Like people with a uterus don’t have enough to worry about already (I mean women’s rights, reproductive rights, the gender health gap —  seriously, there’s a lot to worry about these days as a uterus owner) but one condition that can be a huge additional stress is adenomyosis. Causing crippling cramps, heavy bleeding, and painful sex, this condition causes significant problems for people who live with it, but worst of all, it’s so little known by the general public that many people who suffer from it don’t know they have it.

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If endometriosis is a condition that still doesn’t get the medical and media attention it deserves, adenomyosis might just be endo’s even lesser-known cousin (or evil twin sister for some). And while the two share similarities, they’re both conditions of the endometrial tissue that lines the inside of your uterus, they are two distinct conditions that have different effects on the uterus.

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So today, let’s learn about adenomyosis, how it differs from endometriosis, and what people can do to manage this painful condition. 

What is Adenomyosis?

Adenomyosis is a painful condition that happens when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. Even though the endometrial tissue is no longer nestled inside the uterus, it continues its normal monthly cycle —thickening, breaking down and bleeding — during each menstrual cycle, which it doesn’t take a doctor to realise would hurt a whole lot.

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(Side note: Even when endometrial tissue ends up in other parts of the body, far away from the uterus, it’s very dedicated to continuing its job of thickening and bleeding. In fact, there was one incredibly rare case of vicarious menstruation where a woman with endometrial tissue in her eyes cried blood each month. Geesh.) 

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While adenomyosis might sound similar to endometriosis, they’re actually different conditions. In endometriosis, cells that look like the ones lining your uterus show up in places outside the uterus, like on the fallopian tubes, ovaries, or pelvic lining. On the other hand, adenomyosis happens when the lining of the uterus grows into the muscular wall of the uterus itself.

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Now, here's the tricky part - both endometriosis and adenomyosis share some common symptoms, especially painful and heavy periods. That's why adenomyosis often gets mistaken for endometriosis or other things like uterine fibroids or irritable bowel syndrome (IBS).

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It's important to get the right diagnosis because the treatment for each condition can be quite different. So, if you're experiencing any of these symptoms, make sure to talk to a knowledgeable doctor, like one of our Hazel specialists, and get your symptoms checked out properly to know what's going on and how best to deal with it.

How Common is Adenomyosis?

It’s hard to put an exact number on how many women are living with adenomyosis, as it can be hard to diagnose (we haven’t even agreed on the standard testing for adenomyosis diagnosis, more on that below), but one study estimated that it is present in about 1 in 5 women and menstruating people have this condition, making it even more common than endometriosis, which is estimated to occur in about 1 in 9 women and menstruating people.

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Adenomyosis can happen in any person who has periods, but it’s most commonly found in women aged 40-50, and in women who have previously had children.

What are the Signs and Symptoms of Adenomyosis?

Adenomyosis is sometimes referred to as the ‘silent disease’ because some who have the condition may have no obvious symptoms, or they may have been taught that their symptoms – like painful periods – are normal, or their symptoms may be misdiagnosed for years before being attributed to adenomyosis. 

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But for up to two-thirds of people with adenomyosis, the most common symptoms experienced are as follows:

  • Painful periods, which can be severe, and can occur after years without pain
  • severe cramping or ‘stabbing’ pelvic pain
  • Chronic or persistent pelvic pain
  • Heavy menstrual bleeding
  • Anaemia or iron deficiency (due to heavy bleeding during periods)
  • Tiredness
  • Dizziness‍
  • Painful sex (dyspareunia)‍
  • Bloating and/or swelling in the stomach area
  • 'Adenomyosis belly’ – the not-so-cute nickname for the protruding abdomen some women experience as the uterine wall grows thicker. Unlike endometriosis, this can be cyclical and most people will have periods of normal belly mixed with bloating.
  • Urinary problems
  • Fertility issues
  • Enlarged uterus (sometimes felt during a pelvic examination or seen on an ultrasound)

What Causes Adenomyosis?

