'It's like your organs are being crushed together': Women in the east speak about life with endometriosis

24-year-old Abbie lives in St. Neots in Cambridgeshire. It's taken 10 years for her endometriosis to be diagnosed, and it's something that she says has completely changed her life.

"It effects every part of my life. My social life, it really impacted my work, I had to give up my work as a nurse because of the amount of pain I was in,” she says. 

It took Abbie 10 years to get diagnosed. Credit: ITV News Anglia

The disease has grown all over her pelvic region and as well as losing her career, she struggles mentally with what else it could take from her. 

“I struggle” she says. “I don’t know if I’ll be able to have children or if I’ll be infertile. It’s really emotionally draining and mentally hard.”

 Abbie has now had excision surgery to cut out the disease, but she knows it will grow back and with it will come the pain.

Endometriosis is when tissue similar to the lining of the womb grow outside the uterus. Credit: ITV News

Endometriosis is when tissue similar to the lining of the womb grows outside the uterus often on other organs, causing them to fuse together. 

The symptoms manifest themselves in multiple ways but include:

  • Heavy painful periods

  • Chronic pelvic and back pain

  • Fatigue

  • Infertility

The cause is unknown and currently there is no cure

Emma from Norwich also has the condition, she's encouraging other women to speak up about their experiences. Credit: ITV News Anglia

Emma lives in Norwich in Norfolk. She's always had painful periods, but for many years her symptoms were dismissed.

She was living on pain medication and ended up in A&E. 

Eventually Emma was diagnosed, and at the end of last year, at just 33-years-old, she made the difficult decision to have a hysterectomy – the only way she felt she could regain her life.

She has a 7-year-old daughter and says she's finally able to be "mum" again after the surgery.

"She's my miracle, but I felt I couldn't be mum to her because of how many pain killers I was on. I'd been so desperate to be a mother but I couldn't be mum, I was the one lying in bed and struggling to get up and I couldn't run around and play with her like she wanted to because I knew if I did I'd be in pain. Now, I can be mum to her."

Emma and her daughter Olivia. Credit: ITV News Anglia
  • Emma sat down with ITV News Anglia journalist Sophie Wiggins to chat further about her journey, you can watch here:

Edward Morris is a consultant at the Norfolk and Norwich University Hospital and President of the Royal College of Obstetricians and Gynaecologists. 

He says there is good research being done, but the disease still doesn’t get the attention it needs.

  • Watch the video below to see Edward Morris answer some frequently asked endometriosis questions:

Charities and campaign groups are calling on the Government for more investment in research, for more education to raise awareness and break down taboos, and to cut diagnosis times. 

  • Earlier today, ITV News Anglia's Becky Jago spoke to Emma Cox, CEO of Edometriosis UK, about why diagnosis is taking so long. You can watch here:

At the Norfolk and Norwich University Hospital, University of East Anglia and Addenbrookes Hospital research is underway into new treatments and ways to diagnose the disease more quickly. 

Dr Babu Karavadra is one of the lead researchers. 

Dr Babu Karavadra Credit: ITV News Anglia

With the added pressures of Covid-19, there have already been added delays in diagnosis, treatment and surgery.  But the message to women is speak up if something isn’t right; and to medical professionals, listen, because untreated, this disease ruins bodies and lives simultaneously.

 For support, check out the links below: