The 'shocking' four-year wait for treatment for 'painful' women's health condition endometriosis

There are many things Scotland’s women’s health champion needs to tackle to make healthcare work better for women.

But one of the priorities for Professor Anna Glasier is improving the treatment of endometriosis - a painful condition which affects up to one in ten women.

Over the past few years, more and more people are talking about endometriosis, which causes tissue similar to the lining of the womb to grow in other parts of the body.

It can cause heavy and painful periods, pelvic and lower back pain, sickness and diarrhoea, and fertility difficulties, and in most cases can only be diagnosed with a laparoscopy, which involves general anaesthetic. 

The Scotsman sat down with Professor Glasier, who said there have been a lot of improvements in how clinicians deal with endometriosis in recent years.

She said: “I think people are now more aware of endometriosis and I think women are more likely to go and see their doctor and mention endometriosis if they are worried about it.

“I also think healthcare professionals and GPs are more aware of endometriosis.

“The women’s health team has been doing a lot to try and improve awareness among the public and healthcare professionals - we’ve had webinars, improved the NHS Inform pages, and held masterclasses for GPs.”

She feels endometriosis is “very well advocated for”, and has been incorporated into the Scottish Government’s women’s health plan.

Her best advice to anyone suffering with symptoms is to speak to their GP.

“There is a tendency to normalise women’s health conditions, which for some women are not normal,” Professor Glasier said. “One thing we want to do is encourage women who do have heavy, painful periods to go and see the GP to get advice about it, rather than thinking this is how it’s meant to be, because it’s not.”

There are three specialist endometriosis centres in Scotland - Edinburgh, Glasgow and Aberdeen. But even though the infrastructure and awareness is there, there is still one major problem - the waiting times.

Professor Glasier said: “If you’re referred with a possible diagnosis of endometriosis to a specialist clinic, as a new patient the wait is somewhere between 70 and 80 weeks, which is far too long.

“Once you’ve been to the clinic, if you need surgery you probably have to wait almost another two years to have your surgery unless it’s an emergency.

“That means from being referred to a specialist centre to having treatment, it is going to take you four years.”

So clearly there are still problems in Scotland, despite so many people working hard behind the scenes to help improve the lives of women with endometriosis.

One person who has raised concerns about the state of care for these women is Roz McCall.

She is a Conservative MSP for Mid Scotland and Fife, and has suffered with endometriosis all of her adult life.

Ms Call said it is “shocking” the care and treatment of endometriosis has not improved over the course of her life.

Roz McCall, Conservative MSP for Mid Scotland and Fife | Contributed

“I had been struggling with my periods, as a lot of women do, for nearly 13 years by the time I got my diagnosis,” Ms McCall said. “I had very sore periods, diarrhoea, sickness, nausea and lower back pain.

“It was very debilitating.”

She says her symptoms were continually dismissed by doctors, and she only received her diagnosis after she and her husband were struggling to get pregnant.

The pair went on to adopt their two daughters.

However she says other women are telling her the standard of care and treatment has not improved since she was diagnosed 30 years ago.

She said: “It is not acted upon quickly enough - there are so many women coming forward and not getting the support they need for endometriosis, which is concerning.”

She believes this is partly down to doctors not “joining the dots” quick enough when young women come to them with endometriosis symptoms, and because of a reduction in the amount of specialist care available.

So what does Professor Glasier have to say about Ms McCall’s diagnosis of the situation?

Well one thing that could be done better is communication between healthcare professionals and the women suffering from endometriosis.

“While the publicity and the training has improved, they may not be as good at saying to a woman with symptoms, ‘this could be endometriosis’.

“Hearing that it might be endometriosis would actually make them feel better and may open up a new conversation.

“But it is a condition which is heterogenous and mimics a lot of other conditions.

“So somebody may, for example, be investigated for irritable bowel syndrome because a possibility of endometriosis is raised.

“But in fact the bowel symptoms may be due to endometrium in the bowel, so it’s not easy for GPs to make a decision as to when they should refer somebody with pelvic pain to an endometriosis clinic rather than a gastroenterologist. 

“But it's not for lack of trying - but until we sort out the waiting list problems, that part of endometriosis is not going to get any better.”

She added: “It’s probably worse now than it was five years ago in terms of the delay because of waiting list problems, the lack of funding within the NHS, and so on and so forth.”

One area where the two women disagree though, is using hormonal contraceptives to treat endometriosis.

Hormonal contraceptive pills are often prescribed to treat endometriosis.

Ms McCall said: “When I started my periods the whole attitude was ‘it will sort itself out’, ‘wait a bit longer, it will settle down’, or ‘maybe we should put you on the pill’.

“The fact of the matter is, to be in my 50s and for there to be no difference in support is shocking - it’s not even close to where it should be.”

She says many women are not particularly receptive to being told to take contraceptives to help treat such a debilitating condition.

But Professor Glasier disagrees - “I think it’s true that things haven’t changed in terms of treatment options.

“But switching off somebody’s menstrual cycle by giving them hormones in the form of the combined oral contraceptive pill or a progestogen-only pill is the easiest way to do it.

“I think there’s a feeling among the public, probably not helped by celebrities and TikTok, that they get fobbed off when they’re prescribed the pill for a gynaecological problem.

“But we should do a better job of explaining why the pill is often the most appropriate treatment for a particular condition.

“Because it’s a contraceptive it has an image and there are quite a lot of women that feel as though ‘well, they just prescribe the pill.

“I’ve spent most of my professional life as a gynaecologist, I understand why the pill works so well for treating these conditions.

“But in the course of a 10 minute consultation with a GP to explore painful periods, considering a diagnosis of endometriosis, putting somebody on the pill and explaining why they’re not being fobbed off is a lot to do in 10 minutes.”

She added: “Hormonal contraception for endometriosis is still the mainstay of treatment, and there is no magic treatment or simple test that can be done to make the diagnosis.

“Colleagues who are doing research on endometriosis are optimistic there will soon be a simple blood test that can be done to diagnose it, but the treatment hasn’t changed a lot.

“I think we all have to accept there’s often no miracle cure for these long-term conditions.”

Ms McCall is hoping Professor Glasier and the rest of the women’s health team at the Scottish Government can help bump endometriosis further up the priority list - and that is something Professor Glasier hopes she can do.

However despite the long waiting lists and the limited options for treating the condition, Professor Glasier still believes talking to a GP is the best way forward.

“I think if you understand what your condition is and why it’s causing you pain it helps,” she said. “If you can understand it, you can understand the rationale for the treatment you’ve been given.

“And if you’ve got a sympathetic doctor, then being on a waiting list is better than not being on a waiting list, because at least there’s light at the end of a very long tunnel.

“Everything is taking a lot longer than I think it should, but that’s because we’re trying to make a difference nationally.”