Stages of Endometriosis

Endometriosis is a medical condition that affects around 10% of women in the United States between the ages of 25 and 40. It’s not until recently, that conversations around Endometriosis have become prevalent as many women are misdiagnosed until it’s too late. 

For those struggling with the condition, together with their friends and family, it is important to understand Endometriosis and the different stages it has. This article will look at each of the stages, how they present, their severity, and treatment plans.

Key Takeaways

• Endometriosis is named after the “endometrium,”-tissue that lines the uterus. 
• Women with Endometriosis have this tissue growing outside of the uterus
• Women struggling with Endometriosis will likely have difficulty getting pregnant
• Symptoms of Endometriosis can be hard to diagnose 

What Is Endometriosis?

A woman’s uterus is lined with endometrial tissue called the endometrium. As you go through each menstrual cycle, your body grows a new endometrium to prepare for egg fertilization and subsequent pregnancy. If fertilization doesn’t happen, the endometrium is shed during your period. 

Endometriosis is a condition where this endometrial tissue grows outside the uterus or in places where it shouldn’t like in the fallopian tubes, ovaries, pelvic region, bladder, rectum, and even spread to other parts of the body. Though endometrium is meant to be shed, this doesn’t happen with Endometriosis. Rather, the abnormal tissue remains in the body building up and leading to inflammation, scarring, and painful cysts. 

The WHO estimates nearly 200 million women worldwide are affected by Endometriosis, significantly decreasing these women’s quality of life due to severe pain, fatigue, depression, anxiety, and infertility. 

Types of Endometriosis

Endometriosis can be categorized in the following ways.

Superficial Peritoneal Endometriosis (SPE)

This is the most common form of Endometriosis. Most women who have Endometriosis present with this type in the beginning. SPE is characterized by shallow lesions along the peritoneum, also known as the thin lining of the inner abdomen. Symptoms include painful menstruation and urination, discomfort during intercourse, and infertility.

Ovarian Endometrioma (OMA)

As the name suggests, OMA occurs when endometrial tissue forms on the ovaries. This results in the development of cysts inside the ovaries with dark brown endometrial fluid known as endometriomas, or “chocolate cysts.” Symptoms of OMA are similar to SPE 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 because it doesn’t respond to medication-based treatment the same way the above types do. Deeply Infiltrative Endometriosis 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. More often than not, the only way to successfully treat it is through surgery. 

Causes of Endometriosis

While the causes of Endometriosis are unknown, healthcare professionals speculate the following as causes of the disease. 

• Genetics. This can be a risk factor if a mother or a sister in the family has it. 
• Transplantation. When one goes through a C-section or hysterectomy, the endometrial tissue can attach to the walls of the abdomen. 
• Transportation. As blood is being transported in the body, endometrial tissue can be transported along with it and settle in a specific part of the body.
• Transformation. Normal cells can become endometrial and grow outside the body.
• Reverse menstruation. Endometrial tissue goes up the fallopian tubes and the abdomen instead of exiting during a period.

Early menstruation, shorter periods, heavy periods, and an abnormal uterus can increase a woman’s risk of developing Endometriosis. 

Symptoms of Endometriosis

Endometriosis symptoms vary among individuals. Additionally, these symptoms largely depend on the type, severity, and location of the endometrial tissue. Common symptoms of the condition include: 

• 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
• Cancer. Research has also shown a link between Endometriosis and certain forms of cancer.

Endometriosis can cause serious complications if left untreated. One of the main long-term issues that can arise from Endometriosis is infertility. Nevertheless,  this does not eliminate the chances of having a successful pregnancy. Depending on the severity of the disease, there are several treatment options for those wishing to start a family despite getting an Endometriosis diagnosis. Accredited fertility centers like Ivy Fertility can help you determine the best steps for family planning with an Endometriosis diagnosis.

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: This refers to where and how deep the endometrial cells have spread outside of the uterus. 
• The severity of adhesions: Endometrial adhesions 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 stages are categorized by how severe these adhesions are. 
• The presence and size of ovarian endometriomas: Endometriomas are blood-filled cysts, or "chocolate cysts," that turn brown over time. The stages also take into account the presence and size of these cysts. 

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.

Endometriosis Stage 1 

In this stage, an Endometriosis patient has small superficial implants or lesions on the surface lining of the peritoneum, with little to no scar tissue. This stage is also known as minimal Endometriosis and has a point score between one and five.

Endometriosis Stage 2 

Also known as mild Endometriosis, this stage is slightly more severe than stage 1. It presents with deeper implants and mild adhesions. The point score for mild Endometriosis is 6 to 15.

Endometriosis Stage 3 

This stage of Endometriosis is also called moderate Endometriosis. In this stage, an Endometriosis patient presents with many widespread and deep lesions. These adhesions may also be more dense than in stage 2. 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. 

Endometriosis Stage 4

This is the most severe stage, of all the stages. It presents with large ovarian cysts, dense adhesions, and multiple organs attached to each other by scar tissue. In this stage, the disease is more widespread and is represented by any score greater than 40.

Effect of Endometriosis on Fertility

The effects of Endometriosis not only has a serious impact on an individual’s life but also on their fertility. In fact, a 2012 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. This likely causes complications during conception.

For cases of stage 1 and 2 Endometriosis, intrauterine insemination, or 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, one can choose to go through in vitro fertilization or IVF, where eggs are retrieved directly from the patient’s ovaries and fertilized with sperm. This is done in a lab setting. The fertilized embryo is then implanted back into the uterus.

In advanced cases of Endometriosis, surgery may be the only form of treatment and is done to remove scar tissue and cysts before attempting any assisted reproductive technology treatments. This way, there is an increased chance of success and reduced likelihood of complications during fertility treatments and pregnancy. 

Endometriosis Treatment

As already mentioned, there’s no lasting treatment for Endometriosis, although surgery can be done to remove the cysts and scar tissue. Doctors can offer treatments that help manage the disease. These treatments are based on your symptoms, your age, and any other underlying conditions you may have. 

Bottom Line

While there is no known cure for Endometriosis, there are ways to manage its symptoms and improve one’s quality of life. If you are experiencing severe menstrual pain or other symptoms, it is important to talk with a healthcare professional who can diagnose whether the cause of these symptoms could be Endometriosis.  Your healthcare professional will also guide you on the right treatment if you’re diagnosed with Endometriosis.