As the voice behind groundbreaking initiatives and a beacon of knowledge in the field, Heather Guidone sheds light on the urgency of imparting endometriosis education to young people.
From a young age as women we are taught that period pain is normal. Many of us have been told that nothing can be done, and in some homes/cultures speaking about periods is a taboo. how would you explain to a 9-10 year old what a period is?
I think the first thing to remember is that it really IS important to talk about periods in the first place. As you said, too many people still don’t, because they think it’s embarrassing, or something to hide, or even in some cases, “dirty” – none of which are true, of course, but these assumptions can even be generational and persist in many settings today. Everyone should feel comfortable talking about their bodies and understanding what’s happening to them.
Also, talking about periods helps everyone understand and reduces societal taboos attached to menstruation. It’s key to have the conversation in a way that meets individuals where they are, though – you want to frame the discussion in a way that’s factual, informative and invites questions, but which is also age-appropriate in terms of health literacy, simplistic, and of course culturally sensitive.
The critical messaging is that periods are not anything to be ashamed of and everyone should be able to manage theirs comfortably and with dignity. And the REALLY vital part of the conversation is helping an adolescent to understand what’s normal and what’s not. If period pain – which is such a hallmark symptom of endometriosis for so many, even though it’s not a ‘menstrual disease’ per se – is keeping you home from school, out of sports, interrupting your social life, that’s not normal, but you don’t have to suffer silently.
”Periods are not anything to be ashamed of and everyone should be able to manage theirs comfortably and with dignity”
Is there anything to be ashamed of when you have your period?
Absolutely not. I recognize the persistent stigmas which continue to surround menstruation, however, which are so unfortunate because they perpetuate a lack of body literacy and an unnecessary legacy of shame associated with periods. It can also have real implications for health, by reducing care-seeking, for example, which leads to sustained diagnostic delays and treatments where diseases like endometriosis are concerned. In fact, the concept of menstruation being considered the “fifth vital sign” has become the norm over the past two decades, emphasizing the importance of menstrual health as a key indicator of overall well-being similar to other vital signs like temperature, blood pressure, heart rate, and respiratory rate.
Given the high number of people affected by endometriosis, should endometriosis be part of their curriculum as a way of preventing endometriosis complications?
Without a doubt. Some of the reasons we have pushed for formal legislation that includes endometriosis education and why we support programs like EndoWhat’s School Nurse & Practitioner Kit is because early intervention is critical for management of this disease. All students should be made aware of endometriosis and its symptoms, so that it helps lead towards earlier diagnosis and treatment.
Through education also comes empowerment. And again, although it’s not just a ‘painful period,’ the association of endometriosis with menstruation is common for many; however, the association also promotes misinformation and stigmas about the disease. Including it in curricula helps bring endometriosis out in the open, reducing taboos and promoting open – accurate – conversation. Talking about the disease in the academic setting also improves body and health literacy, which is important for self-advocacy and supporting initiatives aimed at reducing diagnostic delays and choosing the best treatment for oneself.
What will be the most important thing that young people should know about endometriosis?
If I can only choose ONE key element, I would say it’s imperative that adolescents are taught to recognize the symptoms of endometriosis, including and especially those which are not what society typically recognizes (e.g., painful menses) – it’s so much more than just so-called killer cramps, with symptoms that can include severe abdominopelvic pain, pain during or after sex, painful bowel movements, painful urination, even collapsed lung in some cases and a whole host of systemic effects. Knowing the signs can help individuals seek care earlier and get proper treatment.
Should young people be taught that painful periods might be endometriosis?
I know I dwell endlessly on the fact that endometriosis isn’t just a ‘painful period’ and that it’s a whole-body disease which can affect those who menstruate as easily as those who don’t, but I do think it’s really imperative that individuals learn from an early age that while periods can be uncomfortable for some, they shouldn’t interrupt your life. The misconception that severe menstrual pain is normal and is just something someone has to endure contributes to delays in diagnosing and treating endometriosis. If you’re missing school or work or sports or social functions because of pain and symptoms, it’s a sign that something is WRONG.
