Raising Awareness of Endometriosis

March marked Endometriosis Awareness Month . With this in mind, we caught up with Alex Hazlehurst who suffers with endometriosis and has had it her whole life. The symptoms started at the age of 14 but it took until the age of 26 to be diagnosed.

Unfortunately Alex's story is not exceptional, the average wait in England for diagnosis is 7 years and a staggering 10 years in Wales.

What is endometriosis?

Endometriosis or endo as it’s often referred to is a chronic disease where tissue that is similar (not the same) as the endometrium (lining of the uterus), grows outside of the uterus. It causes lesions and scar tissue to build up that sticks organs together. The tissue responds to hormones in the same way as the endometrium and bleeds and breaks down each month. However this blood has nowhere to go so causes pain and inflammation in the body. The build of this sticky scar tissue can cause damage to organs and leave women infertile and or living with secondary organ damage. Endometriosis affects more than 1 in 10 women worldwide.

What does it feel like living with endometriosis?

Living with endometriosis for many women can be a very isolating experience. It takes years to get diagnosed , women are often told by GPs that the pain they suffer is normal, imagined, exaggerated or is often misdiagnosed as IBS before being referred to a specialist for diagnosis. Access to treatment often involves lengthy waiting times even pre Covid, so many women suffer alone in silence. Workplaces are often unaware and uneducated as to how endometriosis can be debilitating for some women and how it can affect a women’s health leading to difficulties in the workplace . Many people dismiss endo as bad periods however this is another example of misunderstanding and lack of education. Living with any chronic pain condition is difficult but endo patients can face huge emotional challenges due to the disease being the leading cause of infertility in women. Currently there is no mental health support offered on the NHS specifically to deal with this.

How do you treat endometriosis and is there a cure?

Currently there is no known cure for endometriosis. The gold standard of treatment is surgical excision of the disease. However many women endure years of hormone based treatments like the contraceptive pill to mask the symptoms and control periods. For some women this is enough to control symptoms however it is not an effective treatment of the disease itself. There is a new drug that is the first non-hormonebased treatment that is yet to be approved for endometriosis treatment. studies are showing promising results and it is the first new development in over 40 years giving new hope to patients.

There is no cure for endometriosis and much more awareness and research is needed.

There is no way to prevent endometriosis. As scientists do not yet know the cause there is no known way to prevent the disease. Some studies suggest it could be genetic but further research is required.

What improvements would you like to see for the care and diagnosis?

A greater understanding of the disease at a primary care level would help see that women are not enduring years of suffering before gaining a diagnosis and thus would lead to quicker access to specialist care. More funding needs to go into research as women’s health is often comparatively underfunded. This disease affects as many women as asthma and diabetes, yet little has changed in terms of research and treatment options available to them for over 50 years. Here in Wales there are currently only 2 specialist consultant gynaecologists . It is vital that funding is set aside and more specialists are recruited to Wales so that women here aren’t forced to face either years waiting for specialist treatment or pay for private surgery.

For further information visit: www.endometriosis-uk.org/ www.nhs.uk/conditions/ endometriosis/

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