Endometriosis 2025 – all your questions answered

Endometriosis researchers, Professor Caroline Gargett and Dr Fiona Cousins answer your most frequently asked questions relating to this chronic inflammatory disease effecting one-in-seven menstruating people.

What causes endometriosis?

Despite growing awareness and the fact endometriosis is just as common as diabetes, why some people have this disease and others don’t, is still not understood. We are working to understand the causes including looking at the role of the endometrial stem/progenitor cells in initiating it.

What we do know, is endometriosis is an inflammatory disorder. An inflammatory response to clear the endometrial tissue fragments in the pelvic cavity is normal, but for those with endometriosis this inflammatory response is abnormal. We are investigating what may be causing this and how we might be able to regulate the immune system to function normally.

Is endometriosis a menstrual disease?

Endometriosis is multifactorial in nature, with a range of contributing factors, differing from person to person. Menstrual tissue alone is not the cause of the disease, but we believe it’s a contributing factor along with the peritoneal environment.

For most sufferers, but not all, the backward flow of live endometrial cells through the fallopian tubes and into the pelvic cavity (known as retrograde menstruation) can initiate the most common form of endometriosis; peritoneal endometriosis. Our research in the study here, has shown that endometrial stem/progenitor cells are found in the peritoneal fluid (cavity) of most people with endometriosis on day two or three of their period. These cells have the capacity to initiate the growth of endometrial tissues. This is why we say endometriosis can affect menstruating people. It also explains current treatments which use hormonal therapy to suppress menstruation.

Non-peritoneal sites of endometriosis are likely via a non-endometrial mechanism, occurring during embryonic development. This mechanism would also account for the endometriosis affecting those who have not yet started their periods.

This could also be due to neonatal uterine bleeding which occurs in about 5% of baby girls. Any endometrial stem/progenitor cells present in that tiny first menstrual bleed could invade the peritoneal lining and lie dormant until estrogen levels rise at puberty onset and initiate endometriosis lesions before menarche (the start of menstruation). You can read Prof Gargett’s paper on this here.

How could menstrual fluid be used to diagnose and treat endometriosis?

Two of the major issues presented by endometriosis, diagnostic delay and poor treatment options, could be addressed through the establishment of the Australian Menstrual Fluid Biobank for Endometriosis Research (AMBER).

We are exploring how menstrual fluid may act as a non-invasive diagnostic for endometriosis – similar to a regular blood test which provides us with a lot of data relating to a person’s health. Currently the main method used to diagnose all forms of endometriosis is a surgical laparoscopy. The development of a non-invasive early diagnostic test could change this, and the delayed time to diagnosis (currently the average time is six and half years). Ultrasound and MRI imaging can diagnose endometrioma (ovarian endometriosis) and deep infiltrating endometriosis (in the bowel or behind the vagina) but not peritoneal disease which is one of the most common forms of endometriosis.

An added bonus of the Biobank concept is that these samples could also be used to generate 3D endometrial organoids (mini endometrial glands) and stromal cultures, which can then be tested to identify the most suitable treatment for each individual patient.

“Menstrual fluid contains endometrial tissue and provides a non-invasive way of obtaining this tissue. We want to develop a diagnostic test for endometriosis based on its cellular, protein or molecular components.” Professor Caroline Gargett

Click here or on the image to listen to the podcast “What your menstrual Blood says about your health“, featuring Professor Caroline Garget on The Quicky. Prof Gargett starts at around 15.50 in the podcast.

Can endometriosis affect people post hysterectomy or menopause?

In some cases of recurrence post hysterectomy, it is believed small lesions that are not visible and not removed prior to the hysterectomy are still able to grow as estrogen is still produced by the ovaries (if they have been left in place). This is especially the case for deep infiltrating lesions of stage four endometriosis.

Symptoms typically improve after menopause when ovarian steroid hormones are no longer circulating. However, some symptoms can remain, i.e. pain due to central sensitisation. Inflammation symptoms can also be ongoing, given that biological women are more susceptible to autoimmune/inflammatory disorders than biological men, and in particular, women with endometriosis also have an increased risk of autoimmune disease. This is not always the case however – endometriosis is multifactorial in nature, with a range of contributing causes, differing from person to person.

What should I do if I suspect I have endometriosis?

Traditionally, many have been reticent to discuss their pain, but being open about your symptoms is the first step toward possible diagnosis and treatment.

If you are experiencing endometriosis-like symptoms speak with your medical practitioner as soon as possible to discuss what treatment and management options you could pursue. If you feel dismissed by your healthcare provider, it’s important to seek a second or even third opinion. Unfortunately, this is a common experience, especially when it comes to pelvic pain. If you feel your GP isn’t equipped to address gynaecological concerns, request a referral to a specialist, such as a gynaecologist. It can also be helpful to bring a friend or family member with you as an advocate during your appointments.

For additional support, you can find an Endometriosis and Pelvic Pain Clinic near you.

There are also some useful online forums including the Facebook page “Melbourne Endometriosis Sisters xo“.

Can you have endometriosis if you don’t experience all or any symptoms?

Endometriosis symptoms don’t always correlate with the severity of the disease. Some people living with endometriosis may be unaware as they are asymptomatic. Despite this, their fertility (among other things) can still be affected.

Some individuals with mild endometriosis may go their entire lives without knowing they have it, and could even get pregnant without experiencing symptoms. However, as the disease progresses to stages 3 or 4, it becomes much more likely that symptoms will emerge, as the lesions and adhesions can start to cause significant issues. So, while it’s true that some people may never be diagnosed or need treatment, there is an increasing number of individuals who are being diagnosed and who do require medical support.

