Adenomyosis Symptoms, Diagnosis, and Treatment Methods

By Tamer Seckin, MD
Founder, Endometriosis Foundation of America

Last Updated 2019.

OVERVIEW

What is Adenomyosis?

Adenomyosis is endometriosis strictly in the uterus. It causes the endometrial tissue of the endometrial cavity in the uterus to grow into the uterus muscle, subsequently damaging the uterine wall. It is similar to endometriosis, but with endometriosis, the tissue grows outside of the uterus. Endometriosis and adenomyosis are both metaplasia conditions, meaning the diseased cells will change when they invade new organs. In the case of adenomyosis, this causes abnormal uterus cell growth. Due to these similarities and subtle differences between adenomyosis and endometriosis, it is often referred to as the “sister” disease of endometriosis.

endometriosis, adenomyosis sister disease

What are the Classifications?

There are 3 different classifications: 

Focal Adenomyosis

Adenomyosis in one particular site of the uterus.

Adenomyoma

Adenomyoma is a form of focal adenomyosis, but it is more extensive, as it results in a uterine mass or benign tumor, similar to uterine fibroma.

Diffuse Adenomyosis

Unlike the other two classifications, diffuse adenomyosis is spread throughout the uterus.

These classifications are essential as both focal forms of it will not require a hysterectomy if operated on correctly.

Focal, Adenomyoma, diffuse

What is the Cause?

Though much more research is needed into the specific cause of it, there are many theories. First and foremost, it can form from endometriosis by endometrial tissue extension from outside the uterus. The term, “extrinsic involvement of the uterus with it,” defines this abnormal growth process from outside the uterus to inside. This is common in advanced endometriosis wherein deeply infiltrating endometriosis infiltrates the back of the uterus from the cervix.

Other theories include tissue trauma or any vaginal injury that allows inflammation and can lead to increased macrophages and cytokines to migrate into the myometrium, causing growth in tissue to this area as seen in it. Some believe there could also be some form of stimulation of migratory tissue into the myometrium, due to a high expression of estrogen receptors. Other theories include the spread and buildup of myometrium cells through the lymphatic system or through stem cells. There are many believed theories concerning the cause of it, but until more research is conducted, there is no one conclusion on what causes it.

What are the Risk Factors?

Most commonly, it is found in middle-aged patients (40s-50s). Classical training maintains that it is usually found in women who have given birth, especially multiple times, whereas endometriosis is more commonly found in infertile women. However, recent data shows that many young patients who have never given birth have it. Endometriosis can also be found in patients who have given birth many times. Thus there is some doubt in the classically defined parameters of patients who are likely to have it and even endometriosis.

Adenomyosis, Infertility

What About Pregnancy?

It is common for patients with the disease to have decreased fertility rates and in some cases infertility. This is because patients with this disease are much more likely to have endometriosis, which can have detrimental effects when it comes to the reproductive system. When a patient has adenomyosis, the myometrium (the smooth muscle tissue of the uterus) grows. With enough build up, the myometrium will begin to occlude the fallopian tubes related to the interstitial part of the tubes on the myometrium itself. A partial blockage of the opening between the uterus and the fallopian tubes will ultimately decrease one's chances of pregnancy as this is the path that sperm takes in order to fertilize an egg. In fact, it has been reported by the reproductive endocrinology committee at the Japan Society of OB/GYN, as referenced by the Endometriosis Foundation of America, that patients suffering from adenomyosis will have:

  • Up to a 50% miscarriage rate

  • Pre-term birth rates of 24.4%

  • Fetal retardation rate of nearly 12% 

Congruent Disorders

  • About 40% to 50% of patients with adenomyosis are likely to have endometriosis.

  • 50% of patients with adenomyosis will also have cases of fibroids.

  • 1 in 5 patients diagnosed with endometriosis after the age of 30 will have adenomyosis or be at risk for the disease.

  • Patients with adenomyosis will often also present with anemia, a condition where the body has a deficiency of blood cells or hemoglobin and results in a pallor and weak appearance.

  • It is a major cause for hysterectomy.

Is it endometriosis?

There are many similarities with endometriosis when it comes to diagnosis, symptoms, and even the condition itself. Nevertheless, the primary difference between the two conditions is that adenomyosis is internal, while endometriosis is external with respect to the uterus. In other words, while endometriosis can spread to the ovaries, bowels, or elsewhere in the body, adenomyosis is strictly confined to the uterus.

What are the symptoms?
  • Heavy menstrual bleeding (menorrhagia), which can include clots

  • Painful bowel movement (dyschezia)

  • Bladder symptoms including uncomfortable urination (dysuria), burning urination, or blood in the urine (hematuria)

  • Peripheral nerve numbness or weakness (neuropathy), which can cause leg or bowel pain during periods

  • Pain with sexual intercourse (dyspareunia)

  • Inflammation of the uterus

  • Deficiency of blood cells or hemoglobin (anemia)

  • No symptoms: It can be common for some women to present with no symptoms and not even know they have the disease 

How Is It Diagnosed?

