For Endometriosis Awareness Month, Wellbeing of Women has asked three women to share their experiences of this debilitating chronic condition.
Endometriosis is a disease where tissue similar to the lining of the womb starts to grow in other places, and sheds in the same way as a period every month – but, unlike a period, it has nowhere to leave the body.
This can lead to crippling pain and internal organs fusing together.
It’s affected Zara, Kamini and Ashleigh differently – as parents, colleagues, friends and partners.
But, there’s one thing these women have in common: they all agree that the discovery of a new endometriosis cure would be life changing.
“I couldn’t hide the pain I was feeling” – Kamini Naik, 27
“I vividly remember passing out on the bus when I was a teenager.
“One moment I was drinking Ribena with my boyfriend at the time, then the other I woke up – Ribena was in my hair and he had tears in his eyes.
“When I asked what had happened, lots of friendly strangers told me I’d collapsed.
“That was school – bizarre events like that, indescribable pain, anxiety, paranoia and lethargy.
“It started when I was 14 from my first period – it was very heavy, it would physically leak out of my clothes and it was so painful I would just faint. I was just told I had really bad periods.
“I couldn’t hide the pain I was feeling and it would just come out – I’d cry, get upset, I’d express myself a lot more.
“It affected my relationships, and eventually I just learned to numb my emotions.
“It was ten years before I was diagnosed with endometriosis, by which point cells had travelled to outside my bladder and up to my kidney. I had to stay in hospital for three months.
“For me, treatment since then has been trial and error.
“I’ve tried so many pills, had an invasive laparoscopy and at one point I went on the patch which made me pretty much feel suicidal.
“A non-hormonal, non-invasive treatment would be a complete game changer. It would mean the world to me and change so many other lives too.
“When I think that other treatments could be available in the future, it gives me hope.”
Kamini Naik, 27, lives in South East London and is a technology product manager
“Treatment is a complete roulette” – Ashleigh Skinner, 29
“You fight for so long for a diagnosis that you’re elated when you get it. But after that, it’s pure grief – you realise you have a painful, life-long condition with no cure.
“The pain comes completely out of the blue. I can be doing something one moment and doubled over in pain the next and your concentration levels completely go – you can’t form sentences.
“I’ll even wake up in pain wondering why I’m so hot and sticky, and realise why.
“When I was diagnosed I was put on the coil, but it was one of the lowest points in my entire life. I was in so much pain I would get home from a normal day of work and lie in the fetal position.
“And when I was put on the pill, I lost a lot of weight and stopped experiencing any emotions.
“I’ve had one laparoscopy so far, but this definitely isn’t a cure either – to be honest it’s barely a valid treatment. Not only is it invasive but it’s a complete roulette as to whether it helps you or not.
“We need new ways to treat endometriosis, but we also need better ways of diagnosing it too.”
Ashleigh Skinner, 29, lives in South East London and works in fashion PR.
“I was on a morphine drip for months” – Zara Dawson, 36
“I spent months on a morphine drip when I was pregnant.
“My endometriosis glued my bowel to my pelvis so, even though I wasn’t producing new endometriosis tissue, the pain was horrific when I was growing.
“My three year old, Jaxson, was born in 2016. The pain didn’t stop me from wanting to try for another, but my body needed a break.
“I’ve had four laparoscopic surgeries, I’ve lost three babies to miscarriage and a termination for medical reasons, and IVF – which I would need – is an awful process in itself.
“I’ve almost coped with the pain for as long as I can.
“I would have a hysterectomy, but then it’s so final – and if I wanted to try for another baby in the future, the option has been taken from me.
“But a hysterectomy doesn’t always work, and I’ve tried absolutely everything else including contraceptive pills, a cocktail of painkillers and expensive alternative treatments.
“I would try anything to live a day pain free.
“Research into a new treatment or cure, such as the non-hormonal non-surgical treatment Wellbeing of Women has been funding research towards, would give me an absolute new lease of life.”
Zara Dawson, 36, lives in South East London and works in the film industry
Last year, research supported by Wellbeing of Women took us one step closer to finding a new non-hormonal treatment for the disease, the first new treatment in 40 years.
As a result of this breakthrough, Professor Horne has received new funding for a small phase two clinical trial testing non-hormonal drugs in women with endometriosis, taking us one step closer to a new non-hormonal non-surgical treatment.
Wellbeing of Women is one of few charities investing in vital research into endometriosis which could lead to new treatments.