What is adenomyosis? And what are the symptoms?

By Moona Arabkhazaeli, MD
Minimally Invasive Gynecologic Surgeon

What is adenomyosis?

Adenomyosis is a little-known, under-researched, and often overlooked cause for heavy periods, painful periods, and pelvic pain. It is a disorder in which the inner lining of the uterus (the endometrium) is present within the uterine musculature (the myometrium). It is different from endometriosis, which is where the endometrium is present outside of the uterus.

Adenomyosis is most commonly diffuse — meaning the endometrial tissue is present throughout the uterine musculature. In other cases, it can be focal — meaning isolated to one area of the uterus or forming an adenomyoma. An adenomyoma is a localized ball of endometrial tissue which can appear similar to a fibroid on ultrasound.

Who gets adenomyosis?

Since official diagnosis relies on a hysterectomy, the true incidence of adenomyosis is unknown, with studies reporting a wide range of 9 to 62% of individuals. Some suggested risk factors for adenomyosis include a family history, age 40-50 years old, previous pregnancy, previous uterine surgery, earlier first period, and use of hormone replacement therapy.

Adenomyosis can also exist concurrently with endometriosis or fibroids. These co-existing conditions can often obscure the diagnosis. If someone has uterine-sparing surgical treatment for endometriosis or fibroids and symptoms persist, adenomyosis should be strongly considered.

What are the symptoms of adenomyosis?

• Heavy menstrual bleeding: approximately 50-60% with adenomyosis experience heavy periods. Periods generally remain regular in interval with this disorder.
• Painful periods: occurs in 25-80% of people with adenomyosis. It is important to recognize that to experience extreme pain with your period is not “normal,” and warrants an evaluation.
• Other less common symptoms include painful intercourse, back pain, pelvic heaviness, and infertility. It is important to note that the link between adenomyosis and infertility remains unclear and more research is needed on the topic. That being said, while many people diagnosed with adenomyosis have successful pregnancies, there are some small studies that suggest an association between adenomyosis and either inability to conceive or miscarriage.

How does one get diagnosed with adenomyosis:

The only way to definitively diagnose adenomyosis is with hysterectomy and pathologic examination:

• History: your doctor will take a full medical history and ask about your symptoms, particularly those described above
• Pelvic examination: this can explore other causes of your symptoms and evaluate for signs of adenomyosis on exam. Typical findings of adenomyosis on exam include a uterus that feels enlarged, soft, and tender.
• Imaging: adenomyosis can be diagnosed on transvaginal ultrasound or MRI. MRI tends to have a higher sensitivity in diagnosis, but in the hands of a skilled sonographer who knows what to look for, ultrasound can be diagnostic.
• Endometrial biopsy: while this is not informative in the diagnosis of adenomyosis, it may be recommended to exclude more concerning causes of heavy bleeding such as endometrial hyperplasia or cancer

What are the treatment options for Adenomyosis?

• Medical treatment: first line options to improve menstrual flow include oral contraceptive pills, progesterone pills, or a progesterone IUD. There is also a non-hormonal treatment option called tranexamic Acid (Cyclokapron) which is only taken during the period and reduce bleeding volume. By reducing flow, period pain is often improved as well. Of these options, the hormonal IUD is most favored given its favorable success rates, direct action on the uterus, low systemic levels of hormones, and long-acting user-independent administration.
• Uterine artery embolization: This is a treatment that blocks the blood supply to the uterus. For those who do not wish to have any future pregnancies, uterine artery embolization (UAE) may be effective for reducing symptoms related to adenomyosis. UAE is also an option for those who choose not to have, or cannot have, a hysterectomy or have found hormonal treatment unsuitable due to side effects or ineffective control of symptoms.
• Hysterectomy: this is definitive treatment, and usually done through a minimally invasive approach.
• Uterine sparing surgery is an investigational approach that can be considered in individuals with focal adenomyosis (ie an adenomyoma) who are actively pursuing pregnancy. However this approach has limitations and should be performed by a skilled gynecologic surgeon.
   

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