You’ve probably heard of endometriosis, a gynecological condition that can cause women to have debilitating pelvic pain, excessive bleeding, bloating and infertility. But did you know that it has a lesser-known sister condition called adenomyosis?
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Adenomyosis likely affects millions of women, but it’s not well understood. The knowledge base is growing, though, and medical experts are coming to better understand how to effectively diagnose it and help women manage it.
“It used to be thought that adenomyosis only occurred in older women, but it’s now being diagnosed earlier,” says Rosanne Kho, MD, Head of the Section of Benign Gynecology and a subspecialist in minimally invasive gynecologic surgery. That’s probably because gynecologists have better tools than ever to diagnose it, she suggests.
There’s still much to learn about this condition. But it’s understood that it can deeply affect a woman’s quality of life — and potentially her fertility.
“Adenomyosis is getting much more attention now,” Dr. Kho says. “Hopefully in the next few years we will be able to understand this condition better.”
Endometriosis and adenomyosis
Endometriosis and adenomyosis can cause some of the same symptoms, but what’s happening inside the body isn’t quite the same. And a woman could actually have both.
In endometriosis, tissue similar to the tissue that lines the inside of the uterus attaches itself to pelvic organs outside of the uterus and also bleed monthly. In adenomyosis, that tissue instead embeds itself inside the wall or muscle of the uterus, causing the uterus to swell.
Some women don’t have any symptoms, but many who are eventually diagnosed with adenomyosis are tipped off that something is wrong because of heavy periods and agonizing pain, Dr. Kho says.
Doctors used to only be able to make an adenomyosis diagnosis after a woman had her uterus removed to get rid of her symptoms, and a pathologist could see that there was indeed endometrial tissue inside the walls of her uterus.
But thanks to greater awareness of the condition and improvements in diagnostic tools like transvaginal ultrasound and MRI imaging, gynecologists can now see signs of the disease in women who haven’t had a hysterectomy.
It’s hard to know how many women have this condition, and experts aren’t sure exactly what causes it. But some think that women who have been pregnant or had surgery on their uterus are at higher risk, Dr. Kho says.
Adenomyosis is not fatal, and symptoms often go away after menopause. However, research has shown that the presence of adenomyosis does elevate a woman’s risk of endometrial and thyroid cancers.
Because it causes changes in the uterus itself, experts also suspect that adenomyosis can make it harder for a woman to get pregnant. But research on this has been limited — and complicated by the fact that adenomyosis often occurs hand-in-hand with other factors that affect a women’s fertility, such as fibroids and endometriosis.
Today there are several ways doctors can treat adenomyosis, including options that preserve the uterus for women who still wish to have children.
Which approach is best depends on a woman’s symptoms, whether she wants to have children and the extent of the adenomyosis.
Over-the-counter, anti-inflammatory medicines are the first step in helping with the pain. Beyond that, progestin-only hormonal therapies like an IUD may also ease pain and bleeding — or eliminate periods all together, Dr. Kho says. Other forms of hormonal therapies such as birth control pills, patches or rings, may also be recommended.
If medication isn’t able to decrease symptoms, women may consider other options:
- Endometrial ablation: This minimally invasive procedure that destroys the lining of the uterus may produce good results when the misplaced endometrial tissue occurs in a cluster. When the tissue is spread out or extensive, it may be able to be treated this way if it is not embedded deeply in the walls of the uterus.
- High-intensity focused ultrasound ablation: HIFU is a relatively new treatment that seems to be a promising noninvasive option for patients, Dr. Kho says, but there haven’t been enough comparative studies showing its efficacy, safety and outcomes on pregnancy just yet.
- Surgical removal: A surgeon can remove the affected areas of the uterus, but it’s not going to be perfect. “We would often end up excising healthy tissue and/or leaving some diseased tissue behind,” Dr. Kho explains. “Removing good tissue could put the patient at risk for worse pregnancy outcomes such as uterine rupture.”
- Hysterectomy: Removal of the uterus eliminates adenomyosis but also eliminates the chance for pregnancy.
Steps to take
If you have periods that are heavy or painful, or experience pelvic pain when you’re not on your period, talk with your Ob/Gyn. Any number of things could be going on, so it’s best to get to the bottom of it ASAP.