No surprises here —like many female and gynaecologic health conditions, the exact cause of adenomyosis remains a mystery due to the lack of awareness, research and funding into the condition. But there are a few theories as to why it occurs:

  • Microtrauma: Small injuries or damage at the junction between the endometrium and myometrium may lead to the abnormal growth of endometrial cells into the muscular wall. This could be why the condition is more common in women who have had a previous c-section. ‍
  • ‍Enhanced Endometrial Invasion: The endometrial cells may invade deeper into the myometrium than they should, causing the condition. (I know, what little jerks)
  • ‍Metaplasia: Some stem cells in the myometrium may change into endometrial cells, contributing to the development of adenomyosis.
  • ‍Retrograde Menstruation: This means that during menstruation, some endometrial cells may flow backward into the uterine wall from the outer surface, leading to their presence in the muscle layer. Because it’s super common, it’s often listed as a possible cause for all sorts of gynaecological issues (but as usual, more research would help determine if this is actually true!)
  • ‍Hormonal Factors: Unusual hormone levels, especially oestrogen, may play a role in triggering adenomyosis.
  • ‍Genetic and Epigenetic Changes: Changes in genes or how genes are regulated may influence the development of adenomyosis.

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Like many conditions that just affect people with a uterus, more research is needed to fully comprehend the exact mechanisms behind adenomyosis. 

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A lot more research is needed to determine the cause of adenomyosis to ensure more timely diagnosis, effective treatment and awareness for those with the condition. So if you’re at your local doctor feel free to make a fuss about it. 

How is Adenomyosis Diagnosed?

Despite the pain and problems adenomyosis causes, it’s fairly regularly misdiagnosed or brushed off as “normal period pain” because its symptoms (including painful periods, heavy bleeding, pelvic pain, and more) can vary from person to person.s. Additionally, because of the overlap in symptoms, adenomyosis can be mistaken for IBS,  perimenopause unless doctors undertake further testing. But that brings us to our next problem!

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Unfortunately, there isn’t one test for adenomyosis. This means it can take years and many tests with different providers before people with adenomyosis receive their official diagnosis.

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When adenomyosis is diagnosed, it’s normally a combination of medical history, physical examination, and diagnostic imaging. This process can involve the following steps:

  • Medical History: The doctor will first discuss your symptoms and medical history. Common symptoms of adenomyosis include heavy menstrual bleeding, severe menstrual cramps, pelvic pain, and an enlarged uterus.‍
  • Physical Examination: A pelvic exam can be conducted to check for any abnormalities in the uterus, such as an enlarged or tender uterus. Remember: if you don’t want a pelvic exam, speak up. Even in a doctor's office, you have body autonomy!
  • ‍Transvaginal Ultrasound: This imaging test is often the first step in diagnosing adenomyosis. A transvaginal ultrasound involves inserting a small probe into the vagina to get a detailed image of the uterus. It can help visualise any thickening of the uterine wall or the presence of cysts or masses, which are indicative of adenomyosis.
  • ‍Magnetic Resonance Imaging (MRI): In some cases, an MRI may be performed to obtain more detailed images of the uterus. MRI can provide a clearer view of the uterine structure and help differentiate adenomyosis from other conditions like uterine fibroids or endometrial polyps.
  • ‍Biopsy: While less common, in some cases, a tissue sample (biopsy) of the uterine lining may be taken to confirm the diagnosis. This procedure involves removing a small sample of tissue from the uterus and examining it under a microscope to look for the presence of endometrial tissue within the myometrium.

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If you suspect you may have adenomyosis or are experiencing symptoms related to it, don’t hesitate to get a professional opinion. That’s what doctors are there for after all! Make sure you book a consultation with a healthcare professional who understands adenomyosis for a proper evaluation and diagnosis. Our Hazel doctors are experienced in identifying adenomyosis (and the other gynaecological, gut and pelvic conditions that adenomyosis may be mistaken for) so that you can get diagnosed faster, and feel better sooner. 

How Can Adenomyosis Be Managed?

