Intense period pain
is not just part of
‘being a woman’:
the truth about endometriosis
UQ Mythbusters
Few health conditions have been buried under as many misconceptions as endometriosis.
It is estimated that one in 7 people who have, or have formerly had, a uterus suffers from the condition, and a great many of them experience frequent, severe pain as a result. And yet, it can take as long as 7 years to be diagnosed, and the condition has historically been woefully under-researched.
Dr Sally Mortlock, a Research Fellow at UQ’s Institute for Molecular Bioscience, is working to change that. She’s deep in the fight for improved support, better treatment and faster diagnosis for those experiencing this often-debilitating illness.
For the latest edition of UQ Mythbusters during Endometriosis Awareness Month, we asked her to help us put some of the most persistent myths about ‘endo’ to bed.
What do you think is the number one myth that needs to be busted when it comes to the community’s understanding of endometriosis as an illness?
Endometriosis is not a ‘bad period’ that only affects women once a month. Endometriosis is a chronic and inflammatory condition that can affect women in different ways and for different lengths of time. The disease itself occurs when tissue similar to the lining of the uterus grows outside of the uterus forming lesions in other areas of the body. People with endometriosis can experience a range of symptoms, including debilitating pelvic pain, heavy and irregular periods, fatigue, pain during sex, bloating, bowel and bladder problems, headaches and infertility. Symptoms can occur during their period but also at other times throughout the menstrual cycle, post menopause and post hysterectomy. It can affect their relationships and ability to participate in study, work and society. The costs of managing the condition can have large financial impacts and can affect the overall wellbeing of the individual and their family. Endometriosis has profound life-long impacts on women’s health, employment, relationships and reproductive outcomes.
Image: Rabizo Anatolii/Adobe Stock
How much period pain is ‘normal’? What should you look for if you’re concerned that you may have the condition?
Intense period pain is not ‘normal’, nor is it a part of ‘being a woman’. Constant or intense pain and/or pain that impacts your ability to do normal daily activities and cannot be managed with over-the-counter pain medication is not normal. Pain experienced by people with endometriosis is not limited to period pain and can include pain around ovulation, pain during or after sex, pain when urinating or with bowel movements, pelvic and lower back pain, and chronic pelvic pain. Other symptoms can include heavy or irregular periods, fatigue, gastrointestinal discomfort and infertility. Symptoms vary greatly between women and the severity of symptoms does not always align with the amount/severity of the disease. Women with little pain can have severe disease, while women with severe pain can have only small lesions.
Is it true that, despite increased awareness, endometriosis sufferers can still often wait years for a diagnosis? Why is this?
Unfortunately, even with increased awareness it can take an average of 7 years between the onset of symptoms and diagnosis. Diagnosis is slow because there is no single, non-invasive diagnostic test, and many symptoms overlap with other gynaecological and gastrointestinal conditions. Diagnostic imaging can detect more severe lesions in patients, but the gold standard for definitive diagnosis is laparoscopic surgery. The surgery is invasive and costly. Clinical scores based on patient symptoms are also used to assess the likelihood and severity of endometriosis, however they are subjective, and symptoms can overlap with other medical conditions, which can result in inaccurate diagnosis.
Image: Rabizo Anatolii/Adobe Stock
Image: Rabizo Anatolii/Adobe Stock
Is it true that endometriosis can impact your fertility?
Not all people diagnosed with endometriosis will experience problems with fertility and most are able to have children. It is true that some people with endometriosis can experience difficulties getting pregnant (infertility). It’s estimated that 30–50% of women with endometriosis have infertility. The mechanisms causing this infertility are not fully understood. Endometriosis is a complex disease affecting many systems in the body, and fertility may be impacted through interactions between lesion type, inflammation, adhesions and altered pelvic anatomy, disrupted ovarian reserve/function and endometrial receptivity. Early diagnosis of endometriosis is particularly important for women with infertility because impacts from the burden of disease can be compounded by the effects of aging and diminishing ovarian reserve.
Some say that pregnancy will ‘cure’ endometriosis. Is there any truth to that claim?
Pregnancy is NOT a cure for endometriosis. Some people with endometriosis can experience a reduction in the severity of their symptoms during pregnancy, while others experience the same or worsened symptoms. The reduction in symptoms in some women may be attributed to hormonal changes during pregnancy and the absence of a period. Many women can experience a recurrence of symptoms after childbirth. Very few quality studies have been conducted in this area and current available evidence suggests that pregnancy does not seem to systematically result in benefits for women with endometriosis.
What should readers do if they feel their concerns about pain and discomfort have been dismissed by physicians?
If your doctor isn’t taking your concerns seriously then it’s time to find a new one. If your doctor dismisses your concerns, then please get a second opinion – and a third and fourth if necessary – until you are comfortable you have found a physician that has taken your concerns seriously. This may include additional tests or a referral to a specialist for further investigation. There are also online tools and resources available to help women share their concerns and experiences with their doctors, including EndoZone, Raising Awareness Tool for Endometriosis (RATE) and QENDO.
The information in this article is not intended as medical advice. Should this piece raise any health concerns for you, seek the advice of a clinician regarding treatment.
Yellow ribbon images: irissca/Adobe Stock
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