The Impact of Endometriosis: The invisible pain that affects 1 in 10 women

March is National Endometriosis Awareness Month; and as a business which champions female equality, we felt it was only right to talk about it.

Endometriosis is a painful condition which can affect women of any age and happens when tissue similar to the lining of the womb grows in other places, such as the ovaries, fallopian tubes and sometimes even the bladder and intestines. 

This tissue reacts to the menstrual cycle each month and causes bleeding; however, this blood has no way of leaving the body. This in turn can trigger physical symptoms like crippling pelvic pain and heavy periods.

(image via adobe)

Awareness of endometriosis has seen an increase in recent years and yet the condition is still often misunderstood.

In the UK it takes an average of 7.5 years to receive a diagnosis for endometriosis. This is despite it being the second most common gynaecological condition in the UK which affects 1 in 10 women. 

These statistics are shocking and speak volumes about the difficulty women still have being heard and listened to, even when it comes to their health.

Frustrated? Us too. Let's explore.


A Combined Treatment Approach

There is currently no cure for endometriosis, however, there are many treatments available and even things you can do yourself which may ease symptoms.

We recommend checking out this guide by Wellbeing of Women to learn more about the endometriosis treatments available and self-help techniques you can try.

In April 2022, endometriosis was highlighted in the media by a documentary on Channel 5, following the journey of a group of women with endometriosis to raise awareness for the hidden condition.

To help us understand how endometriosis can be treated, the documentary follows Helen who was diagnosed with endometriosis ten years after her first GP visit. She describes experiencing shooting pains and burning herself with a hot water bottle to take her mind off the pain before she managed to receive any treatment.

Helen has now undergone surgery to remove some of the scar tissue but explains that a combined treatment approach is key to keeping her endometriosis under control. This includes visiting a pelvic floor physiotherapist to address her tight abdominal muscles and help soothe her pelvic pain.

It wasn't until 2017 that the National Institute for Health and Care Excellence in England released its first ever guidance on endometriosis.

Interestingly this guidance advised doctors to listen to women and take severe period pain seriously, acknowledging the difficulties a delayed diagnosis can cause to a woman's personal life and career.

Discussing the new guidelines Emma Cox, chief executive of Endometriosis UK commented:

 “During that time women are in pain and suffering, the disease can get worse and there are real mental health issues. If you are told for seven-and-a-half years that you are just making it up and it is in your head, then it has a massive impact on your health and wellbeing,” 

Cox highlights the consequences of dismissing female pain and the devastating effects a delayed diagnosis can have on a woman's life, both physically and emotionally.

Endometriosis is complex and we hope that research will continue to evolve, but for now, trusting your body and pursuing a treatment that is right for you can make a huge difference.


The Gender Data Gap

Endometriosis can have a big impact on your quality of life, particularly if it is left untreated, and patients often report depression, fatigue and painful sex.

There are lots of things to consider when it comes to women's health, but one thing that stood out to our team (both through research and personal experiences) was the impact of health disparities.

Health disparities are the difference in health outcomes or access to healthcare across different groups of people. In 2021, a report was published by UK Parliament which showed the UK has been found to have the largest female health gap in the G20, in addition to the 12th largest globally.

Evidence in the report also suggests there is less knowledge surrounding conditions which only affect women, directly contributing to the quality of care women receive when seeking treatment.

Looking at endometriosis more specifically, the report showed that 40% of women needed 10 or more GP appointments before being referred to a specialist, showing the barriers women face when taking their first steps.

Taking action into their own hands, Endometriosis UK created a fantastic resource which is designed to equip women with the confidence and knowledge to advocate for themselves and get the most from their doctor appointments.

Looking at the global impact of gender biases, award-winning feminist campaigner Caroline Criado Perez's book ‘Invisible Women’, considers the impact the gender data gap has on all aspects of our society. 

Introducing the default male bias Perez shares:

“Seeing men as the human default is fundamental to the structure of human society. It’s an old habit and it runs deep - as deep as theories of human evolution itself.”

This shows us the work which still needs to be done to reverse this gender bias and the extent to which it affects women's daily lives. ‘Invisible Women’ is powerful because it uses data to expose the inequality that is still so ingrained in today's world, provoking further conversation and hopefully driving change.

We all deserve access to healthcare that is compassionate and being aware of these biases can help us take control and move forward. Knowing what we are entitled to is important and helps us make informed choices and look after our bodies.

No one knows your body better than you do.


Taking action and remaining hopeful

We recognize there is still a long way to go but we are immensely grateful for charities like Endometriosis UK and Wellbeing of Women who are proactively raising awareness for women's health conditions and offering support and guidance on endometriosis, particularly in areas where our health system is lacking.

Remembering you are not alone is important and joining a support group or confiding in a close friend can be life changing. Social media can also be a great tool if you’re suffering from chronic pain, and following hashtags like #endometriosisawareness and #endowarrior can help provide a sense of solidarity and comfort if you’re feeling isolated.

We would also recommend reading our recent editorial ‘Intimacy Explored: Painful sex and the female body’ which explores how we can find pleasure and reimagine intimacy to suit our own bodies when we are suffering with pelvic pain.

Ultimately, anything you can do this Endometriosis Awareness Month and beyond, to spread awareness of the disease is important. Endometriosis UK has an amazing page to help get ideas flowing of how you can take action in your own lives, from writing to your local MP to hosting a tea for endo. 

All of this helps drive change, offering hope for the future of women's health.