The simplest form of diagnosis is a sonogram (ultrasound) performed endovaginally. Ultrasounds can show cysts within the uterine muscle, revealing suspected adenomyosis. With the right doctor, an ultrasound can provide a substantial enough approach to identifying adenomyosis, providing a sensitivity rate of 83% and a specificity rate of 85%. Many specialists will also advise an MRI, which is the best way to diagnose adenomyosis. An MRI allows a physician to see all the glands of the myometrium, the thickness of the junctional zone (which will be thicker than 1cm in adenomyosis cases), and asymmetric walls. An MRI will thus allow your doctor to see whether or not you have adenomyosis first hand, with a high sensitivity rate of 88% and a specificity rate of 93%. There are also minimally invasive techniques such as historiography, hysteroscopy, cystoscopy, and laparoscopy. However, these are less commonly used for initial diagnosis as they are most often performed in an operating room and are much more expensive.

adenomyosis to an ultrasound or MRI
This ultrasound image of a patient with it depicts symmetric uterine wall thickening.
What are the treatments?

Non-surgical: "The No Hysterectomy Option"

  • Drugs: Many of the drugs approved for and used by endometriosis patients are also used to treat it, but it is important to note that not every patient is the same. While some patients experience pain relief by taking birth control, others do not. If bleeding is a patient’s primary symptom (particularly in the presence of junctional zone thickening), birth control pills, and/or IUDs are helpful.

  • Not every patient is the same, so it is important that you discuss any side-effects that you might have from treatment with your doctor.

Surgical:

  • Laparoscopic deep excision surgery within the uterus: This is the gold standard for minimally invasive excision surgery of adenomyosis that is classified as either focal or adenomyoma. Using this precise technique, a surgeon is able to view and remove any suspected tissue within the uterus, thus relieving adenomyosis symptoms, while keeping the uterus intact.

  • Hysterectomy or partial hysterectomy: This is a surgical technique in which the uterus or part of the uterus is removed. It should be performed with caution and only in cases of severe diffuse adenomyosis. It should not be conducted in cases of endometriosis without adenomyosis or even when a patient has this disease classified as focal or adenomyoma. A hysterectomy should be the last resort.

OUR APPROACH

Unlike many GYN surgeons, Dr. Seckin does not always view a hysterectomy as the universal treatment for it. In cases of a thickened endometrial junction, focal adenomyosis or adenomyosis with adenomyoma build up, Dr. Seckin will advise laparoscopic deep excision surgery before a hysterectomy. Only in cases of diffuse adenomyosis will Dr. Seckin perform a hysterectomy. In these cases, a hysterectomy is necessary as the abnormal endometrioma tissue has spread throughout the myometrium of the uterus and is beyond repair. In the other two forms of adenomyosis, however, this is not the case. When adenomyosis is a part of endometriosis, the definitive treatment of both conditions is a hysterectomy as well as excision of all other endometriosis tissue which may involve rectum, bladder, ureters, and nerve tissues.

Adenomyoma within the uterine tissue
A) A visible adenomyoma within the uterine tissue. B) Uterine tissue cut in order to reveal the opened site containing adenomyoma.

The removal of the uterus will not address every problem associated with it because about 50% of patients have lesions outside of the uterus as well. A hysterectomy alone addresses neither peritoneal endometriosis nor deeply infiltrating lesions that may associate with the bowel, bladder, ureter disease, and retroperitoneal fibrosis causing neuropathy.

adenomyoma that is being removed from the uterus
A) An adenomyoma that is being removed from the uterus. B) The bed of tissue where the adenomyoma was once implanted within. C) The uterus is sutured and repaired in order to restore uterine function.

In cases of it, there are too many patients who undergo unnecessary hysterectomies. We know that hysterectomies are very personal, and should only be conducted if necessary. This is why we are always open to discussing every treatment option that is best for your particular case.

Our office is located on 872 Fifth Avenue New York, NY 10065.
You may call us at (646) 960-3080 or have your case reviewed by clicking here.

PATIENT STORY

Amy O. was 39 years old when she came to Dr. Seckin. She had experienced heavy periods and severe cramping since the age of 12, and was diagnosed with endometriosis and adenomyosis at the age of 29, after having 4 different surgeries. After a 27-year battle with her disease, Amy received her final surgery in July 2016. Read more about how Amy feels now.

You can read more stories of patients, at varying stages, in our testimonial section.

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    Dr.Seckin is so much more than a surgeon. His passion for helping endometriosis sufferers and determination to improve the quality of life in all of his patients is undeniable. I remember when my gynecologist first told me I needed a laparoscopy. Her exact words were "I can do the surgery, but if you were MY daughter- I'd send you to…

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    I was there for hysterectomy but then I found out that I also had endometriosis.My both surgeries went excellent and I feel great!.I am so thankful to Dr.Seckin and all his team for making my journey smooth!

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    I am a physician who suffered from deep infiltrative endometriosis. I needed laparoscopic surgery, so I went to see my former gynaecologist and he performed the procedure (a surgery which he supposedly does hundreds of times a year) last November. I had severe pain again when I had my period in January and was advised to go on taking a…

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    After years of excessively painful periods, a serious loss of quality of life, and a series of uninformed and uninterested doctors, Dr. Seckin and Dr. Goldstein turned my life around. I was told I woke up from my surgery almost a year ago with a smile on my face, and I haven't stopped since. Before I heard of Dr. Seckin,…

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    Dr Seckin and his team gave me back my life! Tomorrow will be 1 month since my surgery and I feel great. Dr. Seckin, Dr Liu, and Dr Goldstein are not only beyond words talented and amazing Doctors, but they are also genuinely wonderful and caring people. I cannot say enough great things about Holly, Asiye and Kim as well.…

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    Dr. Seckin and his staff spared me from years and years of heavy periods and unbearable endometriosis pain. After having surgery with him (my first) I can now function like a regular human. No more eating NSAIDs like candy and calling out sick from work. Thank you, Dr. Seckin!