The whole reason we continue to see an average of a decade-long delay in diagnosis with this disease is because society – medical professionals to patients, parents to children, peers to each other – is so entrenched in this mistaken belief that periods are supposed to be debilitating. This misconception is so deeply rooted in norms and cultural beliefs! It’s so far past time to promote open conversations and break the silence surrounding menstrual health, so we can empower every individual to advocate for themselves and seek appropriate care when needed.
Endometriosis is considered a disease that affects mainly fertile women. How is it in reality?
It’s really important to continue to debunk stereotypes surrounding endometriosis. First, the disease occurs at various ages, including adolescents and postmenopausal individuals. There are also reports in the scientific literature of the disease being found in fetuses (and a few men, while we’re at it). So while it may become more symptomatic during reproductive years (and more importantly, that’s when a patient frequently receives a diagnosis after being dismissed for a decade or longer), it’s definitely possible for endometriosis to be painful earlier or later in life.
It’s also imperative to recognize that even though the disease can and does affect individuals regardless of fertility status or gender identity (i.e., transgender men/non-binary/gender-diverse individuals) due to vast healthcare disparities and inherent biases, too often the emphasis is still being placed on procreative potential vs. quality of life or pain – so sometimes it’s not until the patient is unsuccessful at conceiving that they are even able to obtain a diagnosis in the first place. So again, while endometriosis is often discussed in the context of its impact on fertility and reproductive health, it’s actually a far more complex disease than just simply a ‘menstrual issue’ or ‘fertility disorder.’
Due to being a disease that not many speak about, some young people might believe that they are the only one that is weak. Is being in pain a sign of weakness?
No! Pain is a common human experience that occurs for assorted reasons – injury, illness, etc. Experiencing pain – and showing it – is not a reflection on a person’s strength and we’ve got to do better as a society at rewarding pain silencing. Telling people to ‘fight through it’ or otherwise minimizing their pain, teaching them to hide their pain, all of this is so HUGELY problematic. It contributes to a culture where people feel pressured to suppress pain rather than seek appropriate help and support. This has profound consequences for both physical and mental health and serves only to perpetuate harmful beliefs about suffering. To be clear – pain is real.
It’s a complex phenomenon that involves physical, emotional, and psychological components, which our bodies alert us to as a way of saying something is wrong. And this notion that the higher one’s pain tolerance, the better a person they are is SO damaging – in fact, we should be recognizing that pain tolerance varies from person to person and is influenced by so many factors…just because someone experiences pain differently or finds it challenging to cope with doesn’t mean they are weak. It actually takes a lot of strength to seek care and support!
Acknowledging and addressing our pain, making steps towards getting help to healing, reaching out for support and advocating for oneself – those things actually take a lot of courage, resilience and strength. Those are not signs of weakness! It’s far past time we started validating and supporting individuals experiencing pain, and showing empathy in how we respond – for both others as well as ourselves. There are no badges of honor being given out for ignoring pain – especially someone else’s.
It is well known that endometriosis can cause severe issues. Can these issues be prevented through education?
I’m not sure it’s fair to say education can prevent complications of the disease or progression of symptoms, but I do think it’s abundantly clear that education=empowerment and can change how and when a person advocates for themselves in terms of care seeking, demanding intervention and obtaining the care they deserve towards disease management.
There are many myths about endometriosis, from pregnancy is a cure to removing organs. Why are none of these a cure for endometriosis?
Where to begin? First, there is no cure for endometriosis. We’re still not even certain what causes the disease and every theory is just that – a theory. And all of them are the subject of heated debate. Probably the fairest thing we can say is that it’s a combination of factors as to why the disease happens in the first place. It’s also really imperative that we acknowledge there isn’t a one-size-fits-all approach to the disease; what works for one may not work for another, and even more importantly, it’s likely a comprehensive, interdisciplinary, multidisciplinary, integrative approach is best. While it’s true a hysterectomy or oophorectomy may bring relief for some, neither are curative.
