My 18-month battle against pilonidal sinus disease took a colossal toll on my physical health, but no one speaks about the impact it can have on your mental health.

I struggled enormously on the mental side. Pilonidal sinus disease is not a joke and, bluntly, it is not spoken about enough in the UK.

If you are currently struggling during your pilonidal sinus recovery, please reach out to someone and talk. It’s something I massively regret during my battle; keeping your emotions bottled while trying to fight a disease is extremely damaging.

There are many platforms you can speak to someone on if you are struggling with your mental health. NHS and Mind both offer support online. Alternatively, speak to your family, friends, or anyone who you are close to.

Here is the story of how pilonidal sinus disease impacted my mental health during my recovery.

What Pilonidal Sinus Disease Impacted The Most

Aside from the physical pain and suffering that came during my aftercare process (in particular the first four surgeries), I really struggled with the mental and emotional side.

There were many different aspects I struggled with mentally, but these were the main focus/repeated issues:

Emotional Toll Of Chronic Pain

Having the physical pain of a non-healing pilonidal sinus wound was tough, but it also had a huge emotional impact.

I was not able to sit down during my recovery process, which drained me emotionally and placed further emphasis on the pilonidal sinus wound that I had.

Embarrassment

The embarrassment that I felt during my battle was extreme. Due to the location of pilonidal sinus wounds, it made trips to the GP, hospital and walk-in centre very embarrassing.

Having strangers look at a very private part of your body regularly can be embarrassing and, to be honest, a little humiliating.

However, I did not need to think this way. Everyone was very professional and understanding of my situation; you do get used to it after a while.

Isolation

Lonely does not justify what I felt during my recovery process.

I was constantly isolated in my bedroom, lying on my side in bed, hoping for things to get better.

You are left alone with your thoughts for multiple hours of the day and while my friends were planning trips abroad and enjoying life, I was completely isolated, contained between the four walls of my bedroom.

This is one of the most difficult mental issues I faced. You are pretty much forced to think about your situation and there is nothing you can do.

Self-confidence

My confidence was completely drained, whether that was my professional work confidence or my relationships with friends, family and my girlfriend.

I was a very active person before pilonidal sinus disease; loved to play football, go to the gym, etc. I lost the ability to do the things I enjoy the most, which completely stripped me of my confidence.

Also, having five surgeries and suffering from infections and complications meant I lost a lot of weight and muscle, which also had a significant impact on my self-confidence.

Anxiety & Uncertainty

I hate hospitals. Before my first surgery, I had only been to the hospital a couple of times, but I was petrified of them.

Each time I had to go back into the hospital for surgeries, check-up appointments or A&E, my anxiety went up insurmountable levels. It was a serious problem.

Also, during the recovery process, I was scared of what the next day would bring. One day the wound would look to be making progress, the next it would completely break down, start bleeding and I was back to square one.

Feeling anxious with pilonidal sinus disease is a horrible feeling.

Losing Hope

Finally, hope. It’s the one thing you have to maintain if you are struggling with your pilonidal sinus wound healing.

However, after multiple failed surgeries and approaches, multiple assessments and multiple parties providing me with conflicting information, I started to lose hope.

It’s extremely difficult to maintain the belief that things are going to get better, especially when it can be such a long process without signs of improvement (if you have issues that are not diagnosed or addressed correctly).

Please, if you are struggling with pilonidal sinus disease, make sure you never lose hope and stay as positive as you can. It will get better.

The Importance of Seeking Mental Health Support

As I mentioned at the start, you must seek mental health support if you are struggling. Do not try and win this battle alone – use the support of others or professionals like Mind or the NHS to help you get through this. And you will get through this.

I am also available to contact if you want to speak to someone who completely understands what you are going through.

Never fight alone and never give up. You will conquer pilonidal sinus disease and it is going to make you infinitely stronger in the long run!

The post How Pilonidal Sinus Disease Affected My Mental Health appeared first on PNS Hub.

Cleaning and dressing a pilonidal sinus wound correctly is imperative to a successful recovery journey.

I went through an 18-month battle and experimented with a variety of methods due to the lack of information provided during the aftercare process.

However, it does mean I have valuable experience with pilonidal sinus wounds and the best method for cleaning the wound during recovery.

The following guide highlights the method I used to see the best results for keeping the wound clean and limiting the risk of infections/complications.

Step 1 – Shower And Digitation

I have a detailed, step-by-step process for showering with a pilonidal sinus wound, which you should read before you continue with the next steps.

There is another important concept – wound digitation – that you should also complete before reaching this stage.

Showering and digitation work in tandem, so once that step has been completed, you are ready to move to the next phase of wound cleaning.

Step 2 – Preparing the Wound Area

Once you have showered and digitated the wound, it is then important to pat the wound dry with a non-woven, sterile gauze pad/swab to minimise the risk of any dirt entering the wound post-shower.

Step 3 – Wound Irrigation

The next step is to apply a wound irrigation solution to the wound directly. This can be difficult to do by yourself due to the position of pilonidal sinus wounds, so we recommend asking a family member or partner to help you with this process if possible.

If you can have someone do it for you, lie down on a flat surface (I used my bed) on your stomach so your wound is visible.

Then, directly squeeze – gently – the wound irrigation solution into the wound. It does not need to be loads, just enough to ensure the inside of the wound has been irrigated effectively.

You can then ask your family member/partner to place a sterile gauze pad/swab into the wound directly so it is half-in and half-out. This will soak up the solution. I would set a timer for 3-5 minutes and leave it to absorb.

I used the brand Octenlin for my wound irrigation solution, which worked well for me. There are likely alternatives on the market that do the same thing, but I wanted to be transparent with everyone reading about what brands I used.

Step 4 – Wound Dressing Strips + Topical Ointment

Now, depending on the stage of your recovery process, this step will differ slightly.

For my fifth (and final) surgery, I used Ortem as my topical ointment to help with the recovery process. I have a guide on what Ortem and how you can get access to it.

Once you have patted the wound dry again, it is now time to use the combination of Aquacel Extra wound dressing strips with Ortem.

Ask your family/partner to cut out a portion of the Aquacel wound dressing strip to match the size of your pilonidal sinus wound.

Then, using the Ortem tube or alternative topical ointment, squeeze a line of the ointment onto the strip of Aquacel.

You then want them to, carefully, place the strip inside your pilonidal sinus wound.

