When Nia Jones was 14 she felt such excruciating pain whenever she was on her period that she’d find herself passing out. Knowing that period pain shouldn’t be that intense, Nia went to her GP – but she felt they didn’t take her pain seriously enough, and instead of referring her for tests, her pain and fainting was simply put down to having “bad periods”.
But Nia knew her body and knew being bent over in intense pain and collapsing wasn’t something that should ever happen just because she was on her period. Over the following months and years, Nia went to her doctor for help on numerous occasions and felt she had to really “push” to be taken seriously. “I was passing out on my period, I was being sick and I was in excruciating pain,” she said. “The doctor initially said it was just ‘bad periods’ but, eventually, they put me on the waiting list for a referral to a gynaecologist. Unfortunately, I didn’t hear anything for years.”
Whilst waiting for a referral, Nia was prescribed the contraceptive pill – which did help stop her fainting and sickness – and researched her other symptoms. Straight away, Nia realised that she matched all of the traits related to a medical condition called endometriosis. The NHS describes endometriosis as a long-term condition where tissue similar to the lining of the womb grows in other places, such as on the ovaries and fallopian tube, and lists period pain that “stops you doing your normal activities” and “feeling sick” as among the most common symptoms. For the latest Swansea news, sign up to our newsletter here.
After living with the intense pain throughout her teenage years, Nia called her doctor for an update on her place on the waiting list for a referral and said she was told she’d actually moved further down the waiting list “as I’m young and wasn’t trying for children at the time”. Frustrated, Nia felt that enough was enough and decided to go down a different route for a potential diagnosis.
“I couldn’t wait any longer for a diagnosis, so I decided to go private. I had health insurance through BUPA so I went to see a specialist and they explained that there was a waiting list for surgery and that you needed to have surgery in order to get an official diagnosis,” she recalled. “The consultant was 99% sure it was endometriosis but wasn’t able to confirm that until he did the surgery.”
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Nia, from Swansea, had her first procedure in November, 2021 at Werndale Hospital in Carmarthen and fears she may need further surgeries as her endometriosis is so severe. “Usually, the surgery takes about 30 to 45 minutes. It involves clearing out the endometriosis, the tissue – but I was in surgery for three and a half hours. When I woke up, the consultant told me I had endometriosis and said it was everywhere – not just in my reproductive organs, but on my bladder, bowel and rectum as well,” Nia said.
“It was actually a relief to have a diagnosis, one of the first things I’d asked the surgeon after surgery was: ‘Is there something there?,’ I’d been made to feel like I was going mad! But I knew then that there was a reason for it [the pain] – and they actually told me that if I hadn’t had the surgery at that time then I would have potentially lost the use of my bladder and bowels, it was that severe.”
“A few months later, I was in absolute agony again, the pain was as bad as it had been before surgery, so I went back to the surgeon for advice and he said he had cleared up everything he could see [but the pain didn’t ease],” she added. “Later, I heard about Dr Anthony Griffiths, he’s one of two endometriosis specialists in Wales and is based in Cardiff. I travelled up to see him for a consultation and he said, from my pain, it sounded like endometriosis, the tissue, was still there.”
It had taken Nia several months to recover from her first surgery and she now faced the frightening decision of whether to have another operation – and ultimately decided to go ahead with the procedure. “I had my second surgery in September, 2022, this time at Spire Hospital in Cardiff, by Dr Griffiths. He told me then I had Stage 4 endometriosis, which is the worst type [most severe]. He said the tissue couldn’t have been new, it must have been there from before.”
After Nia’s second surgery, she and her surgeon felt confident they’d cleared the endometriosis tissue but, as there’s no cure to the condition, Nia knows that the tissue can easily come back and she’s likely to need further treatment in future.
Nia has her next medical appointment in January, but is torn between having the surgery and being forced to spend months recovering – not to mention the high cost of the procedure as she’d have to pay for it privately again as she’s still stuck low down on the NHS waiting list – or continuing to live with the intense pain and other symptoms.
“I’ve got an appointment for January, 2024, and I’ll have to self-fund as I can’t use the health insurance anymore. I feel so guilty asking family to help me with it, but I’ve lost faith in the NHS. They were meant to refer me years ago but didn’t and recently I asked for a referral to gynaecology and that didn’t go through properly, so I’ve had to go private,” Nia said. “I know I’m really lucky to be able to go private, not everyone has that option.”
She added: “I’m at Stage Four, so it [the endometriosis tissue] will keep growing back. I’m between a rock and a hard place, really, as it’s not sustainable to keep having surgeries – and I can’t have it done on the NHS – but I can’t keep going on with the pain,” she added. “It’s a bit scary, there’s been mentions of a hysterectomy but I’m only 25 and I have a partner and I want to have children one day, so it’s difficult to think about. But not a single day goes by when I’m not in pain, I can’t remember the last time I wasn’t in pain.”
Asked to share any advice she had for other women who might be experiencing similar symptoms – or also feeling like they had to “push” their GP for a referral to gynaecology, Nia said: “You just have to persist. You have to go to the doctor and say that you know your body. It’s mentally exhausting [having to advocate for yourself so much]. I found it useful to keep a journal and write down the exact pain and how it was affecting me. But really, there’s nothing you can do [to mitigate the pain].”
‘I was in such significant pain that I couldn’t go out and do things’
According to the Royal College of Nursing, endometriosis affects 1.5million women and, on average, it can take seven and a half years from someone first experiencing symptoms to getting a diagnosis. A report submitted to Welsh Government in 2018 estimates that around 150,000 women in Wales are living with the condition, but states there is an “insufficient number of highly skilled gynaecologists trained in intermediate and advanced excisional laparoscopic surgery”.
