Stages of Endometriosis

Endometriosis is a medical condition that commonly affects approximately 10% of women. Women living with this condition present with painful and heavy periods, among other painful symptoms. Endometriosis has different stages, each with its own severity. Understanding each stage of the disease is the first step in getting the right treatment plan. In this article, we will look at each of these stages and the symptoms they come with.  

Key Takeaways

• Endometriosis is a condition in which the body produces endometrial tissue, the tissue that typically lines the uterus during the menstrual cycle, in places outside the uterus.
• Left untreated, endometriosis can become quite painful and lead to serious side effects including widespread scar tissue, lesions, and pain during sex and urination.
• There is no cure for endometriosis, but treatments are available to relieve symptoms and address infertility caused by the condition.

What Is Endometriosis?

The World Health Organization estimates nearly 200 million women worldwide are affected by endometriosis. Endometriosis is a condition in which the body produces endometrial tissue in places where it should not. During a typical menstrual cycle, a lining of soft tissue grows on the inner wall of the uterus and gradually thickens over time until in the absence of a pregnancy, it is shed through bleeding during a menstrual cycle.

For people with endometriosis, this process differs slightly and the endometrium can grow in other places, typically around the ovaries, fallopian tubes, or other parts of the pelvic region. It can sometimes grow in other parts of the body.

Additionally, when this tissue starts to break down, it doesn’t leave the body the way normal endometrial tissue does but remains in place, causing a wide variety of painful complications if left untreated.

Endometriosis can significantly decrease one’s quality of life due to severe pain, fatigue, depression, anxiety, and infertility. Currently, there is no cure for the disease but there are treatments that address some of its symptoms. 

Types of Endometriosis

Endometriosis can be grouped into three general categories, depending on severity and location in the body.

Superficial Peritoneal Endometriosis (SPE)

SPE is the most common form of endometriosis, representing more than half of all cases worldwide. It is characterized by shallow lesions along the peritoneum, also known as the thin lining of the inner abdomen. Those affected by it face painful menstruation and urination, discomfort during intercourse, and infertility.

Ovarian Endometrioma (OMA)

This type of endometriosis occurs when endometrial tissue forms on the ovaries, which results in the development of cystic lesions inside the ovaries. These lesions contain dark brown endometrial fluid known as endometriomas, or “chocolate cysts.” Symptoms of an endometrioma are similar to superficial endometriosis but are often more severe and may also include back pain, vomiting, bloating, and nausea.

Deeply Infiltrative Endometriosis (DIE)

Deeply Infiltrative Endometriosis is the most severe form of endometriosis and occurs when endometrial tissue finds its way into the bowel, bladder, or other organs outside the reproductive system. Symptoms often include increasing frequency of urination, urine with blood, pain in the pelvic area and lower back, and loss of kidney function. This form of endometriosis does not respond to medication-based treatment in the same way other forms of the disease do, and often the only way to successfully treat it is through surgery.

Symptoms of Endometriosis

Endometriosis symptoms can vary depending on the type and severity as well as the location of the endometrial tissue. However, there are common symptoms that cut across such as: 

• Pelvic pain, stomach pain, and severe cramping before and during a period
• Pain in the lower abdomen during or after sexual intercourse
• Pelvic pain during urination or bowel movements, especially during a period
• Excessive, heavy bleeding during a period, or bleeding in between periods
• Diarrhea, constipation, or bloating, especially during a period

As endometriosis progresses, it can cause serious complications if left untreated. One of the main long-term issues that can arise from endometriosis is infertility. Research has also shown a link between endometriosis and certain forms of cancer.

Stages of Endometriosis

Endometriosis can be classified into four stages. The American Society of Reproductive Medicine (ASRM) categorizes endometriosis in a point-based system based on:

• The location, extent, and depth: It looks at where and how deep the endometrial cells have spread outside of the uterus. 
• The severity of adhesions: This refers to the endometrial adhesions, which are clusters of fibrous tissue that form in bands. These tissues can bind organs together and can spread toward the abdominal and pelvic organs. 
• The presence and size of ovarian endometriomas: These are blood-filled cysts, or "chocolate cysts," that turn brown over time.

As we look at the stages, it’s important to note each patient presents symptoms differently and it is possible to have very mild symptoms from very advanced endometriosis or severe symptoms in a relatively mild case.

Stage 1 Endometriosis

This stage is identified by small superficial implants or lesions on the surface lining of the peritoneum, with little to no scar tissue. It is also known as minimal endometriosis and has a point score between one and five.

Stage 2 Endometriosis

This stage is known as mild endometriosis and is slightly more severe. The implants could be deeper with mild adhesions. The point score for mild endometriosis is six to 15.

Stage 3 Endometriosis

This stage of endometriosis is also called moderate endometriosis. It is characterized by many deep lesions and is more widespread than in stage 2.  Adhesions may also be present and more dense. The point score for this stage is between 16 and 40. Because of the severity of the lesions, you might require surgery to remove them. 

Stage 4 Endometriosis

This is the most severe stage, with large ovarian cysts, dense adhesions, and multiple organs attached to each other by scar tissue. Here, the disease is more widespread than in stage III and is represented by any score greater than 40.

Effect of Endometriosis on Fertility

Endometriosis can have a serious impact on an individual’s fertility. One study found that 30-50 percent of women diagnosed with endometriosis also experience infertility due to its effect on the organs and tissue found in the reproductive system likely causes complications with its normal function.

Infertility caused by endometriosis does not eliminate the chances of having a child entirely. Depending on the severity of the disease, there are several treatment options for those wishing to start a family despite an endometriosis diagnosis. Visiting an accredited fertility center like Ivy Fertility can help you determine the best steps for family planning with an endometriosis diagnosis.

 For cases of stage 1 and 2 endometriosis, intrauterine insemination, also known as IUI or artificial insemination, can be a viable option for many people if their tubes and egg quality are unaffected. This option is less invasive and less expensive than other options although less effective.

If IUI is unsuccessful, it may be possible to become pregnant through the use of in vitro fertilization or IVF. This process involves retrieving eggs directly from the patient’s ovaries and fertilizing them with sperm in a lab setting before implanting the fertilized embryo back into the uterus.

For certain advanced forms of endometriosis, surgery is sometimes required to remove scar tissue and cysts prior to attempting these assisted reproductive technology treatments to increase their likelihood of success and reduce complications related to advanced endometriosis.

When to consult a doctor

If you are experiencing severe menstrual pain or other symptoms, it is important to contact a healthcare professional who will diagnose whether the cause of these symptoms could be endometriosis.  While the only way to definitively diagnose endometriosis is through a laparoscopic procedure to inspect the pelvic cavity, there are blood and urine tests that can rule out many of the other likely causes of the symptoms.

While there is no cure for endometriosis, steps can be taken to mitigate its symptoms and reduce discomfort for those experiencing them. In addition to surgical treatments, many patients benefit from the use of non-prescription pain medication as well as hormonal treatments like birth control pills or progesterone medications, which aim to stop ovulation and the production of endometrial tissue. Talking with your doctor will help you find the right treatment that can work for you.