In this Neos Kosmos “Endometriosis – what it is and how to get treatment ” article, Associate Professor Magdalena Simonis AM discusses Endometriosis awareness and suggested action, and not letting let pain be normal.
NEOS KOSMOS Article
[5 March 2024]
Endometriosis is a painful, common disease that affects around one in nine women. Some begin experiencing symptoms from as early as puberty, and most sufferers are diagnosed up to twelve years later. It is treatable, but society has taught us that period pain that stops girls from going to school and puts women off from wanting to work or from catching up with friends is normal. But it’s not. This belief needs to change to help prevent years from being lost from school, life’s pleasures, opportunities, and work. Diagnosing and treating endometriosis early reduces the disease burden and benefits society, so Australia now has a National Endometriosis Action Plan. So, if you identify with any of the symptoms outlined in this article, make sure you see your doctor.
Endometriosis – what is it?
Endometriosis is a chronic inflammatory disease in which the lining of the uterus spreads from inside the uterus to the pelvis, bladder, bowel, ovaries and other organs. The way this occurs is complicated, but some of the menstrual blood flow flushes back into the body through the fallopian tubes. These little pieces of blood and tissue are fed by the hormones women produce and bleed inside the pelvis with each cycle, causing pain. Over time, they grow, causing inflammation, internal scar tissue and sometimes, large, painful, blood-filled cysts that burst. This can feel like an explosion of sudden pain that comes out of the blue.
Endometriosis symptoms checklist
- Painful periods that interrupt your day or night
- Pelvic pain – before, during or after a period
- Bloating – This suggests endometriosis is affecting the bowel
- Heavy menstrual bleeding – this includes periods that last more than eight days; needing to change your pad or tampon every hour; getting up through the night to change pads or soaking the bed with blood
- Pain with sex – both during sex and after sex
- Diarrhoea for no good reason, also referred to as ‘irritable bowel’
- Pain or bleeding on opening your bowels
- Pain on passing urine or feeling like you need to empty your bladder all the time with a period
- Feeling tired for no good reason
- Difficulty falling pregnant – up to 30% of infertility is caused by endometriosis, which has caused internal scars and blockage of the fallopian tubes.
If your mother or sister has had endometriosis, it is 7-10 times more likely to occur in you.
Starting periods before 11 years of age and having heavy or frequent periods also point to a higher risk for endometriosis.
Painful periods that stop you from going to school or work are not regular.
Period pain that makes you curl up in a ball for hours or more or puts you to bed for a day is not normal. Wrongfully thinking that this is just a part of being a woman means that eventually, one in nine young girls and women will experience pain that affects their schooling, career path, social relationships and participation in life.
Feel embarrassed to talk to the doctor, or the doctor won’t listen
It can be embarrassing talking about periods with a doctor. This is especially the case if you have been raised in a household that never talks about menstruation. Few people receive adequate education at home regarding their changing bodies, and only recently has there been a push to educate young people about this at school. Some don’t tell their doctor that their periods are painful or heavy because they believe that this is ‘just a part of being a woman’. Sometimes, they do tell their doctor about their troublesome periods but feel they haven’t been listened to, so it’s at this point you should ask around for a doctor who knows about women’s health issues. I also encourage you to check out the website links at the article’s end.
Tell your doctor about your symptoms
Not all endometriosis sufferers will come in with descriptions of painful, heavy periods, so unless the doctor enquires and is aware that symptoms are severe enough to stop a person from going to school or work or interfere with a person’s activities of daily life are not typical, the diagnosis will be delayed or missed.
This list of presentations is included here to demonstrate the diversity of endometriosis presentations I’ve seen as a GP
A 22-year-old woman presents saying, “I feel bloated all the time, and it’s worse with my period. I think I have gluten intolerance”.
A 35-year-old comes in saying, “I’ve been trying to fall pregnant for one year, and nothing has happened”.
A 28-year-old who says, “My periods are getting to me, and I feel exhausted all the time”.
It can take a few visits to get the correct diagnosis, so you must let your doctor know if you are not improving with treatment or if your symptoms persist. Booking a more extended consultation is usually recommended for complex problems, which gives you the time to talk and the doctor time to listen.
