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The 'evil twin sister' of endometriosis? What you need to know about adenomyosis
Recently, BBC presenter Naga Munchetty shared that she lives with adenomyosis, a condition in which the cells that line your uterus grow in the muscle wall of the womb. If that sounds slightly familiar, it's because it has echoes of endometriosis, in which those same cells are found in places such as your ovaries or fallopian tubes.
Here, in a piece first published in 2019, one WH contributor shares her story of dealing with both conditions.
What is adenomyosis?
Four years ago I’d never even heard of endometriosis, let alone its less talked about, so-called 'evil twin sister,' adenomyosis. Soon, I'd come to know these two illnesses intimately.
At 24, my periods left me bed-bound. It was 'normal,' my doctor assured me, prescribing me Ibuprofen, as if that hadn't been my first port of call when the pain took over my body, making leaving the house impossible.
What are the symptoms of adenomyosis?
A few months later, I felt a dull pain in my left hip that radiated down my leg throughout my period. Soon after came a sharp stabbing pain across my abdomen. My menstrual flow was heavy, with scary fist-sized clots.
And then there was the tiredness. I was depleted for the entire month, not just the days I was 'on.' To tie it all up with a shiny ribbon, I often felt horribly nauseous. The effect was that my career – along with my social life – went on hold.
Desperate to get some answers and tired of feeling ignored by my GP, I decided to stump up for some private healthcare. The end result was that two years ago I opted for a laparoscopy – a type of keyhole surgery, where a small telescope is used to peer at your internal tissue in your abdomen – in a bit to get to the root of my issues.
My surgeon, Mr Christopher Mann, told me he would look for endometriosis – when the tissue that lines your uterus grows elsewhere, such as your ovaries – and remove any he found. He was also the first person to fill me in on the existence of adenomyosis, a condition where endometriosis cells get inside the walls of the uterus.
While endometriosis and adenomyosis often coincide, and can cause similar sorts of pain, these are two separate conditions with different treatments.
'Adenomyosis typically causes central pelvic pain,' Mr Mann tells me over the phone. 'You can get pain coming down the back as well. It often causes painful periods and can cause pain during sex, as well as menstrual bleeding that's different to what's usual for you.'
Sure enough, my post surgery report confirmed that endometriosis was to blame for the problems I'd been suffering with, and Mr Mann also speculated that I had adenomyosis, based on how my uterus looked.
'The only real adenomyosis diagnosis can be made histologically [using a microscope]' explains Mr Mann.
Adenomyosis ultrasound scans
'There are characteristics that can be found during an ultrasound, MRI scan or laparoscopy that might indicate that you've got the condition, but these are presumptive and not always accurate.'
Adenomyosis treatments
As to what you can do to stop it from spreading its tentacles even further? Well, the response was disheartening. Mr Mann let me know that hormonal contraceptives like the Coil and the Pill can help to control the symptoms (these solutions are often also used to help women with endometriosis to deal with the pain) but they don't actually address the illness – only mask the symptoms.
Similarly, you can have hormone injections to create a fake and reversible menopause, but this can't be used long term. Alternatively, there's a procedure known as 'uterine artery embolisation,' in which particles are injected into your blood stream to cut off the blood supply to the adenomyosis. Again, this is temporary and can only be used for a few years.
When it comes to a way to get rid of the complication once and for all? 'The ultimate treatment is a hysterectomy,' Mr Mann says. The above treatments are all available on the NHS.
How many women have adenomyosis?
According to the latest NHS figures, around one in 10 women will deal with the issue, (the same number as have endometriosis) although one third may not experience any symptoms. It's not unusual for a woman who has one condition to also have the other, but that's not always the case.
Adenomyosis and pregnancy
Whilst endometriosis is associated with infertility, adenomyosis isn't. But, it may increase your risk of miscarriage or having a premature baby and so you're likely to need extra support and monitoring if you do get pregnant.
It's a long term condition, but should clear off when you hit the menopause – which of course is not much of a relief to the younger set that it affects. Age-wise, reports show that approximately 20% of cases of adenomyosis occur in women under 40 years, with 80% in women between 40 and 50.
Research from the University of Edinburgh suggests that the condition is found in up to 40% of uteruses that have been removed by a hysterectomy, indicating that it's a real player in the reasons as to why a woman would choose to have this procedure, even if they're not aware that this is the true cause of their intense menstrual pain.
It's thought that most women who suffer from adenomyosis are born with a predisposition towards it. As to its causes? They're largely unknown, though physical trauma to the uterus – such as having a C-section – can slightly increase your risk. This tallies with the fact that most conditions are diagnosed in middle aged women who've had children.
Living with adenomyosis
So. What's it like to live with the condition? Hazel, 36, was told that adenomyosis was probably at the root of her chronic pelvic pain when her pathology report for endometriosis came back negative, after she had key hole surgery.
The affects of the condition on her life are drastic. 'I'm unable to stand or sit for extended periods of time,' she says. 'I get tired easily and have to take strong painkillers just to function.'
Hazel would like a baby, but increasingly she feels a hysterectomy is on the cards if she is to get her life back.
Two years ago, Michelle, 34, made the difficult decision to have the procedure after years of being tormented by pelvic pain symptoms. An MRI showed signs of adenomyosis.
'My husband and I had moved from Australia to the UK to be closer to his family and to start one of our own,' she says.
But the agony of the condition escalated to the point that she became housebound and unable to work. The upshot? 'Despite turning our lives upside down in anticipation of having children, the decision to have a hysterectomy was an easy one. I needed my life back.'
Adenomyosis and hysterectomies
For Michelle, the emotional aftermath of her hysterectomy has been tough. 'We thought our lives were headed in a certain direction. People ask when I’m having children and my options are either to lie, or disclose things which are personal and upsetting.'
When it comes to me, just like endometriosis, adenomyosis has made me a more doubtful, fearful personality. I’ve become used to feeling like no doctor will believe me when I describe what I'm going through.
At times when my pain spikes, I'm left wondering if this is the return of the endometriosis I had removed, or the adenomyosis progressing. There's a lot of loose ends and 'what ifs.' I wouldn't even know with 100% certainty that I have the latter without an (irreversible and fertility destroying) hysterectomy.
Before my endometriosis was removed, I was unable to lead a normal life. I'm anxious about the day adenomyosis has that kind of sway over me. Resolving the condition once and for all is possible, sure – but the only viable solution is one that means shutting the door on my chances of ever conceiving and carrying a baby.
Adenomyosis: what next?
To zoom back out to the bigger picture, where do we go from here? Doubtless, we need more sophisticated ways of screening for the condition and for halting its progression. Not to mention an exploration of less drastic permanent treatments than having your womb surgically removed.
But the first thing that might make a dent, psychologically at least? More doctors listening to women when we say that issues around our periods and reproductive organs are destroying our lives.
Mentally at least, that would have made a real difference to me.
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