Endometriosis - Myths and Facts

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Endometriosis is a condition in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue.  It is primarily found on the pelvic peritoneum, on the ovaries, in the recto-vaginal septum, on the bladder, and bowel. In very rare cases it has been found on the diaphragm and in the lungs.

Endometriosis affects an estimated 1 in 10 women during their reproductive years - usually between the ages of 15 to 49, which is approximately 176 million women in the world. However, endometriosis can start as early as a girl’s first period, and menopause may not resolve the symptoms of endometriosis – especially if the woman has scar tissue or adhesions from the disease and/or surgery.

Sadly, there are many myths surrounding endometriosis that prevent more women from seeking treatment or understanding their diagnosis, treatment options, and their future with the condition.

Myth #1 - Severe period pain is normal

The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, and social well being. Severe period pain of any kind is not normal nor is heavy bleeding and women experiencing these or other symptoms should see a healthcare provider.

A general lack of awareness by both women and health care providers, due to a “normalization” of symptoms, results in a significant delay from when a woman first experiences symptoms until she eventually is diagnosed and treated. Women of all ages need to be educated about what is normal and not normal. It’s essential to breakdown the myths that symptoms like painful periods or heavy bleeding are normal for some women so that women seek treatment more quickly. If a health care provider is dismissive of your symptoms, find another one. Be persistent!

 
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Myth #2 - Teenage girls and young women are too young for the condition

Too many physicians still believe that it is rare for teen girls and young women to have endometriosis. Consequently, they do not consider a diagnosis of endometriosis when girls and young women come to them complaining of symptoms like period pain, pelvic pain, and painful intercourse. Most recently the Global Study of Women’s Health, conducted in 16 centers in ten countries, showed that two-thirds of women sought help for their symptoms before the age of 30, many experiencing symptoms from the start of their first period.

If someone speaks to you about your body with anything but kindness and concern, it is he who has a problem.
— Dr. Jen Gunter, obstetrician-gynecologist

Myth #3 - Hormonal treatments, pregnancy, and hysterectomy are cures

There is no known cure and, although endometriosis can be treated effectively with drugs, most treatments are not suitable for long-term use due to side-effects. Surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and the surgeon’s skills.

Pregnancy may relieve symptoms but is not a cure for the disease. It is estimated that 30-40% of women with endometriosis may have difficulties in becoming pregnant. This, however, means that 60-70% will have no problems.

Hysterectomy, with surgical removal of all the disease at the same time, may also relieve symptoms, but may not be a “definitive cure” either. Removal of the ovaries at the same time as a hysterectomy is performed increases the chances of pain relief but also results in immediate menopause.

Myth #4 - Abortion and douching can cause endometriosis

There is no known cause of endometriosis, but it is highly likely that certain genes predispose women to develop the disease. Thus, women have a higher risk of developing endometriosis if their mother and/or sister(s) are also affected. It is possible that the age when at the first menstrual period, other gynecological factors, and environmental exposures influence whether a woman is affected. Historically, evidence has been weak with regards to exposure to dioxin (an environmental pollutant). Some evidence now supports the exacerbation of endometriosis symptoms due to PCBs.

A few studies have linked the presence of endometriosis with the development of ovarian cancer; however, the association is not definitive, and the absolute risk for a given woman with endometriosis is exceedingly low. Whereas endometriosis cells have been localized adjacent to ovarian cancer cells, the former has not been proven to be a precursor to cancer.

Even though endometriosis is associated with inflammation and immunological dysfunctions, it has not proven itself to be an autoimmune disease.

 
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Women with endometriosis may struggle with the emotional distress brought on by the unrelenting symptoms of pain and infertility, but such emotions are a result of the impact of the disease – they don’t cause the disease. It’s important to recognize the difference and encourage women to get medical attention and support.

For more information, visit Endometriosis.org, a global non-profit organization that works to raise awareness of endometriosis and provide education and resources. On the website, you’ll find links to organizations around the world that provide support to women with the condition.

Phendo is app to track, manage, and understand endometriosis. It’s part of Citizen Endo, a Columbia University research project to better understand endometriosis.

For more information and support around your midlife health, join us over at Lisa Health.