My Story. Part 4. Aquagenic Pruritus and Systemic Nickel Allergy Syndrome

 

I just exercised. Ran for 20 minutes and did a strength workout. I got sweaty and stinky (my kids will attest to that, they like to sniff around and say “ew, you stinky mama!”). It was 8pm, my kids were awake, I knew I wanted to get them to bed… but I also wanted to shower first. I hopped in the shower… bathroom door open to keep an eye on the 3 year olds… used body wash… rinsed off… and stepped out into the cold, un-humid bathroom to dry off and get dressed.

It took all of 5 minutes.

And I’m not itchy.

At this point you are probably thinking, so what? You’re not itchy… big deal. 

But for me it is a big deal.

I honestly can’t pinpoint when it started but I know it was sometime in college (as my roommates will attest). Somewhere along the line the strangest thing started happening… I would get incredibly itchy after showering.

Towards the end of high school I had decided that I was allergic to chlorine. Whenever I would go swimming, especially indoors, my skin would start to itch like crazy. And getting out of the pool into the cold air, showering in the cold water, and peeling off a cold swimsuit always made it worse. Eventually I began to avoid swimming altogether. Even though I loved it.

Then in college that same itchiness made it’s way into my regular routine. Showers. I felt so strange… so abnormal. I mean, who gets itchy when they shower? Not many people, I’ve learned. I started to develop OCD habits revolving around showering. I noticed I didn’t itch as much if I showered in warm (okay, BOILING HOT) water… but if the door was left open or someone walked in… the cold air made it worse. So I started to get extremely OCD about keeping the door closed so the humidity would accumulate. I learned over time that if I left wet spots on my skin, I would itch more. So I became anal retentive about using a bone-dry towel and drying myself off completely.

For a long time I just thought I had super sensitive skin. So I didn’t use scented body washes and lotions. And eventually I stopped using most skin products altogether. Shaving really made the itchiness worse, so I avoided that like the plague. I’d like to think that I avoided shaving for moral reasons… like women’s empowerment or to point out the ridiculousness of beauty standards. But no… it was just because I hated being itchy.

And when I say itchy… I mean itchy. Like scratch-my-skin-off-can’t-stop-won’t-stop kind of itchy. After I got married, there were times I begged AJ to sit on top of my legs to keep me from scratching them. My shins/calves were the worst. I would scratch my skin raw. Which, of course, would cause scabs to form and make shaving for an important event later even more difficult. Let’s just say I learned to LIVE in maxi skirts.

It was such a strange thing to deal with… itchiness caused by showering… but I learned to accept it as my normal. It wasn’t until the years passed that I knew something was definitely wrong. I began to get itchy when any kind of water or liquid touched my  shins/calves or my upper arms. Rain? Itchy. Sprinklers? Itchy. Spilled a soda? Itchy. Sweat? Itchy. On and on and on.

Without having any other valid explanation– I determined that I was allergic to water. For a long time I kept this pretty under-wraps. It was weird to have happen and was especially weird to tell people. Somewhere along the line I heard about a girl who lived in Utah that was allergic to water SO BADLY THAT SHE WOULD GET BLISTERS WHEN WATER TOUCHED HER. You can read about it here..

… at least I didn’t have it that bad.

But- it was bad. I started taking Benadryl every time I showered. I would avoid showering at all costs. I wouldn’t exercise because I didn’t want to get itchy, have to shower, and have an “itch fit.” I developed a tolerance to Benadryl, so one pill became two and then two became three. I was literally taking three Benadryl before every shower and I was STILL itchy afterwards. What is wrong with me? 

One night, AJ’s cousin and his wife (Madelyn) came over for dinner. Unfortunately, I had showered earlier in the afternoon and was still feeling residually itchy from it. I apologized for acting strangely and explained a little bit to Madelyn, who worked in a dermatologist’s office. She asked me about my symptoms and what I was doing to help it. I told her that I take 3 Benadryl before every shower and she stopped me. She informed me that even for super severe cases at the doctor’s office they never give 3 Benadryl. She encouraged me to find someone who could help me figure this out.