Step 5 – Wound Dressing Application

The final step is to apply an absorbent wound dressing over your pilonidal sinus wound. This absolutely needs someone to help to ensure the wound is covered correctly.

I used a variety of wound dressing brands throughout my recovery processes, and I found that Mepore self-adhesive absorbent dressings were the best for my skin and comfort. Again, your body may find alternatives a more comfortable solution, so use what is best for you.

If the dressing is not sticking over the wound correctly, you can use medical tape to keep the dressing in place.

Tip: I often found that, due to the site of my pilonidal sinus wound, the absorbent dressing would fall off. The trick I found to prevent this from happening was to cut a small slit into the bottom of the wound dressing and stick the dressing strands to the left and right with medical tape.

I hope this helps you with the cleaning process for your pilonidal sinus wound during recovery.

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Ortem is a topical ointment that significantly helped me during my pilonidal sinus recovery…and it may be the solution for you as well.

Firstly, I want to make it abundantly clear that I am not endorsed or sponsored by Ortem. The reason I am showcasing the use of Ortem is due to the personal improvements I saw during my pilonidal sinus recovery.

So, what is Ortem and how can it help during aftercare with pilonidal sinus wound healing?

What is Ortem?

By definition, Ortem is a proprietary preparation of metronidazole 10% ointment, manufactured by SLA Pharma and available in the UK as an unlicensed medicine.

Ortem can be applied directly as an ointment onto the pilonidal sinus wound, making it a topical metronidazole.

How Does Ortem Help With Pilonidal Sinus Wounds?

Firstly, metronidazole is a nitroimidazole with antibiotic and anti-inflammatory properties. Topical metronidazole has been used to treat a variety of diseases in the past; however, using it for pilonidal sinus wounds is still relatively unknown across the globe.

During my pilonidal sinus journey, I reached a point of desperation after four unsuccessful surgeries. I was seen by a tissue viability nurse who recommended ‘10% metronidazole’ as something to look for.

This was not available on the NHS when we looked at the GP – the only metronidazole strength available was 0.25%.

So I turned my attention to Google and searched “10% metronidazole pilonidal sinus” and came across this clinical trial.

I reached out to the contact details and, Justin Slagel, part of the SLA Pharma group, was extremely generous and provided me with Ortem for my healing. He also got me in contact with Mr Carapeti, who conducted my private (and final) surgery.

The results I saw from using Ortem were extraordinary. When using it before my final surgery, I saw significant improvements to the wound, which prepared me extremely well for the surgery.

I then continued to apply Ortem daily post-surgery and the results were incredible. I could not believe that I had finally found a solution to my pilonidal sinus nightmare.

Is Ortem Available On The NHS?

Ortem is currently available as an unlicensed medicine undergoing a Phase 3 clinical trial. If you think that Ortem would be suitable for your treatment, please contact your doctor who can prescribe it on a ‘Specials’ basis. This means that Ortem will be charged as a regular prescription.

More information regarding Ortem is available on the SLA website.

Ortem Alternatives

If you want to use an alternative to Ortem, you could try applying Flaminal Hydro Gel to the wound and monitor the progress (I used Flaminal during my pilonidal sinus journey, but it wasn’t the right application for my healing due to underlying issues inside my wound).

Flaminal is available as a prescription on the NHS.

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Before I went through my pilonidal sinus journey, the ideation of using a standing desk was foreign to me.

The pain I suffered during my 18-month battle against pilonidal sinus disease forced me to discover an alternative way to find comfort other than sitting.

Most people sit for multiple hours a day, so when it is taken away from you, the difference is noticeable – instantly.

For me, using a standing desk to work was the solution to avoiding the pain that came with sitting down on my chronic, infection-ridden wound.

In this help guide, I want to show you how a standing desk helped me during my pilonidal sinus recovery journey.

Benefits Of Using A Standing Desk

According to the Orthopaedic Hospital of Wisconsin, there are multiple benefits to using a standing desk; however, I wanted to highlight a couple of advantages that I found relevant to me during my pilonidal sinus aftercare:

Improved Circulation

When standing at a desk, you improve blood flow throughout your body. The more blood circulates around your body, the better it is for healing.

As you are standing and your body requires more energy, it is working harder to pump blood around your body – including the site of your pilonidal sinus disease.

Improved Focus

During the recovery phase, I wanted to ensure I had as many distractions away from my wound as possible, and using a standing desk helped with that.

As I was not sitting on the wound, my mind was not distracted by the pain and ‘what if’ scenarios that would come into my mind.

Using a standing desk allowed me to focus on my work as opposed to fixating on the open wound and potential issues that could arise from sitting on it.

Pilonidal sinus recovery is not just a physical battle. The mental strength it takes to get through is something most patients are not aware of beforehand, so any small tweaks you can make to help with that will steer you in the right direction.

Transitioning To A Standing Desk

When you first transition to a standing desk, it will feel different and will take time to adjust.

I purchased a Flexispot desk, which allows me to adjust the height of the desk to what I want it to be.

During my recovery, I kept it to the standing height that worked for me and it also means that now, post-recovery, I can alternate between sitting and standing while working.

Here are a few tips you can take away when you first transition to a standing desk:

• Start with 10-15 minute spells of standing up, followed by 5 minutes of lying on your side.
• Take small, regular breaks.
• Gradually increase the length of time you spend standing in one iteration.
• If you feel pain or distress, stop!

Managing Discomfort

When it comes to managing the discomfort or pain of pilonidal sinus wounds, standing desks massively helped me with that.

Due to the complications I had during my recovery process, I found it extremely painful to sit down on the wound.

Using a standing desk removed that pain and allowed me to make personal progress in my career while fighting pilonidal sinus disease.

The post How Standing Desks Help After Pilonidal Sinus Surgery appeared first on PNS Hub.

Sleeping can be an awkward process when you are recovering from pilonidal sinus surgery; making sure you give your body the necessary rest it needs is crucial to your healing journey.

From my personal experience of going through multiple pilonidal sinus surgeries, I learnt the best ways to sleep when it came to comfort, pain management, positioning and routine.

This help guide will provide the necessary advice to ensure you are sleeping well and helping your body recover optimally.

Advice For Sleeping With Pilonidal Sinus Wounds

Let’s break it down into sections for the different components of sleeping with a pilonidal sinus wound:

Choosing the Right Sleeping Position

When I came back from hospital after my first surgery, I found it extremely uncomfortable and difficult to sleep, so choosing the right position was essential.

