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All About Adenomyosis

March 7, 2023

Adenomyosis is a condition where tissue that lines the uterus, or endometrium, is found in the muscular layer of the uterus called the myometrium. As the endometrium thickens during the menstrual cycle in preparation for possible implantation of an embryo, it begins to grow into the uterine wall, causing the uterus to swell.

If this growth of rogue tissue sounds familiar, you might be confusing adenomyosis for endometriosis, where the tissue similar to the endometrium grows outside the uterus on other parts of your body. In fact, adenomyosis is often referred to as “endo’s ugly twin” or described as “endometriosis inside the walls of the uterus” because two conditions are often co-existing, and symptoms often resemble one other, or occur simultaneously.

What causes Adenomyosis?

Adenomyosis is estimated to affect 20 to 30 percent of people with uteruses. Adenomyosis is not a sexually transmitted disease, is not contagious, and it is not intrinsically life threatening (although it might feel like it). While the exact cause of adenomyosis is unknown, a few vague theories are [1] endometrial cells migrate into the walls of the uterus [2] endometrial cells simply develop within the walls of the uterus. There’s also a connection between people who have had uterine surgery like c-sections, tubal ligations, or abortions and developing adenomyoisis based on the idea that transference of endometrial tissue and cells occurs during the invasive procedures, although this has not been confirmed.

Adenomyosis is also loosely associated with increased levels of estrogen, as it most often occurs during child birthing years and usually disappears after menopause, when estrogen levels taper off.

Pain Areas & Symptoms of Adenomyosis

Like endometriosis, adenomyoisis symptoms may be mild to severe. It affects everyone differently, and symptoms may change or worsen over time. The condition can either be diffuse (spread throughout the uterus), or found as nodules, or lesions in the uterus’s myometrium.

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If you’re experiencing any of the below symptoms and suspect you might have adenomyosis, don’t hesitate to make an appointment with your doctor. Common adenomyosis symptoms include:

Severe menstrual cramps
Prolonged period
Blood clots during menstrual bleeding
Spotting between periods
Painful intercourse (dyspareunia)
Painful urination or bowel movements
Chronic lower back, abdominal or pelvic pain radiating to the upper back, hips, and front of legs
Diarrhea, constipation or nausea
Infertility or difficulty getting pregnant
Increased risk of anemia
Predilection for anxiety, depression, or irritability

GOOD TO KNOW: For people who suffer from prolonged menstruation or spotting between periods, the persistence of blood in the vagina can lead to infection or bacterial vaginosis.

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Diagnosis & Treatment of Adenomyosis

Like endometriosis, adenomyosis is extremely difficult to diagnose (and therefore manage). MRI imaging or ultrasounds may hint at a diagnosis of adenomyosis, but it is not 100% accurate when the disease is diffuse. A highly trained specialist may be able to suspect adenomyosis from your pelvic exam, and from the feel of your uterus during a laparoscopy, but the tumorous growths within the uterine walls may also be mistaken for fibroids. And that’s assuming adenomyosis has developed into masses, or implants that may not be visible in an imaging examination.

A hysteroscopy or needle biopsy may also help in the diagnosis, but these, too, may be inaccurate and provide a false negative if they don’t get a tissue sample from the deeper layers of the uterine wall, which is affected by adenomyosis. Ultimately, the only way to definitively confirm a diagnosis is via a biopsy taken from the uterus after a hysterectomy, which is the complete removal of the uterus and a last resort. Symptom management options include:

Anti-Inflammatory Medication Analgesic painkillers (like ibuprofen) reduce blood flow during your period while relieving severe cramps, which can help you cope with the pain, but do nothing to prevent the disease from progressing.

Hormones Hormone therapy may help alleviate symptoms by reducing the strength and/or quantity of menstrual cycles by regulating estrogen levels. Options include oral contraceptives (like birth control pill), IUDs, or injections.

Endometrial Ablation Endometrial ablation removes or destroys the lining of the uterine cavity known as the endometrium. It’s an outpatient procedure with a short recovery time, but this procedure may not work for everyone, since adenomyosis often invades the muscle more deeply than the endometrium.

