What experts want you to know about endometriosis , diagnosis and surgery as treatment

abc.net.au · Feb 23, 2026 · Collected from GDELT

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Allegations about how surgery is used to manage endometriosis have alarmed medical experts and distressed women living with the chronic inflammatory disease.As part of its seven-month investigation into endometriosis treatment in Australia, Four Corners discovered that updated best practice guidelines based on the latest medical research and evidence were not always followed and could lead to devastating outcomes for patients.We spoke to six experts about what diagnosing and treating endometriosis should look like and what options are available for women who may have concerns about how their condition has been managed.The following is general information only, based on best practice guidelines and interviews with senior specialists and is not a replacement for medical advice. You can learn more about how we sourced this information at the bottom of this story.What is endometriosis and how is it diagnosed?Endometriosis is a chronic inflammatory disease that occurs when cells similar to the lining of the uterus grow in other parts of a woman's pelvis.It is estimated that about one in seven Australian women are affected by endometriosis and it is not fully understood what causes the disease.There are a variety of symptoms associated with endometriosis, including (but not limited to) severe, painful periods, heavy menstrual bleeding, pelvic pain, pain during sex, and infertility.Endometriosis is generally categorised into three types:Superficial peritoneal endometriosis, which are small freckle-like spots on the pelvis. This is the most common type of endometriosis.Endometriomas, which are cysts of endometriosis that form on the ovaries.Deep infiltrating endometriosis, when lesions go beyond superficial deposits and can penetrate into underlying structures such as the bladder or bowel. This type of endometriosis affects about 20 per cent of women with the disease."It's really important to know that these are three distinct disease types, so it's not like one type necessarily progresses to the other," gynaecologist Alice Whittaker says.Alice Whittaker is a gynaecologist with a special interest in endometriosis and pelvic pain. (Four Corners: Ryan Sheridan)To diagnose endometriosis, best practice guidelines from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) state that medical imaging should be the first option.That diagnostic imaging pathway involves:A transvaginal pelvic ultrasound.A pelvic MRI if no ultrasound is available or if deep endometriosis is suspected.A transabdominal ultrasound if a transvaginal ultrasound is not possible or appropriate and an MRI is not available.The RANZCOG guidelines explicitly state that laparoscopic or "keyhole" surgery is "not required as a first-line option to diagnose endometriosis" due to improvements in medical imaging.Ultrasounds are very good at picking up deep infiltrating endometriosis, but we are just now discovering the signs for superficial endometriosis.Karen Mizia, who specialises in gynaecological ultrasound, says if she does not see endometriosis on a scan she does not assume the patient does not have the condition."If somebody has pain [and] we can't find endometriosis, I assume it's still there," she says."If you have pain and your pain is consistent and getting worse, then it is still valuable in doing a laparoscopy or other investigations to look for endometriosis."So ultrasound is good at including endometriosis as a diagnosis, but we can't completely exclude it at the moment."What does managing endometriosis involve?There is no cure for endometriosis, meaning the condition needs to be managed through a combination of medication, treatments and lifestyle adjustments.The RANZCOG guidelines recommend a range of treatment options, which are mostly focused on managing symptoms, including pain medication, hormone therapy, physical therapy and psychological support.Surgery can also play a role in treating endometriosis, including excision to cut out the tissue, and ablation to destroy or burn it, but it ultimately depends on the severity of the disease.The RANZCOG guidelines state that there is limited evidence to support laparoscopic surgery reducing the pain associated with endometriosis and there is no evidence that shows routine repeated surgery has any benefit to managing the disease.The guidelines also note that "hysterectomy is not always able to improve the symptoms" of endometriosis.There is limited evidence to suggest surgery will reduce pain associated with endometriosis. (Four Corners: Ryan Sheridan)Melbourne-based gynaecologist Shamitha Kathurusinghe says removing a woman's ovary or uterus — especially those in their 20s — would only happen in incredibly rare circumstances."There is a reason why we have these organs in our bodies … an ovary plays a pivotal role in a person's wellbeing, their bone health, their menopausal overall