A few weeks ago, I wrote about endometriosis in my column. I’m pleased to say it had a really positive response, with lots of you even sharing it with your friends and family. But I was also overwhelmed by questions from many of you about adenomyosis.
So in response to this demand, here’s everything you need to know about what some might call ‘the ugly sister of endometriosis’…
What is adenomyosis?
Hold fire, we need a quick anatomy lesson here… The uterus (aka the womb) is a hollow organ that is made up of three layers; the endometrium, which is the lining that’s shed when you have a period; the myometrium, which is the muscle layer that contracts when you have a baby, and even when you have a period, to help the blood escape; and on the outside is the serosa, which makes a thin lubricating fluid to prevent friction between the uterus and other pelvic organs such as the bowel.
Adenomyosis, which you’ll sometimes see shortened to ‘adeno’, is a condition where the endometrium grows into the muscle layer of the uterus. It’s estimated to affect one in 10 women.
What are the symptoms of adenomyosis?
Adenomyosis typically causes very painful periods, that also tend to be quite heavy. It can also cause pain leading up to your period and generally throughout the month, as well as during sex and when you go to the toilet to pass urine or open your bowels. Some people report bloating and a feeling of ‘fullness’, which can be mistaken for IBS.
Adeno can also cause anaemia due to the excess bleeding. This might cause you to feel very tired and short of breath with sometimes just minimal exertion, and it might even give you heart palpitations. Anaemia can be diagnosed with a blood test.
Adenomyosis itself must be diagnosed on a scan, usually an ultrasound, where the sonographer may describe a classical ‘venetian blind’ appearance. It is however estimated that about one-third of women with adenomyosis don’t actually have any symptoms, so if it does happen to be found on a scan and you’re not having troublesome periods, then it isn’t necessarily a glimpse into a crystal ball of doom for the future.
What causes adenomyosis?
No one really knows what causes adenomyosis. There are numerous theories flying around that relate it to female hormones, inflammation, enzymes involved in scarring and cell migration. In reality, it’s probably a perfect storm of all of these things combined with your genetics. In fact, a study published in 2016 demonstrated over 1,000 different genes that were different in women with adeno compared to women without. It’s also been shown to be more common in women who have Caesarean sections and other operations on the uterus, with the hypothesis being that the healing process causes the endometrium to grow into the muscle. Adenomyosis frequently co-exists with other gynaecological conditions, including endometriosis in about 20% of cases and fibroids in about 50%.
Does diet affect adenomyosis?
There aren’t currently any good studies investigating the correlation between adenomyosis and diet. My advice would be to keep a symptom diary if you think there’s a particular food that is affecting your symptoms, but seek advice from a nutrition professional before you seek to cut out entire food groups to make sure that you aren’t running into nutrient deficiencies.
It is important to make sure you’re eating plenty of fibre and leafy green veggies along with staying well hydrated. Why is that? So that you can do a good poo to help your body excrete the old oestrogen that it doesn’t need, as well as preventing constipation which could be worsening the pain of adenomyosis by putting extra pressure on your already inflamed uterus.
What is the treatment for adenomyosis?
If you google ‘adenomyosis treatment’ you’ll instantly start seeing the word ‘hysterectomy’ popping up e.v.e.r.y.w.h.e.r.e.
A hysterectomy is the removal of the uterus and it is by no means the first-line treatment for adeno. The type of treatment depends on exactly what your symptoms are and also your wishes for fertility in the future.
Simple treatments include painkillers, which, if they work, are safe to take on a regular, long-term basis. There are also medications that can reduce the amount of bleeding, if the amount of bleeding is a particular problem. The next option would be hormonal treatments including the oral contraceptive pill and the Mirena coil. These treatments can be quite life-changing for many women and they work by reducing the monthly thickening and shedding of the endometrium (lining of the uterus) that usually occurs when you have a period, which is the main source of pain experienced by adenomyosis sufferers. Many women say they don’t like the idea of ‘masking the symptoms’ by using hormones, but considering that we don’t know exactly what causes adeno, it’s currently the most targeted treatment we have to control the symptoms.
If these don’t work, the remaining options are much more invasive. Some doctors may offer a procedure called uterine artery embolization (UAE), which blocks off the blood supply to the uterus so that the lining can’t grow anymore. This is often a temporary solution and it’s not usually recommended if you do want to have babies in the future. The only way to cure adenomyosis completely however at present is to do a hysterectomy. For most women this isn’t necessary, although it is a big decision to make for those women who aren’t able to have their symptoms successfully managed by any other means, because it does mean they would not be able to get pregnant in the future.
Does adenomyosis affect fertility?
Possibly. There haven’t been any really well-designed studies to prove that adenomyosis itself reduces the chance of getting pregnant, but it has been inferred by the fact that adenomyosis is found at a higher rate in women who have trouble conceiving compared to the general population.
However, in this select population of women it has also been suggested that women with asymptomatic adenomyosis (ie. those without pain or terrible periods) who went on to have IVF had the same chance of getting pregnant compared to women without adeno.
So, the story really isn’t that clear cut, which is why you must remember to use contraception if you have adenomyosis and don’t want to get pregnant.
Images: Getty, Unsplash / Lead image design: Alessia Armenise