Black Women and Endometriosis

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FACT: Receiving a timely diagnosis for endometriosis can be a major challenge for many women. However, there is increasing awareness and advocacy towards addressing the under-diagnosis and treatment of this disease.

What is endometriosis?

Endometriosis is a chronic condition that has reproductive and health consequences. A great number of Black women are affected by endometriosis. The Endometriosis Association suggests that endometriosis, which is symptomatically characterized by pelvic pain, dysmenorrhea, infertility, and abnormal vaginal bleeding, has often been misdiagnosed in Black women as Pelvic Inflammatory Disease (PID) a sexually transmitted disease.

Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus but in a location outside of the uterus. Endometrial cells are cells that are shed each month during menstruation. In endometriosis, endometrial cells attach themselves to tissue outside the uterus and are called endometriosis implants. These implants are most commonly found on the ovaries, Fallopian tubes, outer surfaces of the uterus or intestines, and surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than other locations in the pelvis.

Endometriosis is most likely to affect you if you are in your reproductive years. Most cases of endometriosis are diagnosed between the ages of 25-35 years old. However, endometriosis has been reported in girls as young as 11 years of age.

The exact prevalence of endometriosis is not known since many women may have the condition without symptoms. Endometriosis is estimated to affect from 3% to 18% of women in the United States.

It is estimated that somewhere between 20% to 50% of women being treated for infertility have endometriosis, and up to 80% of women with chronic pelvic pain may be affected with endometriosis.

A study by the American Journal of Obstetrics and Gynecology reported that 40% Black women who were told they had PID actually had endometriosis.

Endometriosis is also among the leading causes of infertility in Black women (NIH, DHHS, CDC, NIAID).

Symptoms of Endometriosis

Most common symptoms are pain (usually pelvic) and infertility.

  • Pelvic pain usually occurs during or just before menstruation and lessens after menstruation.
  • You also may experience painful sexual intercourse (dyspareunia), cramping during intercourse, pain during bowel movements or urination, or painful pelvic examinations.
  • Other symptoms may include lower abdominal pain, diarrhea or constipation, lower back pain, irregular or heavy menstrual bleeding, or blood in the urine.
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How do you know if you are at risk for ovarian cancer?

According to the CDC, all women are at risk for ovarian cancer, but older women are more likely to be affected by this disease. About 90% of women who get ovarian cancer are older than 40 years of age, with the greatest number of cases occurring in women aged 60 years or older.

Most risk factors for ovarian cancer are still unknown. Doctors and researchers believe that endometriosis, a family history of ovarian cancer, and increased age are factors that may contribute to ovarian cancer. The American Cancer Society states that obesity and poor diet can increase the risk as well.

Treatment of ovarian cancer is most effective when found in its early stages.

Endometriosis FAQ

Endometriosis and infertility:

Between 20% and 50% of women who experience infertility have endometriosis. Some women may have more than one possible cause of infertility.

Doctors and researchers believe that the endometrial implants may change the chemical and hormonal makeup in the fluid that surrounds the organs in the abdominal cavity. This could interfere with or prevent the release of eggs from the ovaries (ovulation). Some women with endometriosis do not ovulate at all.

If you have endometriosis, how can it be diagnosed?

Endometriosis can be suspected based on symptoms of pelvic pain and findings during physical examinations in the doctor's office. Occasionally during a gynecologic exam, the doctor can feel nodules (endometrial implants) behind the uterus and along the ligaments that attach to the pelvic wall. At other times no nodules are felt, but the examination itself causes unusual pain or discomfort.

However, neither the symptoms nor the physical examinations can be relied upon to conclusively establish your diagnosis of endometriosis. Imaging studies, such as ultrasound, can be helpful in ruling out other pelvic diseases and may suggest the presence of endometriosis in the vaginal and bladder areas, but still cannot definitively diagnose endometriosis.

For an accurate diagnosis, a direct visual inspection inside of the pelvis and abdomen as well as tissue biopsy of the implants are necessary.

Laparoscopy is the most common surgical procedure for the diagnosis of endometriosis. Laparoscopy is a minor surgical procedure done under general anesthesia or in some cases under local anesthesia. It is usually performed as an out-patient procedure, and you will go home the same day.

How will your endometriosis be treated?

Endometriosis can be treated with medications or surgery. The goals of endometriosis treatment may include pain relief and enhancement of fertility.

What causes endometriosis?

No one knows for sure what causes this disease, but experts have a number of theories:

  • Since endometriosis runs in families, it may be carried in the genes, or some families may have traits that make them more likely to get it.
  • Endometrial tissue may move from the uterus to other body parts through the circulatory or lymphatic system. Endometrial tissue may back up into the abdomen through the fallopian tubes during a woman's monthly period; this is usually referred to as “retrograde menstruation.”
  • If you have problems with your immune system, it may fail to find and destroy endometrial tissue growing outside of the uterus. Recent research shows that immune system disorders and certain cancers are more common in women with endometriosis.
  • The hormone estrogen appears to promote the growth of endometriosis. Researchers are looking at whether it is a disease of the endocrine system.
  • New research shows a link between dioxin exposure and susceptibility to endometriosis. Dioxin is the name given to a group of 200+ chemicals that are formed as by-products of industrial manufacturing. Dioxins are powerful hormone-disrupting chemicals (EDCs). More research is needed to find out whether man-made chemicals cause endometriosis. For more information on EDCs, please visit our page on Environmental Justice.

RESOURCES

For more information about endometriosis, please contact the following organizations:

To learn more about endometriosis, visit the following websites: