Despite being discovered around 50 years ago, adenomyosis is still a very misunderstood and under-diagnosed gynaecological condition. Unfortunately, in far too many cases, adenomyosis gets dismissed by doctors as being clinically insignificant or is incorrectly treated.
Probably the most important thing you can do if you suspect or have adenomyosis is to do your research and seek a referral to a highly skilled specialist, who has appropriate additional training to help you manage and treat your condition. Find out more about how to find the right specialist at the end of this article.
What is adenomyosis?
Adenomyosis is a common, benign disease of the uterus. It occurs when the inner lining of the uterus (the endometrium) breaks through the uterine muscle wall (the myometrium). Unfortunately, it gets worse with each hormone cycle, because it’s fulled by estrogen. Adenomyosis is a progressive disease, and will never completely go away.
One of the trademark symptoms of adenomyosis is heavy menstrual bleeding. In fact, the heavy blood loss as a result of adenomyosis is one of the biggest causes of iron deficiency in women. If you’re constantly taking iron tablets or having iron infusions, it’s time to get yourself to a specialist to investigate the underlying cause.
Adenomyosis can be just in one spot (focal) or spread throughout the uterine muscle (diffuse). It can be located on the front of the uterus (anterior) or back of the uterus (posterior), and can also be found on the top or bottom.
Reproductive and women’s health specialist, Dr Andrew Orr says, “Many people don’t realise adenomyosis is actually endometriosis, only it’s confined to the uterus. Histologically they are the same disease with mostly the same symptoms. Many women have both and do not realise it.”
Despite what you might read online, it has nothing to do with cancer, so please give Doctor Google and your sanity a break!
What causes adenomyosis?
The exact cause of adenomyosis is currently unknown. Several theories include:
- Genetic / hereditary
- Damage from uterine surgery – examples of uterine surgery include a D&C (dilation and curette) or c-section
- A fault occurring when your uterus was forming in utero.
Around one third of women who have adenomyosis are asymptomatic (no symptoms). Those with symptoms tend to find they worsen over time. Symptoms of adenomyosis may include:
- Heavy menstrual bleeding, which can be severe and described as ‘flooding’
- Blood clots during menstrual bleeding, which can be as big as a coin or as big as your palm
- Long menstrual bleeding, from 7 days up to the whole month
- Cramps (dysmenorrhea) which can be mild or feel like labour pain
- Bleeding or spotting between periods
Symptoms as a result of having adenomyosis may include:
- Fatigue / low energy
- Low iron and anaemia
- Lower back pain
- Pelvic pain
- Pain with bowel movements
- Irritable bowel-like symptoms or urinary tract infection (UTI) like symptoms
- Pain during intercourse (dyspareunia)
- Mental and emotional disturbances
- Pain with intercourse
- Low quality of life
The combination of symptoms of adenomyosis each person experiences is unique. Some women will have heavy menstrual bleeding and clots only. Others may bleed for longer than a week or two and have painful cramping. Some will have issues around bowel movements at various times in their cycle, and others won’t. There may be other issues as well, for example fibroids, adhesions or endometriosis.
Don’t compare yourself to anyone else – if adenomyosis is impacting your quality of life, you deserve treatment and relief just as much as the next person.
Diagnosis of adenomyosis
Many women are diagnosed with adenomyosis in their 40s and 50s after having children, but due to advances in technology, women are now being diagnosed in their 20s, and even their teens.
Sometimes adenomyosis is misdiagnosed as fibroids or other health problems due to the heavy bleeding or symptoms similar to other diseases. This is why it’s so important to get a proper look at the uterus and find out exactly what’s going on. This is also why general practitioners and family physicians should not be managing adenomyosis, nor prescribing you treatments, medications or investigations without a specialist’s recommendations.
The most definitive way of diagnosing adenomyosis is with a hysterectomy, as specialists are able to get a full view of the uterus. But because this is not practical, the next best way is a laparoscopy.
The myometrium is normally around 4mm thick. A myometrium thickness greater than 12mm is diagnosed as adenomyosis.
A laparoscopy is a minimally invasive surgical procedure, where a small incision is made (usually through your belly button) to investigate and diagnose what’s going on. A laparoscopy is considered to be the gold standard method to diagnose various gynaecological conditions.
Before a laparoscopy, most women will be referred to a gynaecological ultrasound clinic or sent off for an MRI (magnetic resonance imaging) scan. However adenomyosis may be missed in both cases, especially if the procedure is not performed by a skilled technician who knows exactly what they’re looking for. This is why a laparoscopy is much more accurate than any scans.
An MRI is considered to be more accurate than ultrasound.
Using a large magnet, radio waves, and a computer, an MRI can create a detailed, cross-sectional image of your internal organs and structures. You might be familiar with what the scanner looks like – a large tube with a table in the middle, where you lie down and are moved in and scanned.
The most common go-to method for diagnosing adenomyosis is an internal vaginal ultrasound, however, it’s the least accurate of the above methods. A skilled ultrasound technician who specialises in women’s gynaecological conditions should (but not always) be able to identify the markers. A ‘venetian blind’ effect is usually seen, as per the image below.
But unfortunately, many times this condition gets missed by ultrasound, and women are told nothing is wrong. Requesting further investigation is very important.