With this in mind, many women face a lengthy wait for the surgery they need to get a diagnosis – and many say they have challenging conversations with their GPs in order to get the referral they need for an eventual diagnosis.
When we put a call-out on social media inviting women living with endometriosis to share their experiences, we received several responses – many of which highlighted the same key issues. Firstly, many women feel that their concerns are ignored or swept under the carpet by others, including doctors, who often don’t take their pain and symptoms seriously.
“The worst part about a lot of it has been the feeling of being brushed off by medical professionals,” Bethanie Isted, 27 said. “Having the official diagnosis definitely felt like a weight off my shoulders and validated my experience.” Bethanie, from Swansea, first realised something wasn’t quite right with her body when she was 19 – but it wasn’t until she was 25 that she finally received that all-important diagnosis she felt she needed.
“I noticed that when I was menstruating I would be in significant more pain than most and unlike my friends I couldn’t go out and do things,” she said. “I then started getting intermittent pain in my abdomen to the point of collapsing when I was around 20 which resulted in a lot of hospital visits.”
She added: “I suspected I had endometriosis from around 2017 as my Auntie had been diagnosed when she was younger and our symptoms were very similar. I tried getting an official diagnosis through the GP on multiple occasions but it took until 2020 to be referred to a gynaecologist. I then had a Zoom meeting with a gynae-surgeon who agreed it was likely that I had endometriosis but couldn’t be sure until a laparoscopic surgery was preformed, as this is one of the only true ways of diagnosing endometriosis as it often doesn’t show on scans etc. The process took what seemed like forever and if it wasn’t for going private in 2021, I would still not have been seen by a surgeon – I know this as I am waiting for an additional surgery currently on this waitlist still.”
Another Welsh woman living with endometriosis, Megan Olivia, said: “When I came through from surgery, and was told they found endometriosis, I burst into tears cause of pure relief! You find you get gaslit by doctors and you find yourself gaslighting yourself, leading up to the surgery I definitely doubted myself.”
These feelings of doubt could further extend to other mental health challenges, Megan said. “[Having endometriosis is] very stressful, I just feel very anxious a lot as I feel like I let people down, that being work or family/ friends, by missing events when I’m having an endo flare.”
This feeling was echoed by Bethanie, who explained that endometriosis often led to mental health challenges but felt this wasn’t something that was talked about enough. “So many patients, including myself, suffer with increased anxiety and depression and this is a common link with endometriosis patients which until I did my own research when looking into my diagnosis I had no idea about,” she said. “I think the depression and anxiety was absolutely triggered by feeling ignored and misunderstood and I’ve noticed that in work when I have to take time off for endometriosis pain it triggers a lot of my anxiety and depression and I think that’s because I fear that, because people can’t see the illness, they don’t always believe it.”
“Another thing that I think is misunderstood about endometriosis is that there are levels to endometriosis,” Bethanie continued. “I have had people who know people with endometriosis say to me, ‘well, my mum doesn’t get pain like that and she has endometriosis’ – it’s very discouraging and upsetting when people say things like that as not only does everyone respond to pain differently but there’s so many variations to the pain that one person’s experience is completely different to the next.
“The stages of endometriosis are minimal, mild, moderate and severe, this is in relation to the number of lesions or the depth of infiltration of the endometriosis, the pain can be severe even in minimal stages.”
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‘Endometriosis isn’t talked about enough’
“I had my first period at 13, I was at school during exam time and, not to be dramatic, but I thought I was dying!” added Megan. “I was throwing up, losing a lot of blood and not prepared at all, I never had the period talk growing up! I then didn’t have a period for about a year – I was in Cornwall on holiday with my family, I woke up in the most immense pain and just felt extremely faint and sick. My mother would say she had the same periods growing up and that she understands how horrible it is – she then took me to the doctors after every period I was having was so painful, I was missing school as I physically couldn’t get out of bed or function, and my periods were so irregular, I’d miss periods for months but when it came it was bad.”
“My family GP said ‘some girls get bad periods and others don’t, there’s no reason for it, when you’re older you can go on the pill and this will help, but there will likely be side effects like weight gain’”. I was mortified as it was not just unhelpful but I never wanted to go on the pill. I’m so glad they didn’t give me it at 14,” she added. “I was back and forth to the doctors until I was about 19! Seen several different GPs and not one ever mentioned endometriosis as there was a lack of knowledge of it.
Another woman living with endometriosis, who asked to be anonymous, said: “When I was 14 years old I’d been having my period for around six to nine months. I was away with family when my monthly period arrived but it arrived with the worse pain and sickness. I was stuck in bed in pain for five days. I went to the doctors and was just given standard painkillers for period pains.
“I was going back and forth to hospital and doctors for 11 years before I had a diagnosis. I saw GPs at three different surgeries (moving myself around as I felt I wasn’t being listened to). I was then in and out of hospital every month having morphine during hospital stays for pain – this went on for 11 months before Singleton Hospital agreed to keyhole surgery to see why I was in so much pain. During this surgery endometriosis was discovered and it was partly corrected. I am still awaiting further correction surgery.”
“Before the surgery, I suffered in drips and drabs,” she continued. “It’s not just period pain, it comes with fatigue, leg pain, hip and back pain, headaches, constant nausea! The anxiety and even depression it comes with too, as you never know when a flare up will come. Then when on a period, it literally feels like someone is stabbing me, like my stomach is on fire.”
Information about endometriosis can be found on the NHS website here. The NHS says people should see their GP if they experience the symptoms, especially if they’re having a “big impact” on your life.
In south Wales, there are several online support groups for women living with endometriosis. Several of the women we spoke to when researching for this article recommended the ‘Swansea and Bridgend, South Wales Endometriosis Support Group’ on Facebook, which can be found here.