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PCOS and Hair Loss: My New Normal

  • August 13, 2019
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Written by: polycystic_coiffure


2011 – Before hair loss

The Beginning

I’ve never had a thick, luscious head of hair. For years, I got by with mousse, a teasing comb, and a shorter haircut to achieve more volume in my hair.  I had always lamented my thin and fine locks, but I had no idea how much worse it would get.

When I turned 30, I went off birth control because my husband and I were going to start trying to get pregnant.  Within a month, I noticed many changes happening to my body. 

My skin was breaking out like crazy. I was rapidly gaining weight despite no changes in my diet or exercise routines – and most horrifying, I was losing clumps of hair.

The shower drain was constantly clogging and it seemed that even more hair was coming out in my brush every day. 

I noticed my hair part was wider, my scalp was showing when I pulled my hair up, and my ponytail density was much thinner.

I panicked.  I went to a dermatologist who told me that my scalp “looked fine” and recommended that I get more sleep.  My primary care doctor suggested Rogaine as a solution but admitted that it wouldn’t do much to help my hair loss. It was devastating to lose hair so quickly and not know the cause.  I was desperate to find a solution.


wearing jon renau top notch

Finding Hair Toppers

One night, during one of my frantic Google searches, I came across a blog written by a woman who was losing her hair as well.  

I found out that she wore something called a topper, which clipped into her existing hair and covered her thinning scalp and straggly ends. 

It was like a light bulb went off – I’d never heard of a hair topper before, but it was genius! 

I spent a few days looking at various online retailers before selecting my first topper – a synthetic Jon Renau Top Notch.  When I clipped it in, I felt relieved.  It was subtle, covered my loss, and looked great. 

I was nervous to wear it to work at first, but decided that I would just be open and honest about it.

I realized that even though I couldn’t control my hair loss, I could control the narrative around it. To my relief, my coworkers, friends, and family were really supportive and curious! 

It gave me the courage to try some different pieces that didn’t match my old hairstyle and I finally felt I had the luscious, mermaid hair I always wanted.


Getting “Diagnosed”

By this time, I had found a solution to my hair loss but was still concerned about the changes to my body and health.  My husband I were having trouble conceiving and this also convinced me that something was wrong beyond losing hair.

It wasn’t until a year later when I finally went to my OBGYN to ask why I wasn’t getting pregnant, that I was diagnosed with Polycystic Ovary Syndrome (PCOS). 

Polycystic ovary syndrome (PCOS) is an endocrine (hormonal) disorder, which affects my whole body from my hair to my insulin levels, affects my fertility, and puts me at higher risk for diabetes and heart disease. 

PCOS can cause missed or irregular menstrual periods, which can lead to infertility and the development of cysts in the ovaries.

It’s not yet curable, but it can be managed with lifestyle changes and, if necessary, medication. 

Despite being diagnosed with PCOS, I felt relieved to finally have a diagnosis that explained what was happening to my body.

I also realized during the diagnosis that PCOS is tricky and not always well understood, even by doctors.  When my OBGYN referred me to a Reproductive Endocrinologist (RE) to help me get pregnant and reduce PCOS symptoms, I found that my RE was unconvinced that PCOS caused my hair loss (even when I took my topper off right in his office!).

He acknowledged that hair loss theoretically could be a symptom, but claimed that he had seen more patients with facial hair growth than scalp hair loss.  Because he lacked experience with this particular symptom, he was unable to provide me helpful solutions. It was frustrating to not receive validation from a professional who should have had more knowledge in this area.


Finding Peace

But by this time, I had made my peace with hair loss and was comfortable wearing my toppers. And after some time, my husband and I finally got pregnant!

While I continued to lose hair after I gave birth to my son and my “lush” pregnancy hair started falling out, toppers allowed me to not stress about my hair loss. I simply moved the clips on my toppers to avoid the thinnest areas and continued on with my life.

pregnant! wearing noriko milan

For me, I see hair loss as the easiest thing about PCOS to control – I can clip my topper in and go on with my day. 

Of course, I will always wish I had thick, beautiful hair growing right out of my scalp, but for the most part, I’ve accepted it. 

My vision is crap, so I wear glasses.  My hair is crap, so I wear toppers. 

The most important thing is looking after my health so I can be the happy mommy my son needs! 


My Advice on Coping with PCOS

wearing highline wigs topper

If you think you might have PCOS, ask your doctor for a referral to a reproductive endocrinologist (even if you aren’t trying to get pregnant).  They are experts in all things hormones and can work with you to manage your health. 

Hair loss can be one of the most upsetting and visible symptoms of PCOS, but this disorder affects the whole body and it’s important to have the tools and knowledge to take care of ourselves!


@polycystic_coiffure is a happy mom with a beautiful baby boy. She has an Instagram account dedicated to helping other women cope with hair loss and wear toppers with confidence!


Interested in writing an article regarding your experience with hair loss? Contact Strandie!

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Related Topics
  • hair loss
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  • PCOS
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