Meanwhile I bleed and weep

A further report from the land of menopause

I can only conclude that women are meant to be dead by the age of 45. Because no-one can have meant the menopause to be so long and so shitty.

Here I’m not talking about the women who sail through it, or the post-menopausal women who — lucky them — delight in their newfound energy and freedom, don’t require HRT, are having loads of sex and can’t remember the menopause anyway while they run their hands through their luxuriant gorgeous white hair. No. Because I am not one of those women. How I would love to be one of those women. I am one of those who is fighting her way through the menopause, claw by claw, and it has been going on for years.

A snapshot. I am sitting at my desk in my studio, trying not to weep. There is nothing that is making me weep except my hormones. This morning I felt the bleakness as soon as I got up. I know this bleakness. We’re almost friends by now. Sometimes I feel the bleakness, take my 50mg of sertraline with my porridge — along with half a banana and some chia seeds — and an hour later the blackness lifts and the day gets better.

Not today*. Today the day got worse and I couldn’t understand why. I did yoga as soon as I got out of bed, my only “I’m a smug git” January resolution (my other January resolution is to eat all the biscuits). I was looking forward to getting to my desk and reading yet more about fighting fishing trawlers. Instead, I am writing this with a catch in my throat that has no reason to be there.

[*Last week actually, when I started writing this.]

Except I realised about an hour ago why it is there.

For the past couple of years I have been mostly stable. Remember this piece I wrote for the Guardian? It has been the most widely read piece I’ve written in 30 years of writing stuff, and women still contact me to tell me they feel the same and that they thought they were the only ones/going mad/had early dementia. Some tell me that they feel a little less alone after reading it. I always write back (at least I think I do, and if I haven’t I’m very sorry). But slowly over time that piece, written in 2018, seemed to belong to another era, where I hadn’t finally after three or four years got my doses of replacement oestrogen and progesterone right, and realised that an anti-depressant may actually help too. Yes, three or four years. Being menopausal is to be an ongoing medical experiment. It is like being in a dodgem and I have always hated dodgems. You lurch forward on, say, 50mcg of oestrogen and several months later when you still have to sob in your car and you can’t sleep and your bones hurt, you go back to your doctor and they sympathetically say, let’s try you on a bit more. So you lurch again, and hit another obstacle, and go back to try something else. And so on and on and on.

I did that for years and then on 22 November, after I had been to see the GP about something else, he phoned me afterwards to say that actually I’d been on HRT for six years now and so I should switch from what a sequential regime to a continuous one. In menopause forum language (there is one, though it is a fraction of the Mumsnet acronym hell) this means I have gone from “sequi” to “conti”. Sequential means I take oestrogen continually, in the form of two transdermal patches that I stick to my stomach and which usually survive 30 miles running a week and a lot of sweat. And for 12-14 days a month I would also take Utrogestan, a micronised progesterone pill. I disliked this, because I react badly to progesterone. Every month, I would have two to three days of the usual deep bleakness mixed with numbness, where only a dark room and a warm cat were tolerable. But then my body would adjust, and the next ten days were mostly OK, although I always felt ravenous, fat and sleepy. After the progesterone stopped, I would get what most people would call a period, but which in the language of menopause, where everything is designed to be a simulation of how your body used to work before your hormones went haywire, they are “scheduled bleeds.” It’s only when you get to the menopause that you forgo the euphemisms — periods, monthlies — and get down to the reality. Bleeds. When mass blood donation started, the donors lay on “bleeding couches,” which I think was a) a more practical name and b) a pleasingly weird image.

Now I am on a continuous HRT regime, I must take progesterone every day. The idea is that this will stop my scheduled bleeds, so that I can stop having periods at the age of 53. In my head, it also meant that once I had had the initial progesterone upheaval, I’d settle.

No. No. No. Instead, my sleep is awful, for the first time since I went on HRT six years ago. I have had three bleeds in six weeks. My mood is low. And I am back again to the doctor because I’m back on the dodgem cars again. Maybe your oestrogen is too high? Or your progesterone too low? Let’s try this, or this, or this, and let’s see what that does. Brace yourself.

My GP surgery is excellent and I’m very lucky to be a patient there. In this instance, my GP was a young woman who was delightful. She was sympathetic, and most importantly she gave no sign that she was in a hurry or that I did not have all the time I needed to talk to her. But she was clueless. She didn’t know how much progesterone I needed nor why I was bleeding. She didn’t know if my dose was too high or too low. The continual questions in her voice did not really soothe me. “Maybe you can reduce your oestrogen?” Such an easy thing to say, but I hear it and see months of getting up every morning and fighting darkness for the entire day until I can sleep and switch off. Except for the sertraline dreams of course but I will write about those another time.

I left the surgery and went online to menopause forums, thinking I would not be alone and would get help. Other women must have the same experience. But it felt like me googling for an answer to something and finding something I’ve written is the first option offered. (This doesn’t happen a lot but it happens.) Instead I was told with confidence by women with no medical degrees that my oestrogen dose was unlicenced, that obviously I was getting the wrong dose of everything.

It didn’t help. I wanted help. And I think some of my mood slump was the shocking realisation that maybe I couldn’t get help, that knowledge is imperfect, and the only way to get back to feeling normal is to endure another few months of hurtling from one dose to another, crashing into one dodgem after another, until I find the brake. I don’t know when that will be. And I don’t know who can help me.