Just like the sneaky condition itself, the management of adenomyosis can be similarly challenging. Delayed or incorrect diagnoses, poor information and a lack of understanding of the causes of adenomyosis mean there is no silver bullet for feeling better.

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Treatment often involves managing the individual symptoms, rather than addressing the root cause,– and will depend on your symptoms, stage of life and whether or not you’re thinking of having a baby (or another baby) in the future. But don’t stress — there are options for management that can help a lot. Here are some common adenomyosis treatment options:

  • Pain Relief Medications: Yep. Just like with period pain. Over-the-counter pain relievers like ibuprofen (Nurofen) or Paracetamol (Panadol) can help manage menstrual pain and discomfort associated with adenomyosis.
  • Medicinal Cannabis: Some people with adenomyosis find significant pain relief with medicinal cannabis. Studies show that medicinal cannabis is effective for pelvic pain,  with effectiveness differing based on the method in which the medication is taken (e.g. ingested, inhaled, topically applied or inserted vaginally). We know that the use of medicinal cannabis has faced a lot of stigma and judgement. To explore medical cannabis for adenomyosis, we recommend speaking to an experienced doctor who has an in-depth understanding of both the condition and the treatment - and won’t judge.  ‍
  • ‍Hormonal Therapy: Hormonal treatments, such as oral contraceptive pills, progestins, or a levonorgestrel-releasing intrauterine device (IUD), can help regulate hormonal fluctuations and reduce heavy menstrual bleeding and pain.
  • ‍Gonadotropin-Releasing Hormone (GnRH) Agonists: These medications suppress the production of oestrogen, inducing a temporary menopausal state and reducing adenomyosis symptoms. They are typically used for short periods due to potential side effects and reduced bone density.
  • ‍Uterine Artery Embolization (UAE): In this procedure, the blood supply to the uterus is blocked to shrink the adenomyosis tissue. UAE is a non-surgical option that can be effective in reducing symptoms.
  • ‍Hysterectomy: The only definitive ‘cure’ to date for adenomyosis is a hysterectomy (surgical removal of the uterus). This can cause a financial burden to some patients and should only be pursued if childbearing is no longer a concern. For a condition this prevalent — removing an organ should not be the only permanent solution!
  • ‍Fertility-Sparing Surgeries: For women who desire to preserve fertility, certain surgical procedures, like adenomyomectomy (removal of adenomyosis lesions while preserving the uterus), may be considered in carefully selected cases.
  • ‍Supportive Measures: Lifestyle changes, such as regular exercise, stress reduction techniques, and a healthy diet, can contribute to overall well-being and symptom management.

Finding Help for Adenomyosis

Experiencing pelvic pain? Don’t ignore it. Just because we’re told that our pain is a natural part of life or “not a big deal” - it doesn’t mean that’s true. If you suspect you are experiencing adenomyosis symptoms or pain that affects your daily life, talk to your doctor. And if they give you the brush off — get a second opinion. Your health and comfort matter.

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If you think you might have had a misdiagnosis in the past, don’t be afraid to share this with your doctor. You can even ask to be tested specifically for adenomyosis so that you can get a correct diagnosis and treatment plan. Better yet? Work with a non-judgemental doctor who specialises in adenomyosis and female pelvic pain, like one of our Hazel doctors.

The Bottom Line

Adenomyosis is one of those “female” conditions that often doesn't get the attention it deserves. It's when the endometrial tissue decides to set up camp in the muscular wall of the uterus, causing some seriously intense pain and heavy periods. While it's different from endometriosis, they do have a lot in common when it comes to the symptoms. Getting an adenomyosis diagnosis can be challenging but fortunately, there are several management options, including pain relief medications, medicinal cannabis, hormonal therapy, or even a hysterectomy for those very tough cases. Finding the right treatment for you and your unique condition isn’t easy. Speak with an experienced doctor who understands your pain and your condition and is willing to provide transparent advice and a personalised treatment plan to find what works for you - all without judgement or stigma. Raising awareness and seeking out specialised healthcare can make all the difference in getting the right care for adenomyosis. And remember: Hazel's always got your back with personalised support for chronic conditions like this.