'I thought I was going to die': Women recall their experience of endometriosis

  • ITV Channel's Alexandra Spiceley hears from women who describe what it is like to live with the chronic condition.

Women in Jersey are calling for more understanding of the chronic condition endometriosis.

A condition they describe as debilitating, life-changing and isolating.

Endometriosis can affect women and teenagers of any age and is caused by tissue similar to the lining of the womb growing in other parts of the body, like the ovaries and fallopian tubes.

Arianne Watts describes the pain as "excruciating" Credit: ITV Channel

The condition can cause chronic fatigue, unbearable pain likened to childbirth and heavy bleeding.

There is no cure and instead, women can face multiple surgeries to remove the tissues or in some cases even a hysterectomy to ease the pain.It is estimated that one in 10 women have endometriosis and ITV Channel has met with 8 women who shared their experiences.

Arianne Watts says the pain is unbearable: "It's excruciating and disruptive, it feels like there is no way of making it better."

Rebecca Stievenard recalls the time she was "paralysed in bed with pain"

Like Ariane, Rebecca Stievenard describes the level of pain she experiences: "The symptoms progressed and about three years ago I started getting incredible back pain and pelvic pain to the point where I was almost paralysed in bed, screaming and crying because I thought I was going to die honestly, it was horrible.

"Since I was 15 I have been seeing different GPs and you know you haven't been taken seriously, just been told to exercise more or eat healthily or all the other things they tell you to do or go on this pill or go on that pill. That went on for 20 years."

Amy Mcalister says despite her surgeries, its a condition "you're going to be dealing with forever."

Amy Mcalister explains despite surgery the condition will forever interfere with her life: "I had my first operation and diagnosis when I was about 20. So I have been having laparoscopies since then and it continues through my life.

"It's knowing that there isn't the end to the problem, chances are you're going to be having surgery again, you're going to be dealing with the bleeding, the bruising and taking medication- it is not I have had the surgery, here we go, we can get on with our lives.

"It is something we are going to be dealing with forever."

Joanna Marshall explains how she was told she had to have hysterectomy "because there was no other way of controlling it" Credit: ITV Channel

Joanna Marshall says that she was left with no other option but to have a hysterectomy, "there's no other way of controlling it because I'd had operations, I'd had abdominal surgery, I'd had lasers, I'd had incisions, I'd had three surgeries and they couldn't operate anymore because of the amount of scar tissue."

Abi Lappage has the condition and says it has "ruined my life"

Abi Lappage voices the condition has destroyed her life: "I went into medical menopause and so that's where they inject you with a little grain of rice if you like, into your stomach and that's when I realised actually how much pain I've been in.

"That was the first time in my life I can remember not being pain-free. It has ruined my life."

Honor Butel says she fears for her future as the condition affects fertility.

Honor Butel fears for her future as she hopes to be a mother, "I find it scary about the future because I know people with endometriosis can be infertile.

"You have a lot less chance of getting pregnant and do want a family eventually so it's just not knowing if I will be able to one. How do I explain that to someone?"

Kelly Salsac explains how has stage four of the condition

Kelly Salsac explains how she was diagnosed in later in life: "I found out at 37, I am 40 now. It was very difficult with fertility so I've been trying to do egg retrieval which has been challenging. I have stage four endometriosis so they said it would be very difficult to concieve.

"I have under a six percent chance."

Kate Fry calls for more understanding and support for the conditon

Kate Gry says more support is needed for people with the condition: "We as employers, as colleagues, as family members, as friends it's everyone's responsibility to support that individual in that moment.

"There should be no condescending remarks about 'it's just a period', there should be no condescending remake like, 'have you taken paracetamol'.

"Trust the women who are experiencing it and listen to what they need and do it- that is what people need to understand about how debilitating this condition is."

They're now encouraging women who have either already been diagnosed or think they may have the disease to join an online community where they can share with each other.

Set up by Kate Fry the page which is called Endometriosis Jersey can be found here.