For almost half of her life, Zara Irvine-Payne (30) has been dealing with pain everyday from the “invisible illness” endometriosis.

“I’ve had symptoms since I was 16,” shared Zara, who described the pain she experiences as “very sharp” and “stabbing”: “It feels like someone has got a red hot poker, I get it in my tummy and in my back, and it’s like they are twisting this poker round and round, it’s not like any other pain I’ve ever had.”

Zara had been living with this pain for eight years before she was given an official endometriosis diagnosis.

“I was diagnosed after about eight years of having various symptoms, pain and everything, I had been to gynae and everything and said to them, ‘I’m having all these symptoms, I think it might be endometriosis’, because everything was kind of pointing towards that. I had a scan that showed I had an endometrioma which is a cyst with endometriosis,” explained Zara, adding that it was only after receiving surgery that she was told that she definitely had the condition. “The only way they can 100 per cent say that you have got it is actually go in and see it because it doesn’t actually come up on scans normally.”

On receiving her diagnosis, Zara shared that she felt a sense of relief but also frustration: “It was a massive relief but also it was quite mixed emotions as well. It was like nobody was listening because it shouldn’t take eight years to get a diagnosis of something.”

Although Zara was relieved that she could put a name to her suffering, her diagnosis hasn’t provided her with any physical relief as there is no known cure for endometriosis or treatment which she has found to be truly effective.

“There is nothing you can do for endometriosis really,” noted Zara. “I have literally tried every single treatment that they can suggest for it, I’ve had and I’m still on very strong painkillers, which isn’t really helping, I’ve tried pills, I’ve tried injections which puts you into a fake menopause and actually they use that for cancer patients to actually suppress the hormones. You are only meant to have six months of it all together and it’s not really licensed to endometriosis either but I’ve had well over 30 months of it, but it in itself brings side-effects of increasing your risk of breast cancer, gives you joint pains and all that,” she added.

Zara has also had over twelve surgeries, which included surgery to remove her ovaries, but even such extreme steps hasn’t brought her much relief from the pain that she experiences every day.

“I had my ovaries removed last January because that was a step I took, even though I don’t have kids, to hopefully get rid of my pain, at least most of the pain but I would have major flare ups maybe twice a year that would last six to eight weeks at a time, to a point that I can’t do much for myself,” she shared.

Endometriosis has had a huge impact on Zara’s daily life. She told this newspaper how she had to give up her career as a nurse because of the pain she experiences daily.

“Every single day it affects my mood, if I’m in a lot of pain people always say to me that I’m very quiet. It affects me that I need to take more medicine, they also have side-effects where I feel sick from it, I become quite withdrawn. Every single way it has affected me.”

Originally from Fivemiletown, Zara moved to Liverpool when she was 18 and spent 12 years there before moving back home in November 2019 where she now resides in Clabby.

She explained that moving back to Northern Ireland has brought major challenges from her endometriosis point of view: “I didn’t realise that waiting times are crazy here. I actually went to A&E last week because I was so bad and well they told me typically that I have a pulled muscle and I had to pay private to go and have a scan to show the issues that I have got and then I went back to the GP. I’ve no guarantee that I’m going to see a consultant within the next 12 months even though I’m in so much pain it’s unbelievable.”

Commenting that she tries not to let her endometriosis get to her, Zara added: “But you don’t realise how it does affect you. Obviously infertility, that’s a major side but also the pain is a major side to it, it’s both aspects of coping with it and you try not to let it affect relationships with friends, family and all that but you can’t help it and I do suffer with anxiety and depression because of it.”

“I have found talking about having endometriosis a great way of out-letting how I feel from a mental health point of view. I have an Instagram page that I vlog my endometriosis life as such on there. It’s just to increase the awareness because you feel very very lonely when you have endometriosis especially with women’s issues because there is a big taboo around it and it’s just to know that what you are going through, it is real and there is people that feel the exact same way. It’s just not to feel lonely because it can be a very lonely time,” Zara told The Impartial Reporter.