Health: Truth or Scare on HRT – or Hormone Replacement Therapy and Me, part two

Kevin Duala and Angela Rippon in BBC Health: Truth or Scare

When we left my adventures into HRT-land, everything was roses. I had been diagnosed as A Menopause Woman and sent off with a prescription for hormone replacement therapy.

Peace reigned.

Except it didn’t.

Three months after that happy day, I was still feeling paranoid, anxious, tearful and ecstatic – and now I’d developed itchy skin, too. The palms of my hands felt as if ants were having a rave in there, before they’d disco over to my waistband and boogie on down to the rest of my body.

Plus, I wasn’t particularly happy with what I was taking. All those news stories about HRT and breast cancer were eating away at me.

My sister had breast cancer in her mid-40s and I’ve been told ever since how I’m at “high risk”. Getting a mammogram once – my first in the UK after returning from Spain – the nurse told me she couldn’t advise me not to take HRT, “but if you can avoid it, I would, if I were you”.

So I went back to the GP. Not the one who had initially seen me – I hadn’t booked three months in advance – but a GP.

Who told me I had depression.

Now, I’ve suffered from anxiety and mild depression in the past. I’ve been there and took the tablets and looked admiringly at the T-shirts but felt too shy to wear them. But this felt different, so I told him that. But he was adamant.

To be fair, he wanted to put me on a month of Elleste Duet and a month of anti-depressants, to see if he was right.

However, the NHS sees some forms of HRT as consisting of two treatments: progesterone and oestrogen, even though it is dangerous for the majority of women to take one without the other and so the course of medication needs to have both. That means it costs double a normal prescription charge.

(I could rant about viagra being free for men suffering some sexual conditions, but I won’t. There isn’t enough internet available for all my words.)

Anyway, the GP’s suggestion would have meant gambling almost £27 on prescriptions, something that I as (a) a socialist and (b) a socialist counting pennies at that time couldn’t countenance.

So I reluctantly agreed to the Sertraline.

BBC Health: Truth or Scare

Fast-forward three months and not only did my existing symptoms continue, but taking Sertraline had kicked off my restless legs syndrome, meaning I wasn’t sleeping (anti-depressants can act as a trigger for RLS).

Added to that, I was being hit by the worst fatigue I’ve ever experienced in my life. Some days even getting out bed was a major effort. My arms protested at the effort of getting ready – something I forced myself to do even if I would never leave the house.

So it was back to the GP – my original one, this time, who got really cross with me for not booking appointments in enough time that I could see him. Because patients don’t have busy lives, obviously.

But he listened. He nodded. He empathised.

He bumped my Sertraline dosage up.

“And this is really going to solve all my problems?” I asked. “Even the itchy skin?”

“Yes.”

“And the RLS?”

“Yes. And if it doesn’t, we’ll look at changing your RLS prescription.”

Two sleepless, itchy, cossack-dancing, exhausting months later, I was at the end of my tether. Like Chicken Little, the sky was constantly falling in on my world, with even the littlest mistake at work being blown up until I got to the point where I couldn’t even look at the magazine for fear.

Which was when I saw a request on Facebook for women to talk to the BBC about HRT and the treatment they’d received.

Well, this poor researcher mustn’t have known what hit her. First I sent her a long email recounting my experiences – longer than anything I ever wrote at university – and then we had a telephone conversation filled with more: “And thens…” than I can count as I related all I’d been through in the previous few months.

A few weeks later, I was invited to the Shard to film for the BBC’s Heath: Truth or Scare programme, during which I’d receive a consultation from a Mr Haitham Hamoda.

When I was about five, Santa Claus got me a doll dressed as a jazz band majorette. She had red curly hair, a gorgeous dress and a big, white, fluffy hat. She was probably one of the best presents I’ve ever had – I even had my school photo taken with her.

Googling Mr Hamoda was better than that.

Clinical lead for the menopause at King’s College Hospital, co-author of the British Menopause Society Guidelines 2013 on the management of the menopause AND a member of the Medical Advisory Council for the British Menopause Society.

I’d hit the jackpot!

Come the morning of the shoot (I’m so showbiz now), I woke early. Between Madame Menopause playing her tricks, RLS and just, you know, the thought of baring my medical problems on TV to the entire UK – AND MY MAM! – I hadn’t slept a wink.

My make-up was crap, my hair was crap, my clothes were crap. But when I arrived at the Shard, the team were lovely and they looked just like normal people. So normal, in fact, that when I met the show’s Kevin Duala, who hosts alongside my hero Angela Rippon, I didn’t even realise and chatted menopause to him for ages. (Thanks, Kevin, you were lovely!)

There were four women involved in total and shooting worked like this: one of us would be filmed with Mr Hamoda, during which he gave a full consultation lasting 20-30 minutes, while another of us would do the filler pieces – walking into the building, getting coffee, looking at phones etc – and chat to the producer on camera about what we hoped to get and then, afterwards, how we felt about what Mr Hamoda had said.

Elizabeth Carr-Ellis BBC Health: Truth or Scare

Being a thespian with a Kevin Bacon of three, of course I took it all in my stride. Although those strides were a little too large and I tripped over my handbag on one take and burst out laughing. I expect to see it on the next It’ll Be Alright on the Night.

They didn’t want the four of us to mix – but the first thing the woman before me did was give me a big hug.

“It’s going to be all right,” she said. “He understands.”

It turned out she’d been fighting her doctors  for quite a while to try and get help, with all the same symptoms I’d been having. Menopause had completely turned her life upside down and she was at her wit’s end. To help, Mr Hamoda had told her to get referred to him.