I would avoid sleeping directly on your back due to the position of pilonidal sinus wounds – you want to avoid unnecessary pressure.

For me, I found that sleeping directly on my side was the most comfortable. It also allows you to, carefully, change from side to side throughout the night without adding pressure to the wound.

When sleeping on your side, try to avoid bringing your legs directly up to your body. This will, naturally, move apart the wound and cause tension in the area. Remember, your body knows best and you will be able to feel what is most comfortable for you.

Using Pillows for Support

If you are worried that you may roll onto your back during the night, you can put a pillow directly behind your back when on your side to prevent this from happening.

It also provides extra support behind you, which psychologically can help feel more comfortable when sleeping.

Pain Management Before Bed

Make sure to take over-the-counter or prescribed pain relief medication just before you go to sleep if needed!

I remember taking Ibuprofen for the first few nights when returning from hospital, but after that I did not need it.

Again, listen to your body. If the over-the-counter or prescribed pain relief medication is going to help you sleep and get the rest your body needs, then this could be a good option for you.

Creating a Sleep-Friendly Environment

It seems silly, but this massively helped me!

Make sure your bedroom is a place that enhances relaxation. A routine can also help separate the day from the night, which will psychologically help you during recovery.

For me, I made sure that I stuck to a routine and created a sleep-friendly environment to help me get the rest my body required.

Night-time Hygiene and Wound Care Routine

This falls under the point above, but I would always make sure you go to sleep with a clean wound and bed!

It’s simple things like this that can make a massive difference, even mentally. If you know you are going to sleep with a clean wound, it helps put your mind to rest and get to sleep.

I do have a detailed guide on showering with a pilonidal sinus wound that could be helpful to know.

Managing Your Temperature

During the warmer months, it can make it even more difficult to get the rest and sleep your body needs.

It’s important that you remain calm and maintain a cool body temperature when sleeping.

A few things that helped me include:

• Cool shower before getting into bed
• Using a cold flannel on my forehead before going to sleep
• Using a fan to cool down before going to sleep

There are likely many things you can do here, but the main point is to make sure your sleep is not disrupted by the warm weather!

Sleeping with a pilonidal sinus wound can be difficult to adjust to at first, but it does get easier as time goes on.

Make sure to listen to your body. Don’t apply unnecessary pressure to the wound when sleeping. Stay calm, relaxed and comfortable!

The post How To Sleep During Pilonidal Sinus Recovery appeared first on PNS Hub.

Wound digitation was a completely new concept I had only heard of before my fifth pilonidal sinus surgery, yet it is one of the most important components of successful and healthy recovery.

Prior to going private with Mr Carapeti, I had been told to avoid touching my open wound. The idea of interfering with the healing process by touching it was something I would never have thought to do.

It made complete sense at the time. Why would you want to touch a healing wound?

However, wound digitation is crucial to ensure you heal correctly during the aftercare of pilonidal sinus surgery; this detailed guide will explain what it is, why it’s important and how you can digitate your wound successfully.

What Is Wound Digitation?

Wound digitation is the process of rubbing your finger along the wound from top to bottom. This may feel uncomfortable at first, but is an extremely important concept for wound healing.

Why Is It Important?

It’s vital that you digitate to prevent the wound from healing too fast.

It will allow healthy tissue to formulate from the base of the wound to the top, stopping the top layer of skin from closing over and healing too quickly.

How To Digitate Your Wound

The process of wound digitation is simple, but I have some useful advice from my experience of doing it every day following my final (and successful) pilonidal sinus surgery.

Firstly, get into a routine. I would combine it with my shower timing (I have a detailed shower guide during pilonidal sinus recovery that you can also check out) and kill two birds with one stone.

When in the shower, place Dermol 500 Lotion – an antimicrobial emollient – onto your finger and firmly rub the inside of your wound, up and down. Make sure to rub up and down multiple times.

The first few times that you carry out wound digitation, you may experience some bleeding. Do not panic, this is completely normal. The bleeding will likely stop after a few more days of digitating.

How Often Should You Digitate Your Wound?

Simple – every day!

From my experience, I did not start my wound digitation immediately after my pilonidal sinus surgery due to the pain I was feeling.

Therefore, I recommend that you wait at least 3-5 days before starting. This will allow your body to stabilise and recover from the surgery and you will physically, and mentally, be ready to digitate your wound.

Once you feel comfortable and confident, you should then be digitating daily in the shower.

Does Wound Digitation Hurt?

No, digitating your pilonidal sinus wound should not hurt. You may feel some discomfort when you first start, but you will get more familiar with the feeling the further into the process you go.

You should now be ready and understand the importance of wound digitation in pilonidal sinus recovery. Be confident, be strong and give yourself the best chance of a successful recovery from surgery.

The post Importance Of Wound Digitation In Pilonidal Sinus Recovery appeared first on PNS Hub.

When you return home from the hospital after pilonidal sinus surgery, showering and keeping the wound clean is crucial to a successful recovery.

I am someone who was provided little guidance when it came to showering following my pilonidal sinus surgeries, which made it difficult to know what was correct.

However, I want to use my experiences to help you. My 18-month journey taught me all the important aspects of pilonidal sinus aftercare, including showering.

Here’s my full, detailed guide on how to shower the correct way following pilonidal sinus surgery.

Preparing For Your Shower

The preparation you put in before you enter the shower will also help you get set up correctly.

Getting into a regular routine can be beneficial; if you can get into the routine of showering after going to the toilet, it will provide the best combination during the wound cleansing process.

Before you get into the shower, make sure to remove any wound dressings that are in place. This includes any packed gauze or ribbons, too. You want the wound to be completely exposed when you get into the shower.

Showering With An Open Wound

If you have a closed wound, this will not apply to you; the majority of surgeries for pilonidal sinus involve an open wound, making this advice applicable to you.

Water Temperature

When showering, make sure the temperature of the water is not boiling hot or freezing cold. I found the best temperature was in between the two.

Shower Pressure

If you have a shower that you can adjust the pressure of, you need it to be powerful enough that the water gets into the wound to clean inside. However, do not make it too powerful as it may cause pain or discomfort.

As always, listen to your body. Different people have different thresholds for what they can contain and this situation is no different.

Using The Shower Head

Due to the position of pilonidal sinus wounds, it can be difficult to clean in a regular shower.