Uterine Artery Embolization Uterine artery embolization cuts off the blood supply to certain arteries in the affected area(s), helping “shrink” the adenomyosis. It’s an inpatient procedure that usually involves staying in the hospital overnight. Since it’s minimally invasive, it avoids scar formation in the uterus.

MRI-Guided Focused Ultrasound Surgery (MRgFUS) MRgFUS uses high-intensity waves to create heat and destroy the targeted tissue. The heat is monitored using MRI images in real time. Studies have shown this procedure to be successful in providing relief of symptoms, but more research is needed to determine the long-term effects.

Hysterectomy The only permanent cure for adenomyosis is getting a hysterectomy, which is the complete removal of the uterus—the idea being, remove the uterus, remove the adenomyosis. This is a major surgical intervention, however, and is only used as a last resort for people who do not plan to have children.

Lifestyle changes Some people consider alternative treatments for their symptoms including physical exercise, diet changes, and even acupuncture. While there is still little research and a lack of evidence for the effectiveness of these holistic approaches, we always encourage a balanced diet and regular movement.

If you feel your doctor is not giving you the information you need to feel confident in your diagnosis, don’t be afraid to ask for a second opinion, and do your own research as well. The only real way to end the myth that adenomyosis symptoms are “normal” or "just period cramps" is to challenge the way things are done in the medical community. Don't be afraid to push for more research, more tests, and more answers. It’s likely going to be a long and frustrating process but you—and your reproductive and sexual health—are worth it.

Meet Shamitris Kirby

It took thirteen years of daily discomfort and countless visits to multiple doctors before one of them took Shamitris Kirby’s (she/her) pain seriously enough to schedule an MRI. She was finally diagnosed with adenomyosis in 2018 and began documenting her journey to spread awareness about the uterine disease in the hopes that others won’t have to wait so long for relief. This week she shares misconceptions and coping mechanisms as a Black woman searching for answers within the American healthcare system.

What would you recommend to someone who is trying to find the source of their discomfort?

Ask your doctor for a pelvic ultrasound and/or MRI. Sometimes the ultrasound won’t catch endo or adeno, but will catch fibroids. I also think it’s important to find a doctor that will ask you the right questions and not be scared to figure things out with you. When I first met with my acupuncturist, they specifically asked if I had ever experienced any trauma to my mid section/pelvic area, which I did when I was 2-years old. It helps when you’re able to make some sense of the unknown.

What products or methods have you used to help alleviate your pain?

The holistic/Chinese medicine route works best for me. I love acupuncture and hemp flower for pain relief; both have been most helpful. Living a healthier lifestyle has also helped. I’ve started changing my food intake and that alone has helped me to not feel bloated all of the time, which makes it easier for me to identify what I’m feeling, where I’m feeling it, and where the feeling stems from.

How does chronic pain affect your day to day life?

When I wake up every morning, I usually have a ten minute window of feeling “normal” until a slow simmering throb begins in my pelvic area that lasts throughout the entire day. Depending on how bad the throbbing gets, I can get through my days acting like there’s no problem, or I stay home to take a break from the world. Making it through the day takes a lot of mental strength and I always try to do it with grace. Somehow, I’ve learned to mentally overcome my physical pain and I believe this coping mechanism formed because I didn’t feel heard or believed by doctors. It doesn’t make it easier being a black woman in America.

Does age play a role in one’s risk for an adenomyosis diagnosis?

Absolutely not—this is a huge misconception, which is why adeno has been overlooked and not researched enough. I believe that I could’ve been diagnosed two decades ago if doctors weren’t so quick to suggest birth control for all pelvic pains. It’s unfortunate, because we really look to doctors for solid medical answers and we tend to believe what they say. However, I’ve learned that a lot of western doctors don’t actually have an answer, or don’t want to research the answer, so they make you settle for a drug that won’t work or make you feel the need to find a new doctor to start all over with. The minute a young female tells a doctor that she is experiencing bad cramps, everything needs to be considered, especially adenomyosis. This is a goal for My Peach Fuzz Blog.

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