Women living with ‘horrific’ pain make urgent plea for help

Endometriosis sufferers speak out ahead of inquiry into condition

AN ABERDEEN woman has described the agony of giving up her dream of becoming a mum due to the chronic condition that affects “every element” of her life.

Emma Adam, right, was diagnosed with endometriosis as a teenager, and has undergone three surgeries.

The 28-year-old and her fiance have now made the painful decision to abandon having children biologically, following a failed round of IVF. She is now urging other sufferers to share their stories with a Westminster committee set up to investigate the challenges faced by the 1.5 million women in the UK with the condition.

MPs will work with Endometriosis UK to understand its impact and to deliver recommendations on how to improve diagnosis, treatment and support.

Miss Adam, from Bridge of Don, said: “I planned to have kids and I’m not going to be able to do that.

“This disease is incredibly lonely and frustrating. “It’s tiring emotionally and physically.

“It has affected every element of my life.”

Meanwhile Westhill woman Lauren Marcella, who was diagnosed 16 years ago, revealed she is in pain “every single day” and even struggles to walk.

“It has been really horrific,” she said. “I was on the verge of suicide last year. There’s not a lot of treatment plans. You’re just left on your own.”

She hopes the inquiry will lead to doctors having more information.

For Emma Adam, endometriosis has affected every element of her life and robbed her of a long-held dream of having a family. The 28-year-old digital development manager described the chronic condition as “very isolating” and “frustrating”.

She has now joined the rallying call for fellow sufferers to share their stories with a Westminster committee which has been set up to investigate the challenges faced by the 1.5 million women in the UK living with the condition.

Politicians have also thrown their support behind the inquiry, which will give patients and healthcare practitioners the chance to share their experiences and advise the government on what steps need to be taken to ensure people with the condition get the right care at the right time. It will be led by the APPG (All Party Parliamentary Group) on Endometriosis with support from Endometriosis UK.

Miss Adam, who lives in Bridge of Don, Aberdeen, with her fiance Mathew, has undergone three surgeries so far for her condition and has now made the painful decision to abandon having children biologically, following a failed round of IVF.

The couple had been trying to conceive for almost two years with no success and were told there was little else that could be done as further surgery would increase scar tissue and a hysterectomy would have meant she couldn’t conceive.

Miss Adam, who has suffered from heavy, debilitating periods since she was 13, has now been included in a trial to go through a chemical menopause long-term by receiving monthly injections. This could be halted, should the couple wish to try to conceive again.

Miss Adam said: “I planned to have kids and I’m not going to be able to do that. I don’t have any regrets in our decision but I regret having this disease and what it’s led to but I’m not in control of that.

“It’s very isolating – even with your loved ones, they don’t fully understand it. It’s lonely and frustrating.

“It has affected every element of my life.” Inverness, Nairn, Badenoch and Strathspey MP Drew Hendry is one of the members of the cross-party group running the inquiry, and said he had been made aware of the “sheer impact” of the condition after listening to the experiences of some of his constituents.

He said: “That women are having to endure chronic pain while trying to hold down jobs, raise families and live a full life should be a concern for us all.

“I was made aware of the sheer impact this particular condition has on people’s lives after listening to constituents with endometriosis relay the excruciating pain they suffer, and the impact this has on their mental health and their wider family.

“As a signatory to the motion raised in Parliament earlier this year and as a member of this cross-party group, I am keen to work with others to help affected women highlight their concerns and to raise awareness.

“It is clear that more needs to be done to help support those who live with it.”

Aberdeen North MP Kirsty Blackman added: “I am pleased to see an inquiry which highlights the many challenges facing those with endometriosis, and what steps the UK Government needs to take to turn this around.

“Although endometriosis is not defined as a disability, it is vital that people affected are protected from workplace discrimination and provided allowances for medical treatment and periods of pain.

“Often women feel unable to disclose their condition, especially to managers of the opposite sex, due to stigma and a general low awareness of endometriosis.

“Improving awareness of endometriosis for both the public and within the healthcare system is a positive first step.”

Andrew Bowie, MP for Aberdeenshire and Kincardine, said it was “vital” women be given the “right support at the right time”.

He said: “All party parliamentary groups are one of Parliament’s greatest assets, compiling evidence and making recommendations with outstanding focus.

“They are often an important early step in bringing misunderstood or little-appreciated medical conditions to light. It’s vital that women with endometriosis across the UK are given the right support at the right time.”

Emma Cox, chief executive of Endometriosis UK, said: “This inquiry is a welcome opportunity for the government and NHS to get real about the impact of endometriosis on individuals and society.

“The inquiry provides the government with the opportunity to deliver recommendations for much-needed improvements for the diagnosis, treatment and support of 1.5 million women living with the disease – and reduce the suffering of future generations.

“We urge all people with endometriosis to take part in the survey. This is a huge opportunity to push for real change and shape the way care is delivered in future.”

The results of the survey, plus evidence gathered from hearings in March, will be analysed and published along with the recommendations in a report in July.

A Scottish Government spokeswoman said: “Living with endometriosis and chronic pain can be incredibly difficult and we are determined to improve services for all those affected. The Programme for Government 2019-20 includes a commitment to develop a Women’s Health Plan to tackle women’s health inequalities, including endometriosis.

“However, we know that in some areas of Scotland people wait too long to be seen for the first time and we continue to work with all NHS boards, including NHS Grampian and Tayside, on actions they are taking to improve performance, supported by record investment and our reform programme.”