My husband and I will be walking 1.5 million steps in March to raise awareness of Endometriosis. Yes, 1.5 Million steps. Each step we take will be taken mindfully to honour and salute the 1.5 million women in the UK (and millions more around the world) diagnosed with, and silently suffering from, Endometriosis..

All the money we raise will go to support Endometriosis UK, a charity that takes part in research, supports those affected by Endometriosis and works closely with Government Ministers to campaign for change, fairer treatment and eventually a cure.

Read on to learn more about Endometriosis and my own story with this chronic disease. 

What is Endometriosis?

For those not familiar with the disease, it is a very painful gynaecological disease that affects 1 in 10 women, and those assigned female at birth. 1.5 million women in the UK have a formal diagnosis, that's as many people affected by diabetes, yet less than 20% of the general public have heard of Endometriosis. Many GPs are also not that familiar with the symptoms or know how to treat it.

The disease (which is finally being referred to as an autoimmune disease) is where cells that act like the ones in the lining of the womb (uterus) grow elsewhere in the pelvis including around the ovaries and bowl. Sometimes they can grow on the diaphragm, lungs or heart. These tumour-like growths respond to hormones (specifically oestrogen) so as a woman's hormones change over the month, the cells likely grow and bleed internally with no place to go which leads to inflammation and scarring, damaging your organs and causing adhesions that stick different surfaces within the pelvis (or organs) together. 

It is a chronic and debilitating condition that can cause excruciatingly painful periods and pelvic pain outside of periods. It often leads to infertility and fatigue as well as bowel and bladder problems. The impact can be felt for life and there is no cure. 

There are surgeries available to remove the growths, hormones that chemically induce menopause and pain medication to ease the symptoms. 

What makes it worse is that it takes an average of 8 years to get a diagnosis of endometriosis in the UK. Many women suffer for even longer.

My story so far...

I am one of those women who has been suffering in silence since the age of 20. Yet, I only got my formal diagnosis last year. That's when all my future plans came to an abrupt halt.

My horrendous symptoms came and went like clockwork with my cycle, I could even predict when the pain would start, and yet every time I asked for help, I was told "painful periods are normal". I was also misdiagnosed or pumped with medication and antibiotics for things I didn't have (IBS and kidney infections to name a few).

Lockdown 2021 was my breaking point; the pain throughout every month was now so severe that I genuinely wanted to die. No amount of pain killers were helping and on multiple occasions I thought of ending my life to end the pain. Isolation of course wasn't helping. Luckily, due to the pain I didn’t have the strength to cry or even lift myself out of bed to do anything drastic.

So, I started reading about female health, hormones and endometriosis. I read a lot, and I went down rabbit holes with online communities which only infuriated me knowing there were thousands of women suffering the same symptoms and yet not recieving the help they deserve.  

My GP and Gyno were of no help, so I decided to hunt for an endometriosis specialist and travelled across the country to speak with them privately. Aside from the cancer scare and the 6 hour surgery, it was a relief to just be finally heard and told what I was experiencing was not normal and I shouldn't have to put up with it! I found out I have stage 4 endometriosis (meaning severe), with various growths, each the size of a "satsuma" (yep that's how the consultant described them) and adhesions around my organs. All of which could have been avoided if I was listened to years ago.

The surgery and the temporary hormone injection helped… a bit.

But endometriosis keeps growing, it keeps coming back. 

Why did it take over 15 years for me to get diagnosed?  

1. Because my own understanding of my body and awareness about this disease was lacking. 
2. Because I trusted the doctors who are also not well informed about endometriosis or its symptoms. 
3. Because, believe it or not, I was one of the 40% of women who was told on several occasions “it’s in your head” and “the pain will go away once you have a baby” …  Oh yes, this is how women are treated in our healthcare system.

My dream...

So here I am, for the first time ever, publicly talking about my symptoms and my chronic disease, trying to raise people’s awareness about it. Chances are, either you or a woman in your life is suffering in silence. 

I would like us to break the silence about this. 

I would like more young women to be educated about their bodies and their cycles. I would like fathers, mothers, brothers, sisters, friends and partners to feel comfortable talking about it. I would like employers to develop policies that can support their female workforce. I would like the government and GPs to take the symptoms seriously. I would like to see more funding given to the NHS to better treat sufferers, and more funding for research to help find a cure.

I am asking for your help

Please help me raise money for Endometriosis UK who I believe are making an impact. They are a passionate group of people who offer support to those affected by Endometriosis, they take part in research, they create links with specialist treatment centres, and they work closely with Government Ministers to campaign for change, fairer treatment and eventually a cure.

Every step I take in March will be taken mindfully to honour the 1.5m women diagnosed in the UK, and every penny you donate will go a long way to help them.

Let’s not suffer in silence.