If you suffer with endometriosis, or you’re struggling to get a diagnosis, then you’ll know how debilitating the condition can be
write this as someone who suffers with endometriosis, so to all my Endo Sisters, I hear you.
I hear you each month as I’m curled up on the floor, unable to move. I hear you as I have to cancel social engagements, morning runs and work commitments and have to allow loved ones to look on as I suffer, knowing they’re powerless to help.
But I consider myself fortunate, as I’m a freelancer working from home
When I was an employee in an office where crawling under my desk wasn’t an acceptable way of dealing with it (or anything else) it was even worse.
So to my Endo Sisters who have to struggle through the working day in full view, I hear you even louder.
Despite endometriosis being common (it affects 10% of women in the UK and 176 million women worldwide), it takes an average of seven and a half years to get a diagnosis!
It took me around five years. The only way to get a definitive diagnosis is to have a surgical procedure called a laparoscopy. This is keyhole surgery to take a look at the inside of your abdomen and pelvic cavity to see what’s going on in there.
Endometriosis causes the lining of the womb to migrate elsewhere within the pelvic cavity. Each month, or whenever we menstruate, this tissue bleeds like it would inside the womb. But unlike when it bleeds from the womb, this blood has nowhere to go.
So it hangs around and builds up each month, eventually forming scar tissue, lesions and inflammation
This can become so bad, that it fuses the organs of the pelvis together, so you could end up with your bowel fused to your womb.
No scan will show this up definitively, hence why a surgical procedure is necessary. If endometriosis is discovered during this procedure, as in my case, your surgeon will more than likely use laser techniques to surgically remove any scarring and lesions.
If it’s severe, they may need to perform surgery at a different time to separate any fused organs. However, this isn’t the end. Because until we reach the menopause and no longer menstruate, each month, the scarring, lesions and fusing will continue. And so will the intense pain.
The reason it takes so long to get a diagnosis of this debilitating condition is an old fashioned assumption that ‘women’s problems’ are something we just need to put up with.
Often, GPs are unaware of what ‘normal’ period pain feels like and dismiss women with painful periods. A friend of mine, when we were 19 and at university, was told by her GP to “go off and get pregnant to sort your period pain, or I can organise a hysterectomy”. Yes, I know, shocking, right? She did neither, got a first class honours degree, then years later, she was diagnosed with, you guessed it, endometriosis.
In fact, 42% of women in one poll said that their women’s symptoms were dismissed and felt that they weren’t treated with dignity or respect.
Certainly in my case, I was referred to a specialist by a sympathetic (male) GP, but my specialist, a female, dismissed my symptoms as bad periods and offered to put me on the pill. This was despite the fact she knew I was approaching 40 and had recently had two failed rounds of IVF.
It was only me having done my research that meant I knew I had to push for a laparoscopy, which she reluctantly agreed to. Her words after surgery? “You were right, you do have a bad case of endometriosis.”
It’s clear, we need a solution to this problem
So it’s with joy that I read that the All Party Parliamentary Group (APPG) on Endometriosis are launching an inquiry into how care and support can be improved to better meet our needs.
And they need us to help. You can take part in a survey to help give a better understanding of the impact of endometriosis to help improve things, hopefully significantly. It takes around 15-20 minutes to complete. I’m about to take part (I wanted to write this first as I was excited to share the news).
The importance of sharing your experiences of endometriosis
Sir David Amess MP, Chair of the APPG on Endometriosis said, “The APPG is delighted to give women with endometriosis and healthcare experts the opportunity to share their first-hand experiences of endometriosis so we can produce a set of recommendations to the Government. The APPG is committed to raising awareness of the condition and representing the views of those affected and we urge as many people to come forward as possible to respond to the inquiry.”
Emma Cox, CEO of Endometriosis UK, added: “This inquiry is a welcome opportunity for the Government and NHS to get real about the impact of endometriosis on individuals and society, and to take it seriously. The Inquiry provides the Government with the opportunity to deliver recommendations for much needed improvements for the diagnosis, treatment and support of 1.5 million women (in the UK) living with the disease – and reduce the suffering of future generations.”
“We urge all people with endometriosis to take part in the survey. This is a huge opportunity to push for real change for people affected by endometriosis and shape the way care is delivered in the future.”
So, Endo Sisters, you know what to do. You can fill in the survey here.