2026 Update: The one I have been dreading

 2026 Update: The moment I have been dreading... Buckle up. It's a long one. 

*meds and action plan at the bottom for those who want to skip the storytime

This update is for my DWD girlies, because our hormonal changes make for constant navigation of flares that I have found only birth control, mindfulness, and skin elasticity focused supplements can help with.

That all got thrown out the window after nearly 20 years managing my DWD with all the above.

I hit perimenopause in June 2026. I had two irregular periods and went from this:

To this

I haven't had a flare like this in 20 years, back when I was first going through diagnosis in my 20's. I was beyond horrified, Germolene and Pine Bark and all the mindfulness wasn't doing anything to stop it. 

I went to see my family doctor who listened to me and heard I suspected my irregular periods were to blame - I was told in my 20's by that random angel of a nurse that when I hit my 40's my skin would change, what she didn't mentioned is that perimenopause would say "hold my beer" and double down on how awful it was to be. 

My doctor listened and asked if I wanted to see a menopause specialist - yes! Definitely! Ok see her in two weeks. And then she heard that I wanted more meds to control the pain and spread - so I needed to see a dermatologist, so she sent me to one that did clinical trials and more cutting edge stuff. I was relieved to have an action plan. Until then I was covering up with scarves IN THE SUMMER but I made it fashion: 

Bathing suit with scarf = vampire anime style?!?!

The DWD got worse, it was weeping, breaking, bleeding, and the day I saw the dermatologist I was migraining (likely from all the stress of this) and super depressed. I was hoping to discuss photodynamic therapy but quickly found I was not in a safe environment to discuss my DWD...

I was sent to clinical dermatologist Dr. Geeta Yadav, MD who was absolutely horrible.  Not only did she ignore my migraine (I told her I was migraining but she insisted on shouting at me and keeping the lights on full while we talked) but she also wouldn't listen to my hormones theory citing "I only treat the skin"

Baby. The skin is our largest organ and it literally holds us together - of course it's connected and influenced by a number of things. 

She gave me topical retinoids Arazlo: Tazarotene lotion 0.045% to put on the affected area, also saying I was "lucky" because women "my age" are begging for this to help with their wrinkles. 

Yes. That's why I'm here, I'm SO LUCKY to have a rare genetic skin disorder that my skin just cracks, bleeds, makes plaques, and feels/looks like a sun burn with itchy poison ivy on it... I'm clearly here for my crows feet 🙄 Then she said SEE YOU IN 4 MONTHS. Lady. I am actively bleeding and you don't want to see me for a SEASON?! 

I hated this whole experience. I cried in the car. I cried on the way home. I cried myself to sleep. 

But I did learn something from her - she mentioned a Scott Walsh at Sunnybrook Hospital that was a kind of specialist (unofficial) on Darier's!!! So I asked my doctor to set me up with him and thankfully it was only a month long wait. During that time I was using the topical retinoids which burned and peeled my skin, making it worse and it spread all along my chest, and some on my right torso...

I cried a lot. 

I saw the menopause specialist (unofficial just really knowledgable) and she said that it could be that the IUD's progesterone has helped regulate my hormones, and that yes this could be two irregular periods but we can't know for sure with the IUD in. We talked about hormone replacement should I opt to take out the IUD to understand my perimenopause and that might in turn help my DWD... But that means lots of changes like taking out the IUD. 

SO MANY DECISIONS. Not enough solid answers.

My birthday gifts were scarves, and I started to normalize my covering up with an OOTD type post hyping my "scarf game" and one of my posts inspired an artist friend of mine to draw me and I cried to see such a bold and confident cartoon of me - because I felt the exact opposite. Constant pain. Constant management. I was drained and it had only been two months. 

August 18th and I finally saw the specialist at the hospital, but not Scott Walsh, his assistant resident Dr Bridgman, who was exactly whom I have been waiting for these past 20 years!

She listened.

She validated.

She was warmly curious and empathetic. 

She made an action plan for me that made me - yes - cry - but this time out of relief. 

The action plan

She agreed that Darier's is VERY influenced by hormones. So ladies, look to your cycle management; I was on birth control pills until I was 35 and then moved to Mirena (the dip IUD) which has greatly helped keep my DWD in check for the past two decades. But with me coming to the end of the 5 year efficacy for the IUD no wonder I had breakthrough bleeding/irregular period. Dr Bridgman asked if I wanted to go back on birth control or start a new IUD cycle if that's what's working.

Dr Bridgman wanted to get my pain under control so she prescribed a steroid cream Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w) and to stop immediately the topical retinoid. She guaranteed I would feel less pain and have less irritation in 48 hours. I wept. For real. 
"Wow, the bar is really low with you huh?"

"You have no idea the 20+ years of no one having answer, no one caring to listen..."

Since topical retinoid is really harsh and acts an an irritant ("Why did she give you this?!" Dr Bridgman asked me) she prescribed oral retinoids, low dose to start, epuris isotretinoin capsules 10 mg

And then she recommended I carry a hypochlorous acid spray for when my skin bothered me and I wasn't home, and it would be too much to break out Germolene or to not rub something in to irritate it further - this spray is supposed to help with irritated skin, and for me she suggested a locally made one from E11ement which says 

• Gentle on Skin: Safe for all skin types, including sensitive and acne-prone skin.
• Natural and Effective: A powerful yet natural disinfectant that helps maintain skin health.
• Multi-Purpose: Use it to cleanse, hydrate, and protect your skin.

I tried it and smells like chlorine from a pool... It didn't burn? It didn't relieve like Germolene but it did feel good? I'll keep a small bottle on me and report back after a few uses but the idea sounds great. 

Now it's been 2 days and I have done the cream twice a day, and the pill once already - the cream is a DREAM I went down in redness and pain point IMMEDIATELY. Itchiness went down too. The pill is really low dose but it is supposed to cause dryness, like so much dryness that my lips and eyes could dry out too. Lots of moisturizer is needed. 

Before Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w)

After. Noticeably less red irritation after ONE application!!! 
(white shirt was day time clothing, black shirt was my PJs haha)

In fact I started making my own beeswax balm by adding beeswax, olive oil infused with calendula and coconut oil infused with plantain (not the banana!) and yarrow. This is really hydrating for me and doesn't burn, and doesn't dry out like most moisturizers. I'm experimenting with what hydrates the most and is also calming. 

Next steps:

-I'm going to stick with this regime for 5 weeks until I see Dr Bridgman again in September.

-I'm going to relay this to the menopause specialist and see what my migraines will allow for (birth control and hormone treatments are hard to navigate with migraine history...) and likely take out my IUD to see what happens (is this a dumb idea I don't know! But then I can either get a new more potent IUD or go back on oral contraceptions.)

-I'm doubling down on my sun protection as the oral retinoids mean I'm all more sensitive to the sun not just my neck area (nothing new I have hats and scarves and SPF 60)

-And I will keep up with skin support like Pine Bark, Zinc (Dr Bridgman loved to hear I was taking Zinc so I want to make more of that as a habit), magnesium L-Threonate a+ BisGlysinate, CoQ Enzymes, Vit D + B, Omega/Fish Oil. 

Wish me goodluck.