*edit: The main harmful video (7 April 2025) has FINALLY been removed! However, the videos posted on 28 March 2025 and 31 March 2025 are still live*

The aim of this petition is to request that the videos posted by the Royal Children's Hospital (RCH) on 28 March 2025, 31 March 2025 and 7 April 2025 containing "tips" from Dr Sonia Grover, OBGYN be removed from all social media and web pages, and that RCH provide a formal apology to endometriosis, adenomyosis and PCOS patients, their families and support networks.

The video in question impacts on patients who are currently living with endometriosis, adenomyosis, PCOS or similar conditions, as well as any young people yet to receive a diagnosis. The continued levels of misinformation regarding endometriosis or like conditions is a risk to patients, both physically and mentally. If patients, their families or support networks are not provided with accurate and evidence-based information, they stand no chance of good health outcomes. We trust in the medical profession to do the right thing, and urge the RCH to listen to the community.

Regarding the considerable risk this video poses to young people who are navigating the early stages of possible endometriosis or similar conditions:

In these videos, Dr Grover makes statements such as "for many young people when they have nausea, vomiting, diarrhoea, headaches, aches, pains, dizzy, faint are part of the normal process of having a period" and that those symptoms are "not of specific concern" to her. 

Dr Grover recommends "simple measures like Naproxen or Ibuprofen (anti-inflammatories), heat pack, gentle exercise, distraction, listening to some nice music" and if these don't work, "take the young person to the GP to consider whether other things like an ultrasound might need to be done or whether hormonal approaches to fixing this problem might be necessary' 

None of the symptoms that Dr Grover refer to in her video are considered by experienced and educated endometriosis specialists within the global medical profession to be "normal". Whilst the symptoms may fall under the medical category of Primary Dysmenorrhea, studies have proven that these symptoms can also be indicative of a larger problem, such as endometriosis, adenomyosis, PCOS or similar conditions.

Endometriosis is a chronic disease characterized by the presence of endometrial-like tissue outside the uterus, leading to a range of symptoms including pelvic pain, dysmenorrhea, infertility and more. While typically diagnosed in individuals of reproductive age (largely due to diagnostic delays average a decade or more), the disease can and does affect adolescents and young adults. Common symptoms include chronic pelvic pain, painful menses, gastrointestinal and urinary issues, painful sex and more; such symptoms can frequently be misattributed to other benign conditions (Bourdel et al., 2021), further leading to delays in intervention.

While not a 'menstrual disease,' menstrual pain (dysmenorrhea) is often an early sign of endometriosis. In fact, studies indicate that the disease may affect approximately 10% of adolescents experiencing painful periods (Khan et al., 2020). The pathophysiology of endometriosis in adolescents remains an area of active research, however. Genetic predisposition, hormonal influences, environmental factors and more may contribute to its development (Gonzalez et al., 2020), but its exact origins remain unknown. There is no way to prevent endometriosis and no absolute cure, and it isn’t something you can ‘catch’ or transmit to others. Endometriosis is not an infection. 

Early diagnosis is crucial, as untreated disease can lead to significant physical and psychological distress, impacting quality of life and potentially leading to issues later in life ranging from infertility to chronic pain. Management strategies for adolescents are largely the same as with adult patients, ranging from pain relief through NSAIDs and hormonal therapies to suppress menstruation to surgical excision. Education and support are vital components of care, as adolescents may require guidance in understanding their disease and navigating the healthcare system. (ref: Centre for Endometriosis Care)

There is currently an approximate diagnosis delay of 6.5 years for endo patients in Australia, largely influenced by the dismissal and misdiagnosis of patients by practitioners.

Regarding the considerable issue with the RCH removing patient comments in response to these videos and silencing the overwhelming concern from the endo/adeno/PCOS community:

We find it hypocritical that the RCH social media policy states that:

"Visitors who perpetuate views that are contradicted by evidence-based research and global health expertise, and which pose a threat to public and individual health, will be immediately blocked. This includes participants who harass other visitors to the page with incorrect medical information."

The endo community believe that it is the videos of Dr Sonia Grover that perpetuate views that are contradicted by evidence-base research and global health expertise and that pose a threat to public and individual health. We find it extremely concerning that the RCH would promote and protect the very thing it seeks to block from external parties.

Our demands:

• That RCH remove the videos published on social media on 28 March 2025, 31 March 20/5 and 7 April 2025
• Issue an apology to the endometriosis community for the removal of comments and attempt to silence patient voices
• Conduct an internal review into the work practices and policies for publishing medical information and treatment advice on social media and web pages to ensure that only evidence-based information is being provided to patients and the community 

References:

Centre for Endometriosis Care: Dr Ken Sinervo, Dr. José D. Eugenio-Colón

Khan, K. N., Fujishita, A., & Kitajima, M. (2020). Endometriosis in Adolescents: A Review of the Literature. Journal of Pediatric and Adolescent Gynecology, 33(5), 457-464.

Bourdel, N., Rame, J., & Canis, M. (2021). Endometriosis in Adolescents: A Review of Current Knowledge. European Journal of Obstetrics & Gynecology and Reproductive Biology, 256, 116-121.

Gonzalez, A. L., & DeWitt, R. (2020). The Role of Genetics in Adolescent Endometriosis: An Overview. Journal of Pediatric and Adolescent Gynecology, 33(6), 634-639.