“He was wonderful,” she added. Then said something that has stayed with me ever since: “No woman should have to suffer like this when there’s help available.”

It made me even more determined that, despite the nerves and the lack of sleep and the worrying about my clothes and make-up, I had to be as honest as possible. If I were putting myself through all this anxiety, then I wanted it to get the most out of it not only for me, but for any other woman like me who was watching. 

So I forgot about the camera and talked and talked and talked. Every symptom, every ache, every tired day and every worry came out. Even vaginal dryness was mentioned at one point.  

Mr Hamoda listened, without interrupting. Not once. When he did speak, he spoke to me like a sensible adult who didn’t need a Peter and Jane Go Menopause book to understand him.

But I think what counted most was that the knowledge he had about menopause oozed out of him. No reaching for books, no searching databases on his computer. He knew what was happening, why it was happening and how to solve it.

His answer was simple: an oestrogen patch and progesterone tablets* to deliver much-needed hormones and a testosterone test to see if a low level was the cause of my extreme fatigue.

As for my fears about breast cancer, he said I basically had no more to worry about than the next woman – and that that certainly wasn’t a reason not to take HRT.

I came out understanding why the first woman had hugged me. I wanted to do the same to everyone. 

Finding someone who listened to me as 50Sense, rather than me as a demographic check-list, almost made me want to cry. I was buzzing. 

Finally I had the knowledge of what was needed to be done and to be honest, it feels like a shield of armour. The constant weight of thinking I was losing my mind has gone. Everything I have felt is down to hormones, pure and simple. And they can be fixed.

Sadly, getting my own doctors’ surgery to follow Mr Hamoda’s advice was not so easy. “This is the NHS,” said the first doctor I saw. “I wish we could, but…”

However, I stuck to my guns and the fact I’d seen a specialist seemed to bump me up a couple of notches in the way they treated me.

She wasn’t sure about the treatment I’d been suggested, but she did flick through her book and found a patch she thought would work. I’m now on Evorel Sequi and apart from the really annoying black sticky stuff it leaves on its edges, six weeks on and it’s doing great. I’m having a few wobbly days now – my “period” has started – but I’m hoping they pass soon (in the meantime, soz to everyone at work).

She also agreed to a blood test to check me over, with my testosterone one of the tests.

But then my own doctor called me to discuss this result specifically.

Specialists had “left-field” ideas about these things, he said. “We expect women to be below two and you’re 0.7, so everything’s fine there.”

I am none the wiser. And that annoys me. It’s my body and I need information on what is happening so I can understand.

Elizabeth Carr-Ellis on BBC Health: Truth or Scare

What I’ve learnt from this experience is how badly women are being let down by the national health system. Women make up 51% of the population and around three-quarters of them will suffer with menopause. That’s almost 40% of the population for whom a natural process can have a detrimental affect on their lives and health.

But go into a surgery’s reception and you won’t see any leaflets about menopause available to help us. My doctor – and I’ve heard this repeated – had to print out information for me to read (I’d already read it and the site he highly recommended was no longer in existence).

A 2015 study found 69% of GPs said women didn’t understand menopause and this was impacting on their consultation time.

Without easy-to-read information, of course women aren’t going to understand what is happening. We’re left with Google, which gives you 56,300,000 results for “Menopause Symptoms”.

And let’s face it – many GPs don’t understand menopause, neither, which is why so many of us leave surgery with anti-depressants. 

Despite the number of patients that will be affected, GPs aren’t required to have menopause training. Nice, (the UK’s National Institute for Health and Care Excellence) only printed their first guidelines on menopause in November 2015. Less than four years ago. 

Nor do GPs take a holistic view of symptoms – trichologists have told me my receding hairline is classic menopause hormones at play; my doctor told me it was was “male pattern baldness” and there was nothing she could really do. Doing my own research, I realise various other symptoms that have had me to the doctors over the last few years can also be ascribed to menopause.

Added to that are the countless stories about doctors simply not giving out HRT, despite the Nice guidelines. Women are told menopause is “a natural process” and they should “get on with it”; that HRT is dangerous, and even: “This surgery doesn’t believe in HRT.”

I still don’t believe that Donald Trump is US President but the fact is, he is.

And the fact is: HRT works and, as Heath: Truth or Scare showed, it is not dangerous (unlike Trump).

This leaves women either not receiving any help or having to go and pay, which means we have a two-tier system for one of the most basic things in a woman’s life.

So if you’re a woman suffering and not getting the help you need, don’t stay silent. Dr Tracey Sims give a wonderful expert’s guide to menopause, while the best menopause sites on the web will help you find the people talking more in clear, understandable ways. 

Read them, do your research – and then lobby your local MP. You can find out how to contact them on the Parliament website.

Go to their surgeries and demand action. If not for you, for your daughter, niece, granddaughter, so they don’t have to suffer when they’re menopausal.

Write to Matt Hancock, the Health Secretary. Jackie Doyle-Price, the minister for health, has also tweeted about menopause, so why not give her a line, too?

In the meantime, make sure you know how to talk to your doctor about menopause. And if you think they are’t helping, demand a second opinion. Stage a sit-in, if you must!

Join the Twitter and Facebook groups discussing menopause.

And watch this space.

Because women have suffered in silence for too long. It’s time our voices were heard.

What have been your menopause experiences? Good or bad, let me know.

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*Edited as I’d written cream by mistake. Meno brain in action. My apologies for any confusion .