Not ‘just a bad period’: Why it’s past time we improved endometriosis healthcare in Wales

Beth Hales

You may not have heard of endometriosis, even though it’s a common condition that affects one in 10 women and those assigned female at birth – a similar number to those who suffer with diabetes or chronic asthma.

It has historically been dismissed as a ‘women’s problem’ or ‘just a bad period’, but recently endometriosis and the sufferers with it are starting to be heard as more of us are speaking up about it.

With endometriosis, cells similar to the ones in the lining of the womb are found elsewhere in the body. These cells or ‘lesions’ cause localised irritation and bleeding, leading to inflammation and the formation of scar tissue called adhesions.

Adhesions can be dense and sticky enough to pull organs out of place or stick them together, resulting in pain and organ dysfunction.

I was diagnosed with this condition in 2015 after years of gynaecological symptoms and three years of struggling with infertility. As a teenager, I was told that painful periods were the norm and something girls should learn to put up with every month.

It wasn’t until I was in my late twenties and my husband and I visited the GP about our infertility issues that I started on the road to a diagnosis. We underwent various tests and were told I had an unexplained fertility issue so we should be referred for IVF.

But before we started this treatment I decided to go back to our GP and insist on being referred to a gynaecologist as I couldn’t understand how a solution for a problem could be recommended before there was a diagnosis (as it turned out, IVF would never have worked for us due to the extent of the damage caused by endometriosis).

I had my first laparoscopy on the NHS in 2015, but all they were able to do was check if I had the condition so that they could give me an official diagnosis, and then I was put back on a waitlist for further operations. Thankfully I have private healthcare through my job and so I’ve been able to have two further laparoscopies using this means to treat the condition by having scar tissue removed from my ovaries, uterus, bladder and bowel.

Agony

For the (at least) 10% of women living every day with this debilitating whole-body condition, Wales has the longest diagnostic delay of all the home nations; it takes on average nine years to achieve a diagnosis and many are being dismissed or misdiagnosed with conditions such as IBS or mental health issues.

Patients are now being informed that the NHS waiting list for surgery with the remaining two endometriosis specialists based at UHW Cardiff is in excess of five years. There are no specialists in Mid or North Wales and so patients living in these parts of Wales have to be referred either to Cardiff or to specialists in England (but more and more referrals are being refused due to funding issues).

Due to this many endometriosis sufferers are now being advised to try and access private treatment for the condition. This isn’t a satisfactory solution to the problem as it can mean patients have to take out loans or crowdfund in order to be able to afford treatment and not be left in agony on a daily basis.

In Wales, the original home of the NHS, the fact that huge swathes of the population are now being forced to pay for private healthcare is nothing short of scandalous.

Harm

Thanks to campaigning from the wonderful charity Fair Treatment for the Women of Wales (FTWW), the Welsh Government commissioned a report in 2018 to investigate the seriousness of the problems with endometriosis healthcare.

Three years on and despite the report finding that a lack of access to appropriate care had resulted in “non-prudent use of resources and waste and harm for individuals and service providers”, the majority of recommendations which would make the biggest difference for endometriosis patients (such as access to sufficiently skilled surgeons) still haven’t been implemented.

The report also highlights that there are “disparities in care and choice offered to patients living in England compared to those in Wales” and we should actually have six endometriosis specialists in order to level-up with the current provisions in England and Scotland. Wales’ sole endometriosis facility is “inadequately funded” and the current “financial situation is unsustainable”, so there is a clear message from the report that additional resources are urgently required to ensure NHS Wales meets NICE quality standards.

This message has since been reiterated at an online all-Wales endometriosis awareness event, held in March this year. Speakers at the event confirmed that Cardiff’s specialist centre was now rejecting referrals from patients outside of the health board, largely down to cost.

Equal

As a result of all of this, I decided to set up a Senedd Cymru petition in the hope that it would help encourage urgent action on this issue. The petition has reached 2,000 signatures in three weeks thanks to support from Amelia Womack, Sian Harries, and Welsh charities such as FTWW and Chwarae Teg.

Endometriosis is an invisible illness and a lot of people are unaware of the serious and debilitating nature of the condition, so my hope is that the petition gives us a tangible way of highlighting the issue with policymakers and urgent change can be achieved.

The current health minister’s office has recently advised that they’ve “reminded health boards of their obligations”, but as many of the issues raised in the report are due to inadequate funding the Welsh Government should urgently consider allocating the appropriate level of funding and start delivering their own recommendations at pace. Some of the changes are being implemented with endometriosis specialist nurse posts currently being filled by Welsh health boards.

However, with sufficiently skilled surgeons and multi-disciplinary teams inaccessible to most patients, how can nurses manage the growing number with such complex and unmet needs? How can they make referrals if there are no specialist surgeons or centres to take them? Clearly, there is still a lot of disconnect between the Government’s intentions and the current experiences of patients.

Although Endometriosis is primarily a women’s health issue, it also has wider social implications. For example, if Wales is serious about reducing the gender pay gap then they have to start by giving women access to healthcare that is of an equal standard to men.

Otherwise, the Government are unwittingly placing another blockade in the way of more women progressing their careers whilst they are signed off work awaiting diagnosis and/or treatment.

We are 51% of the population, we deserve better and hopefully, the Welsh Government are listening.

Please lend your support to endometriosis patients in Wales, and sign the petition here.