An ultrasound report positive for adenomyosis might look like the report below.
The treatment path you take will depend on your stage of life, and can involve a mix of medical treatments as well as complementary medicine and lifestyle changes.
For example, alongside medical management, you may get relief emotionally and physically with nutrition, traditional Chinese medicine and counselling.
For those planning to have children in the future, some options will not be suitable. But for those who feel their family is complete, every option is possible. Do your research, investigate risk factors, support yourself with lifestyle changes, and make decisions with your trusted specialist – not based on what you read on the internet.
Tranexamic acid is a drug used to help treat heavy periods by breaking down blood clots. It’s often used in combination with other treatments and is not a long term solution. Tranexamic acid is only taken during times of bleeding. Naturally, this drug has some risk factors to consider before taking it.
Hormonal pills (progesterone based)
Many contraceptive pills contain both estrogen and progesterone – but because adenomyosis is fuelled by oestrogen, you’ll likely be offered a progesterone only or progesterone dominant pill. The pill is one of the most minimally invasive methods of treating adenomyosis, but it’s not for everyone. The health risks of taking artificial hormones every day should be considered.
A Mirena is a progesterone-based IUD (intra-uterine device) which is inserted into the uterus by your specialist, usually under light sedation. The progesterone can combat estrogen locally in the uterus. One benefit is you don’t have to take pills every day, which get processed through your liver first. In severe cases, two Mirenas are inserted, as the level of progesterone needed is much higher.
The failure rate for Mirena insertion is around 20%, and women either love it or hate it. It may take a few months to work and you may still have pain or bleeding. Definitely do your research about the pros and cons.
Ablation is a procedure where the inside layers of the uterus are burnt in an attempt to prevent heavy bleeding. However, it can’t fully reach where it needs to. More than 80% of women who have an ablation will need a hysterectomy anyway. Ablation is not a suitable option for women wanting to have children.
Uterine artery embolisation
A uterine artery embolisation is a newer treatment for adenomyosis and fibroids, which is an alternative to surgery. The procedure is performed by a radiologist, usually under light sedation. A local anaesthetic will be given in the groin area. The aim is to cut off the blood supply to the fibroid or adenomyosis, so contrast dye will be used to map out the offending blood vessels. This treatment may cause problems for future pregnancies.
The aim of menopausal induction is to starve adenomyosis of estrogen. By doing so, it halts further progression of the disease. However, this effect is only temporary. This is why menopausal induction is only really used if you’re looking to get pregnant soon after treatment, or to try to limit significant bleeding before a hysterectomy.
A hysterectomy is the removal of the uterus, and is the only known cure for adenomyosis. Removing the uterus removes the myometrium, which is the only place adenomyosis can only grow.
Dr Orr says, “Unlike endometriosis, adenomyosis can be completely cured, but it means a hysterectomy. Whereas hysterectomy does not cure endometriosis, because endometriosis can exist outside the uterus. However, many women have both without realising it, because they have the same symptoms.”
Can natural treatments cure adenomyosis?
Just like endometriosis, there’s no cure for the actual disease state of adenomyosis. It cannot be prevented either. Dietary changes can help reduce inflammation (such as cutting out sugar, processed carbs and dairy) and therefore some of your symptoms. But it doesn’t make the disease disappear completely.
“It’s purely a genetic/hereditary disease. The only cure for adenomyosis is a hysterectomy. No diet, no supplements, nor any medications can cure or fix it – it can only help to ease symptoms. But even then, it’s complex and case-by-case and will require a multimodality approach. Be wary of cure-alls and people saying they can cure it, as it’s not true. At present there is no known cure for the actual disease state of endometriosis, or adenomyosis,” says Dr. Orr.
Can you get pregnant with adenomyosis?
Yes, you can still get pregnant. Specialists now know ways to help increase the chance of conception with adenomyosis. Adenomyosis can reduce fertility because the same arteries that run through the uterus wall are the same that provide blood supply to a baby. When the arteries are damaged, it can lead to complications such as miscarriage or pre-term labour.
Does adenomyosis go away with menopause?
You might hear adenomyosis goes away when you reach menopause. Your symptoms will eventually stop, however the time in which your body stops producing oestrogen is unique for every woman – it’s a gradual process over years. It all really depends on your current quality of life, and if you’re willing to wait possibly a decade or more of what you’re going through.
Don’t let dismissive or undermining doctors put you off
If you suspect you have adenomyosis, you’ll save yourself a lot of stress, frustration and quality of life by finding a specifically trained gynaecologist. You’ll likely need some form of surgery, even if it’s just a laparoscopy. So for the very best results, make sure the specialist is certified in advanced laparoscopic surgery, and has that certification from the Royal College of Obstetricians and Gynaecologists in your country.
Don’t let any old school, dismissive or toxic doctors stop you from proper treatment. Sadly, there are still many doctors who think period pain (even the more severe pain) is normal and you should just go on the pill. The pill simply masks any underlying issues and the damage can continue. There are very good specialists out there who do amazing work, helping women with both adenomyosis and adenomyosis. Don’t give up until you find one who will listen.
“Period pain and heavy bleeding is not normal – everyone needs to understand this,” says Dr. Orr.