Adenomyosis: The Shadow Sister of Endometriosis
If you've heard of endometriosis, you're likely familiar with the devastating impact it can have on people's lives. But there's another disease that often flies under the radar, despite affecting millions of people: adenomyosis. Often referred to as endometriosis's "shadow sister" or "twin," this disease deserves its own spotlight, understanding, and dedicated research.
What Is Adenomyosis?
Adenomyosis occurs when endometrial-like tissue grows into the muscular walls of the uterus (the myometrium) (Gunther & Walker, 2023). This invasive growth causes the uterine walls to thicken and enlarge—sometimes doubling or tripling the size of the uterus.
During each menstrual cycle, this misplaced tissue responds to hormonal changes just like normal endometrial tissue: it thickens, breaks down, and bleeds. But because this tissue is trapped within the uterine muscle with nowhere to go, it causes significant pain and heavy bleeding (Petraglia et al., 2019).
The Connection Between Adenomyosis and Endometriosis
Though they sound similar, adenomyosis and endometriosis are separate conditions, though they can—and often do—occur together.
Here's the key difference:
Endometriosis: Endometrial-like tissue grows outside the uterus, often affecting the ovaries, fallopian tubes, and tissues lining the pelvis.
Adenomyosis: Endometrial-like tissue grows inside the muscular walls of the uterus itself.
Research has shown that these conditions frequently coexist. Studies indicate that approximately 40% of people diagnosed with endometriosis also have adenomyosis, and this figure rises to around 80% in those who are dealing with infertility issues and have endometriosis (Donnez et al., 2023). Some research has found the prevalence of adenomyosis in endometriosis patients to be as high as 91% when using advanced imaging techniques (Leyendecker et al., 2015).
Common Symptoms of Adenomyosis
Many of the symptoms overlap with those of endometriosis, which is partly why diagnosing adenomyosis can be challenging. Common symptoms include:
Extremely painful periods (dysmenorrhea)
Heavy or prolonged menstrual bleeding
Pelvic pain and pressure
Pain during intercourse
Bloating and tenderness in the abdominal area
Infertility in some cases
It's worth noting that about one-third of people with adenomyosis experience no symptoms at all, making the condition even more elusive (Harada et al., 2023; Chapron et al., 2019).
Why Isn't Adenomyosis as Well-Known as Endometriosis?
Despite affecting a similar number of people as endometriosis (approximately 1 in 10 women, girls, and those AFAB), adenomyosis remains far less recognized, researched, and discussed. Several factors contribute to this disparity:
1. Historical Diagnostic Limitations
Until relatively recently, adenomyosis could only be definitively diagnosed after a hysterectomy, when the uterine tissue was examined in a laboratory (Benagiano & Brosens, 2019). This led to the misconception that it primarily affected older individuals approaching menopause.
Modern imaging techniques like MRI and transvaginal ultrasound have made non-invasive diagnosis possible, but this is a relatively recent development compared to the longer history of endometriosis research (Van den Bosch & Van Schoubroeck, 2018).
2. Research Disparity
The scientific community has devoted significantly less attention to adenomyosis. Studies have found only around 4,000 research entries for adenomyosis compared to over 35,000 for endometriosis, highlighting a substantial knowledge gap that needs to be addressed (Guo, 2021).
3. Overlapping Symptoms and Conditions
Many patients with adenomyosis are initially misdiagnosed with other conditions like uterine fibroids or endometriosis due to similar symptoms. Additionally, since many patients have both adenomyosis and endometriosis simultaneously, the adenomyosis component is often overlooked or treated as a secondary concern (Chapron et al., 2020).
4. Awareness Campaigns and Advocacy
Endometriosis has benefited from greater awareness efforts and celebrity advocates who have shared their experiences. Adenomyosis hasn't yet received the same level of public attention, though awareness is slowly growing with April being recognized as Adenomyosis Awareness Month.
Diagnosis Challenges
Unlike endometriosis, which typically requires laparoscopic surgery for definitive diagnosis, adenomyosis can be diagnosed through non-invasive imaging. However, challenges remain:
Symptoms often overlap with other conditions
Many healthcare providers aren't adequately trained to recognize adenomyosis
The subtleties of imaging findings can be missed without expertise
The condition can coexist with other gynecological issues, complicating diagnosis
Recent studies have shown that transvaginal ultrasound (TVUS) and Magnetic Resonance Imaging (MRI) have significantly improved the ability to diagnose adenomyosis, with sensitivity ranging from 75-88% and specificity from 67-93% (Moretto et al., 2024).
Treatment Options
Treatment for adenomyosis is similar to those offered for endometriosis (Sharara et al., 2021):
Over-the-counter pain medications (NSAIDs)
Hormonal treatments (birth control pills, IUDs)
GnRH agonists to reduce estrogen production
Uterine artery embolization to reduce blood flow
Endometrial ablation for some patients
Hysterectomy as a last resort (which, unlike for endometriosis, is actually curative for adenomyosis)
How We Can Raise Awareness About Adenomyosis
To bring adenomyosis out of the shadows and ensure that those suffering receive proper diagnosis and treatment, we need a multifaceted approach:
1. Education for Healthcare Providers
Medical education needs to place greater emphasis on adenomyosis, ensuring that doctors are equipped to recognize symptoms, order appropriate tests, and provide accurate diagnoses (Harada et al., 2023).
2. Research Funding
More dedicated research funding is essential to better understand the causes, progression, and optimal treatments for adenomyosis. The current research disparity compared to endometriosis needs to be addressed (Guo, 2020).
3. Patient Advocacy
People with adenomyosis need to share their stories and advocate for greater recognition. Personal accounts help humanize medical conditions and drive home the impact they have on daily life.