The disease has to be treated in all the other areas it impacts as well. Leaving disease behind to persist is most likely going to continue to cause symptoms. So that’s not a cure. Nor is pregnancy, which is rooted in the antediluvian idea that because some folks in the early endometriosis literature indicated they felt better temporarily during pregnancy (i.e., due to changes in hormone levels, menstrual cessation, etc.), this meant the disease was eradicated.
Pregnancy doesn’t cure endometriosis and is not a ‘treatment’ for the disease at all. We need healthcare providers to stop prescribing pregnancy…it’s 2024, not 1920, and its high time this myth be put to bed for good.
“Is all in your head”. Most doctors who do not know endometriosis often tell their patients that their pain is not real. if there is a dangerous phrase this one is for sure. How can one know who is a specialist in endometriosis?
This is the one that gets me the most upset, I think. By invalidating and dismissing someone’s very real pain, which often impacts their entire life on every level and in every domain, is so dangerous. Really egregious conduct on the part of a practitioner who swore an oath to First, Do No Harm, actually.
When healthcare providers dismiss endometriosis pain as psychosomatic, it leads to delays in diagnosis and treatment, makes an individual less likely to seek medical help, further impacts their emotional and physical health, isolates them and makes them doubt their own bodies – on which they are the ONLY experts, by the way, undermines their trust in the healthcare system and so much more. Importantly, it can also lead to untreated or poorly managed endometriosis that results in complications (infertility, adhesions, chronic pain, etc.).
Finding someone who validates you, treats you as a partner in your care, has a compassionate bedside manner, admits they don’t have all the answers, is willing to refer to interdisciplinary specialists, and/or who themselves possess the vast skills needed to treat the disease effectively on a patient-centric basis is a little bit like finding a needle in the proverbial haystack of this community, as anyone can call themselves an endo specialist when in fact no such accreditation exists – but thankfully there are practitioners out there who CAN help.
Ask for peer referrals to start – patients know best who is successful at treating the disease. Find out about their annual volume – do they have a dedicated practice that is primarily directed at treating the disease? Or do they ‘dabble’ in endometriosis along with obstetrics and general obgyn practice? It’s ok to ask. Do they collaborate with a team to treat the disease fully i.e., a colorectal surgeon for bowel disease, physical therapists for adjunct care, so forth. Check into their reviews. No one is perfect, for sure, but are the majority of reviews good?
Why is it important for young people to know about endometriosis?
All people should know about endometriosis. It is an incredibly complex, systemic inflammatory disease (characterized by the presence of endometrial-LIKE tissue located elsewhere in the body) that affects nearly 200 million women and girls and unmeasured amounts of gender diverse individuals around the world. It’s a really insidious disease that can have far-reaching consequences, which for many can be catastrophic and disruptive – including one’s work life and earning potential, something which is often left out of the conversations on the disease.
It’s a public health crisis that imposes annual direct and indirect costs in just the USA alone of nearly 70 billion annually. It’s time everyone knows about endometriosis – young people included and maybe even especially, so that we can help promote early recognition, timely intervention, and more compassionate care at the first signs of the disease…not 10, 12 or 20 years into the person’s painful journey. It’s also imperative to correct as much of the widespread misinformation we continue to see, whether it is an article in the media or yet another celebrity’s story about endometriosis that contains absurdly incorrect details.
Misinformation has real consequences and contributes to the ongoing barriers to quality care, keeps the disease positioned as just painful periods or a menstrual condition only of women of reproductive age, and much more. Real, substantive, intersectional issues that have to be confronted and addressed – because lives depend on it. Knowledge is power: it allows individuals to prioritize their health, seek appropriate support, and advocate for themselves and actively participate in their own healthcare decisions. No one should be suffering in silence with endometriosis – or as is too often unfortunately still the case, screaming to be heard.