From my experience, the best method for cleaning the wound was to take the shower head off the fixed position, using your hand to hold the shower head behind you and directly on to the wound.

This will allow water to directly clean the inside of the wound and remove any dirt or potential causes of infection.

Digitating The Wound

Wound digitation when you are in the shower is a process that you must not avoid – it is that important!

I have a full, detailed guide on wound digitation for pilonidal sinus recovery that you should read. It outlines the importance, how to digitate your wound and why completing the action in the shower is the best method.

Using Dermol 500 Lotion

When showering, I found that using Dermol 500 Lotion – a moisturising, antimicrobial emollient – as a soap substitute provided an extra layer of keeping the wound clean.

Again, this point is more based on my personal experiences, but the main point is to avoid any soaps that contain scents or potential ingredients that could contribute to an infection.

Getting Out Of The Shower

Once you have finished showering, take extra care when getting out of the shower.

Make sure you have the balance required and gently step out of the shower – if you need someone to assist with this during the early stages of the recovery process, always ask for help!

When you are out, pat yourself dry gently with a soft towel, but avoid patting the wound with the towel directly.

I would always use non-woven, sterile gauze pads/swabs to pat the wound dry, minimising the risk of infection and taking extra caution.

You can read our expert guide on how to dress/pack your pilonidal sinus wound, as this is the next step following a successful showering process.

FAQs

Here are some of the common questions about showering with a pilonidal sinus wound that I can answer based on my personal experiences:

When can I take my first shower after pilonidal sinus surgery?

There is no set answer for this, but once you are discharged from the hospital, you should be able to shower the following day – this was the case for me.

Can You Get An Open Pilonidal Sinus Wound Wet?

Yes. You can get your pilonidal sinus wound wet. It is important to thoroughly clean the wound daily.

Once cleaned, you should then keep the wound dressed/packed correctly.

Can I Take A Bath Instead Of Showering?

I would avoid baths where possible if you can shower instead. Due to the area of pilonidal sinus wounds, it can make bathing uncomfortable and cause distress.

How Do I Wash My Hair And Not Impact The Wound?

From my personal experiences, I found that washing my hair by leaning forward was the best solution. I would also hold the shower head myself and spray the water close to my head, using my other hand to wash off the soap (again, while leaning forward).

This will prevent any soap from going down your back and coming into contact with the wound.

How Often Should I Shower?

Every day! Make sure to keep the wound as clean as possible during the aftercare process.

The post How To Shower After Pilonidal Sinus Surgery appeared first on PNS Hub.

Every day, I was extremely anxious about straining and causing stress to the wound, completely unravelling any ‘progress’ I was making.

When going to the toilet, there were times when I would strain too hard and the recovering wound would start bleeding. I would completely break down into tears whenever this occurred.

This is why I want to provide you with all of the advice I can about going to the toilet when recovering from pilonidal sinus surgery.

Using my personal experiences based on my 18-month journey, here is a detailed guide about going to the toilet during the pilonidal sinus aftercare stage:

What Happens If You Strain?

The first and most important point to make is that straining is inevitable at some point during your recovery process.

If this does happen, do not stress or panic! Finish cleaning up and place a gauze dressing to stop the bleeding. Once the wound has settled, go through the showering and wound-cleaning steps.

Will You Be Constipated Straight After Surgery?

One thing I was not told after my first surgery is that, when you go to the toilet during the first 24-72 hours post-operation, you will find it difficult and it will feel very constipated.

This is a result of the pain medication and anaesthesia flowing through your body directly after surgery.

Once again, do not panic. This is normal. Make sure to drink plenty of water (aim for 2-3 litres per day) and stick to a healthy diet with plentiful fibre to reduce the effect as much as possible.

The Toilet Process

When I went to the toilet, I found water wipes to be an extremely effective replacement/supplement to toilet rolls.

Once you have finished going to the toilet, make sure to avoid wiping directly onto the wound with the water wipes. Wipe around the area and ensure it is cleaned thoroughly.

Note: Wipe down, not up! Ensure you are wiping away from the direction of the wound to keep the area as clean as possible.

Showering After Going To The Toilet

If possible, shower straight after going to the toilet.

This will take the cleaning process one step further and reduce the risk of any dirt getting into the wound and causing infections or complications.

We have a detailed guide on showering with a pilonidal sinus wound that you should read.

Avoid Constipation Where Possible

As mentioned before, it is not always certain to avoid being constipated, but there are steps you can follow to minimise the risk.

Water

Firstly, water. It is the simplest, yet most overlooked component of the pilonidal sinus recovery process.

I want you to drink at least 2 litres of water each day. Aim for 2-3 litres daily and you will be keeping your body hydrated, which will help when you go to the toilet.

Diet

The second component is diet. Ensure that you are getting plentiful healthy fibre into your diet. Potatoes, green vegetables, etc. There are numerous foods out there that are high in fibre.

Movement

Finally, light exercise! You must be very careful and always listen to your body when it comes to moving around, but try to ensure that you get your body up and moving throughout the day in spells.

This will improve blood flow and circulation around the body, which is important for digestion and keeping your toilet pattern regular.

Again, make sure you listen to your body and exercise should not be climbing a mountain! It is small, regular walks around the house or within a safe distance outside.

If you can keep to a routine schedule when going to the toilet, it will make things consistent and easier to manage.

As mentioned at the start, do not panic or get stressed about going to the toilet during pilonidal sinus recovery. There will be better days than others, but use my personal experiences and advice to help you during your process.

The post Going To The Toilet Following Pilonidal Sinus Surgery appeared first on PNS Hub.

Before I get into the breakdown of the actual reality and issues we currently face with pilonidal sinus disease, it’s important that I provide a timeline of my surgeries: 

Surgery 1: Jan 5th 2022 – NHS

Surgery 2: Feb 28th 2022 – NHS

Surgery 3: July 22nd 2022 – NHS

Surgery 4: August 25th 2022 – NHS

Surgery 5: April 11th 2023 – Private (Dr Carapeti)

October, 2021. I had just been told I would need surgery for my pilonidal sinus’ (yes, plural). Anyone who knows me well knows just how much I hate hospitals, and in three months time, I would be in one, this time as a patient. To say I was petrified would be an understatement.

But what I didn’t know was that my life was about to completely change. I was about to enter an 18-month period of darkness. Pure, vacant, inescapable darkness. Never in my life did I ever believe I would feel and think the way I did when battling this disease.

