Gemma Taylor had never heard of adenomyosis before she was diagnosed just last week, after a year of painful unexplained symptoms that her GP had put down to IBS. And she's not the only one. Adenomyosis is the even less well-known sister condition of endometriosis – but while endometriosis is slowly beginning to benefit from recent public awareness campaigns, adenomyosis is still virtually unheard of by patients and doctors alike.
"My symptoms started in April 2018, with abdominal pains and sickness. I thought it was a bug, but it just carried on. I was bloated all the time, feeling sick, having awful cramps where all I could do was lie down and wait for it to pass, and a combination of diarrhoea and constipation," Gemma, a 37-year-old marketing manager from Cornwall, explains.
"I noticed my symptoms were getting worse in the run-up to, and around the time of, my period, so I spoke to another doctor and was referred for an internal (transvaginal) ultrasound, where they found fibroids and adenomyosis."
What is adenomyosis?
Like endometriosis, adenomyosis is a condition caused by tissue similar to the endometrium (the tissue in the lining of the womb) cropping up in places where it doesn't belong. In endometriosis, this tissue occurs outside of the womb, whereas in adenomyosis it's found between the muscle fibres in the uterine wall – the myometrium – which can cause painful and heavy periods, as well as pain during sex, urination and defecation.
I couldn't really use tampons because the clots would literally push them out of me.
"Essentially, you've got tissue that bleeds every month sitting between those muscle fibres, which means they can't contract very effectively during your period," explains Dr Virginia Beckett, a consultant gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists.
Thirty-seven-year-old Jasmin Harsono, a reiki practitioner and founder of Emerald and Tiger, has suffered from both endometriosis and adenomyosis since her early teens, but was in her 30s by the time either was diagnosed – endometriosis five years ago, and adenomyosis three years later.
"After my endometriosis diagnosis, I kept querying some other symptoms. I had really scary, extreme clotting and was passing clots that were just gigantic, to the point where it felt like I was pushing out a number two," Jasmin explains.
"It was emotionally very draining. I didn't want to go out because I didn't know what to expect, and I couldn't really use tampons because the clots would literally push them out of me." Jasmin kept going back to her GP and was eventually referred for an MRI scan, which picked up adenomyosis.
How is it diagnosed?
This in itself is a relatively recent innovation, as Geeta Agnihotri, a consultant in maternal medicine, obstetrics and gynaecology, and spokesperson for charity Wellbeing of Women, explains: "Adenomyosis wasn't recognised gynaecologically much in the past. It wasn't really detected except after a woman had a hysterectomy, when the womb was taken away and looked at histologically (under a microscope)."
Today, she adds, the diagnosis can still only be confirmed histologically, but endometrial tissue between the muscle fibres of the womb can now be picked up on ultrasounds and MRI scans. Despite this, Miss Agnihotri says, "adenomyosis is a coincidental finding in the majority of cases. It's not usually something we were looking for."
How common is it?
For obvious reasons, therefore, it's difficult to get precise numbers on the prevalence of adenomyosis, but it's thought to affect around one in 10 women. The severity of symptoms varies, and about a third of women with adenomyosis won't experience any symptoms at all.
Adenomyosis is also believed to commonly coexist with other uterine conditions, like endometriosis or fibroids (non-cancerous growths found in the womb), as is the case for both Gemma and Jasmin. The Seckin Endometriosis Center in New York estimates that 40-50% of patients with adenomyosis are likely to have endometriosis, and 50% of patients with adenomyosis will also have cases of fibroids – but again, it's tricky to know for sure.
When is it most likely to occur?
Adenomyosis can occur in anyone who has periods but is most common among women aged 40-50 and those who've had children – particularly, Dr Beckett says, "if you've had an operation like a Caesarean section which breaches the muscle wall of the womb."
For 58-year-old PR professional Caroline Ratner, adenomyosis symptoms didn't kick in until shortly before the menopause. "I was about 54, not yet menopausal, when it started – I literally didn't stop bleeding, was in a lot of pain, and obviously also anaemic and exhausted," Caroline says.
"The GP just put me on progesterone, which did nothing, and told me it was all just part of the menopause. The pain was hideous, and I got these terrible pains in my leg as well."
It wasn't until a year and a half later that Caroline saw a specialist privately, who gave her an MRI scan. "He diagnosed adenomyosis and I had an ablation – a procedure that burns away the lining of the womb. It's been absolutely fine since then, although that's probably partly because I've now gone through the menopause," she says.
How is it treated?
In terms of treatment options, Dr Beckett says: "I'd probably start with decent painkillers and things like mefenamic acid, an anti-inflammatory which reduces the amount of bleeding."
Second in line are hormonal treatments, such as the contraceptive pill – "particularly the mini (progesterone only) pill," says Miss Agnihotri, "which is brilliant because it thins out the lining of the womb" – or Mirena coil. Alternatively, Dr Beckett explains: "We can use GnRH analogues, which are a long-acting injection that cause a sort of temporary menopause."
In more severe cases adenomyosis can be treated using procedures such as ablation, which surgically destroys the endometrium, or uterine artery embolisation, which reduces the blood supply to the uterus. A hysterectomy, removing the uterus, may also be considered as a last resort.
However, many of these treatment options aren't suitable for women, like Jasmin, who are hoping to conceive. "There is no real way of calming my symptoms down other than suppressing my hormones. But I'm going through IVF and still want to have a child, so I don't want to do that either," she says. Instead, Jasmin's making lifestyle changes and tracking her cycle to try and manage the worst of the symptoms.
What to do if you're concerned
If you're concerned about any gynaecological symptoms, see your GP and don't be afraid to ask for a second opinion if you're not satisfied. "I think GPs are far less aware of adenomyosis than they are even about endometriosis. It might have been just one little paragraph after endometriosis in the textbooks when they were at medical school," says Dr Beckett.
"You can always ask to be referred to a gynaecologist if you think your GP isn't listening to you, and there are also GPs with a special interest in gynaecology who work in the community, so don't take 'no' for an answer if your symptoms are bad," she adds.
"If you're flooding, if you're passing clots bigger than a 50p piece, if you're having to use a pad and a tampon, or double pads, if your period gets you up in the night – none of those things are normal."