Endometriosis Management in Australia: Experts Raise Concerns Over Surgical Practices
Allegations surrounding the use of surgery in managing endometriosis have sparked significant concern among medical professionals and deeply distressed women living with this chronic inflammatory condition. An extensive seven-month investigation into endometriosis treatment across Australia has revealed that updated best practice guidelines, informed by the latest medical research and evidence, are not consistently followed. This can unfortunately lead to devastating outcomes for patients.
Leading medical experts have shared their insights on what accurate diagnosis and effective treatment of endometriosis should entail, alongside outlining available options for women who have concerns about their current management plan. The information provided here is intended as general guidance, based on established best practice protocols and interviews with senior specialists. It is crucial to remember that this information is not a substitute for professional medical advice.
Understanding Endometriosis and Its Diagnosis
Endometriosis is a persistent inflammatory disease where tissue similar to the uterine lining grows outside the uterus, typically within a woman’s pelvic region. It is estimated that approximately one in seven Australian women are affected by this condition, and its exact cause remains unclear.
Symptoms can vary widely but commonly include:
- Severe and painful menstrual periods.
- Heavy or prolonged menstrual bleeding.
- Chronic pelvic pain.
- Pain during sexual intercourse.
- Infertility.
Endometriosis is generally classified into three distinct types:
- Superficial Peritoneal Endometriosis: This is the most prevalent form, characterised by small, freckle-like lesions on the pelvic lining.
- Endometriomas: These are cysts formed by endometrial tissue that develop on the ovaries.
- Deep Infiltrating Endometriosis (DIE): Affecting around 20% of women with the condition, DIE involves lesions that extend beyond superficial deposits and can penetrate deeper pelvic structures, such as the bladder or bowel.
Gynaecologist Alice Whittaker emphasises that these are separate disease types and one does not necessarily progress to another.
According to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) best practice guidelines, medical imaging should be the primary diagnostic tool. This pathway typically involves:
- A transvaginal pelvic ultrasound.
- A pelvic MRI, particularly if an ultrasound is unavailable or deep endometriosis is suspected.
- A transabdominal ultrasound, if a transvaginal ultrasound is not feasible or appropriate, and an MRI is not accessible.
RANZCOG guidelines explicitly state that laparoscopic surgery, often referred to as “keyhole” surgery, is not a required first-line option for diagnosing endometriosis, thanks to significant advancements in medical imaging technology.
Karen Mizia, a specialist in gynaecological ultrasound, notes that while ultrasounds are highly effective at identifying deep infiltrating endometriosis, the signs for superficial endometriosis are still being refined. She stresses that if endometriosis is not visible on a scan, it doesn’t automatically mean the patient is free of the condition. “If somebody has pain and we can’t find endometriosis, I assume it’s still there,” Mizia states. She adds that if pain is consistent and worsening, further investigations like laparoscopy remain valuable. Ultrasound is excellent for confirming the presence of endometriosis but cannot yet definitively exclude it.
Managing Endometriosis: A Multifaceted Approach
Currently, there is no known cure for endometriosis. Management focuses on alleviating symptoms through a combination of treatments, medications, and lifestyle adjustments.
RANZCOG guidelines recommend a spectrum of treatment options, primarily aimed at symptom management:
- Pain medication.
- Hormone therapy.
- Physical therapy.
- Psychological support.
Surgery, including excision (cutting out tissue) and ablation (destroying or burning tissue), can play a role depending on the severity of the disease. However, the RANZCOG guidelines highlight limited evidence supporting laparoscopic surgery’s effectiveness in reducing endometriosis-related pain and no evidence to suggest routine, repeated surgeries offer benefits in disease management. The guidelines also point out that hysterectomy does not always alleviate endometriosis symptoms.
Shamitha Kathurusinghe, a Melbourne-based gynaecologist, explains that removing organs like ovaries or the uterus, especially in younger women, is reserved for extremely 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 asserts. “Removal of an organ needs to be seriously considered.”
Do I Need Surgery for Endometriosis?
Not necessarily. While surgery can be part of the diagnostic process, it is not the recommended initial approach. Surgery is generally advised only for patients with severe endometriosis requiring intervention.
Gynaecologist Thierry Vancaillie expresses a differing view on the necessity of extensive surgical removal, stating, “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 a role in managing endometriosis-associated pain but acknowledges its inherent 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 advises.
Repeat surgeries for endometriosis are not uncommon, but RANZCOG guidelines strongly advocate for careful consideration regarding further laparoscopic procedures. Dr. Vancaillie notes that the initial laparoscopy for pelvic pain is often the most impactful. “Repeating laparoscopy is sometimes necessary, no doubt about it, but if it can be avoided, it should be avoided,” he reiterates.
When Surgery Might Be Considered
If you have been diagnosed with endometriosis, your doctor might not recommend surgery if it is not deemed the most appropriate treatment for your specific type and severity of the condition.
However, some women experiencing pelvic pain who suspect endometriosis feel overlooked or dismissed by the medical system when their condition cannot be readily identified or their symptoms are not fully understood. This can sometimes lead to a belief that surgery is the only solution to address their pain, prompting them to seek out practitioners willing to operate.
Gynaecologist Peta Wright suggests this perception might stem from a historical lack of understanding about endometriosis, where laparoscopic surgery was the primary diagnostic method. “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 explains. “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.”
Should I Be Concerned If Surgery is Recommended?
Not automatically. Surgery does have its place in the comprehensive management of endometriosis. The critical factor is ensuring that the steps outlined in the RANZCOG guidelines are followed before surgery is presented as a treatment option.
Dr. Vancaillie advocates for initial consultations with endometriosis patients to be thorough and unhurried, ideally lasting at least 45 minutes, and not concluding with an immediate decision to operate. “We would discuss surgery but not plan surgery in that first consultation,” he clarifies.
Dr. Kathurusinghe informs her patients that all other avenues will be explored before surgery is considered for severe endometriosis, and an operation will only proceed if both the doctor and patient are confident it will significantly improve 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 details.
If surgery involving the removal of reproductive organs (ovaries, fallopian tubes, or uterus) is recommended, best practice dictates that a fertility specialist must be involved well in advance of the procedure. Experts advise reconsidering your treatment path if this step is not followed or if a surgical decision is made during a brief initial appointment.
Crucially, as a patient, you have the right to make informed decisions about your treatment, including surgery, and to seek a second opinion.
Addressing Concerns About Endometriosis Treatment
If you have concerns about how your endometriosis is being or has been managed, several avenues are available:
- Your GP: Your general practitioner is a valuable first point of contact. They can discuss your concerns and help you find a different gynaecologist or specialist if necessary.
- Medical Records: You can request copies of your medical records and histopathology reports (if you have undergone surgery) from your doctor, specialist, pathology provider, or hospital. These results may also be accessible via the My Health Record online portal.
- Complaints and Registration: If you wish to lodge a complaint about your doctor or the treatment you received, you can contact the Australian Health Practitioner Regulation Agency (AHPRA). AHPRA’s website also allows you to check a doctor’s registration details, including any disciplinary actions or licence conditions.
- State and Territory Health Complaints Organisations: Each state and territory has a dedicated body for handling health complaints. A comprehensive list is available on the AHPRA website.
- Endometriosis Support Resources: For specific information and support regarding endometriosis, the government-funded Healthdirect website recommends resources such as Jean Hailes for Women’s Health, Endometriosis Australia, and Endozone.
