Adenomyosis is endometriosis strictly in the uterus. It causes the endometrial tissue of the uterus endometrial cavity to grow into the uterus muscle damaging the uterine wall. It is similar to endometriosis, except with endometriosis the tissue grows outside of the uterus. Endometriosis and adenomyosis are both metaplasia conditions, meaning that the diseased cells will change into the organs in which they invade. In the case of adenomyosis, this causes abnormal uterus cell growth. Due to the similarities, but subtle differences between adenomyosis and endometriosis, adenomyosis is often referred to as the “sister” disease of endometriosis.
There are 3 different classifications of adenomyosis: focal adenomyosis, a focal adenomyoma, and diffuse adenomyosis.
Focal: As the name indicates, focal adenomyosis is 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: Unlike the other two classifications, diffuse adenomyosis is spread throughout the uterus.
These classifications are essential as both focal forms of adenomyosis will not require a hysterectomy if operated on correctly.
Though much more research needs to go into what specifically can cause endometriosis, there are many theories. First and foremost, adenomyosis can form from endometriosis by endometrial tissue extension from outside the uterus. The term extrinsic involvement of the uterus with adenomyosis defines this abnormal growth process going 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 the growth in tissue to this area as seen in adenomyosis. 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 on the cause of adenomyosis, but until more research and knowledge is obtained, there is no one conclusion on what causes adenomyosis.
Most commonly adenomyosis is found in middle-aged patients, ranging from the forties to fifties. Classical training preaches that adenomyosis is usually found in females that have given birth, especially multiple times, whereas endometriosis will be more commonly found in infertile couples. However, recent data shows that many young patients that have never given birth have adenomyosis. 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 that are likely to have adenomyosis and even endometriosis.
It is often common for patients with adenomyosis to have decreased fertility rates and in some cases infertility. This is because patients with adenomyosis 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, which is the smooth muscle tissue of the uterus, will grow. 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 needs to travel in order to fertilize an egg. In fact, It has been reported by the reproductive endocrinology committee from 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%
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, which is a condition where the body has a deficiency of blood cells or hemoglobin and in turn will result in a pallor and weak appearance.
As it can be seen, there are many similarities between adenomyosis and endometriosis when it comes to diagnosis, symptoms and even the condition itself. Nevertheless, the main difference between the two conditions is in understanding that adenomyosis is internal, while endometriosis is external in relation to the uterus. In other words, while endometriosis can spread to the ovaries, bowels or elsewhere in the body, adenomyosis is strictly concerned with scarring of the uterus.
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 upon sexual intercourse (dyspareunia)
Inflammation of the uterus
Deficiency of blood cells or hemoglobin (anemia)
No symptoms: It can be common for some woman to present with no symptoms at all and not even know they have the disease
The simplest form of diagnosis is a sonogram (ultrasound) that is done endovaginally. Ultrasounds can show islands of cysts within the uterine muscle, showing adenomyosis. In the right hands, an ultrasound can provide a substantial enough approach to identifying adenomyosis, providing a sensitivity rate of 83% and a specificity rate of 85%. However many specialists will also advise an MRI, which is the best way to diagnose adenomyosis. 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. Therefore an MRI will 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 in comparison to an ultrasound or MRI as they are most often done in an operating room and are much more expensive.
Drugs: Many of the drugs approved and used for patients with endometriosis are also used to treat adenomyosis, but it is important to note that not every patient is the same. For some, birth control relieves adenomyosis pain while for others it does not. If there is only bleeding the main symptom, particularly in the presence of junctional zone thickening, birth control pills, and/or IUD are helpful.
Not every patient is the same, so it is important that you discuss with your doctor any side-effects that you might have from treatment
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 believed harmfully growing 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 adenomyosis classified as focal or adenomyoma. A hysterectomy should be a last resort.
Unlike many other GYN surgeons, Dr. Seckin does not always view a hysterectomy as the universal treatment for adenomyosis. In cases of 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, however in the other two forms of adenomyosis this is not the case. Finally when adenomyosis is a part of endometriosis the definitive treatment of both is hysterectomy with excision of all other endometriosis tissue which may involve rectum, bladder, ureters and nerve tissues.
The removal of the uterus, hysterectomy, will not address all the problems associated with adenomyosis since there will disease outside the uterus half of the time. Neither peritoneal endometriosis, nor deeply infiltrating lesions that may associate with bowel, bladder, ureter disease, and the retroperitoneal fibrosis causing neuropathy will be addressed by just a hysterectomy technique.
In cases of adenomyosis, there are too many patients that have unnecessary hysterectomies when the patient can feel that it is not the right treatment for them. We know that procedures such as these are very personal, and should only be conducted if necessary. That is why we are always open to discussing all treatment options that are best for your particular case.
Amy O. was a 39-year-old female who came to Dr. Seckin having experienced heavy periods and severe cramping since the age of 12, diagnosed with endometriosis and adenomyosis at the age of 29, and after having 4 different surgeries. After a 27 year battle with her disease, see how Amy feels after her surgery in July 2016.
You can read more stories of patients with adenomyosis, at varying stages, in our testimonial section.