A mother of two has opened up about the crippling pain she has endured due to endometriosis. Beth Hales from Cardiff lived with what she thought were painful periods for all her teenage and adult life, until she started trying for a baby.
Beth and her husband were faced with a three-year struggle while trying to get pregnant, which then led the couple to seek fertility investigations. Beth was told that she had an unexplained fertility issue, and she and her husband where then referred to IVF treatment.
Not content with being told her condition was "unexplained" however, Beth went back to her GP and asked for a gynaecological referral. In 2015, a laparoscopy treatment detected that Beth was experiencing endometriosis.
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Endometriosis is when 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 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.
The condition affects one in 10 women in the UK and at the moment there is no cure for it. In January of this year, Beth presented a petition on the steps of the Senedd calling for the improvement of endometriosis health care in Wales. The petition was backed by 5,800 signatures.
For her tremendous campaign work, Beth is a finalist in the 2022 WalesOnline Diversity and Inclusion Awards, which is held on July 13 at the Cardiff City Stadium. You can get a ticket to the event, which includes a three-course meal at the official website.
According to Beth, the conversation around endometriosis has progressed a lot over recent years, but she believes more should be done to help individuals whose lives are impacted by the condition, especially for future generations.
"When I was first diagnosed with endometriosis, I never talked about it," she said. "I just didn’t talk about it at all - very few people knew we were trying for a baby and there are so many taboos with periods and fertility.
"I just didn’t feel I could discuss it, I felt really anxious and almost embarrassed about it. But then, when I had my most recent operation and realised it was going to be an ongoing thing, an ongoing battle that was tiring and a difficult condition to live with, that's when I thought I needed to start speaking about it.
"Because, if I don’t speak about it and I’ve got it, how are things going to change? And also knowing that our two children - who are girls and this condition can sometimes run in the family, could also have it is a huge worry.
"The fact that they would also have to face this ongoing battle of not being heard, not being listened to and things being dismissed, concerns me. That's one of the main reasons I started this petition in the first place, so that the next generation can't grow up at a disadvantage just because of their gender. They deserve healthcare equality and at the moment we don’t have it."
Beth has undergone surgeries due to her condition, which were done with private healthcare that she was able to seek through her work. But to this day, the condition still has a major affect on her, both physically and mentally.
She said: "When I do have a period, it’s a period that fully interrupts my daily life. It’s crippling, agonising pain. I can’t take just a couple of paracetamols, a hot water bottle and get on with it.
"It’s at home, very heavy periods, I get pain like someone is stabbing me and suffer extreme fatigue like someone is pushing me down to the ground almost. I have this thing they call ‘endo belly’ in which my stomach swells up and looks like I am four or five months pregnant.
"I also find it overwhelming sometimes when I’m having a bad flare up. I tell myself each time that I am going to get through this one. And after the flare up, I feel like I’ve got to make most of the time when I’m feeling okay. It feels like you are constantly looking over your shoulder for when the next flare up is coming.
"You're thinking: is it going to coincide with one of my children’s birthdays, or Christmas, or anything you don’t want to miss out on or let them down? It doesn’t just affect me, it affects my whole family, my work life and being a mum.
"I try to make the most of those days when I'm feeling okay and try to fit in as much as possible. I try to not think too far ahead for when my next surgery is. I'm very lucky in the fact that I get private healthcare through my job and it if wasn't for that, I wouldn't have had my surgery last year and I would have lost my income. I would still be waiting right now as it's seven years at the moment."
As it stands, there are two endometriosis specialist consultants in Wales, with both located in south Wales. In March of this year, the Welsh Government announced that specialist endometriosis nurses were appointed in each health board in Wales to improve services for the chronic condition.
"It’s not an easy situation to resolve and the Welsh Government have made changes like the endometriosis nurses," Beth added. "Great work is being done by charity organisations such as Fair Treatment for Women in Wales (FTWW) - voices are getting louder and we are being heard.
"But the most important thing is finance - it needs more funding. At the moment, we have two endometriosis specialist consultants in Wales - they are both based in south Wales.
"There needs to be more of those throughout the country so that people in north Wales, for example, are not at a disadvantage because of where they live based on this postcode lottery.
"The starting point and the catalyst for change is to make sure that people do know about this and it’s set out in education settings - people might grow up with this condition, but also people might grow up wanting to be doctors or scientists looking into this condition and searching for a cure."
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