Endometriosis sufferers have had enough of the misinformation, inadequate care and ill-considered government funding, writes Claire Pini.
THERE IS NO CURE, no prevention and no known cause for endometriosis.
Endometriosis (endo) is a condition that has been consistently under-researched, under-diagnosed and under-treated throughout its history. It is an excruciating, debilitating disease affecting an estimated 830,000 people in Australia alone.
This week, during Endometriosis Awareness Month, Prime Minister Scott Morrison announced an additional $58 million for endo on Friday (25 March). However, the majority of this funding appears to be ill-considered.
On average, it takes about seven years after symptoms first present to receive a diagnosis. Common symptoms can include dysmenorrhea (painful periods), chronic pain, pain during or after sexual activity, painful bowel movements, painful urination, fatigue, abdominal bloating, nausea and infertility.
While the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) released practice guidelines for treating the disease as late as May 2021, its recommendations are grossly outdated. By contrast, the Center for Endometriosis Care (CEC) in the United States, is internationally renowned for its expertise in treatment and advocacy, using the most recent and accurate research available.
What is endo?
There are many misconceptions about endometriosis, so here are a few facts:
- endo is NOT the endometrium (lining of the uterus);
- endo is NOT just a painful period;
- endo is NOT caused by retrograde menstruation;
- endo does NOT only affect women;
- teenagers CAN have endo;
- pregnancy, menopause and hysterectomies do NOT cure endo; and
- hormone therapies do NOT prevent endo growth.
The most important piece of information to know about endometriosis is that it is not the endometrium (lining of the uterus). Endometriosis is a chronic inflammatory condition where cells similar to the lining of the uterus, grow outside of the uterus resulting in pain, organ dysfunction, adhesions and in some instances, infertility.
The use of the phrase similar to the lining of the uterus may appear to be pedantic, however, it is an essential distinction to ensure appropriate treatment and, as stated in 'An international terminology for endometriosis', this distinction ‘should result in harmonisation both in endometriosis research and in clinical practice’.
Endo differs from the endometrium both histologically and genetically. Endo cells also produce oestrogen, but while hormone treatments can sometimes be useful to manage symptoms of the disease, they cannot successfully treat the condition.
It is also important to note that endo is a whole-body disease. It has been found on every major organ and does not only affect women.
How is endo treated?
Currently, expert excision surgery is the gold standard of care. Expert excision involves surgically cutting away of the disease, ensuring that the root of the leision/s is removed entirely. This is not a cure by any means, but when performed correctly, excision surgery significantly reduces the chance of recurrence and can provide some relief of symptoms.
Surgeons trained in this technique, however, are hard to come by. Even those living in a capital city may struggle to find a suitable specialist. Additionally, most endometriosis specialists work in the private healthcare system, making it even less accessible to individuals with financial limitations.
We. Have. Had. Enough.
The organisations that are supposed to be representing ... endo sufferers are criticising the endo community for not speaking up at the right time?
Perhaps they could consider utilising their taxpayer funds to advocate for effective treatments themselves...
Outdated therapies (that are still in use)
Ablation is another technique where heat is used to burn or vaporise cells. However, ablation only removes the surface level of endo and more often than not the root of the end lesion as well as any scar tissue cells remain. The endo cells can continue to cause pain and continue to grow.
For this reason, ablation is not an appropriate technique for removing endometriosis. It is, however, often performed by gynaecologists who do not specialise in endometriosis. Patients typically begin to experience worsening symptoms and recurrence of endometriosis growth.
'Many times, "limited surgery" results in skimming/burning the top off the area of deep disease, leaving behind the bulk of endometriosis. This is not excisional, and allows for subsequent adhesion formation to bury remaining disease. Disease covered by new adhesions increases pain, leaving a very dissatisfied patient.'
The CEC explainer continues:
Burning/ablation, coagulation and other superficial approaches – with or without medical suppression – routinely result in poor outcomes and inevitably require costly reoperation in the future, subjecting the patient to additional procedures, increased expense and surgical risks – yet this sadly remains the ordinary approach to endometriosis.
Another approach often used to address the symptoms caused by endo is hormone therapy. This can range from common birth control methods such as the contraceptive pill, the Mirena (IUD) to more drastic approaches such as Zoladex/Lupron (used to suppress the production of the sex hormones, particularly in the treatment of breast and prostate cancer), which can cause several irreversible side effects.