I started with hope. I was told the recovery would be three to four weeks and I would return to my normal life again. When you hear those words from a surgeon, you believe them – in fact, you don’t ever doubt them. And I believe, in my heart, they believed it too. 

This is the biggest problem with pilonidal sinus disease. There is so much misinformation out there that even the most qualified, bar a small minority, don’t really know what to do with these surgery options – and it’s the patients who end up suffering.

Before we start my journey, it’s important I say this for those who are struggling – it will get better. It does get better. You are not alone. It’s hard to believe me if you are going through something similar, but I am telling you from experience that this is a short, temporary moment in your life that will change. And I hope this case study gives you hope for what can be done to turn things around.

January 5th, 2022. My first surgery I had ever experienced. It was the first time I would be under general anaesthetic and I was full of anxiety. I arrived at the hospital in the morning and the surgeon came to speak to me. The first thing he did was reassure me, followed by examining what type of surgery he would be doing.

Straight away, he decided that he would be operating the closed procedure; this is where they take away the pilonidal sinus by cutting away the skin around the sinus and then stitching the wound straight back together again as part of the surgery. At this point, I was not made aware of any alternatives and I certainly was not aware that this type of surgery almost never works. 

As I made my way to the operating theatre, I was absolutely petrified, but I knew in my head that if I could just get through this moment, in 3-4 weeks’ time, my life would go back to normal. Well, that’s what I thought.

I was discharged from the hospital around five hours post-op. I didn’t feel amazing but I was desperate to get home. Get away from what had just happened and start my short road to recovery. 

As part of the surgery, they put a drain in the wound that I had to leave in for 48 hours. The idea is to collect all of the discharge and fluids that are generated from that type of procedure. It was a long 48 hours. Sleeping was near impossible and I was petrified that going to the toilet would rip open the stitches. 

It’s a massive problem I want to highlight – the aftercare for pilonidal sinus. When I left the hospital, I had almost zero guidance for what to expect and the best approach for the recovery. 

Somehow I got through that initial 48-hour period and found myself back in hospital to get the drain removed. I was waiting for a couple of hours before someone saw me. That was really tough – I couldn’t sit down yet, I was extremely weak from the past two days and was basically told to wait.

However, when I was finally seen, what followed next surprised me. There were a few nurses in the room, but none had ever seen the type of drain that I had attached to the wound. It did not fill me with any confidence at all. Surely this is a common, routine part of the recovery process for pilonidal sinus? That was my first clue that things were not going to be smooth sailing. 

Eventually, they called a senior doctor to assess the situation and he removed the drain. That feeling was amazing. I thought that was it. All I had to do was wait for another few weeks and I would be back to full health. Ready to go play football with my friends, go back to work, or even just sit down again. 

Well, that’s what I thought. Long story short, I had multiple issues. Due to the closed procedure I had, the wound was not able to heal correctly. I knew something was not right as the pain was getting worse inside and I did not feel like any progress was being made. After multiple visits to the GP – who said I was fine and the wound looked great – I eventually found myself outside A&E in an extremely bad state. 

February 27th, 2022. After several courses of antibiotics and multiple unscheduled hospital visits, I arrived at A&E in the worst physical (and mental) state I had ever experienced. Something was not right inside of me. My wound had opened at the bottom, was leaking blood and pus every day and I could barely eat. I was told this was normal and part of the ‘remodelling’ phase. I have now come to realise that this couldn’t have been further from the truth. 

Anyway, when I arrived at A&E, I could barely walk. I had no energy, I felt extremely light-headed and, because I could not sit down, I had to stand up and wait. I am so thankful that I had my Mum to help me in this situation. She had to hold me up to prevent me from falling to the ground and those few hours of waiting was a scary experience.

Eventually, I was seen, given a bed and told I would be having surgery first thing in the morning. I will never forget that night for as long as I live – it was absolutely horrifying.

I was alone, I was weak and I was begging to just go home. I couldn’t stop crying. I was a complete mess. Going through the first surgery was tough enough, but now I found myself having to go through it again – only this time my body was weak and trying to fight off what was happening inside of me.

The morning finally came (after absolutely no sleep) and I was taken to the operating theatre. The nurse who saw me in the morning was trying her best to help me, but it was too late. The surgery took place and the next thing I knew, I was awake in a room full of other recovering patients. 

This time for the surgery, they opened up the top and bottom of the stitched-together wound. I was told that this would allow all of the fluid and infection to drain out and it would heal nicely together again. 

I remained in hospital for two days following the surgery. I had to be given antibiotics and fluids on a drip every few hours throughout the night, so I was still exhausted. Eventually, the two days came to an end and I was finally back home – once again full of optimism that this would be the final road to recovery.

The first couple of weeks were extremely tough. I had to go to the walk-in centre every day to get my dressing changed. As I now had two open wounds, they both had to be packed. Originally, I was told it should be packed with aquacel ribbon, and that’s what I did the first day, but I cannot describe the pain exerted on me. I was told it could be painful the first couple of weeks, but I did not anticipate it would be that painful – I would later realise that this pain was something else.

A couple of days later I went to a different walk-in centre as the waiting times were shorter. I saw a different nurse who told me about using a gel called ‘Flaminal’ instead of packing with aquacel. The point of using Flaminal is that it still absorbs the exudate from the wound, but it also protects it from infection. There were two different types – Forte and Hydro. You can read all about the Flaminal gel and take a closer look at what they do.

One thing you have to be careful of is the overgranulation of the tissue in the open wound. I will speak more about this at the end of the case study, but effectively you need the wound to heal slowly from the bottom to the top and not allow it to overgranulate. 

However, I was not aware of any of this and kept putting the gel on every day as instructed – well, my Mum was, I can’t take the credit for that! Eventually, the smaller wound at the top overgranulated, but then the nurse, effectively, rubbed away the overgranulated tissue and it healed within the next few days.

The same cannot be said for the bottom wound, though. This one continued to bleed, leak a lot of fluids and really struggled to heal. It was starting to affect me again mentally. Staying optimistic and positive when this is happening is close to impossible – actually, it is impossible. I was not living a normal life. I did not feel like a person. I felt disgusting, I felt so abnormal. I still couldn’t sit down or carry out my usual daily routine that most are not even conscious of.

