Endometriosis: despite affecting 1 in 9 Australians assigned female at birth (AFAB), it is a condition that has only recently garnered the attention it deserves. March is endometriosis awareness month, so we’re getting right into the nitty gritty: what is endometriosis? How does it affect those experiencing it? And what are the steps to help change the current stigma and lack of accessibility around diagnosis and treatment?
Let’s start with the basics: what is it?
Endometriosis, often referred to colloquially as ‘endo’, is a condition where tissue similar to that which lines the uterus grows outside the uterine cavity. This can be anywhere from the ovaries, to the bladder and even just the spaces between our internal organs (the peritoneum).
How many people experience endometriosis?
Current statistics suggest 1 in 9 Australian women have endometriosis. It is mostly diagnosed in people aged 30 and older, but we’ll dive deeper into why that is shortly.
How does endometriosis affect those living with it?
So, as people with periods we know that when we menstruate, the lining of the uterus, the ‘endometrium’, sheds, and is expelled as blood. For people with endometriosis, similar tissue also exists outside of the uterus, and also sheds in response to the release of oestrogen, the hormone that effectively ‘starts’ our period. The growth of this tissue can cause inflammation and swelling in nearby areas, and the shedding and ‘bleeding’ of the tissue can form scars. In some cases, this scarring can cause organs to stick together. The combination of all these occurrences can create an immense amount of pain in the individual.
Key symptoms including:
- painful periods/pelvic pain
- pain around ovulating
- pain during or after sex
- heavy or irregular periods
- pain with bowel movements or urination
- chronic exhaustion
The key thing to understand here, however, is that everyone experiences it differently. Just how some people have more painful period cramps than others, those with only a small amount of endo can still feel immense pain, and others with large amounts may feel next to nothing. Or vice versa; everyone is different.
Infertility is also increased in those with endometriosis; the inflammation can damage a sperm or egg or affect how they move through the reproductive organs. In severe cases, the formation of scar tissue can block the fallopian tubes completely. However, endometriosis does not equal infertility; many are still able to conceive, and pregnancy can even alleviate symptoms.
So, what’s the problem?
Well, we know that people 30+ are most commonly diagnosed. However, endo can affect people as soon as they reach reproductive age; i.e. from when they first start their period. So why does it take so long?
For Australians, endometriosis takes, on average, 6.5 years to diagnose. This is for a combination of reasons:
- Normalisation of period pain: people with periods are taught from a young age that pain is simply part of the process. Many will wait 2-3 years after the onset of symptoms to seek help due to this misconception, because they believe what they’re experiencing is ‘normal’. This can also be reflected by General Practitioners who do not have as detailed an education on endo as an Obstetrician (Women’s Health Doctor), and may dismiss the symptoms as a ‘normal’ aspect of menstruation, or suspect other, more common causes of pelvic pain, and misdiagnose.
- It’s difficult to diagnose: you get your referral from the GP to see an Obstetrician, and the Doctor confirms your suspicions. Time to get tested for endo! Unfortunately, it’s not that simple: the only way to be diagnosed is through a laparoscopic surgery where Doctors can identify the tissue, and also remove some for biopsy to ensure it is endometrial. In Australian public hospitals, it is common to have to wait up to a year for this procedure, partly because it is in the lowest-priority category of elective surgery.
- Lack of accessibility: a recent Australian study found that Indigenous people AFAB were 1.6 times less likely to be hospitalised than non-indigenous Australians. While the core reason is not known, those conducting the study suggested that “difficulty accessing healthcare/hospitals, affordability, appropriateness (through comprehensive and non-discriminatory services), acceptability (through culturally appropriate services)” could all play a part.
All these reasons combined can cause a delayed diagnosis. This is a serious problem as the longer one waits for a diagnosis, the more tissue can grow and spread.
Is endometriosis curable?
Unfortunately, there is currently no cure for endometriosis. However, symptoms can be managed with surgery and/or medication.
How can we help?
Here’s the big Q… Currently endometriosis diagnosis takes so long because of the misconceptions both inside and outside of medicine, especially severe period pain being ‘normal’ (because it’s not!). Research and awareness is key! You can share this blog or others, hop onto https://www.endometriosisaustralia.org/ to continue educating yourself or if you have the means, donate to endometriosis research at https://www.endometriosisaustralia.org/how-can-you-help. The more peer-reviewed, scientific papers there are to help debunk common myths, work towards more accessible treatments, and find a cure, the better. Advocate for better education around periods in yours or your child’s school so that those with periods don’t go their entire lives believing excruciating pain is normal. And most importantly and if you are seeking a diagnosis – advocate for yourself; don’t give up the fight!
Written by Sascha Czuchwicki
Me By Aleenta Social Media Manager & Trainer
i Rowlands, I., Abbott, J., Montgomery, G., Hockey, R., Rogers, P., & Mishra, G. (2020, August 5). Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. British Journal of Obstetrics and Gynaecology .
ii American College of Obstetricians and Gynecologists. (2021, February). Endometriosis. Retrieved from ACOG: https://www.acog.org/womens-health/faqs/endometriosis
iii Endometriosis Australia. (2020). About Endo. Retrieved from Endometriosis Australia: https://www.endometriosisaustralia.org/about-endo
iv American College of Obstetricians and Gynecologists. (2021, February). Endometriosis. Retrieved from ACOG: https://www.acog.org/womens-health/faqs/endometriosis
v Endometriosis Australia. (2018). Research. Retrieved from Endometriosis Australia: https://www.endometriosisaustralia.org/research
vi Gargett, C., Filby, C., & Cousins, F. (2020, August 12). Endometriosis affects one in 10 women, why does it take so long to diagnose? Retrieved from SBS Insight: https://www.sbs.com.au/news/insight/endometriosis-affects-one-in-10-women-why-does-it-take-so-long-to-diagnose
vii Gargett, C., Filby, C., & Cousins, F. (2020, August 12). Endometriosis affects one in 10 women, why does it take so long to diagnose? Retrieved from SBS Insight: https://www.sbs.com.au/news/insight/endometriosis-affects-one-in-10-women-why-does-it-take-so-long-to-diagnose
viii Australian Institute of Health and Welfare. (2019, August). Endometriosis in Australia: prevalence and hospitalisations. Retrieved from Austraian Institute of Health and Welfare: https://www.aihw.gov.au/getmedia/a4ba101d-cd6d-4567-a44f-f825047187b8/aihw-phe-247.pdf.aspx?inline=trueix Australian Institute of Health and Welfare. (2019, August). Endometriosis in Australia: prevalence and hospitalisations. Retrieved from Austraian Institute of Health and Welfare: https://www.aihw.gov.au/getmedia/a4ba101d-cd6d-4567-a44f-f825047187b8/aihw-phe-247.pdf.aspx?inline=tru