A brave young mum who faced a seven-year battle to be diagnosed with endometriosis has opened up about her struggles in a bid to raise awareness of the condition.
Anna Cooper began suffering from extremely painful periods and heavy bleeding when she was 11-years-old but her concerns were initially dismissed.
She was forced to undergo multiple operations in a bid to find out what was causing her excruciating pain and chronic fatigue, Wales Online reports.
An emergency appendix removal surgery finally shed light on the condition when medics discovered endometriosis cells on her organs.
Anna, now a mum-of-one, was told to ‘get pregnant or have a hysterectomy’ when she was just 18 before switching to a team of specialists in Liverpool who better understood the condition.
Anna, from Wrexham in Wales, now faces having her reproductive organs removed after a difficult pregnancy with her daughter Grace but is determined to stay positive in a bid to help other women.
She said: “It was my 11th birthday when I started my period and my mum hadn’t prepared me for it, I didn’t know what was going on.
“I struggled with really painful, really heavy, erratic periods. It wouldn’t be like a five or seven day cycle, I’d be bleeding for like two months at a time.
“I’d be back and forth to the doctors and a lot of the time they’d say ‘It’s growing pains, you’re growing up, it’s just part of being a woman’.
“I was told so many times, especially in school and things like that, it’s just your period, you need to get on with it.
“I missed so much school because of hospital appointments and being generally unwell. It really isolates you as a teenager.
“I had to grow up very quickly because no-one else seemed to understand.”
When she was 15, Anna was referred to a paediatrician after finding a swelling under her left rib which medics initially believed was a cyst on her ovary following exploratory surgery.
After being rushed in to have her appendix removed, doctors were shocked to discover endometriosis cells on the organ.
Young Anna was forced to seek private healthcare through her dad’s insurance after her original doctor refused to agree with the findings before undergoing more surgery.
She continued: “He took me into surgery and I was riddled with it. He had to take me out of surgery and take me back in two weeks later, it took him five hours to remove it all.”
In the weeks before her 18th birthday, Anna was finally diagnosed with endometriosis.
While it was an important step, diagnosis is only half the solution for a condition for which there is currently no cure.
Describing that time, Anna said: “I remember my 18th birthday party. I was at home, it was a house party and I had bandages all over my stomach because I’d had surgery.
“Everyone was just having the time of their life because they were 18 and carefree and I just had so much more to worry about.
“I couldn’t go to uni because I didn’t want to live away from home because of the pain. I was in hospital every week having various check-ups and investigations.”
Soon after her diagnosis, Anna had endometriosis removed from her ovaries, fallopian tubes, bladder and her bowel.
Before changing to specialists in Liverpool she was also presented with two terrifying options at only 18 years old: either get pregnant or have a hysterectomy.
Anna said: “I was 18 when they gave me that [option]. If I’d have listened to that I wouldn’t have had my daughter.”
Despite her struggles with her health, Anna is determined to keep positive.
After meeting her now husband Scott at 19-years-old she now has a four-year-old daughter Grace, discovering she was pregnant two weeks before she was due to start IVF treatment.
But with a chronic illness such as Anna’s there are still issues every day that she must overcome – including last year when she had a permanent ileostomy bag fitted.
In the near future, Anna will have a total hysterectomy, following a difficult pregnancy and the damage caused to her body after giving birth to Grace.
Anna said: “It’s constantly affecting every aspect of my life and it all stems from my period which is why I feel so strongly about it.
“I’m in pain every day, some days are better than others. I’ve had 12 surgeries for it now, one which has left me with a bag.
“I was told when Grace was 18-months-old not to have any more children as it was detrimental to my health.
“I had always wanted to have two children and I thought I had age on my side.
“I’d heard a lot of stories of women with endometriosis who had then gone on to have children but it’s not until you start trying that you really know.
“Because we’d had one we count ourselves as incredibly lucky. But it’s not easy.
“When people say ‘At least you’ve got one child’ it doesn’t make it any easier to digest because everyone has an idea in their head.”
As well as the more quantifiable effects of endometriosis, Anna is also keen to stress the symptoms that can’t be seen.
For her, the worst is a constant fatigue, leaving her feeling guilty about not always being able to play with her daughter as she would like to.
She said: “Even though pain is my worst symptom on bad days, pain is something I can kind of deal with.
“I can still try and get around, I can still be there for Grace even though I’m in pain but fatigue is a killer because it will just hit you like a tonne of bricks.
“There’s nothing you can do but just try and sleep it off. You go to bed tired, you wake up tired and that’s what I really struggle with, there’s no respite from that.”
To manage endometriosis, most women will see their consultant regularly to see if their situation has worsened.
This is then followed by a range of options such as surgery to remove any growth or hormone treatment to put a patient into an artificial pregnancy state or an artificial menopausal state.
Every case is different, however, with some experiencing much more mild symptoms and minimal inflammation and scar tissue.
Anna said: “The biggest problem is that surgery helps remove the disease but unfortunately causes damage in the process because it cases more scar tissue and nerve damage.
“You are constantly battling with pain from the disease and pain from the treatment.
“With cancer you have PET scans to be able to see where it’s grown back, there isn’t anything like that for endometriosis, you have to just have surgery to see if it’s grown back or not. I try and not let it, but it can kind of consume you when you think about it.”
By speaking so candidly about her experiences – something she says she is only able to do thanks to the support of her family – Anna hopes to reassure and support others struggling with endometriosis.
She is now campaigning for menstrual wellbeing to become a mandatory part of the curriculum in Welsh schools to teach pupils not only what periods are but signs to look out for if something isn’t right.
Anna said: “Menstrual wellbeing will teach girls about these diseases not to scare them but to make them aware that if they or their friends or their sisters have something not quite right that they can help them be seen and have that support.
“I don’t want a young girl to be in my position but then I’ve found there are much worse positions to be in as well.
“There are girls out there who have taken seven, eight, nine years to be diagnosed who feel they haven’t been listened to or heard just because they think it’s just periods.
“My consultant who diagnosed me said that a painful period that has you in bed crippled over in agony, that is not normal.
“But a lot of girls, if that’s all they’ve ever known, think that’s normal.
“[Endometriosis] is as common as diabetes. We hear so much about diabetes, which is amazing for that condition, but then there are other conditions that are never talked about because they’re a women-only condition.”
Endometriosis is a condition where cells similar to the ones in the lining of the womb 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, however, 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.