We are working toward a day when screening for endometriosis can be as routine and painless as any other diagnostic test.

Should I be ashamed if I have endometriosis?

No, definitely not.

Although there is a taboo surrounding period pain, there is nothing normal about it and nothing to be ashamed of at all.

If you are experiencing endometriosis, or endometriosis-like symptoms, you are not alone; one-in-seven menstruating people live with endometriosis. Speak with your healthcare professional and discuss your options.

Is endometriosis inherited?

Individuals with a family history of endometriosis are more likely to develop the condition themselves. However, it’s also common for people to have endometriosis without any family history of it. It’s important to remember that endometriosis has often gone undiagnosed, and its symptoms can vary widely from person to person.

Can endometriosis cause infertility?

Around one third of endometriosis sufferers will have trouble falling pregnant. Importantly, not everyone with the condition experiences infertility, and many have children either before or after their diagnosis.

Infertility can be caused by scarring and distortion of the fallopian tubes and ovaries, reduced egg quantity and quality caused by damage to eggs in the ovaries, damage to or blockage of the fallopian tubes, or lesions that adhere to the uterus, bowel or pelvic wall.

There may also be changes in endometrial receptivity in individuals with endometriosis, meaning the endometrium may not be as conducive to accepting a fertilised egg as it would be in someone without the condition. However, further research is needed to fully understand the mechanisms behind this. Lesion removal is commonly recommended for those trying to conceive, as it can improve fertility outcomes and increase the chances of success with IVF.

When and why should endometriosis lesions be removed?

Endometriosis lesions are the source of the pain that many sufferers experience. In many cases, removing those lesions is the most effective way to eliminate or reduce that pain.

Laparoscopy (keyhole surgery), is used to diagnose and remove endometriosis lesions. It has been shown to improve fertility and pain symptoms, and is currently the best diagnosis and treatment option. Lesions often recur, meaning those living with endometriosis can have multiple laparoscopies throughout their life.

This surgery involves a small telescope which is inserted into the abdomen to identify endometriosis, and other instruments are used to treat it. Treatment involves either excision (removal of the endometrial tissue using cutting), ablation (which involves destroying the endometriosis cells using diathermy) or a combination of both techniques.

People who undergo surgery to have endometriosis lesions removed are typically those experiencing significant discomfort, often due to lesions or adhesions (where organs begin to stick together). In such cases, surgery is often the only effective way to remove the lesions and provide pain relief. For individuals with symptoms that are more manageable, lesions are usually not removed unless they are identified as a cause of infertility.

Discuss laparoscopic surgery with your medical professional to fully understand the scope of your procedure.

Do endometriosis lesions change over time?

It is not well understood whether endometriosis lesions change over time – whether they grow larger and produce more symptoms, or whether they might regress. There is evidence supporting both scenarios, but unfortunately, there is no way to predict how lesions will behave/evolve. Our clinical collaborators at Monash Health and the Monash University Obstetrics and Gynaecology Department are currently conducting research to better understand this.

What do we know about extrapelvic endometriosis?

Extrapelvic endometriosis refers to endometriosis lesions found elsewhere in the body, for example the muscles, joints, lungs and even the brain. This form of endometriosis is rare and makes up a small percentage of the patient cohort. It is suspected these lesions develop in a different way to pelvic endometriosis – which is the most common, affecting around one-in-seven menstruating people. Treatments for pelvic endometriosis may be useful for extra pelvic endometriosis.

Diagnosis in locations other than the pelvis is most commonly done via MRI/CT scan and then by biopsy. Pathology would stain for cytokeratin (epithelial cells), CD10 for the stroma, and they might also do Prussian blue for hemosiderin (iron deposits). Some case reports also report estrogen and progesterone receptor expression.

We are not looking at extra pelvic sites specifically, but we are hopeful that some of the treatments we are designing will target lesions on these sites given we are targeting endometrial like cells.

Is there a link between heavy metals used in tampons and endometriosis?

There are a few studies which have investigated the potential link between heavy metals and endometriosis.

A study found that individuals with endometriosis had higher exposure levels than the control group. However, the study did not gather information on participants’ preferred methods of menstrual product use, so it doesn’t address tampon use specifically.

Additionally, Science Feedback has debunked claims suggesting that tampons are a direct cause of endometriosis or related health issues. Their review clarifies that there is no evidence supporting this claim.

Clue also published an informative article on the topic, addressing concerns about metals in tampons.

Lifestyle factors

How do lifestyle factors, like exercise and diet, influence the severity of endometriosis? And are there any tips on how to improve these factors when living with endometriosis?

Endometriosis is an inflammatory condition, and there is considerable evidence suggesting that reducing inflammation can help manage inflammation-driven disorders. Strategies like anti-inflammatory diets, meditation, massage, yoga, regular exercise, and limiting alcohol intake have been shown to benefit some individuals. We encourage patients to discuss these options with their GPs for personalised guidance.

How can one support endometriosis research?

Every day we are reminded that women’s health conditions don’t receive the funding or priority in medical research that they should. Women are more likely to die from a heart attack, twice as likely to have a hip replacement fail (prosthetic hips have been developed for the male body), more likely to be over-medicated (women are frequently excluded from clinical trials) and less likely to have their pain taken seriously.

You can support endometriosis research by:

• Reading about our endo research here at Hudson Institute and spreading the word with your friends and family
• Signing up to our endometriosis newsletter: Endo News
• Creating a fundraiser to help power our endometriosis research

If you have any more endometriosis questions you would like answered, feel free to fill in this form.