Aquagenic Urticaria

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Aquagenic Urticaria: A rare and incurable condition in which urticaria (hives) develops after the skin comes in contact with water, regardless of the temperature. In a nutshell – an allergy to water – and my new diagnosis ๐Ÿคช

Is it an actual thing? Apparently so!

Is it something I’ve had all of my life? Nope!

Is it something that would ‘normally’ appear in your late 40’s? Nope!

My newly acquired “water allergy” only started about 2’ish years ago (give or take) and literally appeared from no-where ๐Ÿ˜ฒ

Nothing out of the ordinary was going on in my life at the time, well apart from ‘normal’ day-to-day bullshit that everybody deals with, but as I was drying myself off after having a shower one day, I casually looked over to the mirror and nearly had a frign heart attack!

My arms, chest, stomach, back, shoulders and hips were covered in these really weird looking reddy-pink splotches and as I was standing there, more were appearing.

W.T.F?

I raced downstairs to show my hubby who was just as shocked as I was, but while I continued on having a meltdown ๐Ÿ˜œ he took charge of the situation and started taking photos.

Within an hour though, and just like magic, every splotch that had been on my body had well and truly disappeared.

We didn’t know why, or what had caused it ? so just put it down to a (one off) reaction to the soap or shampoo – even though I’d been using the same products for years.

Unfortunately it wasn’t a one-off though and every time I showered – it happened again ๐Ÿคจ

We tried a process of elimination with different water temps, different time frames of being in the water, just using soap, just using shampoo, just using conditioner, and even using no products at all – but we still couldn’t work it out or pinpoint what was causing it?

The splotches were always never in the same place, were always different sizes, all seemed to be of a round’ish shape, always disappeared within an hour, and there was only minimal itching and/or irritation.

We couldn’t even find anything on good ‘ol Dr Google that was similar to what I was getting, so it was off to the doctor to see what he thought?

Now even though we took in plenty of photos, he really wasn’t that interested, and for whatever reasons he may of had ??? – he wouldn’t even get on board with the idea of sending me to a dermatologist. Weird ๐Ÿค”

Anyways this carried on for another 12 months, and even though I kept showing him up-to-date photos, he still didn’t want to do anything about it. We had no idea why he kept on dismissing (?) it as it was pretty damn obvious that something weird was going on with my skin.

Wait for it coz here comes the plot twist! ๐Ÿ˜ฎ

I’d gone to the emergency department for an unrelated issue and was asked if there was anything else going on that they should know about? I mentioned the splotches and we went though the photos on my phone, and that’s when it got – a ‘little’ interesting!

Two extra doctors came in so they could have a looksy-loo, and with each splotch location in the photos – they started checking that area of my body to do a comparison.

With none of them ever seeing anything like it before, they were all blown away and fascinated with what they were looking at and that’s when I found out that the splotches were actually leaving a weird skin lesion thingy-me-jig once they had disappeared.

Mind-blown!!! ๐Ÿคฏ

Now this was news to me as I’d never bothered to check my skin after the splotches had gone, so for the whole time I’d been getting them – I had no idea it had been happening.

Their theory at the time was some kind of discoid rash, but it was only a guess as they didn’t want to speculate.

They asked me why it hadn’t been checked by someone yet, and after explaining my GP’s attitude to it all – they were NOT.HAPPY.JAN!

They explained that I needed to see a specialist ASAP and gave me a letter to take straight to my GP – which I did. He eventually called after speaking to a dermatologist, and told me to have the photos ready as it was going to be a fast-tracked appointment.

Finally something was being done about it ! so all I had to do now was wait for this ‘someone’ he said was going to contact with me with the details of when and where?

I patiently waited, as you do, but guess what? No-one fucking contacted me ๐Ÿคฌ

Everyone was telling me to chase it up with the doctor, but I flat refused to do it as I was pretty much over the so-called ‘medical experts’ at this stage.

After about 9 months I still hadn’t heard anything from this so-called dermatologist, and even though I’d seen my doctor in that 9’ish months for prescription refills, he never once brought up the skin/dermatology thing with me.

FYI: this is where the timeline is starting to match up with the Relief vs Anger blog post (chapter 3) where I finally decide to get a new GP.

So with a NEW doctor now working through the list of thing’s to be done, that should of already been done, a referral was sent so we could finally get some answers of why this rash was happening every time I had a shower?

7 very long weeks later I saw the Dermatologist who, after going through all of the splotch and lesion photos – which included a photo timeline of how long it took for them to completely go away (approx 3’ish weeks) – diagnosed me with Aquagenic Urticaria.

Oh and apparently it has nothing to do with the Ehlers, but he couldn’t give me any answers of how or why this allergy had all of a sudden started?

He explained that it was very uncommon (rare) and antihistamines, and/or light therapy, were the only treatments for this incurable condition, and when I asked him if it will ever go away (?) he didn’t have a definitive answer, but told me probably not.

So there you have it folks! Another rare and mysterious medical condition to add to my already growing list of others! How bloody lucky am I? Not! ๐Ÿ˜‚

๐Ÿคฃ๐Ÿ˜…๐Ÿคฃ

Does it come as a surprise to me, or anybody who knows me? Nah not really.

For whatever reason, and you can believe this or not, having, and/or getting – rare, weird and mysterious conditions is a very VERY ‘NORMAL’ thing for me ๐Ÿคช

I can confidently say, without a shadow of doubt in my mind, that when it comes to my DNA/genetics – there’s definitely a whole lot fuck-ups ๐Ÿ˜‚

If it’s not one thing it’s another with me – AND – when it rains, it fucking pours ๐Ÿ˜‰

Yes it would be nice to know why it’s all of a sudden started so late in life, but it looks like it’s going to remain a mystery as this condition is still unknown – even to the experts!

Hugs / Peace Out! Essie โฃ