COMMON MISCONCEPTIONS OF ENDOMETRIOSIS

Updated December 2022 | 5 min read 
Expert contributors Endometriosis Australia; Dr Ingrid Rowlands, researcher, University of Queensland School of Public Health 
Words by Carolyn Tate 

Endometriosis comes laden with its fair share of old wives’ tales and distinguishing between fact and myth can be challenging. We cut through to the latest thinking.  

Endometriosis is a gynaecological condition that can be associated with chronic pelvic pain and fatigue, and which can profoundly affect quality of life, relationships, sex, intimacy, and in some cases, fertility. 
 
For many years endometriosis was a poorly understood disease, but a flood of information is now available, and with new research happening all the time, it can be overwhelming trying to sort fact from fiction. So, we’re here to help you distinguish the endometriosis facts from the myths.

Myth 1: The symptoms of endometriosis are just heavy period pain

Endometriosis pain can be crippling. Endometrial lesions can grow throughout the pelvic region and elsewhere, including on the ovaries, bowel and rectum.

School teacher Ann-Maree suffered “excruciating twisting pain” every month in her early 20s that was repeatedly misdiagnosed as appendix pain.

“Eventually when I had my first surgery, they discovered my ovary was attached to my backbone,” she says. “The endometriosis tissue was growing on itself. That’s why I was getting this referral pain up into my side.”

“The number of women^* who’ve been told it’s all in their mind enrages me. Are you kidding? Last cycle I was bawling my eyes out. I was in excruciating pain when I ovulated.”

Symptoms of endometriosis can include:

• painful periods
• pain during or around ovulation
• pain during or after sex
• heavy bleeding or irregular bleeding
• pain with bowel movements or urination
• pain in the pelvic area, lower back, or legs
• nausea
• fatigue
• diarrhoea and constipation
• difficulty falling pregnant (infertility).

“No one deserves to be in pain,” says University of Queensland School of Public Health researcher Dr Ingrid Rowlands. “It’s important to listen to women’s concerns and work out why they might have pain, what might make them more comfortable, and how we can help them best manage their pain.”

Myth 2: Endometriosis makes you infertile

Although endometriosis can sometimes make it more difficult to get pregnant, it doesn’t cause infertility in all of those who experience it.

According to the Australian Department of Health’s National Action Plan for Endometriosis, up to one in three women with endometriosis will experience some fertility problems. Speak to a specialist if you have endometriosis and are concerned about your fertility so they can tailor a plan based on your specific needs.

Myth 3: Pregnancy will cure endometriosis

This advice has been offered by well-meaning friends, self-help books, and even medical professionals, but the truth is there’s no cure for endometriosis.

Pregnancy can sometimes ease symptoms temporarily, due to changes in hormones and because women don’t have periods during their pregnancy. Some women find their symptoms lessen after going through pregnancy. Others experience the same or worsened symptoms.

Myth 4: Severe period pain is ‘normal’

Many girls and women, from teen years through to their 30s and 40s, may believe that severe period pain is normal, but this simply isn’t true.

Jean Hailes for Women’s Health advises that period pain should only be considered ‘normal’ if:

• the pain is there only on the first one or two days of a period
• the pain goes away with period pain medication or the contraceptive pill
• performing normal activities isn’t impaired.

If you’re experiencing severe period pain that prevents participation in day-to-day activities like school or work, see a doctor to get advice.

Myth 5: Mild pain means your condition isn’t serious

Mild symptoms don’t necessarily indicate that there isn’t damage being done, according to Women’s Health. A woman with extensive endometriosis may have no symptoms at all, while a woman with minimal endometriosis may have severe symptoms.

Dr Rowlands says she encourages women to be guided by their symptoms, and to seek help from a doctor if they’re concerned.

“Help can come in a variety of ways and from a variety of different people, including a general practitioner, gynaecologist, psychologist, or physiotherapist,” she says.

Myth 6: Endometriosis only affects women one or two days a month

“Endometriosis is an inflammatory condition, so it can present with symptoms throughout the entire menstrual cycle and can affect women in different ways,” says Dr Rowlands. “Some women might feel pain on most days, whereas it might come and go for others; other women will have no pain.”

As well as pain in the lower abdomen, women can also have pain in the back and legs, in the rectal area, and can even experience nerve pain, depending on where the lesions caused by endometriosis form. Sex can also be painful.

Dr Rowlands says pain isn’t the only symptom women experience. “Bloating, bowel and bladder problems, fatigue, and headaches are also experienced by women with endometriosis.”

Endometriosis can also affect personal and intimate relationships, as well as the ability to study and work.

“The costs of managing the condition can have a large financial impact. This can have a profound impact on a woman’s wellbeing – my research shows that young women with endometriosis report higher levels of psychological distress than women without endometriosis.”

One study by Monash University found a strong link between endometriosis and feelings of stress, depression and anxiety. It’s important to seek help if you’re feeling sad or anxious, or are having difficulty maintaining a good relationship, work or social life.

Myth 7: Endometriosis can be easily diagnosed

Many women might feel their symptoms aren’t severe enough to seek medical advice or their symptoms may be mixed making diagnosis difficult. Endometriosis on average takes eight to 10 years to diagnose.

If you see a doctor and don't feel like your concerns are being met, see another doctor for a second opinion.

Myth 8: Tampons can cause endometriosis

It’s unclear where this myth came from, but it’s possible it began because endometriosis has been linked with retrograde menstruation – a condition where menstrual blood travels back up through the fallopian tubes instead of coming out of the body via the vagina.

Tampons block the flow of menstrual blood, but then they absorb it, rather than sending it back into the body. Researchers have tested the theory of a link between tampons and endometriosis and found tampon use is the same in women with endometriosis and women without it.

Health and wellbeing support 

If you’re worried about your health and wellbeing and want to speak to a doctor, GP2U is a great place to start.  Through our partnership with GP2U, all HCF members with health cover can access a standard online video GP consultation (up to 10 minutes) for a fee of $50. See hcf.com.au/gp2u for more information. 

Thank you to Endometriosis Australia for its contribution to this article.