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Elizabeth Carr-Ellis, 55, a journalist from Newcastle

Elizabeth Carr-Ellis, 55, a journalist from Newcastle, was horrified when she realised her hairline was receding. It took six years before she found out the true cause. And it’s made her determined to ensure women are better informed about menopausal symptoms.

As told to Marina Gask

The first sign that I was going through the menopause was a change in my appearance. After a day out with friends, l was looking back through the photos, and I noticed I looked different – what had happened to my hairline? It had receded and I was devastated. I was only 47 and loved looking good. Distressed and anxious, I went to see my GP who told me I had male pattern baldness and there was nothing she could do, apart from giving me blood tests to check my iron levels, as hair loss can be a sign of iron deficiency. As there was nothing amiss there, all I could do was change my hairstyle. I just had to get on with it.

After a while I started wondering if my hair loss was linked to hormones. I’d noticed I was getting menopausal symptoms, like hot flushes and aching joints, and, checking my symptoms online, I realised hair loss was one of them. It was a distressing time, having to live with all these symptoms as well as a receding hairline and a bald patch. But I naively thought a good diet and HRT would restore the oestrogen levels and put my hair loss right, both of which I tried, to no avail. However, it wasn’t until six years after that first trip to the GP that I learned from a trichologist that in fact I wasn’t suffering from male (or even female) pattern hair loss. Instead, it was Frontal Fibrosing Alopecia – and it was irreversible.

Frontal Fibrosing Alopecia is a condition that mainly affects post-menopausal women. It is a form of scarring alopecia that leads to hair loss, receding hair line, and loss of eyebrows, eyelashes and body hair. It is thought that hormones and the change in menopausal hormone balance may be partially responsible.

The symptoms of Frontal Fibrosing Alopecia include an itchy or painful scalp and a rash along the hairline, face or scalp. For me, I noticed a redness around the roots of my hairline and an itchy scalp. Then I’d get a white scale around the root that would stick to the hair, which would soon fall out. I now have about an inch of shiny, smooth skin at the top of my hairline, while the sides are wispy and very, very thin. And my eyebrows are vanishing too.

I cannot tell you how much the hair loss has affected my confidence. I have to style my hair meticulously to disguise the hairline. The rock ‘n roll quiff that I used to love wearing has been relegated because it shows off the bald spot and I have to be precise where my parting is to prevent it from showing. Now I try to style my hair so that it covers as much of my forehead as possible – it takes a lot of hairspray and time.

I’ve looked into hair transplants, but they are not deemed suitable for most cases of scarring alopecia because with this condition, the results have not proven long-lasting.

I was able to get a steroid cream from my GP to treat the area but otherwise, all I can do is use products to help improve my scalp health and make my hair thicker and fuller. For now, my hair loss seems to have stabilised. But with Frontal Fibrosing Alopecia, the hair loss doesn’t all happen at once and can take many years, with periods of remission. So, I don’t know if there’s more to come. It makes me feel so down sometimes. Overall, I’ve just had to come to terms with it, but I do have bad days.

The infuriating thing is that when I first noticed my hairline was receding, the doctor fobbed me off. I know there are great doctors out there – I was just unlucky. If I’d been more informed about menopause when the symptoms first occurred, I would have known I was perimenopausal and could have sought professional specialist help sooner and potentially got treatments to help to slow down or halt further hair loss.

My menopause journey has not been an easy one and it’s made me so angry that I was left in the dark. The thing is, many women, like me, begin the menopause without realising it. As well as hair loss, I experienced palpitations, anxiety and aches in my joints – each a classic menopause symptom, if only I’d known it. Yet, in GPs’ surgeries, among the posters on the wall for breastfeeding clinics, the signs of stroke and heart attack, there wasn’t one single piece of literature about menopause. Why, in a GPs’ waiting room, was menopause a taboo subject?

I was so enraged that I decided to do something about it. So, along with some friends I’d met online, we created the #KnowYourMenopause poster, which lists the most common symptoms of menopause. We have campaigned tirelessly to get the poster in every GP surgery in the UK. It’s also displayed in workplaces, libraries, gyms and hospitals. We have even been on BBC Breakfast and presented it to MPs in Parliament. It’s been translated into a number of different languages. The aim is to ensure that women know what menopause symptoms are before they start experiencing them. It not only helps them understand what they’re going through but also makes them feel less alone and helps break the taboo that surrounds menopause.

Losing my hair has made me feel ugly every day. But it’s made me determined to help others. Being a journalist by profession has enabled me to research what I’m going through and speak to experts. Sharing my story on my blog, 50sense.net has meant other women going through menopausal hair loss can feel more informed and less alone. I’ve heard from many of them, thanking me for my honesty about the symptoms and treatment available. My doctor didn’t refer me for specialist help, but hopefully these women will know to insist on it.

You can visit Elizabeth’s website here, or to get the poster for your workplace or community head to www.pausivity.co.uk/

And for tips and tricks on how to look after thinning hair check out our conversation with hair guru Josh Wood on Instagram: https://www.instagram.com/tv/CeIrP9cIFpT/

 

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