In desperation, I looked at going back to a private menopause clinic. I’ve been a patient at the Newson Clinic, and even drove down to Stratford to be seen (pre-pandemic and pre-online-consultatation). But they charge £290 for an appointment. I looked at another private menopause provider. £295 for 45 minutes. I got out my calculator. That’s more than £6 per minute. How can any medical advice be worth that? I tweeted angrily about menopause profiteering. I can’t see how such prices mean it’s anything else. And yet women pay for it because they are desperate, because GPs are overworked and get very little training in menopause, because the NHS menopause clinics are rammed and you won’t get an appointment for months. And even if you do, you may not even get your HRT prescription filled, as I wrote about here.

My GP has written to a special GP advice service run by the Leeds menopause clinic. Meanwhile I must wait. Or as I wrote to my friend, who is also dodgem-ing her way through menopause, “Meanwhile I bleed and weep.”

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A long time ago, I wrote a book about what it is like to be a refugee or displaced person. I remember sitting in the office of Mary Mount, then at Penguin, and we discussed where I should go (the book was, unusually, commissioned by Penguin rather than me suggesting it to them). Liberia, I said. It has the most displaced people per head of population. We got out a map and found out where Liberia was. And a few months later (I had only had six months to research and write the book and actually wrote it in 3 weeks, fuelled by a lot of coffee and at least two packs of sour Skittles a day), I was in a transit centre in the Ivory Coast, over the border from Liberia, where Liberians who had fled and applied successfully for resettlement to the US were being processed. They were giving a training programme to prepare them for life in America, and one element was that to call for help, you dial 911. This was ironic. The emergency number in Liberia—a country settled by US ex-slaves and known as Little America — is also 911. But for years there was nothing on the other end of the number. Any help was DIY and most of it involved running.

When I got back to the UK, I started to look for a refugee, a relative of someone I had met. I wrote this:

Alfred was my pet project. I’d asked in Monrovia and Cote d'Ivoire for people who had relatives in the UK. But nobody did. They were all in New Jersey or California. Who’d want to go to the UK? Finally, on the way to Nero Village, the International Rescue Committee staffer Simon-Pierre remembered that he knew someone who might fit. We stopped at a house, and children poured out of it, followed by a large woman in t-shirt and lappa [sarong], and a thin man. The woman was Viviane Toh, the man was her man, and none of the children belonged to her. They’d all lost their families, and she’d taken them all in. While Viviane told me her story, with Liberian haste and practicality – “I was attacked five years ago and I was raped and I’m still in pain” – her man ran into the house and brought out a piece of paper with Alfred’s name and address on it. I copied it down. None of it worked, when I tried to find him online. My pet project didn’t have prospects.

After a week, a thought occurred: Maybe a refugee wouldn’t scorn phone books like the British do. No-one I know is in the phone book, because not being in it is thought to be safer. But if you’re from Liberia, where landlines died out in 2002, and phone books are a hilarious concept, perhaps a phone book represents safety. Perhaps it means you do exist, somewhere. You are less invisible. This may be fanciful rubbish. But Alfred is in the phone book. 

Alfred answers the phone, and doesn’t sound particularly surprised to hear about his sister, though he hasn’t seen her for two years. He says it’s fine to visit, and will I be staying the night? What would I like to eat? Should he come and meet me at the station?

He didn’t meet me at the station. I didn’t stay the night. But I did see a man who although alone, was safe, in a tower-block in Sheffield. If he needed help, he could pick up the phone and help would be given. Meeting Alfred made me realise how extraordinary a thing that is.

To ask for help. For help to be given.

Except now, could he? Wouldn’t he be stuck waiting in an ambulance for hours at the back of a hospital? Would he then be stuck for days waiting in a corridor while desperate doctors and nursing staff try to deal with caseloads of patients that are three, four, ten times the size they were before the Tory government decided austerity was a good idea, along with Brexit? Before the NHS began to be dismantled, slyly, one service after another, one unbearable pressure after another?

I have read the frontline accounts from NHS staff. I have watched Ambulance and similar programmes and wanted to weep at the consistent kindness of people to other people (even with editing, I continue to think this is true). And I think I cannot bear to believe that the NHS is dying, because maybe that means that that powerful concept — of help being provided, when asked, for nothing — is also dying.

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Here is Animal Hero of the week.

We’re still in the Second World War, because animals were a common sight in ships at war on the sea. (I don’t know about submarines, actually but now I will find out.) I got this account from the excellent book on fighting fishing vessels, I Was There: When Trawlers went to War, by Paul Lund and Harry Ludlam, which you can buy here. And I really recommend that you do.

Ludlam/Lund don’t name the trawler in question, beyond saying it was “aged,” but that was no identifying factor in Second World War, when many of the fighting fishing vessels not only had First World War weapons but were as old as their weapons and sometimes older.

And on this trawler, there was a cat.

We had a black cat, which all our fishermen crew thought was very lucky, and once when we were due to sail they all stepped on to the jetty at Harwich and refused to go to sea, because the cat was missing. After a thorough search of the ship we found the cat in the provision locker lying under a sack of potatoes, nearly flattened but otherwise unharmed. And off we went to sea.

'We always wore our lifebelts at sea and the cat was the only one aboard without one. So one of the seamen got a Durex, blew it up and tied it round the cat's neck. It looked so funny, but we got used to it, and the cat went around like that for months. It really seemed the ideal thing.

And there you have it. The Durex cat. Next week, Able Seaman Simon.

Here are my New Year’s resolutions, if you must know:

• Do more yoga.

• Eat more biscuits.