Olivia McVeigh is all glam.
She’s beautiful, bubbly and as she goes about her job as a make-up artist, making everyone else feel good about themselves, you’d never know how much she is suffering.
You might notice her search her bag for some painkillers, then return all smiles and get back to it.
At 24, she can’t remember the last time she wasn’t in pain. Crippling pain. Some days it’s hard to walk and she has to use a walking stick.
She has endometriosis, a chronic inflammatory condition where tissue similar to the lining of the uterus, grows outside of the uterus. It affects one in ten women. There is no cure.
‘It’s like barbwire’
While Olivia had extensive surgery in January to remove much of it, it grew back so aggressively within six months that she was put into short-term, induced menopause.
The intention was to give her body a break and slow the growth but, for her, it hasn’t eased the pain.
She describes it as having “a barbwire being run along the inside of my abdomen with a burning pain that goes down my legs and up my back”.
Now, four months into menopause, she’s also dealing with a host of new symptoms.
“There was no gradual easing into it, they literally injected me and I went straight into menopause that day,” she told She Matters.
“I get hot flushes, my overall body temperature is up, I’m roasting all the time. I have insomnia and really, really bad fatigue. Very little energy.
“My bone density is very bad, it’s got lower, and I’ve got really bad joint pain.
“I’ve a wee bit of brain fog but not really. I’m on HRT as well so I don’t know, sometimes it helps, sometimes it doesn’t.”
She stresses that her symptoms and her experience are different to others.
Some women could have stage four endometriosis and feel very little pain while others could have stage one and suffer terribly, it depends on where the tissue has grown.
Variation in symptoms is one of many reasons that endometriosis is hard to diagnose.
On average it takes eight and a half years for a woman to get a diagnosis in Northern Ireland. It’s nine years if you live in the South.
Endometriosis advocates want to see that time drastically reduced but in Northern Ireland, where endometriosis services are provided within gynaecology services, getting a diagnosis and getting treatment is actually increasingly difficult.
She Matters can reveal that as of June 2022, there were more than 40,100 women on the waiting list for a gynaecology appointment in Northern Ireland – that’s a 59% increase since the start of the pandemic.
The number of women waiting more than one year for an appointment in Northern Ireland has almost trebled, increasing from 6,232 in Dec 2019 to 18,284 in June of this year.
The target for outpatients and inpatients is that no patient should be waiting over 52 weeks for an appointment.
Before the pandemic, 25% of patients were already waiting over that time. By June of this year, 46% of patients were waiting more than a year, including 58% of women waiting for surgery.
In addition, the number of women waiting more than two years for an outpatient appointment has risen more than eightfold, from 739 in December 2019 to 6,445 in June 2022. That’s a 772% increase.
Dr Hans Nagar, consultant gynaecological surgeon and spokesperson for the Royal College of Obstetricians and Gynaecologists, said: “These growing waiting lists are at the expense of women’s physical and mental wellbeing.”
“We must ensure that women’s voices and needs are heard,” he said.
Number going private ‘is huge’
In reality, some are waiting up to four years for surgery and that could be after waiting two years for an initial appointment.
Furthermore, Hayley Scott from support group Endo Warriors NI believes, the figures do not reflect reality because “so many choose to go private instead because the options on the NHS are terrible for them”.
I personally have yet to speak to somebody in our group who hasn’t at least gone for a consultation privately or is going for one soon, and the amount of people that have gone for surgery privately is huge.
“There are people in the group, like myself, who were lucky enough to have health insurance to get the surgery that they need.
“But there’s also many in the group that are paying their own way. They’re borrowing money from friends or family, they’re taking out loans, they’re doing whatever they can, essentially to get their surgery privately because they can’t wait any longer.”
Endometriosis advocate and medical scientist Kathleen King said the cost of going private for surgery can be significant: “You’re probably talking about anything from 5,000 upwards, with women with more complex cases travelling to the UK being quoted up to 19,000, so it’s a lot of money”.
Broken down by Trust
For women who decide to stay on the NHS waiting lists, the length of time they wait can be impacted by their location.
Almost 70% of those waiting more than two years for an outpatient appointment are in the South Eastern Trust. A spokesperson for the Trust said it is “prioritising red flag cases at present”.
The Western Trust, which accounts for about 18% of those waiting over two years, has apologised to women for the length of time they’re waiting and laid out some reasons for it.
In a statement to She Matters, a spokesperson said: ““During COVID-19 there was no endometriosis surgery carried out. We also had a consultant who undertook Endometriosis surgery leave the Trust during that period.”
“We are prioritising red flag and clinically urgent cases and undertaking some additional out-patient sessions at this time,” the spokesperson said.
The Southern Trust said its staff “have been doing everything they can in very difficult circumstances” and that they “continue to prioritise and treat patients by the urgency and severity of their illness in line with extant guidance.”
It is also piloting The Gynae Rapid Access Clinic East (GRACE) service at Craigavon Area Hospital, “a one stop clinic providing assessment, investigations and management” for gynaecology patients.
The Northern Trust, which accounted for 11% of those waiting more than two years, said that its waiting lists have decreased between June and October 2022 and that it takes opportunities provided under the Waiting List Initiative as well as the Independent Sector to reduce waiting times.
