Adenomyosis: Symptoms, Diagnosis, Treatments Everyday Health MenuNewslettersSearch Endometriosis Adenomyosis Symptoms Diagnosis Causes and Treatments The little discussed disease, related to endometriosis, often goes undiagnosed. By Beth LevineMedically Reviewed by Kacy Church, MDReviewed: April 9, 2019Medically ReviewedIllustration of AdenomyosisShutterstockPhysicians and patients are becoming more aware of the chronic disease endometriosis. What is getting ignored now is a disease that often accompanies endometriosis called adenomyosis. Related: The Top Endometriosis Instagrammers, and Why They’re Important How Does Adenomyosis Differ From Endometriosis In endometriosis, endometrial-like tissue grows on organs outside of the uterus. In adenomyosis, the actual endometrial lining grows into the uterine muscle, damaging the uterine wall. The two are often confused because they can occur simultaneously and they mimic the same symptoms. However, while it is possible to have both at the same time, it is also possible to have adenomyosis without endometriosis. “Adenomyosis is a form of endometriosis; it's endometriosis of the uterine muscle, also known as the myometrium,” says Natalya Danilyants, MD, co-founder of The Center for Innovative GYN Care. The Hidden Disease No One Talks About Adenomyosis is often called “the hidden disease,” for good reason. While endometriosis can be diagnosed by laparoscopic surgery, adenomyosis cannot because it is buried in the muscle. “Adenomyosis tends to get missed on imaging tests. In laparoscopic surgery, you won’t find it unless you cut into the uterus and you happen to cut into the right place, so most of the time it goes undiagnosed. The only time we find out is when we take the uterus out and do a pathology study on it,” says Dr. Danilyants. Related: Celebrities Who Speak About Their Endometriosis Adenomyosis tends not to be discussed much. It is just not on most gynecologists’ radar due to its concealed nature, the fact that it tends to coexist with endometriosis, and that its symptoms sometimes mimic those of other conditions (fibroids, dysfunctional bleeding in addition to endometriosis). Although both endometriosis and adenomyosis often cause pain, endometriosis does not always produce abnormal bleeding as adenomyosis does. Learn what others with endo have to say about their experience with pelvic floor PT on Tippi What Causes Adenomyosis Experts still don’t know the exact cause of adenomyosis, but one hypothesis is that the endometrial cells migrate and invade the normal uterine wall. Another theory is that cells already in the uterine wall mutate into endometrial cells. Age Doesn t Matter When It Comes to Adenomyosis “We need to realize the vast number of women of all ages who can be affected by adenomyosis. It’s not just women over 50,” says Danilyants. In fact, Danielle Russell, who founded the global Adenomyosis Advice Association, reports, “I more commonly get emails and messages from women now who are in their teens. My surgeon told me the youngest person he performed a hysterectomy on was 19.” Related: 5 Simple Yoga Moves for Endometriosis and Pelvic Pain Relief Risk Factors for Adenomyosis While causes are still just theoretical, there are significant risk factors that doctors should pay attention to when diagnosing patients, says Danilyants.Prior cesarean sectionsEndometriosisPrior endometriosis excision but pain is not reducedInfertilityAbnormal vaginal bleedingSevere pain with menstruationPain with sexual intercourseSwollen abdomenPain in legs, back, and pelvisBlood clots in legs and pelvis Are the Treatments for Endometriosis and Adenomyosis the Same Depends on what you are talking about. Medical management of both diseases tends to be similar: hormonal therapy to lessen or eliminate menstruation via oral contraceptives, and vaginal ring or patch. According to a study published in September 2018 in Fertility and Sterility, some physicians also use gonadotropin-releasing hormone analogues such as Lupron (leuprolide) or Orilissa (elagolix) to lower estrogen levels. These will interfere with fertility. Anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin IB) and naproxen (Aleve, Naprosyn) are prescribed to lessen menstrual blood flow and relieve pain. Related: The Question of Which to Treat First: Endometriosis or Fertility Problems? “With adenomyosis, however, you have to manage expectations because sometimes medical treatments are not effective or not effective long term. As adenomyosis continues to progress, the patient may end up still needing a hysterectomy in the future,” warns Danilyants. Surgical management of the two diseases is very different. Patients with endometriosis who are not faring well with medical treatment only can undergo laparoscopic surgery to excise lesions. The only definitive way to manage adenomyosis currently is a complete hysterectomy, according to research published in The Journal of Minimally Invasive Gynecology. This procedure, which removes a woman’s uterus, renders her unable to become pregnant. Related: Your Hysterectomy Choices: Different Types and Methods of Uterus Removal While hysterectomy is the most effective treatment for adenomyosis, for women who wish to preserve their fertility, there has been mixed success with uterine artery embolization (UAE), blocking the uterine artery with small particles to stop blood flow, according to research published in Seminars in Interventional Radiology. Related: 10 Things Your Doctor Won’t Tell You About Hysterectomy Let s Get That Adenomyosis Conversation Started Danielle Russell suffered from undiagnosed adenomyosis for years and wants to make sure others don’t have to be as uninformed as she was. Shocked at how little information was available to her, she launched Adenomyosis Awareness Network, which now has a worldwide reach. She works with the medical community to promote education of clinicians through the LinkedIn Adenomyosis Awareness Network. She also has established a community for patients to get informed through an online support network. There is also a private Facebook chat page where they can connect with other patients. Related: Recovery After Hysterectomy: What to Know “Women all over the world tell me their symptoms are either left or are unsuccessfully treated for years. We can change that,” says Russell. 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