Problems continued for months. More trips to A&E. More trips to walk-in centres. There was clearly still an issue that was not addressed inside and I started to lose hope. And that takes me into July of 2022…

July 22nd, 2022. Surgery number three. Here we go again. The never-ending cycle was set to continue – but surely this has to be the last time, right? 

I went to the hospital for a check-up the day before. I knew something was wrong. I was seen by a consultant around midday and she told me that I would require surgery again. It shattered me. I broke down. At this point, my mental state was the worst it had ever been. I’ve never said this to anyone before, but I want to get the seriousness of pilonidal sinus disease across to everyone reading this – I did not want my life to continue anymore. 

And that petrified me. The fact I could acknowledge those thoughts at the time and still consider certain options was an extremely frightening moment. But then my Mum, who had been by my side the entire time since January, reassured me that I would beat this and we could get through this. We were going to beat this. Together.

The next day arrived and I was told to make my way to the hospital in the morning for surgery. I ended up waiting on some random hospital bed for the entire day as I was put last on the list. I had already stopped eating and drinking the night before (as you have to when going under general anaesthetic), so by the time the evening came, I was extremely weak and dehydrated. 

But I got through it. The procedure was called an ‘incision and drainage’. This basically made the bottom wound go back to square one and I was told by the surgeon that it would heal now it had been cleaned out effectively. It was a fresh start and time to beat this once and for all.

Well, fast forward just one month and I found myself back with the same problems again. The wound was exudating lots of fluid and progressively getting worse each day. I didn’t have the energy to fight anymore. I was defeated.

But one thing that did change between my third and fourth surgery was my GP nurse. A new team arrived at my GP and instantly I was seen with amazing care. There were two new nurses who saw me and went above and beyond to keep on top of things. I look back now and those two arriving to help me was the best thing that could have happened – but more on that later.

Two days prior to my fourth surgery was my A&E visit. I waited for hours before being seen and was eventually taken through for my blood tests. I then returned back to the waiting room for another lengthy period of time before I was examined.

This time was different. The consultant who saw me was a general surgeon, but he also inherited a sub-speciality interest in colorectal surgery. This was it. This was the break I needed. A surgeon who knew what they were doing! At last! (Spoiler alert, it didn’t work).

August 25th, 2022. As I arrived at the hospital in the early hours of the morning, I saw the surgeon who explained what procedure I was about to have. He mentioned that my current cavity was “filled with pus” and the best thing to do was to clear out the infected area and suture it together while creating a new, separate wound to the side. 

The idea was to make a pathway for the infection to clear out naturally. The inside area that was 

not being addressed had ‘finally’ been sorted. The surgeon was full of confidence that he had identified the root of the problem and that this was the solution.

It ended up being the biggest surgery of the five. Once again, though, I had renewed hope. Hope that this really would be the final hurdle to overcome. I went into the surgery with a positive mindset and actual confidence in my surgeon.

The day after the surgery I went to my GP practice, just about managing to get there, lying on my side in the passenger seat of the car. I was told the new wound to the side was around 7cm long and very deep. It did scare me knowing that I now had two separate wounds to manage, especially one of this size and depth.

I wanted to read a part of my GP notes two days before the surgery to, once again, highlight the significant mental damage that pilonidal sinus has put onto my life: “ I called Frankie to see how he got on yesterday [at the hospital].

“He saw the surgeons and has to have repeat surgery again. Patient is feeling rather low – will keep an eye on his mood and report further deterioration.”

At the time of feeling so low, it’s now very clear to me how apparent it was to others. I would go to the GP and tears would fall from my eyes while my wound was examined. Silent, but uncontrollable tears. When you have 24 hours a day, seven times a week, to lay in your bed and think – it is one of the most dangerous mental positions a person can find themselves in. 

However, this surgery, as I mentioned before, felt different. The original wound was stitched together and I now had a large but clean wound to the side to act as a natural drain. I am not a religious person, but I found myself praying every day that the stitches had remained intact and the wound was looking healthy. 

I also had my new GP nurses by my side. And they both went above and beyond. One of the nurses was granted permission to come to my house to do my wound dressing as I was really struggling to get to the GP practice. Someone was taking time out of their weekend to make sure I was seen too. That’s something amazing that I can take away from this horrible part of my life – I will always be so grateful for those two and what they did for me.

One week after my surgery, I was back at the hospital with an appointment with the surgeon. I was told everything was looking great and I would return in one week’s time to have the sutures removed. 

That was a painful 30 minutes. The sutures had nested into the skin, which made it incredibly hard to remove them. After the four surgeries and countless general anaesthetics, I asked the surgeon to just remove them without any anaesthetic inside of me – all I had in my mind was to get those sutures out and continue on my positive healing journey. 

And then I was free. I walked out of the hospital in pain, but this time it was a different pain. For a brief moment, a smile appeared on my face. A smile that meant so much. It was now, once again, a waiting game. Once the new wound to the side healed and the original one remained together, it was time to get my life back again.

But then came the deterioration. Day by day, I started to feel no difference in how things were going. The bleeding returned just a couple of weeks after the sutures were removed. The wound was slowly coming apart. Pus and fluids started to come from the original wound and I was put back on antibiotics at the start of October. 

While the main wound was collapsing, the new wound to the side healed excellently. It’s so difficult to judge; one day I was bleeding heavily and fluids leaking, the next it was settled and I started to get hopeful again. But that’s all it was – hope. It was never going to heal, I just couldn’t see it at the time.

The most frustrating thing was that I was being seen by the surgeon once a month post-operation. Each visit I raised my concerns and they were, pretty swiftly, disregarded. I started to doubt myself and what I knew. Could this just be part of the healing? They can see the wound better than me, so surely it must be fine?

And this went on for the rest of 2022. I was slowly losing hope, day by day, and it was getting to a point where I felt like I had lost the battle. No longer was I having fluctuating days with bursts of optimism or happiness, just a straight line of continuous darkness and, above all, sadness. All I wanted was normality. All I wanted was to see Izzy (my girlfriend, who was absolutely incredible throughout the entire process) happy too. It was so hard pretending to be fine when I was with her. But she knew.

In November, we started to get desperate. My main GP nurse referred me to be seen by a Tissue Viability Nurse (TVN), which is incredibly difficult to get. We had to send them pictures and explain my situation. We had tried this before but they rejected our request.

At the time of this second referral, my GP notes said: “I am awaiting contact from TVN so we can decide how best to proceed as we don’t seem to be getting any further forward.