The Belfast Trust was contacted for a response, but it’s worth noting that the number of women waiting for gynaecology appointments in the Belfast Trust decreased since the start of the pandemic.
No specialist centres on island of Ireland
Women in the south of Ireland are facing a very similar situation with long waiting lists and delays to diagnosis, and while there are 63 endometriosis specialist centres in the UK, there are none in either Northern Ireland or the South.
The Irish Government has promised funding to deliver one at Tallaght University Hospital (TUH) in Dublin, “with particular focus on advanced and complex cases for which there is no ready access in Ireland”.
Advocate Kathleen King says that while there are currently clinics at TUH and the Coombe Women’s Hospital in Dublin, they are not specialist centres.
“The doctors there don’t have enough theatre time in a week to see all the patients they need to see and there’s no multi-disciplinary support, so should you need a colorectal surgeon or urologist or thoracic surgeon present during your surgery, it’s very difficult to get that set up and often women are exposed to multiple surgeries.
“The other side of it then is that you don’t have follow-up services. You don’t have pelvic physio or an endocrinologist or the psychological or nutritional support that might be needed as part of the service.”
Due to the lack of specialist centres on the island, many women from Northern Ireland and from the South travel abroad to other parts of the UK to get the services they need.
“What we have in the South as well, is that a lot of people are travelling to Romania, based on an expert surgeon there and the cost – you can get some of it reimbursed based on the HSE Cross Border Directive.
“That was being used for surgeons in the UK as well but Brexit has taken that avenue away.”
Ms King said that in years gone by she could have named the people who were travelling for surgery because there weren’t that many, but “in the last couple of years the number has absolutely exploded”.
‘You’re just being irrational’
In a statement, the Department of Health in Northern Ireland told She Matters that “whilst the direction of travel is to develop specialist endometriosis care this will require investment”.
It said the Department was “unable to give a confirmation of details regarding location or timescales at this time”.
Both Hayley Scott and Olivia McVeigh had to go private after six years of trying to get answers from their GPs.
Olivia’s distress was further heightened because by that stage she had also lost much of her hair, so she knew something wasn’t right.
“I said to the doctor, I’m like 22 and I’m going bald, that’s not normal. Her response was ‘sure your wigs are lovely’.
“I went out to the car and cried my eyes out. Then I was like, OK, who am I going to go to about this – and I went private”.
In addition to endometriosis, Olivia has since been diagnosed with polycystic ovary syndrome (PCOS) and androgenic alopecia, which is common in women with PCOS.
While there’s some crossover in the symptoms of endometriosis and PCOS, they are different conditions.
Her case, as she stresses, is complex and different to that of many women but one of the most difficult parts of her journey rings true to almost every woman we speak to: “They thought that I was making it up, that I was like a hypochondriac and that I had health anxiety.”
Most women in the UK will have visited their doctor at least ten times, as well as visiting A&E, before they are diagnosed with endometriosis.
Hayley Scott said the push for answers takes a huge toll on the mental health of women who are already suffering.
“We are told it’s in our heads, that we’re just being irrational, and that we’re being dramatic, we’re making it up,” she said.
“Or, you know, just recently a group member told us that they were told it was psychosomatic, that it wasn’t a condition.”
When Olivia went private, the consultant told her she had androgenic alopecia “as soon as she looked at me”.
When she then carried out an internal scan, Olivia says the consultant was shocked at what she saw.
“She said ‘Jesus Christ, this is awful, I can’t believe they’ve left you like this’. I was told I needed surgery immediately.”
While she has subsequently had to undergo further treatment, she wonders where she would be if she hadn’t pushed and if she hadn’t gone private.
Her message to other women suffering is “don’t think that your pain is invalid”.
Empowering women
Because it’s “such an uphill battle to get improvements in the medical field”, Endo Warriors NI believe that women and girls need to be empowered through education so that they have the confidence to pursue answers when they know something is wrong.
“Education around this in schools just makes sense, even for boys because at the end of the day half the population has periods and everybody should be aware of what goes on, what conditions can develop, whether it’s endometriosis or PCOS.”
The teaching of menstrual well-being is already mandated within the English school curriculum and experts have called for the same to be rolled out in Northern Ireland, Scotland and Wales.
In addition, experts have called for the implementation of the NICE Guideline on Endometriosis, which sets out baseline practice for diagnosis and management of the condition within the NHS.
But for many women across the island of Ireland, change is not happening quickly enough and advocates say that, as with many areas of women’s health, there is not enough research or investment.
As Hayley Scott points out, “not having a government sitting in Northern Ireland isn’t exactly helpful either”.
For her, the only glimmer of hope is offered by groups like Endo Warriors NI, that are bringing women together to “build each other up and provide a safe place to talk”.
“We try to bring a bit of fun and happiness around it, you know. We have movie nights, we have events, we try to sort of put a positive spin on it that, yes, we all have this horrible condition that we’re essentially stuck with but we have each other and we met each other through that.”
“But we want improved care for women in Northern Ireland because it’s just not acceptable. It’s not good enough and it has to change.”