general health," she says."Removal of an organ needs to be seriously considered."Do I need to have surgery if I have endometriosis?Not necessarily. While surgery can form part of the diagnostic process, it is not recommended as a first option.Surgery is generally only advised for those patients with a severe type of endometriosis that requires removal."There's a school of thought that endometriosis can be microscopic and that therefore you need to remove as much as you can to then submit to histopathology, and the pathologist then has the opportunity to find endometriosis that you couldn't see with the naked eye. I'm personally not adherent to that theory," gynaecologist Thierry Vancaillie says."I believe that surgery should be kept to a minimum because it causes scar tissue. It is traumatic and therefore if it can be avoided, it should be avoided."Dr Whittaker agrees that surgery has its place in managing endometriosis-associated pain, but it comes with risks."I'm certainly not saying surgery is not an important tool … but I don't think everybody with a suspicion of endometriosis needs to have surgery. It needs to be part of a discussion with the clinician and the woman," she says.Surgery may not be the best option for every patient with endometriosis. (Four Corners: Ryan Sheridan)Multiple surgeries for managing endometriosis are not uncommon either, but the RANZCOG guidelines recommend careful consideration for repeat laparoscopic surgery.Dr Vancaillie says the first laparoscopy for treating pelvic pain is the most important and most effective."Repeating laparoscopy is sometimes necessary, no doubt about it, but if it can be avoided, it should be avoided," he says.Can I have surgery for endometriosis anyway?If you have been diagnosed with endometriosis, it is possible that your doctor may not recommend surgery to help manage the condition based on the type of endometriosis you have.However, there are instances where women with pelvic pain, who believe they have endometriosis, feel let down by the system when a doctor is unable to find it, or have their symptoms dismissed altogether by doctors due to a lack of understanding about their symptoms.That can contribute to some women believing they need surgery to "do something" about their pain and they will search for doctors willing to operate.Gynaecologist Peta Wright believes that is a hangover from when there was limited understanding about endometriosis and it was still mainly being diagnosed via laparoscopic surgery."It has in a way gaslit women into thinking that that's what they need to be taken seriously, so they're wanting this because they're told that surgery is the only way to validate and treat their pain," she says."But we've really moved on now in terms of our understanding of menstrual pain, chronic pain, and there's much more going on that surgery is unable to fix."Peta Wright says surgery is not always the best way to manage endometriosis. (Four Corners: Ryan Sheridan)Should I be worried if my doctor recommends surgery for endometriosis?Not necessarily — surgery has its place in the management of endometriosis.What is important is that the steps outlined in the RANZCOG guidelines are taken first before surgery is discussed with a patient to treat their endometriosis.Dr Vancaillie says a first consultation with an endometriosis patient should be a long appointment and not conclude with a decision to operate."Typically, that first consultation is 45 minutes and no less. It would be very difficult for me to actually figure out what's going on in less than that time," he says."We would discuss surgery but not plan surgery in that first consultation."Thierry Vancaillie has been a gynaecologist for 40 years. (Four Corners: Ryan Sheridan)Dr Kathurusinghe tells her patients that every other avenue will be explored before surgery is considered for severe endometriosis, and will only go ahead with an operation if the doctor and patient are confident it may enhance their quality of life."We then talk about their surgical journey as to what happens beforehand, what happens at the time of surgery in the recovery area, what their hospital stay would look like and what their follow up is," she says.If you have been recommended to have part of your reproductive system removed — such as an ovary, fallopian tube or uterus — best practice states that a fertility specialist needs to be involved well before the surgery occurs.If that does not reflect your journey before endometriosis surgery is suggested by your doctor or the decision to operate was made during a short appointment, experts say you should reconsider.Remember, too, that as a patient, any decision about your treatment — including surgery — is yours to make and you are entitled to seek a second opinion.What can I do if I'm concerned about my endometriosis treatment?There are several options available if you are worried about how your endometriosis has or is being treated.Your regular GP is a good first point of contact to discuss any concerns and can help connect you with a dif