Diagnosis and treatment
Diagnosis usually begins with your GP. It includes taking a thorough medical and menstrual history, performing a physical examination, screening for pelvic infection, ensuring you are up to date with the cervical screening test (formerly the PAP test), and ordering a pelvic ultrasound.
It is essential to know that a routine pelvic ultrasound does not exclude endometriosis. Still, it excludes other forms of pathology and provides a good baseline. Unless there is obvious, extensive endometriosis on ultrasound, the doctor will usually start you on a trial of therapy such as non-steroidal anti-inflammatory painkillers and the oral contraceptive pill to stop ovulation and control the hormone cycle. If the symptoms improve, or even if they don’t improve, endometriosis is still likely.
Seeing your doctor around three months after starting a trial of treatment is essential. If you don’t respond to treatment, your GP might recommend a different option or make a referral to a gynaecologist, hospital, or one of the new endometriosis centres for further investigation.
Until recently, a diagnosis of endometriosis could only be made by a keyhole surgical examination of the pelvis and abdomen under general anaesthetic, called a laparoscopy. However, now we are fortunate to be able to refer people with a high suspicion of endometriosis to have magnetic resonance imaging (MRI) rather than go straight to surgery.
The good news is that if endometriosis is diagnosed early. Symptoms are dealt with in general practice with any combination of non-steroidal anti-inflammatory (NSAID) medication, oral contraceptives (OCP), or long-acting reversible contraceptives (LARCs), along with lifestyle advice, meditation, diet and exercise; surgery can be avoided.
How do I know what’s normal and what’s not?
Suppose you have been trying to make sense of your symptoms, and you can’t get relief or a clear answer from anyone, not even your doctor. In that case, some endometriosis consumer groups can help, which are listed below.
If you think your symptoms might be related to endometriosis, try this survey.
Source article and photo (depositphotos): NEOS KOSMOS
Associate Professor Magdalena Simonis AM is the Immediate Past President of the AFMW (2020-2023), former President of VMWS (2013 & 2017-2020) and current AFMW National Coordinator (2024-2026). She is a full time clinician who also holds positions on several not for profit organisations, driven by her passion for bridging gaps across the health sector. She is a leading women’s health expert, keynote speaker, climate change and gender equity advocate and government advisor. Magda is member of The Australian Health Team contributing monthly articles.
Magdalena was awarded a lifetime membership of the RACGP for her contributions which include past chair of Women in General Practice, longstanding contribution to the RACGP Expert Committee Quality Care, the RACGP eHealth Expert Committee. She is regularly invited to comment on primary care research though mainstream and medical media and contributes articles on various health issues through newsGP and other publications.
Magdalena has represented the RACGP at senate enquiries and has worked on several National Health Framework reviews. She is author of the RACGP Guide on Female Genital Cosmetic Surgery and co-reviewer of the RACGP Red Book Women’s Health Chapter, and reviewer of the RACGP White book
Both an RACGP examiner and University examiner, she undertakes general practice research and is a GP Educator with the Safer Families Centre of Research Excellence, which develops education tools to assist the primary care sector identify, respond to and manage family violence . Roles outside of RACGP include the Strategy and Policy Committee for Breast Cancer Network Australia, Board Director of the Melbourne University Teaching Health Clinics and the elected GP representative to the AMA Federal Council. In 2022. she was award the AMA (Vic) Patrick Pritzwald-Steggman Award 2022, which celebrates a doctor who has made an exceptional contribution to the wellbeing of their colleagues and the community and was listed as Women’s Agenda 2022 finalist for Emerging Leader in Health.
Magdalena has presented at the United Nations as part of the Australian Assembly and was appointed the Australian representative to the World Health Organisation, World Assembly on COVID 19, by the Medical Women’s International Association (MWIA) in 2021. In 2023, A/Professor Simonis was included on the King’s COVID-19 Champion’s list and was also awarded a Member (AM) in the General Division for significant service to medicine through a range of roles and to women’s health.