4. Media Attention
Greater media coverage about adenomyosis would help educate the public and reduce the time to diagnosis for many patients. Highlighting the differences between adenomyosis and endometriosis is particularly important.
5. Support Groups
Creating and promoting support groups specifically for adenomyosis helps patients find community, share experiences, and exchange coping strategies.
6. Designated Awareness Month Activities
April is Adenomyosis Awareness Month, but activities and campaigns need to be expanded to have greater impact. Wearing yellow (the endometriosis awareness color that's also used for adenomyosis) and participating in awareness events can help spread the word.
Latest Research (2024-2025)
Recent scientific advances are beginning to shed more light on adenomyosis, with several important developments emerging in 2024-2025:
Diagnostic Improvements
Recent advancements in imaging techniques have significantly improved adenomyosis diagnosis. According to Moretto et al. (2024), "advancements in transvaginal ultrasound (TVS) imaging and Magnetic Resonance Imaging (MRI) have led to early diagnosis" with sensitivity and specificity ranging from 75-88% and 67-93% respectively. This represents a major improvement from the historical reliance on post-hysterectomy confirmation (Kim et al., 2024).
The diagnostic criteria are becoming more standardized, with the Morphological Uterus Sonographic Assessment (MUSA) group's revised consensus making adenomyosis diagnosis more accessible and cost-effective through conventional 2D transvaginal ultrasound (Moretto et al., 2024).
Treatment Advances
While there is still no FDA-approved medical therapy specifically for adenomyosis, recent research indicates that the levonorgestrel-releasing intrauterine system (LNG-IUS) appears to be the most effective first-line therapy compared to oral treatments (Zhang et al., 2024). Studies by Cho et al. have shown that LNG-IUS is effective in reducing uterine volume with improvement in vascularity and symptom relief, though the decrease in uterine volume may begin about two years after insertion.
High-Intensity Focused Ultrasound (HIFU) treatment has shown promise for patients seeking to preserve fertility. Research has reported encouraging pregnancy and live birth rates after HIFU treatment, though more comprehensive studies are still needed to confirm these findings (Moretto et al., 2024).
Market Growth
The adenomyosis treatment market is expanding rapidly. According to Market Research Future analysis (2024), the global adenomyosis treatment market was valued at USD 0.17 billion in 2024 and is projected to grow to USD 1.02 billion by 2032, with a compound annual growth rate (CAGR) of 4.49%. This growth is driven by increasing awareness, technological advancements, and demand for novel therapies.
Connection to Endometriosis Research
While adenomyosis has historically received less research attention than endometriosis, some of the advances in endometriosis research are benefiting adenomyosis patients as well. Research into inflammatory pathways for endometriosis may have applications for adenomyosis treatment (Moretto et al., 2024).
Recent studies have emphasized the need for greater clinical focus on patients with both adenomyosis and endometriosis, as these conditions frequently coexist and may require specialized treatment approaches. A 2024 study has highlighted that approximately 40% of people diagnosed with endometriosis also have adenomyosis, with this figure rising to around 80% in those dealing with infertility issues.
Questions to Ask Your Healthcare Provider About Proper Diagnosis for Adenomyosis
Getting an accurate diagnosis for adenomyosis can be challenging, but being prepared with the right questions can help ensure you receive appropriate care. Here are important questions to ask your healthcare provider:
About Your Symptoms
Could my symptoms (heavy bleeding, painful periods, etc.) be indicative of adenomyosis rather than or in addition to other conditions?
Given that I have endometriosis (if applicable), what is the likelihood that I might also have adenomyosis?
Should we be investigating both conditions simultaneously?
About Diagnostic Methods
What specific imaging tests do you recommend for diagnosing adenomyosis?
Do you have experience interpreting transvaginal ultrasound or MRI results specifically for adenomyosis?
Will you be using the latest MUSA (Morphological Uterus Sonographic Assessment) guidelines when evaluating my ultrasound?
How confident are you in distinguishing between adenomyosis, fibroids, and other uterine conditions on imaging?
If imaging results are inconclusive, what are my next options?
About Expertise
How many patients with adenomyosis have you diagnosed and treated?
Do you collaborate with radiologists who specialize in gynecological imaging?
Would you recommend a referral to a specialist with particular expertise in adenomyosis?
About Co-existing Conditions
Should we be testing for both adenomyosis and endometriosis?
How would you approach treatment if I have both conditions?
Could adenomyosis be affecting my fertility? (if applicable)
About Follow-up
How often should I have follow-up imaging to monitor any progression?
What symptoms would indicate that we need to reassess or change our approach?
What is your protocol for documenting and tracking adenomyosis symptoms over time?
About Treatment Options
Which treatment options would you recommend at my stage and with my symptoms?
How do the treatments differ if I have both adenomyosis and endometriosis?
If I'm considering pregnancy in the future (if applicable), how might treatments affect my fertility?
At what point would you consider surgical options, and what are the pros and cons?
Remember to keep a symptom diary before your appointment, documenting the timing, intensity, and nature of your pain, as well as bleeding patterns. This information can be invaluable in helping your healthcare provider make an accurate diagnosis.
Conclusion
Adenomyosis deserves the same level of attention, research, and awareness as endometriosis. Through greater understanding and advocacy, we can ensure that people suffering from this condition receive timely diagnoses and effective treatments.
If you're experiencing symptoms that might be adenomyosis, don't dismiss them as "just bad periods." Speak to your healthcare provider and advocate for proper testing. And if you've been diagnosed with adenomyosis, consider sharing your story to help others who might be suffering in silence.
With recent advances in research and growing market interest, there's reason to be optimistic that adenomyosis will receive more attention in the coming years. Together, we can bring adenomyosis out of the shadows and into the spotlight it deserves.