The constant pain that dominated my pre-menopause life

Naga Munchetty is not alone. My adenomyosis went undiagnosed for 25 years

Broadcaster Naga Munchetty spoke out about her adenomyosis diagnosis

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Earlier this week, broadcaster Naga Munchetty hit the headlines (although fewer than she should have done), by announcing live on air that she suffered from adenomyosis. The predominant reaction was, you suffer from what? Because, although 1 in 10 women in the UK have it, this debilitating gynaecological problem is rarely discussed and vastly less well known than its more famous cousin endometriosis (which, let’s face it, has only become a topic of conversation in the past decade or so because high profile sufferers made sure it was.) Now Naga has started to do the same for adenomyosis and its sidelined sufferers.

I did a double take when I heard her describe her symptoms, because I am one of the one in 10 – or I was, until I hit menopause (and I do mean menopause, not perimenopause). 

But before I go off on one, let’s take a step back. What even is adenomyosis? In a nutshell it’s excruciatingly painful and often extremely heavy periods, often accompanied by pain going to the loo, if you can go at all. (Sorry if that's TMI.) If you’ve got it, your GP might have described it to you as “just one of those things” or “bad luck” or “life”. Medically it is when the womb lining, the endometrium, makes its way into the walls of the uterus.

But back to Naga, because she explains it succinctly: "Right now, I'm in pain, constant nagging pain, in my uterus, in my pelvis, sometimes it runs down my thighs...every so often the pain changes, it becomes a stabbing pain and I can do nothing but sit with it or curl up to cope." (You can hear the full 90 second clip below.)

Haven’t heard of it? Nor had I – until I was diagnosed with it. Like Naga, who was diagnosed at 48, I was only diagnosed in my mid-40s after decades of painful, heavy periods that occasionally made me pass out. Like Naga, my periods were so heavy that I slept on a towel at least one week a month and for two or three nights of that week I'd be up every couple of hours to change my (super plus) tampon. One week out of every four or three or five. For about 25 years. And we didn't own a mattress I hadn't bled all the way through.

On bad days it was touch and go whether I could get through the 90 minute journey to work with a super plus tampon and doubling or tripling up on pads. On bad days I could get through an entire box of super plus tampons and start the next one.

Does that sound normal to you? (I hope not for your sake.)

It was the passing out that finally got me a diagnosis. I was editing Red at the time, and dashing across Oxford street en route to some beauty industry awards on Picadilly early one morning. As I turned on to Argyll Street my head began to spin. I recognised the signs, it had happened before but never in rush hour traffic. I remember seeing the pavement looming towards me and feeling powerless to stop it. I remember putting out a hand… and then nothing. Seconds later I was surrounded by people but – you know how it is when you fall over – all I wanted to do was get up and get going. How embarrassing.

I didn't hurt, not then, I was too numb.

It was only when I reached the venue and bolted into the loo that I could see the damage. Apart from swelling and bruising on my hand and wrist, my face had borne the brunt of the fall. The whole of the left side was bruised and grazed and starting to swell. I cleaned up as best I could, attempted a patch job which only made it look worse, draped my hair over the whole mess and went on with the day. Next day, still in agony (face and uterus), much to my husband's frustration, I went to Milan. I know. What an idiot.

When I got home, I went to my GP (for the tenth, twentieth, thirtieth time; the tenth, twentieth, thirtieth GP) and explained, as patiently as I could, what had happened, how often it happened, how long it had been happening, how disruptive it was to my life.

She (for yes, sadly, it was a she, a young woman who obviously had blessedly trouble-free periods. I jest. Ish) did blood tests, declared me chronically anaemic, asked me if I was vegetarian and when I said I was, sort of, and had been for years, sort of, she said well that was it: I must start eating red meat. I left with a repeat prescription for strong iron tablets and a flea in my ear when I asked if it might not have something to do with the, y’know, bleeding? Honestly, heavy periods, just one of those things etc etc on and on.

Only this time I was too frightened to take her dismissal at face value. I had narrowly avoided passing out in rush hour traffic, by a couple of metres or so, so I mentioned it to Red’s brilliant health editor, Brigid, who immediately recommended a gynaecologist she had seen herself. Lucky me, having a health editor on tap. Lucky me, then having a salary that allowed me to go private. I really do know how lucky that is.

Which is how Claire walked into my life – or, more accurately, I walked into hers – and changed it. Transformed it. I told her my story and, practically slamming her hands on her desk, she said something like, “I am so sick of this, it is not normal to be in chronic pain every month, it is not normal to be bleeding so heavily you can’t get to work, it is not just part of life.” Claire proceeded to tell me a story about another patient whose periods were so heavy and painful she couldn’t make it through the school run and had resorted to putting a bin liner on the driver's seat so she didn't bleed all over it. The poor woman had to sit on a bin liner to drive to her kids' school and back. A round trip of less than 45 minutes.

Normal. Bad luck. Just part of life.

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One ultrasound later I had a diagnosis: polyps and fibroids and adenomyosis. That was when I first heard the word that had governed my life without me knowing it, since I was about 20. Naming it didn’t make it go away, of course, but it did stop me feeling like a nuisance, like I was making a fuss about nothing.

The polyps and fibroids were removed and things improved a little, but adenomyosis doesn’t go away just like that. Claire had told me that the only way to properly treat it was to have a hysterectomy. I was resistant. It wasn't to do with having or not having children, it just felt so... final. But gradually I began to ask myself why, if it would get rid of the constant pain and the bleeding? So we discussed it again. And again. I was coming around to it, maybe, being unavoidable and decided to have another ultrasound. I was lying, naked from the waist down, legs akimbo (where does that word even come from?) when Claire stopped short and seemed to be peering at something on the screen. I squinted up from where I lay, trying to see what she was seeing. But all I could see was a black and white TV with a bad reception. 

Back at her desk, she hit me with it: in her view, there was no need for a hysterectomy, I was "almost all out of eggs". No eggs = no periods = no pain. No guarantees, but for many women there is a "cure" – and it is menopause. And so it was in my case. After perimenochaos, my periods waned, the pain eased, and the whole nightmare, gradually... stopped. 

Adenomyosis affected my entire adult life and now, in my mid-50s, it has gone. How much different could it have been if even a single one of the GPs I visited over the years had listened to me? How much different would it have been if they hadn't dismissed my pain and bleeding as just women's stuff? How much different would it have been if I'd had the confidence to make them?

That's why Naga Munchetty speaking out about her experience matters. That's why more of us have to. If this sounds familiar to you, make an appointment with your GP now, and please don’t stop until you’ve been referred to a gynaecologist. This is not bad luck, just one of those things or life. It is certainly not, as I’ve heard someone say, because you haven’t had children. (I haven't, it is not a factor in having adenomyosis, although untreated adenomyosis may well be a factor in not being able to have them.) Adenomyosis affects 1 in 10 women. If you’re one of them, do me a favour, do yourself one, demand help.

• In my experience, women's pain is endlessly sidelined and dismissed. What's yours?

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