“Frankie is understandably concerned but I have reassured him that there is no sign of infection at present.”

Unfortunately, TVN once again refused to see me in person, but this time they sent me a wound care plan. They wanted me to switch to ‘Octenilin’ wound gel instead of Flaminal. They also stated to use a ‘Cavilon’ Spray, which acts as a ‘barrier’ for the wound. So, just before Christmas, I was on a new plan and, once again, a short, abrupt wave of hope and optimism surged through my body. The fire wasn’t completely out yet, and I had to keep going. I had to find the spark from somewhere.

And the first two weeks of the new wound care regime were the first time I felt momentum shifting. The bleeding slowed down, the exudate slowed down and we were seeing visual improvements. Marginal improvements at that, but it was something. The wound started to create fibres going across, which is what it does when it is trying to close together. It was trying so hard to close and heal, but there was just something stopping it. 

At the time, I was just being patient. I told myself that it would come together and heal. I demanded it. I spoke it out loud when I was in the shower. I was going to beat this and we were so close to the end now.

But that, unfortunately, wasn’t the case. As I entered 2023 with renewed optimism, it wouldn’t be long until the slow mental deterioration would creep back upon me.

I want to also get across the point that it wasn’t for a lack of trying. I was so careful with my diet. I had not touched alcohol since the very first surgery. I don’t smoke. I was providing my body with healthy food every day to give myself the best chance of healing.

After some encouraging signs from switching to the new aftercare routine from the TVN, the healing stagnated. The wound was stable, but it remained in a state of being close to healing. Fibres continued to build across and then break. No matter how attentive we were, it just was not progressing to the next, crucial phase of healing. 

I then started to encounter bleeding problems again, and that’s when my mental state reached the lowest point of this entire recovery process. I was heartbroken. For so long had I forgotten what hope or progress looked like, that when it greeted me again, the effects of it being taken away from me were heightened. 

I was a mess going into the GP practice. Once again tears had returned with no real emotion behind them. My face was a blank canvas and inside me, everything had collapsed. I had no motivation for anything or anyone. For the first time, I had accepted my fate. This was my life now. There was no escaping the surrounding darkness. 

But then a flicker of light emerged, and I have one of my GP nurses to thank. I was more than a patient to her and she was more than a nurse to me. After the recent shift in my mood, she demanded that I be seen in person by someone from TVN. It wasn’t a request this time – and she told me that they may just have something that could shift the momentum back into the right direction.

February 16th, 2023. This was the day I was seen in person by the TVN. During the visit, I was recommended something called ‘metronidazole 10%’ as a healing cream. It’s something the TVN had heard of success with wound healings for pilonidal sinus. However, it was something that could not be bought on prescription, so I went away to research it and see what I could find. 

And what I tell you next, you could not write.

When searching ‘metronidazole 10%’ on Google, I found an article on a clinical trial of the drug for a case study of non-healing pilonidal sinus open wounds following surgery. There were 80 participants, all adults and in the same situation as myself. But there were no results online for the trial, so in a desperate attempt, I emailed the contact address saying:

“Hi there, 

I am currently someone who is faced with a non-healing pilonidal sinus wound. 

I have had 4 surgeries and now I am trying to heal the open wound in the cleft area. 

I am now tempted to try metronidazole 10% after seeing this study, but I cannot see the results. 

Please could you tell me what the results were for this trial and whether you would recommend I do this? I have been trying to recover for over a year and I’m desperate. 

Thank you so much,

Frankie.”

I got a response from Justin Slagel first thing the next morning. They were testing a topical ointment called ‘Ortem’ that they developed with a surgeon specifically to treat non-healing pilonidal sinus wounds. 

The most surprising part of this? Justin lives in the same town as me. This was a massive breakthrough. I was referred to see Dr Carapeti, who now operated privately, in London for a consultation and if he saw fit, he would provide me with Ortem. This was a different feeling from before. Being seen by a specialist who developed a cream specifically for the situation I found myself in.

I booked in to see Dr Carapeti on March 7th, 2023, a date that was about to finally change the course of my future – and for the right reasons. Justin also, extremely generously, offered to pay the initial consultation fee for this appointment. Justin was amazing from the very first email and he instantly understood the situation I was enduring when we spoke on the phone.

When the day finally came, I made my way to London Bridge full of nerves. My heart raced every stop closer on the train. Once again my Mum was with me, as she was every step of the way. This was the first time I felt like someone was going to know what was actually wrong with me. 

And that’s exactly how it played out. Dr Carapeti looked at my wound and within two minutes realised the issue. There was a tunnel connecting both wounds and it was never going to heal inside. He told me I would require surgery, but he knew exactly what surgery I needed and he would provide me with Ortem and the correct aftercare instructions. 

It was a bitter-sweet moment, but the most important conversation of my life so far. Dr Carapeti gave me Ortem and told me what to do from now until the surgery date. The most crucial thing he told me was to digitate the wound.

Wound digitation is something I really want to highlight to anyone in my situation. Previously, I was told not to touch the wound and leave it to heal by itself – this is simply the incorrect information. Wound digitation is when you get your finger and rub up and down on the wound. The wound may bleed to start with, but it prevents overgranulation and allows the wound to heal slowly from the bottom up.

Please, if you are in my situation, you have to digitate your wound. I will explain more about how I did it following my fifth and final surgery…

April 11th, 2023. Surgery number five. Once Justin found out I would require treatment, he offered to cover the cost of the surgery and aftercare. I will never forget such a moment of kindness and generosity. He allowed me to be seen and operated on by Dr Carapeti. And the whole experience was completely different to what I had experienced before. 

When I arrived at the private hospital, Dr Carapeti explained what the surgery would entail and what he planned to do. He was going to sort the tunnel problem inside and provide the correct open wound base for healing. He offered me a level of reassurance I had not received before and explained exactly why he was doing the surgery he was. I finally had confidence that this was going to be my final surgery and we could see something happen in this recovery that we had not yet seen…actual recovery.

For the aftercare this time, I was told to apply Ortem once a day onto an Aquacel strip (not ribbon) for the early phases of healing. After one week, Dr Carapeti told me to start wound digitation again. I stuck to his requests rigidly. I followed the same process daily:

Go to the toilet. Digitate the wound in the shower with my finger. Apply Dermol 500 Lotion to clean the wound directly and wash it away with water from the shower head. Dry the area by patting it dry with non-sterile gauze swabs. Apply wound irrigation solution to the wound and pat dry again. Apply Ortem to the Aquacel strip and place it just inside the wound. Cover with a Mepore dressing.

