Endometriosis is an inflammatory condition which occurs when cells like those in the lining of the uterus (the endometrium) grow outside the uterus on organs and tissues in the pelvis, including the bladder and bowel. It is important to be aware of this condition as it is a common cause of chronic pelvic pain and sometimes difficulty in getting pregnant.
Endometriosis can affect women and girls, transgender, non-binary and gender-diverse people assigned female at birth, regardless of age, background and lifestyle. Current research estimates that up to 1 in 7 women may have endometriosis. However, the actual number may be higher as symptoms associated with endometriosis are often variable, different from person to person, and may vary from time to time. Sometimes someone can have endometriosis and never get any symptoms at all. This means it can often take some time to diagnose.
While there is currently no simple, effective screening test for endometriosis, we have put together RATE, a questionnaire which may help you and your doctor to recognise and assess symptoms that you have that may be associated with endometriosis.
So, go ahead and complete the RATE questionnaire. Your answers to these questions will help you discuss with your GP or primary health care provider about what to do and where to get effective help quickly.
Privacy Collection Notice RATE asks you questions about your health. Please read our Privacy Collection Notice on the next page to learn about how we will look after your data.
©Royal Australian College of Obstetricians and Gynaecologists 2020
Privacy Collection Notice
The information in this questionnaire is being collected by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (the College). The information is being collected for the purposes of assisting members of the public and their primary health care providers (ie their GP) to identify and discuss symptoms that may be associated with endometriosis. The information is also being collected by the College to evaluate whether the questionnaire is fulfilling the purpose for which it is designed. Collecting the information includes collecting and storing de-identified aggregate data (ie data collected from individuals to be used in research about groups of people); using the data to write articles for medical journals or to be presented at a medical conference.
The data entered in the RATE form will be collected through a US based company. The data will be regularly downloaded and deleted from that server by the College to be stored as de-identified data on a server in Australia or New Zealand. This means that personal or medical information about you will be stored separately from details that can be used to identify you, such as your name, or email.
The College stores personal information securely electronically and/or in hard copy. IT protection systems and internal procedures are used to protect the personal information held by the College. The College may store electronic information on remote servers or in the cloud directly, or through contracted agencies in Australia and New Zealand, as permitted by privacy legislation. Personal information is only to be accessed internally by those College employees who require access as part of their role. Information will be held until there is no longer a need or obligation to retain it, after which time it will be deleted or destroyed.
If you agree to your data being collected, stored and used by the College as above, please click 'I Accept'.
While everyone might have some belly pain occasionally, you should not put up with belly pain or period pain that is more than you can manage with over the counter painkillers like paracetamol or naprogesic. Going to the toilet should not be painful.
These symptoms can be a sign of an underlying health condition like an infection, inflammation or endometriosis. The good news is there are many treatment options that your GP can discuss with you, so it is important to go and get checked out so you can get the right treatment. Don’t feel embarrassed! This is something that doctors are trained to listen to and discuss with patients every day, and they will keep your information confidential.
If pain is present for a long period of time the symptoms can often get more complex. This is because the pain signals which are created by the body can become over-excited and cause a change in how a person’s pain is processed by the brain. As a result the pain system can become confused by these signals, which can cause a woman to experience painful symptoms from triggers which would not usually cause distress - like wearing tight pants.
It is also known that women who experience the condition fibromyalgia are more likely to have endometriosis. Doctors are unsure why this occurs but suspect it may be related to the immune system not quite working as it should.
The good news is there are multiple ways to successfully treat the type of pain experienced by women with 'over-excited' pain signals or a history of fibromyalgia – it is important to discuss this with your doctor. Your doctor might suggest referring you to a specialist pain clinic, which can provide ‘wrap-around’ services to help your symptoms.
You might also be interested in trying out some of the resources in these websites:
But even if these resources work well for you, please don’t delay talking to your doctor about your pain.
Periods that last for longer than 7 days, or that are particularly heavy, can be normal for some women, however long periods, or a very heavy menstrual flow can lead to anaemia (low iron) and be a sign of underlying problems such as fibroids or endometriosis.
While everyone’s menstrual cycle is different and the normal range is about 21 to 35 days, if your cycle is much shorter than 21 days or much longer than 35 days, this could indicate an underlying condition such as a hormone imbalance.
There are many treatment options available to manage these period symptoms. If you are concerned about any of these things, or are worried about anything else to do with your periods, you should make an appointment with your GP or doctor.
It might help to use a diary or download a period tracker app like these:
Keep track of your periods for 3 months, then make an appointment with your GP to review your diary or tracker and talk about your options.
Sex should not be painful, if it is it could be a sign of an underlying problem, such as an infection, inflammation or endometriosis. There are many treatments that can improve this problem. For more information check out:
It is important that you make an appointment to see your GP or healthcare professional and to go and get checked out, so you will get the right treatment.
Do not feel embarrassed - this is something that doctors are trained to listen to, and discuss with patients every day, and they will keep your information confidential.
You might like to keep a record or diary of the symptoms you are having to help explain your problems during the appointment.
Many couples can take up to a year or more to become pregnant. If you haven’t seen your GP already, you should consider speaking to your GP about optimising the health of your pregnancy. The Jean Hailes website provides some helpful information on understanding conception and pregnancy:
Take a copy of your RATE report with you when you next see your doctor.
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Note: When report appears, scroll to the bottom of the page to click on the link to your PDF report to view and save as normal to your device or print.