An estimated 11 percent of women between the ages of 15 and 44 are affected by endometriosis, a painful disorder in which tissue that normally lines the uterus grows outside the uterus. “The tissue often travels backwards from inside the uterus, through the fallopian tubes, into the pelvis and becomes trapped in the pelvic cavity,” Dr. Edward Tangchitnob, an OB-GYN with Emanate Health in Southern California, tells SheKnows. “[This can] lead to scarring, inflammation, and cysts.”
Although the illness is different for everyone, some of the most common symptoms are painful periods and bleeding between periods. There are four stages of endometriosis, with stage one being “minimal” and stage four being “severe.”
To help understand the differences between the four stages of endometriosis, we spoke with women’s health experts about how the symptoms vary and how the different stages affect the women diagnosed.
Based on surgical findings as set forth by the ASRM (American Society for Reproductive Medicine), Dr. Rebecca Brightman, a private practice OB-GYN in New York and educational partner for SpeakENDO, explains that stage one is considered “minimal disease.” Women with stage one endometriosis have small implants and lesions, and minimal scarring or adhesions.
“It’s important to note that women may feel severe pain and discomfort in this stage, along with stage two,” says Dr. Tangchitnob.
Dr. Brightman also emphasized that just because stage one is considered “minimal,” it certainly doesn’t mean it’s painless. “The stage of disease or extent of disease does not always correlate with the degree of symptoms,” she tells SheKnows, adding that women with stages one and two can be severely impacted by the symptoms of disease.
Dr. Brightman says stage two is also considered minimal “with implants collectively measuring less than 5 cm and confined to pelvic organs.” In women with stage two endometriosis, adhesions are minimal if present.
Doctors may find more implants deeper in your body compared to stage one, according to Dr. Tangchitnob.
Stage three is considered “moderate.”
Dr. Tangchitnob says doctors will likely find deep implants in this moderate stage, in addition to an endometrial cyst or two on at least one ovary. “These are called ‘chocolate cysts’ since they are filled with endometriosis fluid and blood,” he explains. “These cysts are caused by endometrial tissue that attaches to the ovary, shedding blood and tissue.”
In women with stage three endometriosis, doctors may also find filmy adhesions, or bands of tissues, binding your organs together when they shouldn’t be connected. “Many think that this binding could cause the stabbing pain and nausea that many women cope with,” Dr. Tangchitnob tells SheKnows.
Stage four endometriosis is considered severe. “Women [with stage four endometriosis] may have at least one large ovarian cyst, along with a large number of dense adhesions that we typically find throughout the pelvic region,” says Dr. Tangchitnob. He notes that doctors also continue to find deep endometriosis implants in this stage and the pelvis often appears so scarred that the gynecologic organs are no longer mobile, possibly leading to issues with fertility and pain.
The Bottom Line
As Both Dr. Brightman and Dr. Tangchitnob emphasized, the stage of the illness doesn’t directly correlate with the severity of the symptoms. Women with stage one endometriosis may experience extremely painful symptoms, so they should never be dismissed simply because their diagnosis is classified as “minimal.”
While endometriosis causes excruciating and sometimes debilitating pain for certain patients, Dr. Brightman adds that many women with the illness are asymptomatic. “The diagnosis of endometriosis is sometimes made as an incidental finding at the time of surgery or evaluation for other medical problems,” she notes.
Although there isn’t a direct correlation between stage and symptoms, Dr. Brightman explains that women with advanced stages of endometriosis may be more likely to experience severe pelvic pain, as well as urinary and gastrointestinal symptoms, during menstruation.
“They may have irregular menstrual bleeding as well,” she says. “While the extent of disease doesn’t always correlate with infertility, those women with advanced disease may be more likely to encounter problems with fertility.”
If you’re experiencing symptoms associated with endometriosis, Dr. Brightman emphasizes the importance of being open with your doctor so you can work together on an individualized treatment plan that includes treatment options, goals, symptom management, and how to integrate treatment into your day-to-day life.
“Women often experience endometriosis symptoms differently and everybody’s needs are different. It may feel uncomfortable discussing these topics with your doctor, but it’s important that you feel empowered to do so, especially since endometriosis can easily go undiagnosed,” Dr. Brightman tells SheKnows, noting that it can take up to ten years to receive a proper diagnosis.
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