Lichen Planopilaris Diagnosis

In January 2018 I was out to lunch with my mom and daughter when I noticed a weird pain in the top of my head.  It was a little tender to touch around the crown area but I chalked it up to the hat I was wearing must either be too tight or have rubbed my hair in a weird way.

Fast forward a few months and the pain hasn’t gone away and has spread just beyond the crown.  The best way I know to describe the pain is to liken it to the pain caused by wearing too tight of a ponytail.  When you finally take your hair down it aches.  It’s kind of a hurt so good pain and you get relief by massaging your scalp.  The pressure lets up even though the follicle hurts while the hair moves around.

Except with this pain there was never any relief.  It was just always pain when I would touch my hair, style it, even when it just moved around.  If my hair follicle experienced any type of movement it was excruciating.  I went to three dermatologists over three years and two states.  They all had their theories as to why I was in pain. The first doctor told me I wasn’t washing my hair enough.  The second doctor told me I was washing it too often.  The third told me I had extreme dandruff.  None of them gave me any help or relief.  I even consulted my cosmetologist for months and she offered her own advice.  Hers, too, was not helpful or accurate in the end but out of everyone she offered the most compassion.

I went to a new dermatologist in Kansas City in the fall of 2020l.  I was there for a skin check but when I mentioned my scalp problems, she immediately suggested we change the attention of the appointment to my hair.  She started inspecting my scalp and immediately found a bald spot.  She continued to look while telling me I had something called Alopecia Aerata.  I knew what alopecia was because I had seen a few tiktok videos of girls who had embraced losing their hair and were rocking their new looks.  I was inspired by those post but it never crossed my mind that I would be dealing with that.  I honestly thought you were born with alopecia. I didn’t realize it could happen at any time.

After a few minutes I finally said “I didn’t know alopecia caused pain.”  She explained that she didn’t think that was what was causing tenderness.  She told me she suspected I have something called Lichen Planopilaris (LPP) but we would need a scalp biopsy to confirm.  I had never heard of this before and immediately asked her to write the name down.  I told her it was so I could tell me family – which was only half true.  I was already planning to go down a google search spiral as soon as I left her office.

The biopsy didn’t hurt (at the time, was a little sore after) and required one stitch.  I spent the next few weeks waiting for the results and googling. I was pretty convinced I had it and it was finally confirmed at my next appointment.  They took out the stitch and explained the condition in more detail.   Basically, LPP is an autoimmune disease in which the hair follicle attacks itself.  This can cause the follicle to be extremely painful and tender.  Finally, once the follicle dies, it scars over.  As hair cannot grow out of scars this results in permanent hair loss.   So, LLP is a scarring form of alopecia.

The doctor encouraged me to do the following regimen: monthly Kenalog injections into the scalp, daily spirolactone and doxycycline, topical steroids, and Rogaine.   As the disease presents different for everyone, she couldn’t predict how fast I would lose my hair or my pain level in the coming months.  So, after three years of daily pain and without other options I dove into all the treatments.

It’s been two months since I started.  I have had Kenalog injections twice.  I will link a video of that process below and probably make a separate blog post about it.  I had to stop taking the oral medications.  One made me so dizzy I couldn’t stand and the other made me extremely nauseous.  Neither thing I can stand to be as I am a stay-at-home mom to a rambunctious, autistic four-year-old.  I decided to not even try the topical steroids after taking with others with the condition.  A lot of people hadn’t seen any relief with them and I was hesitant to begin steroids long term.  My current plan of treatment is monthly Kenalog injections and using Tea Tree Oil Scalp Treatment by OGX.  (You just buy this at your local Walmart or pharmacy in the shampoo isle.  Nothing special but is it a MIRACLE WORKER for me!)

I share all of this in hopes that someone else dealing with unexplainable scalp pain will find solidarity, possible answers, and hopefully relief. My DM’s on insta are open if you are suffering from hair loss or scalp pain.  I truly wouldn’t with this on anyone.  Losing your hair is hard enough, it shouldn’t have to be painful too.