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10 things too many people get wrong about endometriosis

Endometriosis is a condition where the endometrial tissue that lines the inside of the womb is found outside the uterus, becoming trapped in the pelvic area and abdomen. Symptoms include painful periods, persistent pain in the pelvic area, painful sex, painful bowel movements and infertility. Around the world, some 176 million women of reproductive age are affected by endometriosis, but myths and misunderstandings prevail.

It’s time to shatter some of those myths.

More: What OB-GYNs want women to know about endometriosis

1. Only young white women get endometriosis

Endometriosis doesn’t discriminate by age, race or any other variable. Many people think only Caucasian women in their 30s and 40s suffer, but teenagers and older women do, too, and African-American women are just as much at risk.

2. Endometriosis can be prevented

Unfortunately, the cause of endometriosis is unknown, and there are many conflicting medical opinions. One theory is that the endometrial tissue is transferred to the pelvic and abdominal cavities by the retrograde flow of menstrual debris through the fallopian tubes. Another theory is that areas lining the pelvic organs contain primitive cells that have the ability to develop into endometrial tissue.

3. Hormones or medication can cure endometriosis

The issue here is with the word “cure.” Many medications and hormonal treatments can treat endometriosis. In some cases, the disease subsides or goes into a remission-type state, but they will not get rid of the endometriosis implants. This means once the treatment is stopped, it’s possible that symptoms will return.

4. Endometriosis only affects pelvic organs

Although it’s true that endometriosis may primarily be found in the pelvic region, it has also been found as far away as the eye and brain. This is rare, but not impossible.

5. Endometriosis is easy to diagnose

This is possibly the biggest myth about endometriosis. Sadly, for many women, it takes several years to get an accurate diagnosis. Ultrasound, CT scans and MRIs tend not to show endometriosis, and a physical exam may not be of any further help unless there are larger nodules in certain areas. The only definite way to get an accurate diagnosis of endometriosis is through surgery, backed up by pathology.

More: What caused this woman to have her period for five god-awful years?

6. Pregnancy cures endometriosis

Pregnancy cannot be classed as a cure for endometriosis. In some cases, symptoms return after childbirth when the menstrual cycle resumes. In others, women experience symptoms during their entire pregnancy.

7. Endometriosis always causes infertility

It’s true that endometriosis can increase the risk of fertility issues, but having endometriosis does not mean a woman will definitely be infertile. The best way to minimize the chance of endometriosis-related infertility is to stop periods until you are ready to conceive, either through continuous hormonal contraception or a levonorgestrel IUD.

8. Endometriosis only causes pain during periods

Women with endometriosis may have pain every day, regardless of the time of the month or where they are in their cycle, because scarring and inflammation caused by the condition can result in constant pain. Some women find the pain debilitating and need to take prescription pain medications.

9. Only extensive endometriosis causes pain

The amount or stage of endometriosis is not linked to the level or frequency of pain. Women with extensive endometriosis may not experience any symptoms while those with only small amounts of endometriosis may have constant, debilitating pain. Where the endometriosis is located has more of a bearing on pain levels.

10. Women with endometriosis can’t take HRT

Taking hormone replacement therapy for relief of the symptoms of menopause does not necessarily reactivate endometriosis. This is a common misconception because estrogen is the fuel for endometriosis, but every case is different. Some women can take HRT with no endometriosis problems while others cannot.

More: Body shame is officially putting women at a higher risk for heart disease

A new feature documentary, Endo What, aims to raise awareness about endometriosis and put “power in the hands of women.” It is the work of Shannon Cohn, who was diagnosed with the condition 20 years ago and wants to dispel the myths and improve the standard of care for other sufferers.

For more information on endometriosis, visit the Endometriosis Foundation.

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