Separating Facts from Fiction in Endometriosis Care

Visanne, touted as a revolutionary new treatment for endometriosis, has been making waves online. But here's the thing: Visanne is actually Dienogest, a medication that's been around since 2008.

While studies have shown that Dienogest can reduce endometrioma size, it's essential to note that this reduction doesn't necessarily mean the disease is reduced or stopped elsewhere in the body. Moreover, it's unclear if the size reduction is sustained once the medication is stopped.

This is not a new phenomenon. Other hormonal medications claiming to treat endometriosis have been shown to only reduce inflammation responses, not the lesions themselves. We've seen this with medications like Orilissa (Elagolix) and Lupron, which have been rebranded and renamed over the years. For instance, Lupron had previous versions like Regulix and Linzagolix being produced by ObsEva and Myovant. Regulix obtained FDA approval in Dec 2020, while Linzagolix is now Yselty. Eligard and Camcevi are also used as Lupron currently. Some of these drugs are Oral GnRH Antagonists, which block the pituitary gland from making certain hormones in both men and women. Others are muscle injections used in treating advanced prostate cancer and Central Precocious Puberty in children.

Unfortunately, these medications are not only ineffective in treating endometriosis itself, but also come with alarming side effects. They are responsible for chemical castration, resulting in questionable side effects such as loss in bone density, mood disruptions, hemorrhagic shock, abnormal uterine bleeding and vaginal dryness, headaches and hot flashes — just to name a few.

A recent survey conducted by SATIREV, collecting responses from 166 individuals diagnosed with endometriosis, sheds light on the alarming misconceptions surrounding endometriosis treatment. A staggering 67% of respondents reported being informed that hormonal medications would cure or stop the growth of the disease. However, as we've discussed, this is far from the truth.

The survey also revealed other shocking misconceptions:

— 43% of respondents were told to get pregnant as a cure for endometriosis.

— 33% were told that a complete hysterectomy would cure the disease.

— 32% were even told they were cured after surgery removal.

Becoming pregnant can exacerbate symptoms for some individuals, and in some cases, may even trigger the onset of endometriosis. Furthermore, a hysterectomy is not a cure for endometriosis, as the disease can occur outside the uterus, affecting various parts of the body. The presence of endometriosis in men, trans individuals, animals, and even fetuses underscores the flaws in these outdated recommendations.

Moreover, the notion that surgery alone can cure endometriosis is alarming. In reality, most surgeons performing endometriosis surgeries lack the comprehensive, multidisciplinary skills necessary to effectively treat the disease during surgery. This highlights a critical need to address medical school training and ensure that healthcare providers are equipped to provide specialized care for endometriosis patients.

Furthermore, the survey highlighted the alarming rate of misdiagnosis:

— 74% of respondents reported being misdiagnosed with another medical condition during their search for answers.

— 28% were told they had a mental health condition.

— 53% received medical referrals prior to their diagnosis, with 30% being strictly mental health evaluations.

Many notated having over 5 different referrals, all notating no issues. One participant noted a doctor blamed their childhood trauma, another was told they just had “a tight vagina that needed opening more.” One participant said they would take pictures and video as proof and were told they made it all up among the many said they are still being called “hysterical”.  Another participant was told that their GP was “impressed they were not an opioid addict.”

The emotional toll of these experiences is staggering:

— 20% of respondents began feeling suicidal after consultations.

— 40% felt overall traumatized.

It's crucial to understand that these treatment options should not be offered until a diagnostic, excision surgery is done by a multidisciplinary based specialist team. If you cannot attain treatment from an excision specialist, please understand what is being tossed at you as "treatment" options. None of these drugs will actually TREAT Endometriosis itself. But they may ease SYMPTOMS temporarily. The lack of properly educated professionals is problematic when compare do those that need the life saving care.

As someone who fit into many of these statistics and after almost loosing my life on more than one occasion, I'm concerned about the misinformation and hype surrounding Visanne and other medications passed off as “endometriosis treatments”. Alongside the outdated misconceptions being shared in the healthcare settings and in society. It's essential that we separate fact from fiction and critically evaluate the effectiveness of any treatment discussed, especially in a media hype.

It's striking that the media narrative around this approval sometimes reinforces the very issues it aims to address. For instance, one article emphasized the $7.8 billion a year cost endometriosis had on the Australian economy along with the loss of work experienced by individuals with endometriosis. They stated this approval to the PBS may be one of the solutions for helping “women remain and be effective in the workforce in Australia to close the gender pay gap.” It also contributes to those misconceptions of other medications, stating they are treatments for endometriosis itself — not the symptoms — which is what most medications actually do.

The focus on to the need for women with endometriosis to remain in the workforce overlooks the systemic barriers that contribute to the gender pay gap and current societal barriers in everyday life. Instead, we should focus on creating a more inclusive and supportive environment that acknowledges the complex needs of individuals with endometriosis. Accommodations IN the workplace should be adopted, rather than implementing medications that may not be suitable for everyone. By taking steps into a more accommodating work environment, we can work towards a more equitable society that values the well-being and contributions of all individuals.

While it's essential to acknowledge the limitations of hormonal medications like Visanne, it's also important to recognize that these options can provide relief for some individuals. Symptom management is a crucial aspect of endometriosis care, and having these options available can be a game-changer for those who find them effective. However, it's vital to approach these options with a critical and informed mindset, having open and honest discussions with medical professionals who are up-to-date on the latest research.

It's also important to remember that endometriosis is a complex and highly individualized disease, and what works for one person may not work for another. Even with the best treatment plan, some people may still experience pain and symptoms, and it's essential to acknowledge and validate these experiences rather than simply telling people to "try harder" or "do more." By acknowledging the complexities of endometriosis and approaching treatment with a comprehensive and informed perspective, we can work towards creating a more compassionate and effective care system for all those affected by this disease.

Avoiding certain limitations held within most studies, there was allocated space to share personal comments regarding certain questions, to represent more of each individual experience within the SATIREV data intake. One person highlighted being placed on 18 medications in 2 years – another person was given antibiotics or steroids almost constantly for 6 years straight. These experiences reinforce the urgent need for a more compassionate and comprehensive approach to endometriosis care. When managing or treating endometriosis, participants had advised that medical professionals work with empathy and open communication. Informed discussions would appeal to many of them. They hope the push to get pregnant can stop, including the forcing actions of treatments patients feel unsure of.

We owe it to ourselves, our communities, and future generations to demand more than what’s being given. We need treatments that not only address the symptoms but also prevent damage and harm to patients while the rooted enigma of endometriosis persists. We deserve treatments that prioritize our well-being, not just mask the symptoms while creating further questionable complications. We deserve better.