Yet 77% of people don’t know what it is
Most people with adenomyosis spend over a decade being told their pain is normal. That their heavy bleeding is just how periods are. That they should take ibuprofen and get on with it.
Adenomyosis was first described in medical literature in 1860, yet today it remains largely unknown outside of specialist circles (1). A recent survey by Endometriosis UK found that 77% of the general public has never heard of it (2). The knowledge gap extends to healthcare too - patients consistently report poor awareness among medical professionals, as their symptoms go unrecognised. The average diagnostic delay for adenomyosis is 11 years (3).
So, What Actually is Adenomyosis? (4, 5, 6)
The tissue that lines inside the uterus is called the endometrium - it thickens and sheds each menstrual cycle, causing a period.
In adenomyosis, endometrium-like tissue is embedded within the muscle wall of the uterus - the myometrium. It behaves similarly to the uterine lining, so with every menstrual cycle, it responds to the same hormonal signals, triggering inflammation, tissue changes, micro-bleeds, and progressive damage and scarring within the muscle. This can be extremely painful. Over time, the uterus can enlarge significantly.
Not All Adenomyosis Looks the Same
Adenomyosis comes in two main types: diffuse, where the tissue is randomly scattered throughout the muscle wall of the uterus, and focal, where it forms one or more distinct, well-defined masses within the muscle wall.
Adenomyosis Creates its Own Estrogen Supply
Adenomyosis is estrogen-dependent - meaning it needs estrogen to survive and grow. What makes adenomyosis particularly difficult to manage: the adenomyotic tissue doesn't just respond to the estrogen of our menstrual cycle, it actually produces its own. This local estrogen supply fuels ongoing growth, independently of systemic hormones. It's partly why standard hormonal treatments don't always work.
What Does Adenomyosis Feel Like?
Symptoms vary considerably between people. The most common experiences are:
•Painful periods
•Heavy menstrual bleeding and in turn, iron deficiency
•Prolonged periods
•Painful sex
•Pelvic pressure or heaviness
•Bloating or “adeno belly”
•Fatigue
•Chronic pelvic pain, even outside periods
•Difficulty conceiving
To further complicate things, about 1 in 3 with adenomyosis have no symptoms at all (7).
But a list of symptoms doesn't capture what living with this condition actually involves. A recent review of lived experiences of women with adenomyosis identified three core burdens:
•Physical: Severe pain, heavy vaginal bleeding, severe fatigue and poor sleep are most commonly reported.
•Relationship: The symptoms and the knock-on impact on intimacy create significant strain on relationships and sexual wellbeing.
•Psychological: Constant frustration, hopelessness, fear, anxiety, poor body image and depression are common
The above can also fuel occupational and financial challenges. Taken together, it’s clear that solutions and better support are desperately needed.
The Diagnosis and Prevalence Problem: We Don’t Know how Common is it
It’s really difficult to know how common adenomyosis truly is.
Historically, it was considered a disease of older women who’d given birth - because the only way to definitively diagnose it was to look at the uterus after a hysterectomy. But with advances in imaging, particularly transvaginal ultrasound and MRI, we're now detecting it much earlier, including in teens and young women.
In women who have symptoms, or who undergo a hysterectomy, estimates suggest adenomyosis is present for 20%- 50%.
But here's the problem: we don't actually have a large study that has looked for adenomyosis using imaging in a general population of women who aren't seeking care for symptoms. Which means the true prevalence remains unknown
Another main barrier to diagnosis is medical misogyny. Women’s pain and symptom self-profiling is often dismissed, deemed psychological or out right not believed by medical professionals. This leads to the need of multiple GP appointments, years of pain and suffering and ultimately worse outcomes as the condition is left unmanaged.
Adenomyosis versus Endometriosis: know the difference (8, 9, 10)
Adenomyosis and endometriosis are distinct conditions - yet they often get lumped together. What is true, is that they are often co-occurring. In fact, you are 181x more likely to have adenomyosis if you have endometriosis. However, their comorbidity does not mean they are the same.
The first difference is location. In adenomyosis, endometrial-like tissue grows within the muscular wall. In endometriosis, endometrial-like tissue grows outside of the uterus - ovaries, bowel, bladder, even lungs.
Adenomyosis physically changes the uterus itself and more typically causes heavy bleeding and a bulky, painful uterus with a feeling of pressure or heaviness. It can be focal or diffuse, as described above. Endometriosis doesn't affect the uterine structure in the same way; its lesions are more varied, forming superficial deposits, deep infiltrating lesions, or ovarian cysts called endometriomas. Because endometriosis lesions can be found almost anywhere in the body, symptoms can be different - pelvic pain and painful periods are common, but it can cause a wide range of others - including chest pain, painful bowel movements and painful urination.
Both conditions are estrogen-driven, and both are notoriously difficult to treat. But adenomyosis is harder to address surgically - because the tissue is embedded within the muscle wall, it cannot be excised the way endometriosis lesions can, often leaving hysterectomy as the only definitive surgical option. However, read on for the emerging alternative treatments…
How is adenomyosis being managed?
Treatment is largely focused on symptom management rather than resolution. For many, sadly, it involves a constant process of trial, adjustment, and compromise.
First line treatment (11)
Combined oral contraceptives and the levonorgestrel-releasing IUS (Mirena) are the most commonly used options, targeting heavy bleeding and pain. GnRH analogues, which suppress ovarian function and reduce circulating estrogen, can help some, but are not suitable for those trying to conceive, and carry risks with long-term use.
Surgical options include uterine artery embolisation (blocking blood flow to adenomyotic tissue to cause it to shrink), adenomyomectomy (surgical removal of affected areas), and total hysterectomy. These carry meaningful risks, can come with new symptom profiles, and, with the exception of hysterectomy, do not guarantee long-term resolution.
