Last week, after a long, long wait, I finally had my patch testing for my suspected allergic contact dermatitis. I wanted to talk about my experience, as I did a lot of googling in the run up to it and couldn’t really find that much other than official ‘medical’ type documents. So, hopefully this will help anyone looking to know what to expect from patch testing (although hopefully not from the results, but we’ll come to that!)
If you’ve been following my blog for a while, you may be aware that I’ve been suffering with some sort of mystery dermatitis on my lips for some time (well over a year!) now. It appeared out of nowhere – suddenly they became red, cracked, sore and flakey. Not only painful and fairly unsightly, but making it pretty much impossible to wear lipstick for any extended amount of time as this just seemed to irritate the situation further.
Up to this point I’d already tried a lot – numerous GPs appointments and mistaken diagnoses of vitamin deficiency or possible inflammatory disease, giving up dairy (which seemed to work at first but soon made no difference what so ever), and an appointment with an immunologist for pinprick testing to check for histamine type allergies (the instant type reactions you get to say, peanuts) which all came back clear. A referral to a dermatologist (finally!) followed, where she basically banned me from all skincare products (which was unfortunately timed very close to me injuring my eye and having an eye makeup ban, causing me to write probably the most emotional post I’ve ever put up on this blog.)
Her suggestion was that it was the most annoying type of allergy – suddenly my body had become allergic to something it had previously tolerated. The next step was patch testing, where I would be exposed to a number of allergens over a week, trying to trigger a reaction and therefore work out what was causing the problem. At this point, this was pretty much the dream. All I want is a nice list of things that, if I avoid them, my lips remain like normal human lips rather than those of a lizard queen. (Seriously, they are uncomfortable and gross looking, should you be curious there are some pics of them at no where near their worst in this post.)
After 3 months waiting, my appointments came through, and I diligently blocked out the time in my diary. Patch testing is a pretty involved and time consuming process. I made sure I was working from home all week (apart from one booking for a talk that I couldn’t really move as it had been in the diary for over a year and I didn’t really want to miss out on the earnings, and it was towards the end of the week, which is when, I understood, I’d be the least uncomfortable.) Honestly, I felt very, very lucky to be self employed during this process. The leaflet provided in the run up to the tests says you’ll be fine to work, but I think if I’d been in a normal office environment during this time it would have been pretty difficult, for reasons I think you’ll see as I go on to describe the process!
So, on the Monday morning, off I went to Birmingham Skin Centre at the City Road Hospital. I was, as instructed, wearing a t shirt that I didn’t mind getting damaged, and an old bra (see, not exactly ideal office-wear!), and had with me a MASSIVE bag with all of my skincare products and makeup in. (You are instructed to bring with you all products that you use regularly.) After a sit in the waiting room I went in to see the Consultant Dermatologist, who promptly laughed at the amount of products I’d brought with me (apparently I had been beaten by only one woman, who had brought a suit case full with her, I feel like I could have won if I’d really tried, having only brought one lipstick from each manufacturer with me!!)
She went on to take a detailed history of my issues, cross referencing them with my notes and checking out photos from the ‘lip diary’ I’ve been keeping (Honestly, this would be a top tip from me – take loads of photos of any flare ups you have and date them and write notes about what you’ve been doing/eating/wearing/using, my lips were pretty good on both occasions I’ve seen a dermatologist and could probably be mistaken for normal dryness, the photos enabled them to get a good idea of what the problem really looked like and how often I experience flare ups). It was then time for me to strip off and she examined me to make sure I didn’t have any other problem areas (obviously it would be easy to miss them on your own back etc.) but nope, just my lips, and sometimes my hand (and on one occasion my eye but this seemed to disappear as quickly as it happened and has never happened again.)
At this point she went through the lengthy process of checking all of my products to see which would be tested, and here we hit a small snag. I hadn’t realised that the high end products didn’t tend to have ingredients listed on them as they had originally come in a box. So here’s my next tip – check if any products that you are taking don’t have ingredients on them, google them, and print them out to take with you for your first appointment.
I then went back out to the waiting room, and after a while was lead into a big room with curtained off areas where the patches would be applied. I had to take my top off and undo my bra, and pop on a robe, and then a nurse came into the room and applied the patches. 189 different chambers of allergens, both my own products and common irritants, were applied to my back, back of my neck, torso and upper arms and secured with surgical tape. I was then instructed – no working out, no showers, sleep on my side and tape a t shirt to myself at night to stop it riding up, and generally try to make sure the tapes remained in place. I was given a roll of spare surgical tape and sent on my way, around 3.5 hours after I’d arrived.
