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How much do you know about endometriosis? Unfortunately, when it comes to endometriosis facts, you probably know very little, if anything at all. But since endometriosis affects one in ten women of reproductive age, it’s vital to learn more about this misunderstood condition.

1. Endometriosis Affects Over 190 Million Women Globally

The World Health Organization states that 10% of women have endometriosis. This amounts to over 190 million women and girls globally. In the U.S., 11% of women and girls have endometriosis which equates to 6 ½ million women and girls.

2. Your Risk increases If Mother Or Sister Has It

Does your mother or sister have endometriosis? If so, this could increase your risk of developing endometriosis. Additionally, researchers are looking into this as a possible cause for endometriosis.

two african american women with their heads laying on top of each other facing forward

3. It Takes 6-10 Years to Diagnose

Currently, it takes anywhere between six to ten years to diagnose endometriosis. And it can take longer in some cases. For example, it took over 18 years for me to receive an endometriosis diagnosis.


4. Can Only Be Diagnosed Via Laparoscopic Surgery

Undergoing an exploratory laparoscopy or laparotomy is the only way endometriosis is diagnosed. This allows the doctor to see endometriosis implants visually. They are then excised and biopsied to confirm they are endometriosis.

Additionally, treatment occurs during the surgical procedure. Endometriosis is excised, cysts are removed, and adhesions are treated. Therefore, it’s imperative to work with a skilled endometriosis surgeon with extensive knowledge of endometriosis. And is skilled at excision surgery.

5. Endometriosis Doesn’t Always Have Symptoms

Endometriosis is a painful and debilitating disease for many patients. However, there are cases in which pain and symptoms do not occur. Often endometriosis is diagnosed when the person is seeking help for infertility. Or they are seeking treatment for another issue.

Furthermore, the severity of the disease is not dependent upon pain. You can have mild illness and intense pain. Or you can have severe illness and no pain.

6. Endometriosis Can Contribute to Infertility

On average, 25-50% of women with endometriosis struggle with infertility caused by endometriosis. One reason that endometriosis leads to infertility is the inflammatory nature of the disease. Endometriosis implants on organs and structures in the body lead to chronic inflammation becoming a problem. Thus, impacting fertility.

african american couple staring at a negative pregnancy test

Additionally, scarring and adhesions can cause blocked fallopian tubes interfering with egg fertilization and implantation. Another way endometriosis causes infertility is when cysts known as endometriomas develop on ovaries and interfere with ovulation.

Surgical procedures can also complicate fertility. For example, undergoing ovarian surgery in which an ovary is removed or reconstructed can decrease fertility. Additionally, having a hysterectomy will impact your future ability to become pregnant.

However, endometriosis doesn’t mean you’re infertile or face fertility complications. Many women with endometriosis become pregnant and have children. And those with infertility receive fertility treatments and start their families. Each person is different.

7. Excision Surgery is the Gold Standard Treatment

Excision and ablation are two types of surgical procedures used to treat endometriosis. Excision surgery involves cutting out and removing endometriosis from the root. In contrast, ablation consists in using a laser to burn the top part of the implant, leaving the root behind.

Since the entire implant is removed with excision surgery, it has a lower recurrence rate than ablation. Additionally, excision does a better job of improving and decreasing patients’ symptoms. However, results will differ for each person.

woman sitting on couch with arms wrapped around herself thinking about the various endometriosis facts

8. Endometriosis is Incurable

There is no cure for endometriosis. You can have a successful excision surgery and still deal with symptoms or have endometriosis recur. The goal for treating endometriosis is to manage symptoms, decrease pain and improve the quality of life.

9. Endometriosis is Classified Into Different Stages

There are four different stages of endometriosis. And these stages are used to classify the severity of endometriosis. The stages are based on the number and depth of endometriosis lesions. For proper classification, a point system is used.

A stage one classification is comprised of one to five points. There is minimal endometriosis present with few superficial implants. You’re classified as stage two when you have six to fifteen points. Stage two is mild with more lesions and deeper implants.

For a stage three classification, you must have sixteen to forty points. It’s considered to be a moderate form of endometriosis. And there will be many deep implants present. Additionally, there may be small cysts on one or both ovaries. Lastly, filmy adhesions may also be found.

Stage four is the final stage and comprises more than forty points. This stage of endometriosis is severe and will have many deep implants. Additionally, large cysts may be present on one or both ovaries. And there will be many thick adhesions.

asian woman in pain from pelvic cramping with one hand resting on wall and other hand resting on abdomen

In addition to stages, five categories provide more detail about the different types of disease. The first category is Peritoneal Endometriosis. This category has minimal endometriosis found on the peritoneum, the membrane that lines the abdomen.

The second category is Ovarian Endometriomas. In this category, endometriosis creates cysts within the ovaries known as endometriomas. The third category is Deep Infiltrating Endometriosis I (DIE I). With DIE I, endometriosis has spread within the pelvic cavity. As a result, organs such as the ovaries, rectum, and uterus are impacted.

The fourth category is Deep Infiltrating Endometriosis II (DIE II). This is a more extreme form of deep infiltrating endometriosis. It includes organs within and outside of the pelvic cavity. The bowels, appendix, diaphragm, heart, lungs, and brain may be affected.

The fifth and final category is Diffuse Endometriosis. This is when endometriosis is found in multiple locations or organs. And there are severe adhesions present.


10. No Clear Cause for Endometriosis

Researchers and doctors are unclear about what causes endometriosis. But they do have theories. One theory is that it could be genetically driven since it tends to run in families. Another idea is that immune system dysfunction causes endometriosis. This means that the immune system fails to properly destroy endometrial tissue that grows outside the uterus.

Finally, doctors and researchers theorize that hormones could cause endometriosis. Estrogen has been known to increase the growth of endometriosis implants. However, researchers are still working to identify the cause of endometriosis.

Why Knowing These Facts is Important

Diagnosing and treating endometriosis is problematic because it’s not well-known and understood. However, understanding these basic endometriosis facts can help to dispel myths and misconceptions. Additionally, it can also help to increase awareness and contribute to early diagnosis and treatment. Thus, decreasing the pain and dysfunction that many go through because of this debilitating condition.