hated my time with PD so I'm never gona say leave it.

My opinion I think you should for go it, especially if Senapati is giving the green light.
 
You've really made me reconsider it. I will check what the process is after the surgery. Just don't want to be left massively out of pocket especially as my insurance runs out.
Thanks for all your help!
 
Just giving you my experience with it all I know it's a bit daunting and it was a rough ride with PD but there's always a solution. Surgery recovery was surprisingly easy after Bascom also.

I actually got mine done on NHS with Senapati at Portsmouth, not sure if she still does this but worth an ask? You might have to wait longer, I think I had to wait about 4~5 months after consultation with her.
 
The secretary is an absolute mare; they’ve said if you have stitches these can be taken out at your own discretion. Did you have the same experience?

It’s a bit odd because they should be giving me a referral either to the NHS or another private hospital.
 
Stitches from bascom, they dissolved apart from 2, Senapati took these out a couple months after during a follow up appointment.

I asked my GP to refer me to Senapati at Portsmouth - and was adamant I wanted her to do the surgery, before that I'd ask her receptionist if she's still seeing NHS patients
 
The Spire I’ve been told is private and the list for surgery here is fully private. That’s what Senapati told me on Monday.

The NHS list for surgery is going to be at St. Marks in Harrow (London).

Couple of months for the stitches! Wow! They’ve told me they need to come out in a week. But I need to figure it out on my own.. what a joke?!
 
Would St Marks be a different surgeon I take it?

Yea I remember stitches taking a while to dissolve but didnt mind cos knew they were helping with the healing process.

If you book an appointment with the nurse at your doctors they will sort it out, if some need removing etc
 
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