The trickiness of this became apparent as soon as I tried to pop my t shirt back on – any reaching or extreme movement and I could feel the tapes around my shoulders and sides start to come unstuck. By the time I got home I was pretty incomfortable – the tapes were quite itchy and I was so covered in patches that I felt like a surgical tape mummy! Also some of whatever they were testing started to seep through onto my t shirt, and I began to smell what can only be described as ‘chemically’. Fast forward through 2 very uncomfortable nights sleep taped into my jammy top and a couple of itchy, smelly day’s work from home (see what I mean about a ‘normal’ job not being ideal?!), the low point of which was probably one of the patches coming off my back almost completely when I changed my top and having to call Dan back from work to come and stick it back on as I couldn’t reach it (after trying such creative methods as using the handle of a hair brush, and placing tape on the floor and trying to reverse-crunch backwards onto it) and it was Wednesday morning and time to go back to the hospital.
The patches themselves were removed (which felt something akin to waxing. Ouch. Apparently men have their backs shaved before the process!), leaving just number tapes to identify what had been where, and a very sticky mess. A dermatologist came in and examined me to check for reactions. My stomach started to sink when he stated that there wasn’t ‘much sign’ but then the consultant dermatologist came in and reexamined me, and there were a few patches that showed signs of developing into a reaction. Time would tell on Friday. This appointment was again pretty much the whole morning.
So, by this point I was covered in sticky tape residue, and still unable to take a shower. Urgh. At least I could now get a better night’s sleep, and I managed to find an outfit that covered the remaining tapes and sticky marks so I could go and work on the Thursday night.
I became a bit obsessed with looking for reactions – there were a couple of pinkish areas, but there was also quite a bit of staining from whatever they had been testing so it was quite difficult to tell.
Friday morning, and I was back to the hospital. One dermatologist came in and examined all the areas where the patches had been. I could tell from his expression that it wasn’t great news. The consultant dermatologist came in and reexamined me. No signs of reaction.
My patch testing was completely inconclusive.
She seemed a little surprised when I completely broke down in that little curtained off cubical. She tried to reassure me that there was nothing sinister wrong with me, and didn’t really seem to understand that I believed her, and was just incredibly frustrated not to get any answers. Fortunately a lovely nurse was on hand with tissues!
So where does this leave me? Well, there are, apparently, a couple of possibilities. Firstly, that it is contact dermatitis and we just didn’t test the thing that’s causing it. However, the dermatologist seemed to believe that it was more likely that this is a case of persistent irritant dermatitis rather than allergic dermatitis, for which there isn’t a proper test. She thinks that it is a lip product or something coming into contact with my lips that is causing it, and any skincare or cosmetic product that I use elsewhere on my body or face isn’t an issue as I’d also be flaring up in other areas where I use it. An apparent possible cause is even my own saliva (although she did say that I didn’t appear to be an ‘excessive lip licker).
Her suggestion was, basically, bin off wearing lipstick. I explained again that it’s pretty much part of my job, whether it’s presenting myself professionally when styling or filming, or reviewing and testing lip products. Her reply to this? “Do you really have to wear it? You can wear other makeup.” I tried to explain that I was the colourful girl, the one with the bright lips every day, and although I know it’s stupid to be this upset when there were people around me getting diagnosed with skin cancer, that it had been a long and frustrating process and I felt a little like a piece of my identity was being taken away from me.
And, more importantly that I don’t even think that lipstick is the problem. Sure, it irritates and flares up my lips, but it only irritates something that is already, constantly, there – an uncomfortable, grainy-feeling tightness in patches over my lips. I can predict exactly the areas that will flare up, and they seem as likely to flare up with stress, or sweat, or getting chilli sauce around my mouth!
The suggestion at this point is ROAT, or, Repeated Open Application testing. So, twice a day for 10 days I apply a lipstick to my inner arm. Apparently if I don’t have an irritant reaction on my arm after 10 days, it should be fine to wear the product on my lips. I am a little sceptical, but more than happy to give this a go (and really do hope I am proved wrong!) and so since Friday I’ve been walking around with a little blob of Tarte Lipsurgence on my inner arm. So far, no reaction. But we’ll see, and I’ll keep you updated as to how the ROAT goes.
The good news is that I’m now off my skincare ban (woohoo!) I’ve been advised to reintroduce products one at a time after going ‘cold turkey’ for a few months, and so I have been very excited to start cleansing my face with my favourite Emma Hardie balm again. Hopefully this is just the first step to getting back to my old self again!