Hormone therapies can be a useful tool for symptom management; however, they are bandaid treatments and should not be considered an alternative to excision surgery.
CEC also states the following about hormone therapies and endo:
'Medication does not eradicate endometriosis, however, and the disease does not simply "go away" as a result of drug suppression. At best, such a course of therapy provides only a temporary means of symptom improvement, not definitive treatment.'
Institutionalised misinformation and mistreatment
As mentioned above, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists' clinical practice guidelines for endo – the stated purpose of which is to ‘provide general advice to practitionersabout health issues concerning endometriosis and related conditions' – are outdated at best.
The RANZCOG guidelines have rightly been met with significant criticism as they are riddled with misinformation, outdated techniques, potentially harmful hormone therapies and to top it off, a whole lot of gendered language.
Recommendations include statements such as ‘‘consider hormone treatments to prolong the benefits of surgery’ and this:
Endometriotic deposits can be treated by excision ... or ablation ... These techniques are used to treat endometriosis of all degrees of severity, with the aim of removing all areas of disease and associated inflammation and tissue change.
Surgical techniques such as the choice of energy modality may be influenced by the surgeon's training and preferences, and the availability of equipment.
Unfortunately, RANZCOG is not the only organisation propelling outdated and potentially dangerous information. Government-funded bodies under the umbrella of Australia Coalition for Endometriosis (ACE) – including Endometriosis Australia, QENDO, EndoActive, Canberra Endometriosis Network, Pelvic Pain Foundation of Australia and Endometriosis WA – have also faced harsh criticism in the recent weeks throughout Endometriosis Awareness Month.
After three weeks of comments and pleas from sufferers for information about excision, to rectify misinformation on its platforms, to use inclusive language and for the guidelines to be changed being completely ignored, Endometriosis Australia finally responded with the following:
QENDO posted much of the same; however, it did update the branding. QENDO also created a survey, the findings of which it intends to collate in a formal letter to RANZCOG. However, it will only provide responses from QENDO members (that’s one of the survey questions).
We. Have. Had. Enough.
The organisations that are supposed to be representing and advocating on behalf of endo sufferers are criticising the endo community for not speaking up at the right time? Perhaps they could consider utilising their taxpayer funds to advocate for effective treatments themselves, rather than continuously putting the onus back on the endo community.
Speaking of funds, as mentioned above, the PM announced an additional $58 million for “specialist endometriosis treatment centres in every state and territory in the next Federal Budget”.
It appears that RANZCOG has quite literally been saved by the bell now that the Morrison Government has set aside $2.5 million of the funding to:
‘...transform and promote the Australian Clinical Practice Guideline for the Diagnosis and Management of Endometriosis into a “living guideline” that will be regularly reviewed and updated to reflect community feedback and the latest expert medical advice.’
However, not once does the $58 million pledged mention expert excision surgeries or further training in this area. In fact, the largest component of the funding has been allocated to MRI scans. This is a questionable decision given that endo cannot be reliably detected through MRI, an official diagnosis can only be achieved through excision surgery and subsequent histological testing.
Surely, the simple fact that excision is currently the only successful tool available to fight and diagnose this disease, would deem it worthy of funding.
It should not be this hard to access accurate information. It should not be up to the people living with endometriosis to ensure that doctors are getting the correct information to recognise, diagnose and treat this condition. Half-arsed guidelines and blanket funding statements are completely unacceptable. Expert excision surgery must be available and accessible to all, regardless of where you live and what you earn.
Further information about endometriosis may be obtained here:
- How to Endo, Bridget Hustwaite;
- The Center for Endometriosis Care (CEC) website;
- 'An international terminology for endometriosis', International Working Group of AAGL, ESGE, ESHRE and WES;
- 'Surgical Therapy of Endometriosis: Challenges and Controversies', Rimbach, Ulrich, and Schweppe; and
- 'Imaging modalities for the non-invasive diagnosis of endometriosis', Nisenblat, Bossuyt, Farquhar, Johnson and Hull.
You may also wish to sign the petition calling for RANZCOG to amend the Australian Endometriosis Guideline #changetheguidelines HERE.
Claire Pini is a Melbourne-based graphic designer, an endometriosis sufferer and advocate for greater awareness of the disease.
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