The Weight of “Hysterectomy is The Only Cure”
Hysterectomy is often described as the only 'cure' for adenomyosis - and while it does remove the source of the disease, that framing deserves scrutiny. A cure typically implies restoration: a return to normal life and joy. Hysterectomy is permanent, carries surgical risks, ends the possibility of pregnancy, and triggers surgical menopause with its own significant and lasting health implications. For many people, the relief from adenomyosis symptoms is profound and life-changing. But for others - particularly younger women, or those who hadn't finished or even started their family - the losses that come with it are considerable. Can something that trades one set of life-altering consequences for another truly be called a cure? It's unfair, and we desperately need other options.
New Treatments on the Horizon - HIFU (12, 13, 14, 15, 16)
A new emerging treatment is HIFU, or high-intensity focused ultrasound. HIFU uses beams of ultrasound focused precisely onto adenomyotic lesions through intact skin, to generate heat at the site and destroy it. The surrounding uterus is left unharmed. No incisions are needed. Patients typically return to normal activity within a day.
Though evidence is still emerging, recent studies show 82-90% had symptom relief, and:
•Menstrual pain reduced by 50%
•Heavy bleeding reduced by 50%
•Uterine volume shrunk by 45-60%
•Quality of life improve by 80%
However, this procedure sees recurrence rates at around 10% after 1 year, and 30% after 3 years. Evidence suggests combining HIFU with hormonal therapy afterwards may reduce this.
The evidence base, while growing rapidly, still lacks large-scale randomised controlled trials, and regulatory approval for HIFU in the UK currently covers fibroids rather than adenomyosis specifically. Unfortunately, adenomyosis is extremely underfunded and under researched, which is why regulatory approval is slow. In Asia, HIFU is already used in tens of thousands of patients, and studies are super promising - so hopefully there will be movement in the UK soon.
A Final Note
Adenomyosis is common, poorly understood, and chronically under-diagnosed. The 11-year wait for a diagnosis is the product of underfunding, inadequate diagnostic tools, and healthcare systems that have historically dismissed women's pain.
That is beginning to shift. Better imaging, growing clinical awareness, and emerging treatments like HIFU are changing the landscape. But there is a long way to go with awareness. This information needs to reach far more people - the public, GPs, and the people who may have been living with undiagnosed adenomyosis for years because they do not know about it.
References:
1. Benagiano G, Brosens I. History of adenomyosis. Best Pract Res Clin Obstet Gynaecol. 2006 Aug;20(4):449-63.
2. Jo’s Hot Topics: Adenomyosis | Endometriosis UK [Internet]. Endometriosis-uk.org. 2025. Available from: https://www.endometriosis-uk.org/jos-hot-topics-adenomyosis
3. Breton Z, Gouesbet S, Indersie E, et al. Endometriosis Diagnostic Delay and Its Correlates: Results from the ComPaRe-Endometriosis Cohort. Journal of Women’s Health. 2026;35(2):172-188. doi:10.1177/15409996251380129
4. Kolovos, G.; Dedes, I.; Imboden, S.; Mueller, M. Adenomyosis—A Call for Awareness, Early Detection, and Effective Treatment Strategies: A Narrative Review. Healthcare 2024, 12, 1641.
5. Taylor MA, Croudace TJ, Muir FE, et al. Women’s experiences of living with adenomyosis and perceptions of the diagnostic journey: a scoping review. BMJ Open 2025
6. Van den Bosch, T., de Bruijn, A.M., de Leeuw, R.A., Dueholm, M., Exacoustos, C., Valentin, L., Bourne, T., Timmerman, D. and Huirne, J.A.F. Sonographic classification and reporting system for diagnosing adenomyosis. Ultrasound Obstet Gynecol. 2019 53: 576-582.
7. Kolovos, G., Dedes, I., Imboden, S., & Mueller, M. Adenomyosis-A Call for Awareness, Early Detection, and Effective Treatment Strategies: A Narrative Review. Healthcare (Basel, Switzerland). 2024
8. Adenomyosis - Symptoms, diagnosis and treatment | BMJ Best Practice US [Internet]. Bmj.com. 2025.
9. Endometriosis - Symptoms, diagnosis and treatment | BMJ Best Practice [Internet]. bestpractice.bmj.com. 2025.
10. Li, C., Xu, X., Zhao, X., & Du, B. The inconsistent pathogenesis of endometriosis and adenomyosis: insights from endometrial metabolome and microbiome. mSystems. 2025
11. Dason E, Maxim M, Sanders A et al. Guideline No. 437: Diagnosis and Management of Adenomyosis. Journal of Obstetrics and Gynaecology Canada , 45, 417-429.e1
12. Lee et al. Safety and Efficacy of Ultrasound-Guided High-Intensity Focused Ultrasound Treatment for Uterine Fibroids and Adenomyosis. Ultrasound in Medicine & Biology. 2019
13. Bahutair & Alhubaishi.High-intensity focused ultrasound in adenomyosis treatment: Insights on safety, efficacy, and reproductive prospects. Women's Health. 2024
14. Zhang et al. High intensity focused ultrasound for the treatment of adenomyosis: selection criteria, efficacy, safety and fertility. Acta Obstet Gynecol Scand. 2017
15. Otgontuya et al. Comparison of the treatment efficacies of HIFU, HIFU combined with GnRH-a HIFU combined with GnRH-a and LNG-IUS for adenomyosis: A systematic review & meta-analysis. Taiwanese Journal of Obstetrics & Gynecology, 2023
16. Song & Wang. Combining Medication With High-Intensity-Focused Ultrasound for Adenomyosis: Network Meta-Analysis of Randomized Controlled Trials. Journal of Ultrasound Medicine. 2025