That routine was my daily process. Nothing stopped me from doing this every day until I saw Dr Carapeti two weeks after surgery.

And when I did see him, Dr Carapeti was happy with the progress. He now wanted me to continue with the Ortem cream on the wound but I did not need the Aquacel strips anymore as the wound had now gone past the exudate phase and Ortem was enough with a dressing.

So I did the exact same routine minus the Aquacel strips. Dr Carapeti wanted to see me again in two weeks and that visit was even more positive. 

The wound was healing. I noticed it. My Mum noticed it. My girlfriend noticed it. My GP nurses noticed it. But most importantly, Dr Carapeti confirmed it. On the second visit, which was four weeks post-surgery, he actually wanted to slow down the healing as it was going so well and he wanted the wound to heal at a pace that would allow it to come up slowly from the bottom. I was told to ease off using the Ortem and continue to digitate every day. 

I could not believe what was happening. Every day, the wound looked clean and edged closer towards closing. I was told it would take 8-12 weeks to fully heal and I was ahead of schedule. Once again my diet remained consistent full of healthy food, high in fibre and plenty of protein. Nothing was going to stop me this time – this was the final stretch. 

June 1st, 2023. My third visit to see Dr Carapeti post-surgery came seven weeks after the initial operation. I could not believe the words that were spoken to me. I still can’t quite believe it now.

“The wound has healed.” What? This did not make sense. I could not believe it. I went into a state of shock, followed by a smile that had not been seen for over 18 months. I thanked Dr Carapeti, repeatedly trying to emphasise the point that he had no idea what this meant to me. 

But he did understand, which is the harsh and sad reality of pilonidal sinus disease. This cruel condition is something that spreads wide across the world and the UK does not have the correct information for surgery and aftercare.

I followed my visit up with an email to Justin. It said:

“Hi Justin, 

I hope you and your family are doing well? 

I saw Dr Carapeti on Tuesday and got great news again! The wound has closed and healed. He said it may come apart when doing exercise and stuff but that is normal and it will just be part of the remodelling phase. 

He is seeing me again in 2 months to check the progress and offer me advice for laser hair removal treatment around the area. 

I really cannot thank you and Dr Carapeti enough. I’ve finally started to live my life again. I went on my first run, my first bike ride, and now I’m driving again!! 

Even sitting down for dinner is a massive thing for me, so thank you.”

Everything about the timing of this seemed too good to be a coincidence. The football team I support, West Ham, had reached the final of the Europa Conference League – a match against Fiorentina on June 7th. In my calendar, I circled the date of eight weeks post-surgery like I was told. That date? June 6th. Everything fell into place in my life. I bought tickets to the final with my brother on the smallest of chances that I would be able to attend the match in Prague. As soon as I was told the news, we booked our flights and travelled out on June 6th, the day circled on my calendar. 

What made me think that everything was meant to be was the fact that we won 2-1 with a 90th-minute winner. West Ham had won their first major trophy in 43 years and I was there with my brother to witness it. We became European champions in dramatic fashion and that day remains one of the best days of my life. I stood there in the stands crying, but this time it was tears of joy, jubilation, happiness. It was just so perfect and I never wanted the moment to end.

Two months later I saw Dr Carapeti and told him that the wound remained healed and I continued to live my life again. I could put my own socks on. I could sit down to eat my dinner. I could drive my car. I could smile again. He told me he was so happy for me, shook my hand and discharged me.

It was the end. We had done it. Months of suffering were resolved in two months by Dr Carapeti and Justin with the help of proper aftercare and Ortem. I still think back to the moment I decided to search on Google for answers to the Metronidazole 10% treatment. It was a moment of desperation that changed my entire trajectory. 

I am now about to start laser hair removal treatment around the wound to reduce the risk of recurrence. It’s something I hope to be able to discuss next year in more detail for those also looking at this option.

My final message to anyone is that this is not something that defines you. There are countless days of feeling like this will never end, but please never give up. You will beat this. If you are UK-based, go and see Dr Carapeti for a consultation. He will have the insight and knowledge that you just might need. 

Ortem is currently available as an unlicensed medicine as it undergoes a Phase 3 clinical trial. If you think that Ortem would be suitable for your treatment, please contact your doctor who can prescribe it on a ‘Specials’ basis. This means that Ortem will be charged as a regular prescription.

Every person and situation is different, but what remains a constant is the unspoken problem of pilonidal sinus disease. I am determined to make a change and if just one person reading this case study takes something positive away from it, I will be happy. 

If you have any questions at all, or you just want someone to speak to, get in touch with me – frankie.levin@gmail.com. I know exactly how difficult it can be and if I can help in any way possible, I will.

Remember – it will get better. It does get better. You are not alone. Pilonidal sinus disease will not defeat you, it will simply be a small period in your life that becomes a distant memory.

End Notes of Recognition:

I want to say a massive, indebted thank you to both Justin Slagel and Dr Carapeti. Without their generosity in paying for my treatment and providing me with the correct aftercare and information, I would still be struggling today. Nothing I can do will ever repay that, but from the bottom of my heart, thank you.

Thank you to both of my GP nurses (you know who you are!) You both went above and beyond to ensure I was seen, even if I did not have an appointment or if it meant coming to my house to care for me post-surgery. You are both absolute stars and I will always hold a special place in my heart for you. 

Also, my girlfriend Izzy. You stuck with me throughout the entire process and I know it was not easy for you. Once again, nothing I now do can show the gratitude and appreciation I have for you, but it’s made me love you even more as a person. I am so lucky to have you by my side and we can finally live our lives again!

I wanted to give a special mention to my Nan, too. She would take me to the GP surgery when my Mum physically couldn’t and it meant a lot to me having you by my side. Thank you, thank you, thank you.

And last but not least, my Mum. Not only did you give up your own life to care for me, I know exactly how hard this process was for you. I never wanted you to see me so upset and I would not have been able to get through this without you. You sacrificed so much for me and I know you would do it all over again if you had to, which is what makes you even more special. I will never be able to give back what you gave me and have given me my whole life, but I will always be there for you if you ever need me. Thank you so much.

The post The Unspoken Problems of Pilonidal Sinus Disease appeared first on PNS Hub.