14 OPS – BUT THERE’S NO CURE FOR CONDITION
AWOMAN has opened up about the crippling pain she has endured due to endometriosis. Anna Cooper from Newbridge, Wrexham, knew at 11 years old that something wasn’t right with her menstrual health, but wasn’t diagnosed with the condition until she was 18.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes.
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 – causing chronic and sometimes debilitating pain as well as affecting fertility and other parts of the body such as the bowel or bladder.
The condition affects one in 10 women in the UK and at the moment there is no cure for it.
The Welsh Government has just announced that specialist endometriosis nurses have been appointed in each health board in Wales to improve services for the chronic condition. But Anna believes that more could be done and is campaigning for change to help others in her situation.
By last March Anna had already undergone 12 operations in the last nine years. The pain was so powerful at times that Anna would manage it with slow-release morphine or liquid morphine. The simplest of tasks were hard to deal with due to fatigue.
As a result Anna had to undergo two additional major surgeries including a hysterectomy.
According to Anna the surgical menopause has had a knock-on effect on her body such as her bones and joints. She regularly has B12 injections and takes folic acid due to folate deficiency anaemia.
But the effects of endometriosis has also had an impact on her emotionally, as well as her day-to-day life. Anna used to work as a full-time Boots Opticians optical dispenser. Now she works one day a week due to the subsequent pain and fatigue of her condition.
She said: “I have found it incredibly hard. I’ve had 14 surgeries and it’s constant. People assume that once you’ve had a hysterectomy you’re cured of endometriosis because you’ve had your womb removed. But that’s not the truth – there’s no cure for it and once it’s spread out of the womb it starts to grow without it. It doesn’t need the womb or the ovaries to stimulate it.
“That kind of mentality where people assume that you are better; that everything is better, when it’s not – you’re 28, you’re menopausal and still in fear that the disease will grow back. With me the damage is done now – that’s the problem. When they got to me when I was 18 I had to have a resection with my bowel – the damage to my bowel had been done years ago. They told me had they caught it sooner I might not be in the position that I am now. And that’s hard to deal with – there’s massive frustration and sometimes anger. You think: ‘Why was I dismissed for so long?’”
Alongside her friend Gabriella, who she met on Instagram and has also suffered with endometriosis, the two have launched a project called the Menstrual Health Project.
With the aid of BeYou Together Ltd, the project has created an endometriosis diagnostic toolkit that aims to help women navigate their menstrual health which they hope will be available in GP surgeries, schools and sexual health clinics.
The kit provides useful tools such as period pain relief patches. It also provides information on endometriosis – what symptoms to look out for, where to access the correct information on endometriosis and needing a referral, and essentially eliminating the stigma surrounding menstrual health.
Anna said: “Me and Gabriella are both endometriosis sufferers and we both were dismissed. I think we’ve learnt from Instagram, through supporting other women, and raising awareness, that women’s health is always at the bottom of the pile.
“To this day some GPs don’t know what to do or don’t recognise the symptoms. We have worked with some medical professions to make sure this project is within the guidelines of the NHS and it follows that protocol. We launched this for Endometriosis Awareness Month and we have had a huge feedback from it that has been so helpful.
“We are hoping to then launch packs for schools for girls that might be suffering with their periods and they can access these packs with information on what’s right and wrong, what’s normal and what’s not, the different period products – things that they can try out and see what works for them.”
Despite her struggles with her health, Anna is determined to keep positive and raise awareness of the condition as much as she can – especially for her five-year-old daughter, Grace, who she describes as her “driving force”.
In response the Welsh Government has said that “women’s wellbeing is a priority” for them. A spokesman said: “We will soon publish our plans which will set out how we expect the Welsh NHS to support women to access the health services they need.
“We have also set up the Women’s Health Implementation Group (WHIG), which recently supported the recruitment of specialist endometriosis nurses in each health board to develop new ways of working to reduce diagnostic times across Wales. WHIG is also working with GPs and primary care teams to improve awareness of the symptoms and support available.”