In the United States, more than 11% of women between the ages of 15 and 44 suffer from endometriosis, according to the U.S. Department of Health & Human Services's Office on Women's Health. This common but poorly understood disease does not discriminate among ethnic and socioeconomic backgrounds, and depending on the severity of women’s symptoms, it can negatively impact women’s lives.
Many celebrities, including Lena Dunham, Jillian Michaels, Padma Lakshmi, Whoopi Goldberg and Julianne Hough, have opened up about their struggles with endometriosis. If you have or think you might have the disease, read on to learn about the symptoms and what you can do to keep them from overtaking your life.
What is endometriosis?
Endometriosis occurs when endometrial cells, which normally line the uterus (endometrium), grow outside of the uterus, most commonly affecting the ovaries, fallopian tubes, bowel and pelvic tissue lining. Less commonly, endometrial tissue can be found on the vagina, cervix, bladder, and even more rarely on areas outside of the pelvic region.
This tissue behaves as endometrial tissue that is shed from the uterus during menstruation normally would, by breaking down and bleeding during menstrual periods. However, this tissue isn’t shed from the body and may irritate the tissue surrounding the organs affected, eventually developing scar tissue and adhesions, which can result in severe pain.
What are the symptoms of endometriosis?
Some women experience no symptoms of endometriosis, while others experience symptoms that range in severity. Some common symptoms include:
• Chronic pelvic pain
• Painful periods
• Excessive bleeding during menstrual periods (menorrhagia)
• Bleeding or spotting between periods (menometrorrhagia)
• Abdominal pain
• Painful intercourse
• Painful bowel movements or urination
What causes endometriosis?
The direct causes of endometriosis remain unknown. Some possible explanations include retrograde menstruation, in which menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body; the transformation of peritoneal cells, when hormones or immune factors transform the cells that line the inner side of the abdomen into endometrial cells; coelomic metaplasia, when the tissues lining pelvic organs contain primitive cells that develop into other tissues; surgical scar implantation, in which endometrial cells attach to an incision after surgery; cell transport, transporting endometrial cells through blood vessels to other parts of the body; or an immune system disorder.
Risk factors include:
• Never giving birth or delaying pregnancy
• Early menstruation
• Later menopause
• Short menstrual cycles
• Low body mass index (endometriosis is most common in tall, thin women)
• Uterine abnormalities
• Genetics (having a relative with the condition)
Though diet may play a factor, more research is needed to confirm a link.
How can endometriosis affect work and other aspects of a woman’s life?
Because endometriosis symptoms most generally occur when a woman is in her 30s and 40s, it can have a detrimental effect on her working and home life. According to one study published in the Journal of Managed Care and Specialty Pharmacy, women with endometriosis have a lower level of productivity at work, likely due to the severity of symptoms and pelvic pain or other pain affecting their ability to perform job functions. The study found that women who suffer severe endometriosis symptoms also have a higher rate of absenteeism from work.
Complications from endometriosis can be detrimental to a woman’s mental and physical health. Between 30 and 50% of women with the condition suffer from infertility, which may result in anxiety, depression and other emotional issues in women affected (the rate of these psychological conditions is higher in women dealing with infertility). It can also affect a woman’s relationship with her partner.
Although the risk is low, ovarian cancer occurs at a higher rate in women with endometriosis than in those who don’t have the condition.
What can women do about endometriosis?
There is no cure for endometriosis, but some treatments may offer pain relief and help other symptoms affecting women's health.
The first step toward treating endometriosis is getting it diagnosed. Your OB-GYN will diagnose it through a test or series of tests, including a pelvic exam, ultrasound or laparoscopy (a surgical procedure that is usually used a last resort for confirmation).
Depending on the severity of your symptoms, your doctor will probably recommend taking over-the-counter pain medications, such as nonsteroidal anti-inflammatory drugs, ibuprofen or naproxen, for pain relief.
If these pain medications don’t provide full pain relief, you may try other treatments such as hormone therapy. This treatment may include oral contraceptives (birth control pills) or other drugs. It’s important to note that these medications won’t cure endometriosis; symptoms may return after you stop taking them. Also, be sure to consider the side effects and risk factors of the medication before taking it.
Your doctor may also perform conservative surgery, usually after exhausting other methods, to remove as much of the endometriosis as possible, while preserving your uterus and ovaries. This procedure may increase your chances of getting pregnant if you suffer from infertility and can also reduce severe pain.
As a last resort, your doctor may advice a total hysterectomy, removing your uterus and cervix, and ovary removal to ensure that the endometriosis does not return. There are many side effects and symptoms associated with a hysterectomy, including early menopause and increased cardiovascular disease.
What if you can't get pregnant?
If a woman with endometriosis cannot get pregnant, there are many options. Aside from conservative surgery, which can help, women may elect an additional or alternative therapy, such as in vitro fertilization (IVF).
Endometriosis can cause painful symptoms and other difficult conditions, but it doesn’t have to ruin your life. There are ways to manage your pain and resolve the other issues association with it. Make sure to discuss your options with your doctor to decide what’s best for you.