As March the 3rd is the beginning of World Endometriosis Awareness week, it is only fitting that I blog about Endometriosis or for those in the know, who unfortunately more than likely, like me have had it, “Endo Week”.
Within the context of DE&I we are all on a journey aren’t we to be more inclusive, to create more diverse and accessible working environments and cultures by removing barriers that prevent individuals from showing up and being their true authentic selves in the workplace.
Much progress has been made around improving gender and ethnic diversity, which has led to a more progressive focus on disability. But if we are looking through the lens of underrepresentation, we are still not truly capturing all of the invisible underrepresented areas which are all too often overlooked. This is because it takes a much deeper dive to pull out these protected characteristics and requires a huge amount of trust and psychological safety for individuals to disclose their circumstances. And chief among them is Neurodiversity, the Menopause, Periods and my old nemesis Endo.
Endometriosis is one of the most debilitating and disabling diseases. According to Endometriosis UK, “around 1.5 million women and those assigned female at birth are currently living with the condition, regardless of race or ethnicity. Endometriosis can affect you from puberty to menopause”. Globally Endometriosis affects 176 million women and is the second most common gynaecological condition in the UK.
Endometriosis doesn’t discriminate. It can affect any woman or those assigned females at birth from any ethnicity, any socio-economic background, any religion, any sexual orientation, any disability, any neurodivergent trait, the intersectionality of this disease is legion. And yet, we are all a bit embarrassed, scared maybe to talk about it. We don’t like talking about “women’s problems”.
So here I am! My inner Endo Warrior is showing up to put the record straight and raise a call to arms.
So, let’s bust some myth’s shall we?
Endometriosis is NOT simply painful periods, OK? It is NOT PMT or your partner just being moody! To refer back to Endometriosis UK again, “Endometriosis is the name given to the condition where cells similar to the ones in the lining of the uterus are found elsewhere in the body. “
“Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape”. The result is the most excruciating and debilitating pain, which can render you unable to walk, unable to eat or do anything productive because you are in this constant vacuum of hellish pain and you don’t know what to do with yourself. Please don’t offer us Feminax or Ibuprofen, you will find that even a cocktail of specifically prescribed painkillers, will not even touch the sides. The pain is still raging and you are desperate, depressed, exhausted and in my case, sometimes just wanting to completely give up on life, because at least then the pain would stop.
So, imagine being an Endo sufferer and trying to navigate the complexities of work. 25 years after my diagnosis I still have to arrange my work around my cycle! I make sure that I plan any major meetings, events outside of what I call the danger zone, as the pain can still be unbearable and I am in no fit state to physically be my full, authentic and professional self during these days. I am fortunate that I run my own business and have this freedom, but there are many sufferers who don’t have this luxury, who are fully employed and genuinely each month have a real struggle to show up and be productive. I remember when I was in my 20s working for one particular organisation, who constantly commented that each month I was “flakey and why do you keep needing to take time out? All women have periods, get on with it!”. It’s in those moments I wish men could have periods and gain a glimpse into our pain and realise what complete and utter Warriors Endo Sufferers are!
On average it takes 7.5 years before a competent physician gives a correct diagnosis of Endometriosis and in the meantime, you are patronisingly misdiagnosed for having painful periods. In my case, it took 2 years and my boyfriend, (now husband) shouting at the GP telling him how much pain I was constantly in and that this was not normal and eventually I was referred.
For many, the diagnosis is the start of a lifelong battle against the disease. A constant cycle of specialist check-ups, operations to remove the endometrial cells and scar tissues (2 in my case) and the longer-term symptoms can lead to infertility.
My specialist told me at the age of 30 that I would be unable to have children due to Endo and that my only option was IVF.
So, whilst in my 30s I had to not only hide my Endometriosis but also then hide my intense desire to have a family and start my IVF treatment, which if you know, requires an injection every day at the same time. So, I used to pop into the Ladies at lunch to inject, in the hope of getting pregnant.
I hope that any employer reading this can see the many invisible masks that sufferers have to wear to show up to work. The impact Endometriosis has on a sufferer’s mental wellbeing, physical health cannot be overstated. You are in a constant YoYo cycle of getting better and then dreading the dates when your period hits and your world starts to fall apart.
Employers need to set up Employee Resource Groups for Women’s Health. Vodafone is leading the way with their Hormonal Health Tool Kit which can be accessed here:
We need consistent care and treatment for all those who suffer and additional paid sick days for Endometriosis, Period or Menopause related symptoms as this will go a long way to providing trust and psychological safety for individuals to disclose their condition, be more open, which in turn will enable organisations to be more inclusive and offer the right support.
By putting Women’s (and those who assigned female at birth’s) hormonal health as a priority and starting the journey of understanding to be more inclusive, organisations can start to open the conversation around wider invisible protected characteristics as Endometriosis is indiscriminate and affects 1 in 10 women (or those who assigned female at birth) in the UK. If we can start to change the narrative and attitude around hormonal health and remove the stigma associated with such a disease and stand united to provide consistent treatment and care for individuals both in the workplace and in society at large, how much of an impact could this have on improving retention rates amongst women? Surely this would create greater equity for sufferers and give them greater parity in the workforce?
There is no quick fix here, but I would encourage everyone to have a greater awareness of the disease and offer anyone who discloses they are an Endo Warrior, support and understanding.
I have lived with Endo for 25 years and counting. I won the jackpot when I had twins 11 years ago through my 1st round of IVF, and as an Endo sufferer, I know how incredibly lucky I am, because I know a lot of people in my situation won’t be able to. But after 25 years, I am still standing and fighting. I am here to offer hope and solidarity to those who are diagnosed or undiagnosed. Endometriosis is a tough path to follow, but you don’t have to go it alone, I am here if you want to reach out and also, please check out the links to the resources below for additional help.
Sending all my fellow Warriors lots of love on Endometriosis Awareness Week xxx.
Endometriosis Fact sheet:
Vodafone Hormonal Health Tool Kit: