Despite being discovered around 50 years ago, adenomyosis is a condition which is still very misunderstood and under-diagnosed. 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).
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, putting them at increased risk of anaemia.
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 uterine muscle. 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. The most likely theories include:
- Damage from uterine surgery – examples of uterine surgery include a D&C (dilation and curette), termination of pregnancy, or a cesarean section
- Genetic / hereditary
- 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.
The combination and intensity of symptoms experienced is unique from person to person.
For example, you may have heavy menstrual bleeding, clots and loose bowels only. Or you may bleed for longer than a week, have painful cramping and hip pain, and urgency to empty your bladder.
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.
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 (longer than a week up to all month)
- Menstrual cramps (dysmenorrhea)
- Bleeding or spotting between periods
Symptoms as a result of having adenomyosis may include:
- Fatigue / low energy
- Low iron and anemia
- 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
What does adenomyosis pain feel like?
As with the symptoms, the pain felt from adenomyosis varies greatly from woman to woman, and is often within a wide range. For example, cramping can range from mild cramping, to labor-like contractions.
Some women describe feeling like they have a hot bowling ball in their pelvis. Some feel lower back pain, from minor aching to not being able to walk. Sharp, stabbing pains in the lower abdomen are also felt by other sufferers of adenomyosis.
Does adenomyosis get worse over time?
Unfortunately, the disease does tend to get worse over time, because it’s fulled by estrogen, which is present in each hormone cycle.
If left untreated, it will either remain the same or get worse. Either way, adenomyosis will never completely go away.
Diagnosis of adenomyosis
The myometrium is normally around 4mm thick. A myometrium thickness greater than 12mm is diagnosed as adenomyosis.
Many women with adenomyosis are diagnosed in their early 40s, after having children. But due to advances in technology, women are now being diagnosed in their 20s, and even in their teens.
Adenomyosis can be difficult to diagnose. Sometimes it’s misdiagnosed as fibroids or other health problems due to the heavy bleeding and symptoms similar to other diseases.
In a study by Eisenberg et al., researchers found a very high prevalence (89.4%) of sonographic signs of adenomyosis in women undergoing laparoscopic surgery for endometriosis.
These are all great examples of 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, and send a sample off to a lab for confirmation and diagnosis. But because this is not practical, we have to rely on other diagnostic tools.
MRI (Magnetic Resonance Imaging)
An MRI scan is considered to be the most accurate, non-surgical method to confirm a diagnosis of adenomyosis.
Using a large magnet, radio waves, and a computer, magnetic resonance imaging 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 easy to miss if the technician doesn’t know exactly what they’re looking for.
What does adenomyosis look like on ultrasound?
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 (such as an MRI) is very important.
An ultrasound report positive for adenomyosis might look like the report below.
Can adenomyosis be cured?
Yes, adenomyosis can be cured.
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.”
He continues, “It’s purely a genetic/hereditary disease. No diet, no supplements, nor any medications can cure or fix it, only ease the symptoms. But even then, it’s complex and case-by-case, and will require a multi-modality 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.”
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. After all, what we eat, think about and do with our bodies influences hormones.
Alongside medical management, you may get relief emotionally and physically with nutrition (focusing on supporting the liver, where hormones are metabolised), getting quality sleep, traditional Chinese medicine and counselling. Stress is a huge disruptor of hormones.
According to a recent, population-based study by Yu et al, 38% of women diagnosed with adenomyosis use chronic pain medications. Anti inflammatory medications help some women who suffer from mild pain. But for others, much stronger pain killers are needed, and sadly, sometimes these medications don’t take all of the pain away.
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 estrogen, you’ll likely (hopefully!) 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 (intrauterine 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.
An 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 endometrial ablation will need a hysterectomy anyway.
Ablation is not a suitable option for women wanting to get pregnant in future.
Some women have success with this procedure, but others wish they just went straight to a hysterectomy.
Uterine Artery Embolization
A uterine artery embolization 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.
According to the study by Yu et al., 82% of women with adenomyosis had hysterectomies.
If you retain your ovaries (which is the best option if they’re healthy), they should continue to work after your surgery, so you will not go into menopause. You will only go into menopause if both your uterus and ovaries are removed.
You will still ovulate and get the hormonal symptoms you are used to, but you won’t bleed every month.
Can natural treatments cure adenomyosis?
Just like endometriosis, there’s no prevention nor cure for adenomyosis. Dietary changes can help reduce inflammation, therefore some of your symptoms. But it doesn’t make the disease disappear completely.
Key foods to avoid include dairy, alcohol, grains and sugar. A low carb, ketogenic or paleo approach to eating is suitable.
Taking diindolylmethane (DIM) can help provide rapid relief from symptoms. DIM is a powerful estrogen lowering agent, so the effect for women with very heavy cycles is menstrual bleeding may be drastically reduced. It takes about 90 days of therapy to get relief, but results are often seen in the first month.
DIM is a compound found in cruciferous vegetables, such as broccoli, cauliflower and cabbage. Increase these in your diet as well. If your budget allows, organically grown produce is best, as these types of vegetables tend to absorb more pesticides. However, well washed vegetables are better than nothing.
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 labor.
Does adenomyosis go away with menopause?
You might hear adenomyosis goes away when you reach menopause, since this is when estrogen levels drop. Your symptoms will eventually stop, however the time in which your body stops producing estrogen 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. Some women reach menopause and still have pain. Waiting (or not!) is a personal choice you need to make.
Don’t let dismissive or undermining doctors put you off
If you suspect adenomyosis is the cause of your troubles, save yourself a lot of stress, frustration and quality of life by finding a specifically trained gynaecologist. For the very best results, make sure the specialist is certified in advanced laparoscopic surgery.
Don’t let old school or dismissive doctors block 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 or Mirena. Synthetic hormones simply mask any underlying issues, allowing damage can continue. There are very good specialists out there who do amazing work, helping women with both adenomyosis and endometriosis. 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.