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Unveiling the underreported challenges of endometriosis

Navigating the silence

What is endometriosis?

Endometriosis is a chronic, neuro-inflammatory disease that affects 1 in 10 women in the UK. It is associated with debilitating chronic pelvic pain caused by tissue alike the lining of the womb (uterus) grows outside the uterus in other places like the ovaries and fallopian tubes. Endometriosis can affect any woman of reproductive age with a lifelong impact and can even lead to infertility.

During a normal menstrual cycle, the body undergoes monthly hormonal changes. Natural hormonal release causes the uterus lining to thicken in preparation of a fertilised egg. If there is no pregnancy, the uterus lining will break down and bleed and is then released from the body in the form of a period. In endometriosis, tissue alike to the uterus lining tissue behaves in the same way the uterus tissue behaves every month during the menstrual period: building up, breaking down then bleeding. Unlike the womb tissue broken down blood, this blood has no way to leave. The internal bleeding causes inflammation, debilitating pain, and scar tissue formation.

The symptoms are:

·        Painful, heavy, long periods

·        Infertility

·        Pain during or after sex

·        Painful bowel movements

·        Mood disorders like anxiety or depression

·        Chronic fatigue

·        Chronic pelvic pain

The challenges of endometriosis

Contrary to popular belief, period pain is not normal and can be experienced by those without endometriosis. The main point is if your period pain is interfering with your daily life, please consult your doctor.

There are many challenges behind endometriosis from the hard time a patient has to get a diagnosis, to the severely under-research of the condition.

Unfortunately, since endometriosis shares symptoms with many other conditions, diagnosis can be delayed and strenuous with recent research showing the average time to get a firm diagnosis being 7.5 years. A 2021 focus group in the Netherlands also shows the many issues with diagnosing endometriosis. Many of the focus group reported having a hard time finding a doctor who does not dismiss their concerns, undermine their pain, or dismiss them with paracetamol or ibuprofen which patients have reported as not strong for the pain endometriosis causes. Little research has been done on how effective paracetamol or ibuprofen is with endometriosis pain, but anecdotal evidence suggests it is not effective. Many of them reported their concerns being unheard, told to come back when they want to have a child and that their pain is normal, so they don’t need to see a doctor.

Research for endometriosis is heavily underfunded, women reproductive health disorders are generally underfunded. There is a huge gender disparity with disorders that mostly affect men being over-funded while disorders affecting mostly women being underfunded. A 2018 analysis by the UK Clinical Research Collaboration reported findings of only 2.1% of public funded medical research going towards childbirth and reproductive health which is down from 2.5% in 2014. A 16% funding decrease over a 4-year period.

The UK Research and Innovation (UKRI) has funded just over 40 endometriosis-related projects since 2003. However, diabetes which has the same incident rate but affecting both sexes instead of one like endometriosis has been funded 1891 projects in the same time. Just over 1m was funded to 6 of the endometriosis projects compared almost 250 diabetes projected with more than 10 receiving funding greater than £10 million.

In 2020 the UK’s All-Part Parliament Group (APPG) report on Endometriosis calls the attention of the cause of the disorder being unclear:

Historically, with limited investment in research into women’s health in general, there’s been so little investment in research into endometriosis that we don’t even know what causes it, and without knowing the cause, a cure cannot be found. - APPG

The APPG called for more investment into the cause, diagnosis, treatment, and management options of endometriosis.

Without investment in research, this condition will rob the next generation of women [of] the education, care, and support they deserve. – APPG

With more awareness being brought up by endometriosis charities, researchers and the affected group, the hard work and motivation may pay off soon.


Written by Blessing O.

Related article: Breakthrough in endometriosis treatment

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