I decided to go see an allergist. I had to see one anyway to figure out if my food allergies had changed (pregnancy hormones can do crazy things to your body). It was an awful experience. He was incredibly rude to me and made me feel like I was an idiot for even considering that I was allergic to water. He told me it was the pipes that the water flows through. But I get itchy in the rain, I said. He told me it was sensitive skin. I have tried every allergy-free product I know and now I don’t even use body wash, I said. He grabbed my arm and started smacking it– it must be the water pressure that irritates your skin and makes it itchy! By this point I was stubborn and let him smack my arm for a minute just to prove it wouldn’t cause itchiness. 

But I was done. He didn’t trust me. He wasn’t listening to me. I felt so low.

I avoided the subject for a couple of weeks, when Madelyn called me up and excitedly shared that she had learned about a condition where people were allergic to water. She gave me a name, Aquagenic Pruritus, and told me to look into it.

The definition of aquagenic pruritus, found here.

“Aquagenic pruritus is a condition in which contact with water of any temperature causes intense itching, without any visible skin changes. The symptoms may begin immediately after contact and can last for an hour or more…. The legs are most frequently affected, followed by the arms, chest, back, and abdomen. More rarely, the head, neck, face and hips may be affected. The palms, soles, and mucosa are usually not affected.”

Whaaaaaaaat?

By this point I had started to advocate for myself and my vulvodynia… I had a lovely Gynecologist who trusted me and listened, really listened to the words that were coming out of my mouth. I thought, “If anyone is going to trust me that I am allergic to water… she’s my girl.” So at one of my appointments I opened up to her about it. You know it’s bad when you start the conversation by saying, “Okay- this is going to sound crazy… but hear me out.

And she did.

She heard me.

She said that she had never heard of aquagenic pruritus before. But instead of stopping there, she did something I have never seen another doctor do. She pulled out her computer and started researching. Right there in front of me. She found a couple of reputable sources and started asking me questions. I was so amazed. I felt so grateful… I finally had an answer.

Before I left she helped me find an online support group for people with aquagenic pruritus. She told me that we would each do more research and come up with a game plan for symptom management. I left wildly excited to learn more.


 

It is important for me to acknowledge here that I have since learned that I do not have aquagenic pruritus, even though that is what I thought I had for a few years. Even though I know I don’t have aquagenic pruritus, I wanted to write about it so others (who actually do have it) could read what it was like for me. My symptoms perfectly matched up with AP and I did find some relief by doing the things I learned about while researching aquagenic pruritus. If you have these symptoms, I highly recommend joining the Facebook Group: Aquagenic Pruritus Support Group.

Also, I hope you find an allergist who isn’t a total jerk about it.

Just remember to advocate for yourself! When others diminish your pain, don’t let it get you down. Keep searching. Keep trying to connect with others. And most importantly, keep trusting your journey.


 

So, back to my story.

After a couple of years doing whatever I could to diminish AP symptoms (like showering in burning hot water, getting lots of Vitamin D, and just having the peace of mind that I wasn’t insane), I went in to see a vuvlvodynia specialist.

In this appointment, I reviewed my medical history with Dr. Paul Summers (University of Utah) and when we came to the subject of my aquagenic pruritus, he perked right up. You see, Dr. Summers is an OBGYN… but he also has done extensive research on vaginal dermatology! He is the man who writes the chapters on the vulva in dermatology textbooks.

When he heard about my skin itchiness and about my extreme vaginal burning he helped me see that they were connected. I had previously thought they were two separate conditions… but it turns out they weren’t. He told me about how there is a connection between having a Nickel allergy and having the burning, itchy pain women describe with vulvodynia.

… I am feeling like this post is getting hecka-long. So I am going to stop here for today. I promise to write more about my Systemic Nickel Allergy soon.

After all, since changing to a low-nickel diet, my itchiness has completely resolved (except for on a very rare occasion). I can even shave with no itchiness. This truly feels like a miracle to me!