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Dressing up for Hidradenitis Suppurativa

For those who have Hidradenitis Suppurativa (HS) or Acne Inversa, as it is also known, changing dressings is a daily or even hourly ritual. When HS is diagnosed, the patient’s disease is often given a stage of development, based on the Hurley scale of pain.

If you have early stages, you may have a limited knowledge of which dressings are available to you and may find this post useful – a novices guide to what’s available. However, those who have had surgery, incision and drainage and other more intensive procedures to remove glands and entire affected areas will probably have a far superior knowledge of this topic than I. Voila!

Getting dressed-up took on a whole new meaning....

Getting dressed-up took on a whole new meaning….

Micropore and gauze pads

I started trying to find different dressings when regular plasters were no longer big enough. I had the idea of using Micropore and gauze to cover the wounds and started off by buying 7.5 x 7.5 cm squares and regular Micropore. I would clean the affected area (in my case my groin, bikini line, entire genital and perianal area) with tea tree oil and warm water. Occasionally, I would apply organic Calendula oil or organic coconut oil to the spots before covering them with the dressings. The combination of healing qualities and soothing silkiness of the oil gave some relief to those tender areas.

I was amazed at the difference in quality of life such a small change had made. By covering the HS with the gauze, I could walk longer distances without getting sore. I still had to use sanitary towels, but felt the whole mess was a lot more manageable. After initially purchasing them myself, my doctor gave me a prescription for the dressings, including a larger 10 x 10 gauze pad and multiple boxes of Micropore. The larger gauze was much more effective, as I was beginning to need more coverage. Despite being happier, I was determined to find more ways to cover the suppurating wounds.

Mepilex Transfer 

My GP offered me a new dressing  - Mepilex Transfer, a silicone pad that adheres to the skin, but only really gently. As well as absorbing the exudate away from the skin and through to the other side, it provides a spongy and cushion-like layer against your delicate skin.

Mepilex transfer....the cushiony option

Mepilex Transfer….the cushiony option

Patch of pure perfection..

Patch of pure perfection..

My prescriptions in France are mostly reimbursable at 100%, but I still tried to be economical with the Mepilex knowing it was pretty pricey (around 26 euro/22 pounds/34 dollars for a pack of 16). I cut it up to cover my awkward and hard to reach HS sites and then strapped the whole area up with gauze and Micropore.

It was fantastic! I was so amazed at the technology of the whole thing. Where the gauze had worked by reducing the chaffing, this almost stopped it altogether. The exudate was concentrated in each area and looking at the Mepilex afterwards helped identify how many areas were weeping, or had healed. With Mepilex underneath the gauze, the dressing stayed in place over the wound and I did not get the same eye-watering shooting pain that I normally would just from taking a seat. It was no miracle cure, but boy, it was way better than just a pad in your underwear!

So I stopped there, right? No. I was still faced with the issue of having to change the pads every time I used the bathroom and was still looking for a waterproof option. I am not blessed with the strongest of bladders and just the thought of not being able to go pee makes me need to go again! Also the thought of using public toilets, whilst balancing over a seat, holding dressings away from your skin and then reapplying them or new ones, all with a 2-year-old clinging to my legs wasn’t inspiring me to leave the house!
I Googled away until I found this wound care sheet and other wound care information (the latter is for medical staff). It gave me a good place to start, especially as I was not seeing a dermatologist. Even if I was, it would have been good to have this info to take with me and demand stuff! I sent off some emails to the dressings companies, but they usually deal with dermatologists directly, so I set about pestering my lovely doctor and homeopath for some more prescriptions.
Duoderm – extra thin and bordered (Granuflex)
Bordering on comfort...

Bordering on comfort…

Sneaky peek at the hydrocolloid...

Sneaky peek at the hydrocolloid…

A-peel-able glimpse at the cushion finish.

A-peel-able glimpse at the cushion finish.

I mentioned on a previous post that I had intended to get Duoderm extra thin, thinking it would be a good waterproofing option. I wanted something I could leave on all day, without having to worry about changing it whilst I was out with the little one. Instead I ended up with Duoderm border, as featured above! It was a bit of a disaster, as I applied it with no knowledge of how it would work. It stuck firmly to my skin and the absorbent cushion layer was not what I was looking for on the whole waterproofing front. I had to take it off prematurely and it was all very painful!!

 I eventually got my Duoderm ET and after a rough start with the hydrocolloid dressings I decided that I needed to have a plan.
Extra thin and extra sticky

Extra thin and extra sticky

Wash the wounds and clean them before bed. Apply cut out Duoderm extra thin. Hold and mould against skin until it is firmly adhered. Leave in place for 24 hours and peel off after a soak in the bath or in the shower.

It worked, but alas, it rubbed/stuck together when applied on both sides of my groin/backside/top thigh area. This meant long walks with it were out, but it was perfect for long car journeys where using the rest room meant a quick in and out, with no awkwardness (other than hovering over a toilet seat – or the traditional hole in the ground!). The hydrocolloid absorbed the exudate and there was no chaffing from my clothes. If my HS had been elsewhere, I think both the Duoderm products would have been perfect for everyday cover.

Still undeterred, I spoke to the Pharmacist in my best French (probably more like primary school French, but I tried) and she showed me Hypafix. This was what I had been looking for all along – a thin layer of adhesive that I would be able to place over the Mepilex. It was 11 euro, and only 2 euro reimbursable, but heck, with all the free dressings I had had up until now, I was willing to pay out for this!

Deceptively papery...

I stick it where the sun don’t shine…

Hypafix

This stuff is a thin sheet of film. Trust me – under all that paper there really is just a layer of cling-film type stuff, that adheres beautifully to the skin. You cut it to size. Peel one side up to the red line, to expose the film. Stick it over your Mepilex patch, making sure you’ve got a good couple of centimetres around the dressing (if you can manage it – I couldn’t always due to the main offenders being on my bikini line and there ain’t much flat skin around there!) Peel the paper back and voila! A fully waterproof cover for your dressings. Now, I still had a few issues with keeping it stick to the skin, but mainly because my HS is all down below and pretty awkward to keep covered. However, it worked and I felt vindicated in my solo search for the waterproofing option!

Mepitel

The Pharmacist also recommended Mepitel, which my obliging doctor was happy to prescribe. it is a sticky meshing dressing and is to be used under another dressing. Again, I think this would be perfect for HS in other areas other than the groin, where the dressings do not need to be changed every bathroom break. Like the other dressings, it can be left in place for a long time and seriously reduces chaffing and promotes healing.

A sticky mesh...

A sticky mesh…

I hear that Medihoney is a really good dressing, too, but along with many others, I have yet to try it. It’s a wonderful world of technology out there and if you have the means, or a lovely doctor/dermatologist, you can get your hands on some super dressings to make the whole sticky mess a lot more comfortable.  Allez! Go try them!

I am currently dressing free, due to the antibiotics I am on. It is a relief, but only a temporary fix, so I may have to start strapping up my HS once the course is finished. Or not, if I manage to stick to the AI diet…wish me luck!

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Filed under Autoimmune DIsease, Dermatologist, Doctors, Dressings, Hidradenitis Suppurativa