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The condition occurs when the tissue that lines the uterus (endometrium) grows outside of the uterus.
Each menstrual cycle, a reproductive age woman’s endometrium prepares to accept an embryo. If this doesn’t happen (the woman doesn’t become pregnant), the tissue and blood are normally shed through the vagina during menstruation.
In all women, some of this tissue also enters the pelvis through the fallopian tubes, called “retrograde menstruation.” It is believed that retrograde menstruation along with some form of autoimmune dysfunction leads to endometriosis. In this case, the endometrial tissue often grows on or within pelvic organs such as the fallopian tubes, ovaries, vagina, and cervix. These growths may also occur on the outer surface of the uterus, bowel, bladder, or rectum.
Endometrial tissue outside of the uterus continues to act as if it were within the uterus and responds to the menstrual cycle hormones. This tissue growth often results in inflammatory cells responding, causing the structures where the endometrial tissue is growing to develop adhesions and scarring. Adhesions and scarring can cause pain and disrupt the anatomy, resulting in fertility problems.
The exact cause is not known. Researchers are also not certain why some women get the condition and others do not.
During a typical menstrual cycle, the uterine lining thickens to prepare for a potential pregnancy. If that doesn’t occur, the lining is shed as a menstrual period. Though most tissue exits via the cervix and vagina, some tissue exits out of the fallopian tubes and ends up in the pelvis. ASRM says some individuals may develop endometriosis because their bodies may not be able to clear this endometrial tissue from the pelvic area, where it grows on surrounding organs and tissues.
There is evidence published by the National Institutes of Health that the disorder may be hereditary. Early studies have shown that women are more likely to develop the condition if an immediate family member such as a mother or sister has it.
Endometriosis is most common in women of reproductive age, 15 to 44 years old. According to the U.S. Department of Health and Human Services, more than 11% of women in this age range will have the disease. Up to 50% of infertile women have it.
The condition is most likely to affect women in their 30s and 40s. It can also affect teens, young adults, and individuals who have already had children.
Current research shows an association between the disease and a woman’s inability to conceive naturally, even in mild cases.
It’s estimated that individuals with untreated, mild endometriosis conceive at a rate of 2 – 4.5 percent per month, compared with the 15 – 20 percent monthly fertility rate in couples with no known infertility factors.
Those women with moderate to severe cases of the disorder have a monthly pregnancy rate of less than 2 percent. In our experience, these rates apply to LGBTQ+ individuals with female reproductive organs who may be seeking to become pregnant through reproductive assistance.
Though endometriosis is commonly associated with infertility, it’s important to note that not all patients diagnosed with the disorder will have difficulty becoming pregnant.
The severity, symptoms, and complications associated with the disorder are extremely unpredictable and vary from patient to patient.
The disorder can present in a combination of three basic categories:
Endometriosis, regardless of the severity, does not always present with symptoms. It is not uncommon for women to go undiagnosed with the condition until they experience difficulty conceiving (infertility).
Despite this, there are a number of symptoms often associated with the condition, including:
This is described as a “deep” pain within the pelvis. This pain is more common during penetrative sex. It is thought to be the result of disturbing tender endometrial implants or nodules on the uterus or cervix or adhesions that connect the pelvic organs to the vagina.
It has been observed that menopausal women or individuals whose estrogen has been suppressed will experience fewer symptoms.
These two conditions are often confused as they are both associated with the uterine lining and have similar symptoms.
However, in adenomyosis, endometrial cells appear to be growing in the muscular walls of the uterus, whereas, in endometriosis, the endometrial lining spreads outside of the uterine cavity into other parts of the pelvis.
Endometrial tissue implants are initially small, flat patches, similar to blisters or flecks, that grow on the surface of pelvic organs or the tissue lining the pelvis.
Endometrial tissue that enters the ovary can form a fluid and debris-filled cyst inside the ovary known as an endometrioma.
Over time, endometriosis may irritate the surrounding pelvic tissue causing internal scar tissue known as adhesions. Adhesions can cover pelvic organs, bind neighboring organs together or block the fallopian tubes preventing sperm and egg from meeting (and therefore pregnancy).
Endometriosis is classified into four stages:
Most women have minimal or mild cases, which typically involves minimal scarring (adhesions), and small, less invasive endometrial implants. Moderate and severe endometriosis is characterized by numerous and sizable implants and more severe scarring within the pelvic organs.
Importantly, the stage (severity) does not correlate with the presence or severity of symptoms.
A review of symptoms and a physical exam in which endometrial nodules may be felt can help lead a physician to suspect a diagnosis.
However, if a definitive diagnosis is needed, laparoscopic surgery must be performed and biopsies taken to confirm a formal diagnosis of the disorder.
Laparoscopy is an outpatient surgical procedure. A surgeon inserts a thin camera through small incisions near the navel to examine the uterus, fallopian tubes, ovaries and other pelvic organs for endometrial implants, adhesions, and ovarian cysts.
Our surgeons will use their observations to stage the endometriosis, which influences treatment options. The implants can be surgically removed at the same time of diagnosis.
The treatment option chosen will depend on the specifics of the disease, cost-effectiveness, and the patient’s goals.
Although there is no cure for the condition, women with it have treatment options that can address symptoms and enhance prospects for pregnancy if they are infertile due to endometriosis.
We may use the following assisted reproductive technologies to improve the chances of pregnancy in women with endometriosis:
Women who may be experiencing infertility as a result of endometriosis might consider laparoscopy to remove endometrial tissue and restore the anatomy of the reproductive organs.
It is worth noting that surgery has been associated with a small improvement in natural pregnancy rates – about 29% of women who had endometriosis removed surgically conceived in nine months compared with the 17% who conceived without surgical treatment.
However, it is important to note that those with moderate to severe cases of the disorder seem to achieve the greatest improvement in pregnancy rates. It is also important to note that at any stage of the condition, no significant improvement in pregnancy rates are seen with additional surgical procedures.