by Madison Corley, owner and founder of The Endo Resistance Project
TW: gendered language/imagery (in ESHRE's Guideline)
Who is ESHRE?
ESHRE stands for the European Society of Human Reproduction and Embryology. According to their website, their goal is "to promote interest in, and understanding of, reproductive biology and medicine." They also "advocate for better policies for people affected by infertility and for professionals involved in medically assisted reproduction."
What is the ESHRE Endometriosis Guideline?
The Endometriosis Guideline is a list of ESHRE's recommendations for treating endometriosis. ESHRE's goal with their guidelines is "to aid healthcare professionals in everyday clinical decisions about appropriate and effective care of their patients." Many doctors, especially endometriosis specialists, keep up with these guidelines and some use it to guide their medical care.
So... What's wrong with it?
One of the main purposes of this site and a goal of many endometriosis advocates is to create reform in how endometriosis is medically treated. So you'd think an updated 2022 guideline from ESHRE on how to care for endometriosis would be a good thing, right?
Unfortunately, instead, this new guideline is a major step backward in getting proper healthcare and treatment for endometriosis. Some of these guidelines seem to come from a lack of research, or from the authors creating correlation without causation, a few even contradicting each other. Some of the misconceptions contributing to ESHRE's recommendations are pushing us further from accurate diagnoses and proper treatment.
It is widely known in the endo world that the only way to fully diagnose endometriosis is laparoscopic surgery, and that excision (a technique that can be used during a laparoscopic surgery) is the best option for most when it comes to treating endometriosis pain and symptoms. This new guideline attempts to challenge that. Imaging, such as ultrasounds and MRIs, does not- or does not always- show endometriosis. More funding and technological advances could possibly create more accurate imaging, but we are just not there yet. However, the guideline claims that "laparoscopy is no longer the diagnostic gold standard". Regardless of imaging results, the results from these tests are not accurate enough to serve as a diagnosis or a lack thereof.
If ESHRE's goal was to ensure that more invasive approaches like surgery were only performed when necessary and would more often yield accurate results, they should have instead made the recommendation to OB/GYNs to refer possible endometriosis patients out to endometriosis specialists for a diagnosis and treatment. Speaking from experience, patients with endometriosis can "waste" a trip to the OR by scheduling a (diagnostic or not) laparoscopy with a general OB/GYN rather than an endometriosis specialist...
During my diagnostic laparoscopy in July of 2021, my gynecologist diagnosed me with endo, and used ablation to get rid of the lesions that she was able to see. After recovering from the surgery, I was still in severe pain, slightly worse than before surgery. I started seeing an endometriosis specialist instead, and had another operation in January of 2022. This doctor found a lot of endometriosis lesions that the other doctor had missed. He also removed a lot of scar tissue and my appendix, and was overall more successful in addressing my pain and treating the endometriosis.
An issue that many endometriosis awareness advocates have with the common healthcare provided for endo is the lack of (pharmaceutical) treatment options, and the detrimental side effects that many of them have. Apart from birth control commonly being prescribed to "treat" endometriosis, another common approach is to prescribe GnRH agonists, like Lupron. These medicines stop the patient's body from producing estrogen and progesterone, which, in turn, suppresses ovulation, essentially putting one's body in a menopausal-like state.
The side effects of this type of medicine include hot flashes, night sweats, mood swings, insomnia, decreased libido, acne, muscle pain, depression, and even bone thinning, leading to Osteoporosis.
ESHRE's endometriosis guideline not only suggests that GnRH agonists are used to treat endometriosis, they specifically recommend that adolescents be prescribed hormonal birth control and GnRH agonists (stated on page 15 of the 2022 guideline). When taken as a child or teen, GnRH agonists will halt puberty, which could lead to further issues in the future.
In a study conducted from 2008 to 2018, 96% of adolescents reported experiencing side effects while taking Lupron, 80% reported side effects for 6+ months after stopping Lupron, and 45% experienced side effects that they considered irreversible, including memory loss, insomnia, and hot flashes.
Though it may not be a major medical component to the guideline, another issue is the gendered language and imagery. Because gender identity and expression exist on a spectrum, we know that not all people assigned female at birth (AFAB) identify as women, meaning that there are people with uteruses that do not identify as female. A large portion of endometriosis warriors do not identify as female/women. Despite that, ESHRE's 2022 guideline repeatedly refers to its subjects as "women with endometriosis". It's important that we remain united as a community when we work toward awareness and reform, and this includes avoiding gendered language or any other way that suggests all endometriosis patients are women.
RESOURCE: If you are looking for a place to gain support that avoids gendered language and acts as a safe space for endo warriors of ALL genders, check out "Endo Knows No Gend-O" on Facebook!
Why is this important?
First and foremost, the release of this guideline is a huge letdown, because it could have been a major advancement in treating endometriosis. However, in terms of seeking reform, this is not the best we can do! These are not the recommendations we need to be pushing on endo warriors, especially growing teens.
We need more research, and better treatment options. These guidelines are a big step in the wrong direction and a slap in the face to those of us battling endometriosis. My hope is that the doctors that usually follow ESHRE's guidelines- some treat it like a bible for treating endo- see the misinformation in these particular recommendations and choose not to apply them to their medical approach.
While I do NOT recommend following it, you can read the full (patient version of the) guideline here. It's very important to arm yourself with information when combatting endometriosis stigmas and misconceptions, so reading through the guideline may help to give you a starting point and to see what exactly some of those misconceptions are.
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