A mum has spoken about how delays on waiting lists for a condition which leaves her in debilitating pain have had a huge effect on her health and personal life. Anna Cooper from Newbridge in Wrexham was diagnosed with endometriosis when she was 18 years old.
Now at the age of 29, following countless surgeries, stoma bags and a surgical menopause, she is still living with the chronic condition alongside the repercussions of it. Endometriosis is a condition that affect one in 10 women, but there is no cure for it.
It's a condition where tissue similar to the lining of the womb starts to grow in other parts of the body, such as the ovaries and fallopian tubes. While each month these cells in the womb build up, then break down and leave the body as a period, in other parts of the body it has no way of escaping. As a result, it causes chronic and sometimes debilitating pain, which can affect fertility and issues with the bowel and bladder.
Read more: 'I lived with a chronic undiagnosed condition for 15 years'
As there are no endometriosis specialists in north or mid Wales, many like Anna have to go to England to seek treatment. For the last eight to nine years, she has been referred to various hospitals in Liverpool.
The last time we spoke to Anna in March 2022, she had already undergone 14 operations in the last 10 years, including a hysterectomy which is a surgical procedure to remove the womb. She has also undergone surgical menopause, which has had a knock-on effect on her body, such as her bones and joints.
As a result, Anna has had to have additional surgeries. In June 2022, she had a surgery for a suprapubic catheter, which creates a connection between the urinary bladder and the skin used to drain urine. But the catheter retracted time and time again, which led to Anna's consultants in Liverpool referring her for a urostomy.
A urostomy is a surgery that allows urine to leave your body without going through your bladder. According to Anna, whether she decided to go through the NHS or through private health care, she will have to wait which has left her in "limbo".
"I'm incredibly grateful of the care I've received through various Liverpool hospitals," she told Wales Online. "But to get a urostomy surgery on the NHS, it would be a three-year wait. If I wait for those three years, they've told me it is highly likely I will end up with kidney failure.
"Waiting for three to four years seems barbaric. You ring to get an update and they'll tell you that you are not the only one waiting. I appreciate that but at the same time, that doesn't help you when you are in so much pain. It's not just my condition - it's across the board and I feel that it is so inhumane. My hands are tied, I keep asking for help, but their hands are tied as well. It's much higher up than them and it is a mess.
"But with my husband, I’ve decided to go privately which could see my surgery taking place at the end of January or the beginning of February. But because it is such a complex surgery and even though I'm paying privately, there is still no sign of it happening as it hasn't been booked yet.
"It's frustrating because you are in that limbo - you can't get it on the NHS as the waiting times are horrific, but once you're doing it privately, as it is such a complex surgery, they have so many people involved in it and you have to wait anyway. There is still no guarantee that it will be done in the time they say it will be done.
"It's frustrating and difficult because I'm a mum and it stops my life completely. For every day there is a delay in the waiting list, it’s another day I’m missing out on spending time with my daughter."
The effects of endometriosis has had an impact on Anna's day-to-day life. She used to work as a full-time Boots Opticians optical dispenser, but can no longer due to the subsequent pain and fatigue of her condition.
The simplest of tasks like sitting down and playing with her six-year-old daughter, Grace, can be hard to deal with. The pain Anna endures at times can be so powerful that she manages it with slow-release morphine.
She said: "My social life is non-existent - I don't have a social life. I'm incredibly lucky that my husband is so supportive, he's amazing. There are times that I can't do anything as simple as a school run, sometimes I can't take Grace or pick her up from her horse riding lessons, take her to school parties or get down and play with her on the floor.
"I feel like the delays are pushing those things I want to do - the normal things in life, away from me. I want to spend a day with my husband and daughter without any pain. And for my daughter, I think it's finally hitting home now that mummy is not getting better and this is my life.
"She'll ask me: 'why can't they help you?'. But she's gradually realising this isn't going to stop, it's all she's known. All I wanted to do was protect her and for a long time that's what I did, for example when I first got my stoma, I didn't want her to see because I was scared of her reaction. But then I thought, she's kind of going to have to know and realise that not everyone is normal.
"It has helped and made her a more compassionate and understanding person. It's difficult because all she wants is her mummy to be okay. I do fear for her future as well, you never know if she will get it too.
"I was the first in my family to be diagnosed with endometriosis and although it is unsure what causes it - whether it is weak immune system, environmental or hereditary, I have been told to keep an eye out on Grace for when she starts her period because I could start the hereditary line. I just pray it won't be the case for her. The only positive thing from that would be if she would have it then I would know all the signs and be able to help her."
Anna has found comfort and solace in the friends she has made on social media, who also live with endometriosis. Alongside her friend Gabriella, who she met on Instagram and also suffers from the chronic conditions, the two launched a project called the Menstrual Health Project last year.
With the aid of BeYou Together Ltd, the project creates an endometriosis diagnostic toolkit that aims to help individuals 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 a period pain relief patches. It also provides information on endometriosis - what symptoms to look out for, where to access the correct information on the condition and needing a referral, and essentially eliminating the stigma surrounding menstrual health.
By now, Anna and Gabriella are working on making the Menstrual Health Project an official charity. Anna feels that working on such a campaign is her way of "turning a negative into a positive" and be a voice for others suffering with the condition.
"My driving force is my daughter," Anna said. "Having a little girl, who is six now, potentially in a few years time she will have her first period. I don’t want her to go through the same thing I did.
"I want to save her the embarrassment of speaking about her period - it shouldn’t be like that, you should be freely able to talk about your period as part of your health. I have to be positive for her and in order to fight for change and hopefully make a difference.
"I don’t want her generation to suffer the way mine has. I was diagnosed 11 years ago, and sadly not much has changed since then. I feel like the more noise we make about it, people will listen and hopefully things will change."
In response to Anna's concerns about waiting lists, a spokesperson for NHS Cheshire and Merseyside said: "NHS teams are continuing to work hard to address the waiting list that has built up over the past three years. We’re making progress and have made significant improvements in our waiting list position.
"This progress is down to the phenomenal efforts of local NHS teams, however there is still a lot of work to do and recovery within some services may take longer.
"The number of people accessing operations in Cheshire and Merseyside was up by 7% in 2022 - with 19,000 more patients operated on compared to the previous 12 months."
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