Many harmful Endometriosis myths are perpetuated, even with a raised profile of the disease thanks to years of advocacy and research advances. This blog post covers the main myths about endometriosis in order to further raise awareness in the community worldwide.
This month is Endometriosis Awareness Month and today is International Women's Day. I've been reflecting on these two interlinked events as I feel both are important in illustrating the traditional gender inequality that exists in the medical research field, in healthcare provision and also in other areas of life, such as employment.
Endometriosis and other conditions experienced by women have traditionally been poorly funded for medical research even though women make up around 50% of the population. Thankfully, with the advocacy of individuals and groups - including some wonderful male experts/allies - awareness of Endometriosis and funding for medical research is improving.
What is Endometriosis?
If you don't know what Endometriosis is, it's a chronic inflammatory condition involving immune dysregulation and hormonal influences. The condition results in tissue similar to the uterus lining (endometrium) growing outside of the uterus. In some cases, the symptoms are limited to the reproductive system, but in other cases, the effects are felt in many different body systems because the rogue endometrial tissue is often found elsewhere in the body. It’s believed that the condition affects approximately 1 in 9 women, although the true number may be higher.
Severe period pain, other types of pain, fatigue and digestive symptoms are the more common symptoms of Endometriosis. It can also cause infertility. The exact causes are still being researched and there is currently no cure. On a brighter note, Endometriosis can often be successfully managed in different ways, whether with medications, nutrition, herbal medicine and/or lifestyle enhancements.
The effect on women’s ability to be employed
The stigma around conditions such as Endometriosis also affects the ability of women to participate in different areas of society including paid employment. Many women have no choice but to either limit themselves to part time work or find themselves on disability payments because the condition has such a drastic impact on their day to day functioning. Endometriosis often presents with symptoms throughout the entire menstrual cycle - the symptoms are often not limited to the menstrual period itself.
I personally would like to see more support for women when it comes to navigating employment with a chronic illness. Not just in the case of Endometriosis, but for any chronic condition. It must become law for people not to be discriminated against for needing regular time off (or the ability to work from home) due to these conditions. Women with chronic illness become invisible and voiceless because of the very real discrimination and lack of support that occurs. People with chronic illness (women and men) should not feel ashamed over these conditions which are very challenging to treat and manage effectively.
Here are the major myths about Endometriosis
Hysterectomy is a cure
Hysterectomy can help some women with endometriosis - especially where symptoms are worse during menstruation - but since it does not address the root cause/s and only addresses endometriosis in that body region, the disease is still present and many women still experience various symptoms after hysterectomy.
Women with Endometriosis are infertile
Approximately one third of women with Endometriosis experience fertility issues, so this is certainly far from a majority. However, it is believed that up to half of infertile women have Endometriosis and it does often play a role in difficulties falling pregnant and maintaining pregnancy. There are treatment options for any woman with endometriosis that does experience infertility. So, there is hope.
Endometriosis can be wholly treated with the oral contraceptive pill or an IUD
Endometriosis is primarily an inflammatory condition believed to originate from immune dysfunction. The oral contraceptive pill suppresses ovulation and can also thin out the uterine lining, as does the Mirena IUD. So, these treatments may reduce symptoms that relate specifically to menstruation (eg. pain, heavy bleeding), but cannot address the many other symptoms often present with Endometriosis such as IBS or fatigue.
Having children can improve the symptoms
This is one of those myths that seems to have been perpetuated by out of touch male doctors and seems to have been largely unchallenged over the years. Pregnancy is an immune event - as such, a woman’s experience of Endometriosis may change during and after pregnancy since Endometriosis is largely an immune-mediated condition. Also, a woman’s period is absent during and for a time after pregnancy, which may spare her some symptoms temporarily. There’s no evidence that pregnancy reduces the lesions or improves pain signalling, so usually women who had Endometriosis symptoms before pregnancy will have them again once regular menstruation resumes.
Endometriosis only affects the reproductive system
Endometriosis can affect every body system because the rogue tissue can grow anywhere, although it’s usually found in the pelvic cavity. Why the tissue can grow anywhere - even the brain, bladder and lungs in some cases - is one of the key questions that researchers are seeking to answer.
Symptoms only occur during menstruation
Since endometriosis is a condition that can affect every body system, the symptoms can appear at any time of the menstrual cycle. For some women, their symptoms occur only with menstruation or ovulation but for others, their symptoms are wide-ranging and not limited to these key points of the menstrual cycle.
Excision or laser surgery for endometriosis cures the condition
During a laparoscopic procedure, endometrial lesions can be excised (cut) or lasered off. This may give the patient some relief, but this is often temporary as the surgery does not address the root cause/s driving the disease. The lesions usually grow back after a period of time. While there’s no cure, the symptoms of the disease can be greatly improved with nutrition and naturopathic treatment.
Ultrasound is sufficient for diagnosis
Since endometriosis can be located in various body systems, an ultrasound may only detect endometriosis in some cases. Additionally, an ultrasound can detect deep infiltrating endometriosis (DIE), but not superficial lesions. Superficial lesions can produce significant amounts of inflammation and therefore create worse symptoms than deep infiltrating endometriosis. So, an ultrasound may be very misleading, producing a false negative if its limitations are not kept in mind.
A laparoscopic procedure with biopsy is still the the gold-standard for endometriosis diagnosis.
Stage 4 endometriosis is worse than Stage 1
Severity of symptoms usually doesn’t relate to the stage of endometriosis that the individual has. This is because the classification system is based on visual cues - that is, the number of lesions and the depth of infiltration. Visual cues don’t reflect the level of inflammation or immune dysfunction an individual has, so are therefore not the whole story when it comes to Endometriosis severity.
Endometriosis only affects older women or overweight women
Endometriosis affects women of all ages and sizes. It may be worse in some older women simply because the lesions have become larger, but young women are often greatly affected too, and endometriosis has been reported in girls as young as 11. For many reasons, an Endometriosis diagnosis often occurs some years after a woman has experienced symptoms - this can lead to a misleading idea that it mainly affects older women.
In regards to weight, there is very interesting research that highlights a complicated relationship between BMI and risk of endometriosis and also endometriosis severity. A study conducted by the Royal Women’s Hospital and University of Melbourne - with 500 women, the largest study of its kind - looked at the relationship between BMI and endometriosis. Importantly, only women who had been diagnosed by the gold standard surgery were included. The results indicate that the rate of endometriosis is actually much lower in obese women, but obese women were more likely to experience more severe forms of the disease.
Endometriosis is all about estrogen
While there is certainly a role for oestrogen in endometriosis - for example, the lesions themselves produce estrogen - endometriosis is also a disease of immune dysfunction with strong links to an unhealthy gut microbiome. At present, it’s still debated whether endometriosis is an autoimmune condition or not - it seems to be forgotten that autoimmunity is only one form of immune dysfunction. Another potential factor being investigated is nickel allergy. So, as you can see, the idea that endometriosis is only about estrogen is highly reductive.
I hope you’ve found this a helpful, enlightening article about endometriosis myths.
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