Woman denied chance of a family due to womb condition backs research

A Buckinghamshire woman who had to give up her dreams of a family and job due to a painful womb condition is taking part in NHS research to help others.

Samantha Greig, 36, donated samples for a National Institute for Health Research (NIHR) supported study into understanding endometriosis to develop new tests and treatments after undergoing surgery for the condition at Oxford’s John Radcliffe Hospital in March.

Endometriosis occurs where tissue similar to the womb’s lining starts to grow in other places, such as the ovaries and fallopian tubes. This can cause fertility problems.

Though not fully understood, it is thought the condition damages the fallopian tubes or ovaries. It causes pain as endometriosis tissue swells and bleeds, similar to the lining of the uterus during a woman’s period. 

The cause is unknown and 10% of UK women have the condition. There is no cure but treatments include painkillers and surgery to remove tissue, parts of the womb or other affected organs.

Mrs Greig, of Pitstone, near Aylesbury, said: “The only way I can describe it is as constantly feeling like somebody’s trying to rip my insides out.

“It’s like a silly putty - it just sticks to where it wants and grows. Even after surgery to burn it off it still comes back. It means lifelong operations, lifelong medication and lifelong crippling pain.”

Mrs Greig has had symptoms since she was 19 and six miscarriages since she was 21. She said: “I’ve never got any further than eight weeks pregnant. Each time, I’d suddenly get ill, go to hospital with heavy bleeding and doctors would test me and tell me I was pregnant and miscarried.

“It’s gut-wrenching when I’ve fallen pregnant and end up miscarrying. I end up going into a bubble, not talking and not explaining how I feel.

“When I think I am pregnant, I refuse to have a pregnancy test because my first thought is ‘when am I going to miscarry?’. I feel like a failure.”

It can take eight to 12 years to be diagnosed as few tests exist and other conditions cause similar symptoms of endometriosis such as pelvic and abdominal pain, excessive bleeding, infertility and miscarriages.

A laparoscopy - where a surgeon passes a thin tube through a small cut to look for endometriosis tissue - is the only accurate way to diagnose the condition.

Mrs Greig was diagnosed aged 33 in 2017. She has since had two operations to burn off the endometriosis tissue from her ovaries, womb and bladder, the most recent in March.

She said: “I was in agony but I ended up being used to it because I’d spent so many years in agony.

“Ever since I was little I’ve always said that I wanted to have children and all of my family expected me to have kids, so to be told that I possibly won’t have a child because of this condition is heartbreaking.

“I walked out and cried for days on end. I had to tell my husband that I can’t get pregnant and luckily he was very understanding.

“He’s completely fine with me not being able to get pregnant, but I still can’t help thinking ