Endometriosis sufferers losing jobs and relationships need routine mental health support, doctors warn

Posted: 16th February 2023

Patients have described contemplating suicide due to ‘constant pain’ and feeling like there is ‘no way out’ of the incurable condition.

Endometriosis sufferers need mental health support integrated into their care “from the beginning” as the condition wreaks havoc on their careers and relationships, leading doctors and patients have said.

Patients living with the incurable condition have described having suicidal thoughts due to “constant pain” and feeling like there is “no way out”.

Women in the UK are still waiting up to eight years for a diagnosis and say they have often been dismissed and told their pain is “normal”, according to Endometriosis UK.

It comes after reported last week that women suffering from chronic urinary tract infections (UTIs) are facing mental health crises after being “dismissed and gaslighted” by health professionals for years, according to leading specialist Dr Rajvinder Khasriya.

Dr Jessica Muir, a registered clinical psychologist specialising in women’s health psychology, said there is a “lack of focus and resources on women’s health” generally. This leaves women in severe pain feeling like “they don’t have access to the information and the support that they need to plan their lives and manage their illness in a way that would be beneficial to them”, she said.

Professor Andrew Horne, a leading consultant gynaecologist specialising in endometriosis, said waiting years for a diagnosis impacts patients’ mental health as they have often been “ignored” or “passed around different specialists” before finally being given an explanation for their debilitating pain.

“The other issue is living with pain and the impact that that has on your mental health,” said the professor of gynaecology and reproductive sciences at the University of Edinburgh, adding that living with the symptoms can be “really exhausting and challenging”.

Endometriosis affects 10 per cent of women from puberty to menopause, which is over 1.5 million women in the UK, according to Endometriosis UK.

It occurs when tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes, according to the NHS. Symptoms include pelvic pain which usually worsens during your period, pain during or after sex, and difficulty getting pregnant.

Endometriosis UK has called for mental health support to be offered as part of routine treatment pathways as patients struggle with the damage the disease causes to relationships, education and careers.

An NHS spokesperson said the NHS takes endometriosis “very seriously and NHS staff should support women experiencing physical symptoms as well as the mental ill health associated with their symptoms”.

The National Institute for Health and Care Excellence (Nice) has already agreed to update its guidelines on the diagnosis and management of endometriosis, first published in 2017, following a campaign by Endometriosis UK.

But the charity has urged Nice to widen the scope of the review to “ensure mental health support is always offered for those who wish to access it as part of the endometriosis care pathway”.

A Nice spokesperson said the topic of mental health “may benefit from further consideration during [the] scoping of the update” after gathering intelligence that suggests “mental wellbeing and support are important for patients”.

Professor Andrew Horne runs a specialist endometriosis service in Edinburgh, which is supported by a psychologist, a physiotherapist, a specialist nurse as well as colorectal and neurological surgeons.

The service also offers a pelvic pain programme, which is run by the psychologist. The eight-week course is to help patients live with chronic pain, to better understand it and to find coping strategies such as mindfulness and cognitive behavioural therapy.

However, this multidisciplinary approach to managing endometriosis patients is “by no means common” and it required years of pushing for funding, said Professor Horne, with patients usually having to be referred separately to see a mental health professional.

“We’re still fighting to get more funding because we’d like to be able to offer more face-to-face appointments,” he added.

Professor Horne said he “100 per cent” supports the Nice guidelines being updated to ensure mental health support is integrated into endometriosis care, while Dr Muir called for patients to be offered a “package of support” that includes mental health treatment.

He said: “Pain symptoms of endometriosis can lead to mental health issues and the problem is that if you have a low mood, you’re more likely to experience severe pain as well. So it becomes a vicious cycle.

“Addressing mental health issues from the beginning is really important because it can often impact upon how patients will respond to different treatments for their endometriosis.”

He added: “Sadly, even patients who are well-managed with endometriosis still have to live with pain as we don’t have a cure for it.”

One patient, 42-year-old Gemma Beswick, said the debilitating condition led to the breakdown in her long-term relationship as her partner “just couldn’t get his head around it”, while Michelle Kerr, 30, said her marriage has suffered as she feels “inadequate as a woman”.

They both said lots of friendships have broken down as they are not able to socialise and that they struggle to receive support for how unwell they are because it is an invisible illness.

Becca Fowles, 37, was forced to quit her job as her chronic illness was not taken seriously, while Ms Kerr said she has “struggled to hold down a job due to absences and unsympathetic and unsupportive employers”.

All three women described having suicidal thoughts because endometriosis is an incurable condition, leaving them feeling like there was no way out.

Ms Beswick, from Fife in Scotland, has suffered from endometriosis since the age of 15, but said she was only diagnosed seven years ago after decades of being “gaslighted” by medical professionals who told her the pain was “all in my [her] head”.

Her mother had recently passed away from ovarian cancer so the doctors insisted that the pain was a psychological response to the trauma of losing her mother.

Over the years, she was referred to the gynaecology department of her local hospital three times, as well as oncology and psychiatry, but she was not sent for a laparoscopy until she was 36. This is a type of keyhole surgery that allows doctors to diagnose endometriosis by looking inside the abdomen.

“You just feel like nobody’s listening to you and you know what’s going on but nobody wants to listen and it’s a really, really dark place,” Ms Beswick told i, explaining that she tried to end her life once because she was fed up of the “constant pain”.

Since finally being diagnosed with stage three endometriosis, she has had three laparoscopies to have growths removed, and she is currently waiting on a fourth procedure.

Recounting the darkest times, she said: “It was awful. There were times when I just didn’t want to be here. I tried to take more than life once. It was a mixture of how I was feeling with this constant pain every day and other things that were going on in my life. It just gets too much.

She said she “lost a lot of friends” during that time, as well as her long-term boyfriend who did not understand the condition.

“I was single for a few years and I just I couldn’t bring anybody else into it,” she said. “Sex is the most painful thing when you’ve got endometriosis and trying to explain that to a new partner is really, really difficult. So I just found it easier to be just me and I would hide in my flat on my own for two or three years.”

Eventually, her sister managed to pull her out of the pit of depression and she is now getting married to her new partner in two months.

NHS Fife said it was unable to comment on the care of individual patients but confirmed that Ms Beswick has been in contact with the patient experience team “who remain willing to discuss and explore concerns in detail”.

Director of nursing, Janette Keenan, said: “Our gynaecology team works tirelessly to provide the best possible level of service, which is sensitive to both the emotional and physical needs of patients, and puts women at the centre of any decisions made about their care.”

Another sufferer, Ms Kerr, was diagnosed with endometriosis in 2016 at the age of 23. Since then, she has struggled with her mental health due to the pain and the loss of control over her own body.

She said the relief from getting the diagnosis was “short-lived” when she found out there was no cure for the condition.

Ms Kerr said: “It’s the fertility issues that are the main problem for me. It feels like your body is being controlled. You can’t do anything about it and you feel completely helpless. So that affects my mental health a lot.”

She has experienced six miscarriages, while also struggling to get pregnant in the first place.

Ms Kerr said employers have failed to understand what she is going through, branding her “unreliable”. She is currently taking sick leave from work due to her pain coupled with mental health problems.

“A lot of the time, I can’t see a future for myself because having this disease feels like you’ve got a big weight on top of you and it just takes so much effort to do the slightest thing,” she said.

“I’ve just turned 30 and I feel really exhausted. The idea of how I will go another 30 years feeling this way is quite hard.

“I just hope one day there will be a cure. That may not be in my lifetime, but I just hope that one day people don’t have to suffer like this.”

Dr Muir, the clinical psychologist, said the overarching theme among endometriosis sufferers is “isolation”.

She said: “People can feel quite dismissed when they’re in pain and seeking support, which can leave them feeling quite isolated. The pain can be really severe and really debilitating, which can have an impact on people’s moods as well.

“Often, the women I work with experience anxiety around work because often employers don’t really understand how debilitating endometriosis can be.”

She added that women hoping to have a family can develop anxiety about their fertility as it might be unclear how the condition will impact the chances of becoming pregnant. “There can be frustration in terms of getting that information and getting medical support around that that can feel really difficult,” she told i.

Faye Farthing, Head of Communications at Endometriosis UK said: “All too often we hear that those with endometriosis are struggling with their mental health, without access to the support they need.

“The impact endometriosis can have on someone’s mental health cannot be overstated. It takes on average 8 years to get a diagnosis of endometriosis in the UK, during which time, not only can the disease progress, but it can rob people of their relationships, careers, education, and mental health.

“We also often hear of those experiencing symptoms being dismissed – told their pain is ‘normal’, or even ‘in their head’. Years of being told comments like this can inevitably have a huge impact on someone’s mental health.”

An NHS spokesperson added: “Any woman who needs additional support should contact their local GP or talking therapy service, with information on possible symptoms and further support available on the NHS website for anyone who is worried.”

A spokesperson from Nice said: “Endometriosis is a long-term condition that can cause acute and chronic pain and fatigue. It has a significant and sometimes severe impact on quality of life, including ability to work, fertility, fitness and mental health.

“Following a review, we have identified new evidence that could impact recommendations in the Nice guideline on the diagnosis and management of endometriosis, first published in 2017. Areas that will be considered for update are diagnosing endometriosis (specifically what types of imaging to use), surgical management (pain management immediately post-surgery), and surgical management when fertility is a priority.

“We recognise the significant impact endometriosis can have on mental health. Intelligence gathered suggests that mental wellbeing and support are important for patients and would be valued in this area. This topic may benefit from further consideration during scoping of the update, with input from stakeholders, to explore the best way to address any unmet need. As a chronic physical health condition, endometriosis is also covered as part of the Nice guideline for depression in adults with a chronic physical health problem.”

A spokesperson from the Department of Health and Social Care said: “Endometriosis can be a debilitating condition that stops women and girls from living their lives to their fullest potential.

“Through the Women’s Health Strategy we have set an ambition for all women and girls with severe endometriosis to experience better care with a reduced waiting time for diagnosis. Research plays a vital part in improving care, which is why we have invested over £11m into endometriosis research since 2011.

“Alongside this we are investing an additional £2.3bna year by 2023-24 to expand and transform mental health services in England so that two million more people, including women and girls, get the support they need.”

Source:Endometriosis sufferers losing jobs and relationships need routine mental health support, doctors warn (inews.co.uk)

Categories: Mental Health News