Not just because March is Endometriosis Awareness Month.
Not just because politicians are promising big bucks towards endometriosis research if they're elected (not the first time either), but more importantly because those in the endo community (commonly referred to as “Endo Warriors”) have started what some can call a revolution.
What is endometriosis?
Endo is a condition where tissue similar to that of the lining of the uterus (the endometrium) implants or grows in other areas of the body, most commonly within the pelvic cavity.
It has been found in every organ within the body, including the brain.
It is important to get the terminology correct because the smallest misinformation regarding this disease can lead a sufferer down an unnecessary, painful path, which may include medication that does more harm than good.
It is a myth that endometriosis is a menstrual disease and that it can be treated/cured with hormone suppression, Zoladex (cancer drug), pregnancy or a hysterectomy.
There currently is no cure for endometriosis.
This disease affects one in nine people (more than 200 million people worldwide) and the debilitating symptoms include: painful periods, heavy bleeding (over 80ml per period), painful intercourse, lower back pain, intense cramping, nausea and pain during bladder or bowel movements.
Approximately two-thirds of those with endo will experience symptoms before the age of 20 years old.
Endo cannot be effectively detected through ultrasound or MRI; currently, the only way to confirm a patient has endometriosis is through laparoscopic keyhole surgery.
The gold standard for treatment is excision surgery (where the lesions are expertly cut from the organ) and not ablation (where the top of the lesion is burnt off leaving the ‘root’).
Not every obstetrician or gynaecologist is a specialist in endo or can even call themselves an excision specialist.
Recently the leading governing body in Australia, RANZCOG, released the Australian Endometriosis Guidelines through Endometriosis Australia, and the endo community is appalled.
There are 70 pages of the guidelines. It’s extensive. It’s a lot to take in. But just some of the major issues with the guidelines are:
• Gender-based language: The term “women’s disease” excludes much of the trans and non-binary community; not to mention, endometriosis has been found in some cis men as well.
• Infertility on its own is not enough to suspect endo: research shows 20 to 25 per cent of endometriosis patients affected by infertility may be asymptomatic.
• People with suspected endometriosis may require access to an obstetrician or gynaecologist: research shows if a patient has suspected endometriosis they must be referred to an excision specialist.
• Fails to distinguish between excision and ablation surgery, the diagnoses and surgical removal of endometriosis: research states excision is the only method that should be used to diagnose and remove endometriosis. It has the lowest rate of reoccurrence and endometriosis diagnosis requires a biopsy of the sample removed, which is difficult if ablation (burning of the endometriosis tissues) occurs.
• If hormone therapy (birth control) is not effective or not tolerated, consider three months of gonadotropin-releasing hormone GnRH agonist before surgery: before a patient (even at the age of 11, who is showing symptoms) has been formally diagnosed through laparoscopy, they are being recommended birth control and medication (some used to treat cancer patients) that has far more side effects than benefits, and is only there to act as a Band-Aid to the pain before a diagnosis is even made.
The endometriosis community wants to be heard, believed and stop having doctors gaslight them.
It wants to have access to the gold standard of treatment first time around.
Any government funding that does actually go ahead needs to have transparency (where is it coming from and where is it going) and the funding priorities should be training specialist excision surgeons and early education — covering the high school curriculum, as most symptoms show in the teen years.
It took me 17 years of begging doctors to take me seriously, to stop calling it “IBS” (irritable bowel syndrome), “bad periods” and “in my head” before I was able to have excision surgery last August, diagnosing me with stage 3 endometriosis in five locations in my body.
Excision is gold standard. Anything else is just a Band-Aid.
I have started a petition for RANZCOG to amend the guidelines, we have more than 2000 signatures and rising. If you would like to support the fight, please sign the petition at https://chng.it/ZwZnkBQ7 or look up #changetheguidelines on social media for more info.
— Sarah Pearson
Endo Warrior
For any further information or support, Sarah can be contacted at sarahbalaburov@hotmail.com
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