Endometriosis - The Women's Silent Epidemic

Endometriosis - The Women's Silent Epidemic

By Jo Lincolne
This sounds like a disease from a bygone, unenlightened era, or another planet, but it is the world of a woman with endometriosis. Even the name is hard to spell and pronounce and therefore there is hesitation to utter it.

But unvalidated and unrecognised pain can lead to a whole host of other conditions, including depression. In the case of endometriosis, it can also lead to infertility, bowel and bladder problems and greater immune dysfunction.

Imagine a disease that affects the whole female body and its systems and debilitates them with pain, swelling and infertility.
Now listed amongst the top 20 most painful conditions that exist, Endometriosis costs sufferers AU$30,000 a year and takes up to 10 years to diagnose. It’s common for these women to have their Endo dismissed or normalised in all communities – medical, professional and social. Once diagnosis occurs (only through an operation) there is no cure or fully effective treatment that doctors or surgeons can offer them. Endometriosis is still left out of basic health-care education and is beyond the scope of many doctors and surgeons. For the almost 200 million women who suffer worldwide, there are only approximately 200 advanced specialist surgeons who can treat them.

This sounds like a disease from a bygone, unenlightened era, or another planet, but it is the world of a woman with endometriosis. Even the name is hard to spell and pronounce and therefore there is hesitation to utter it.


A Silent Epidemic As we head into ‘Endo March’ we want to give voice to this now-called ‘silent epidemic’. This epidemic’s most common symptom is chronic and acute pelvic pain, but too often, women don’t talk about it or learn not to bring it up – with their families, workplace and doctors.

The lesions are most commonly found in the pelvic region, however, endometriosis has now been discovered in every organ of the body and affects the immune, reproductive, gastro-intestinal, urinary, respiratory and central nervous systems.
Endometriosis lesions behave in the same way as the tissue in the uterine lining – it thickens and bleeds every month, as they have established a blood supply, like little vampires, but the blood cannot escape and the body has lost the balance in the fight to dissolve it. Over time, this monthly shedding causes the formation of scar tissue, cysts and adhesions around the endometriosis lesion, which triggers an immune response in the body leading to chronic inflammation. These adhesions can also stick organs to each other and cause twists and blockages.

It is important to know that endometriosis is fundamentally an inflammatory disease, and while the growth of endometriosis lesions are strongly stimulated by estrogen, it is not a hormonal condition, but an immune dysfunction – potentially an auto-immune related condition.
When we consider it from an economic perspective, Endometriosis costs Australia over AU$9.7 billion annually and has a higher economic burden than diabetes! So why has the disease been disregarded for so long?

Endo is a disease that wears so many different hats and shows up in so many different forms. Traditionally, if at all, it was known as a “female disease”, and therefore not much discussed, except in whispers. It has long been a neglected, gendered, politicised disease and has been subjected to a number of myths over the years.

Did you know that endometriosis was once nicknamed ‘the career woman’s disease’?! It was once thought by doctors and researchers that women who made the decision to have children later in life (those pursuing education or careers) were more likely to develop it!
Obviously, this myth has now been debunked, but this is one example of the many mistaken beliefs that surrounded endometriosis. Others that abounded were: Endometriosis is all about bad cramps…Birth control pills cure it…Surgery cures it…Only a hysterectomy can cure it.

All untrue.
In the meantime, the female body has become a battle ground.

So what is Endo exactly? Endometriosis is a disease in which tissue similar to the lining of the uterus (but not the actual lining) grows in other places in the body. The tissue, which is highly sensitive, becomes inflamed and creates lesions (or adhesions).

This is for a number of reasons – they may be embarrassed by the details, they may feel that no-one has the time to really listen, that no-one can really comprehend, or they may think those listening believe they are exaggerating or constantly searching for a pity-party. They may have been told by their mother, “I had to put up with it, and you will just have to as well”.

In the work-place, the hesitation to share may be because it’s extremely hard to talk to managers and colleagues about the condition due to the personal nature of the disease and also because they don’t want to be perceived as ‘unproductive’ and ‘unreliable’.
The hesitation to speak up may also come from trying to explain to the doctor what they are experiencing and being told that the pain is ‘normal’ or to ‘just take pain-killers’ or ‘there is no evidence of any condition’ and then to be rushed out of the doctor’s office before their next patient.

Research is now emerging that this ‘normalisation’ of painful symptoms is a large part of the reason why it takes women with endometriosis so long to get a diagnosis. Sufferers are a key player in their endometriosis journey, but along with feeling a loss of control about what is happening in their bodies, they also feel a loss of control about the decisions being made about their bodies. Therefore, advocacy for sufferers, spreading awareness and being part of a small or larger support team is so needed – Endo Warriors need all the support they can get!

Because there is certainly nothing normal about searing, pulsating, stabbing, bearing-down, labour-like pain during your period. There is nothing normal about pain during bowel or bladder movements. There is nothing normal about a constantly bloated and distended belly. There is nothing normal about migraines, nausea and vomiting with your cycle. There is nothing normal about pain during sex. There is nothing normal about infertility.

These symptoms are sadly common now, but they are certainly not normal.
The wonderful news is that funding is now starting to come through for endometriosis research. The other good news is that we now have more health care practitioners who are understanding endo more deeply and can implement interventions more quickly. They are trying to close the gap between ignorance and disease. These health-care practitioners are from various medical disciplines as well as health-care modalities. They include gynecologists, urologists, specialist surgeons, acupuncturists, pain psychologists, pelvic physiotherapists, naturopaths, nutritionists, yoga practitioners and holistic wellness coaches. To fight this all-encompassing condition, recovery has to be all-encompassing as well. There is so much hope for a better future.

Because possessing female reproductive organs should not condemn you to a life-time of pain.
Even though it is the female race who go through the painful experience of childbirth, pain should not be synonymous with being female.

Communicate and Validate One of the deepest needs of someone suffering from endometriosis is the need to be understood and respected. But many sufferers have never really told their endo-story before or have shared what they are experiencing on a consistent basis with those near and dear to them.

Jo Lincolne is a certified holistic wellness coach for endometriosis and has been practicing for over 10 years. As an Endometriosis Wellness Specialist and educator, Jo provides natural endometriosis support and education to help women heal and manage their endo-symptoms.

You can connect with Jo on FB and IG @jolincolnewellness as she shares current research, natural therapies, tips and practices for living and healing with endometriosis. You can also find her on her website jolincolnewellness.com which is a hub of endo-info, and she’s recently been interviewed in a 2-part series on the podcast ‘In Her Flow’.

Penned by Jo Lincolne As a woman with endo herself, Jo set out to heal herself naturally when she was diagnosed, as there were not many answers that doctors were able to give her or effective medical treatments. This has led her to right where she is today – helping women holistically find relief, hope, vitality and the power to control their health again.

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