Adenomyosis is a condition that many women haven't heard of, but it's way more common that you might expect. In fact, a pretty substantial number of people go about their daily lives without knowing that it's affecting them.
However, when it does rear its head, adenomyosis - which is essentially where the cells from the lining of your womb are found in the muscle wall - can cause life-limiting symptoms including heavy bleeding and extreme pain, and so it's crucial to get clued up.
Here are six things we should all know about the condition, and what to do if you think it might be happening to you...
You might have it and not know about it
Adenomyosis can occur in anyone of any age who is still having periods, and naturally stops after menopause. According to the NHS, around 1 in 10 women are affected by adenomyosis, yet many of them don't know it - because a third of them won't have any symptoms.
If adenomyosis doesn't cause any problems for you, it's unlikely you'll need to seek help, but two thirds of those women will experience pain because of their condition, and even if it doesn't present immediately, it could cause issues further down the line.
The symptoms can be severe
The two most prevalent symptoms of adenomyosis are heavy, painful periods that show up on an irregular schedule, or last for a long time, and significant pelvic pain and discomfort even when you’re not on your period.
Some sufferers also report having pain during sex, or when going to the toilet. However, these symptoms aren't exclusive to adenomyosis, which can make it tricky to diagnose, or identify individually. Which brings us to...
It’s not to be confused with endometriosis
"Endometriosis is endometrial cells that appear outside the endometrial lining of the uterus and are responsive to the normal menstrual cycle and hormonal influences. Adenomyosis is endometrial cells that are inactive and present in the muscle of the uterus called the myometrium," details Mr Fevzi Shakir, Consultant Gynaecologist and Endometriosis Specialist at the Royal Free Hospital in North London and Advisor to Endometriosis UK.
"Adenomyosis can be found in over 40% of patients with severe endometriosis and so differentiating the two can be challenging as they often co-exist." Research suggests that it’s also common to have adenomysis and fibroids coincidentally.
Diagnosis is a process
So how do you find out which condition your heavy periods and pain are being caused by? It's likely your doctor will send you for a pelvic ultrasound, or in some cases an MRI. "Definitive diagnosis, as with endometriosis, is with tissue biopsy. Sometimes this can be detected by endometrial biopsy," says Mr Shakir.
"If a woman has heavy, painful periods and/or difficulty conceiving and ultrasound is suggestive of adenomyosis there is a likely chance it exists. This differentiation of the two conditions and management is more likely to be made by an endometriosis/endoscopic surgical specialist, as they have the most experience in managing it."
It can affect your fertility
Because of the area of your body that adenomyosis impacts it can have a degree of control over your ability to conceive. In severe circ*mstances, or as a last resort, a hysterectomy may even be considered to relieve the pain, but typically, doctors are reluctant to offer this types of surgery until you've had children (if you want them, that is).
The decision will depend on your age, whether or not you've already tried other treatments, and how you personally feel about the possibility of the procedure.
But treatment options don't have to involve surgery
There are several other ways you can manage your symptoms without going through surgery. You may be prescribed hormonal medicines such as oral contraceptives or the Mirena coil, or non-hormonal medications which can reduce pain and bleeding.
There is also a procedure called uterine artery embolism, which is less invasive than a hysterectomy and aims to cut off the blood supply to the adenomyosis. However, this is not a long-term solution, and you may find that problems reoccur after a couple of years.
There’s a lot of research still to be done
Ultimately, the cause of adenomyosis is still yet to be confirmed, and there’s still a lot of research to be done to get to the bottom of how many people really have it, and why it happens.
However, in the meantime, you should always seek help if you think your traits might correlate - your doctor should be able to help you find a solution that suits your needs, and reduce the pain and heavy bleeding that can impact your daily life.
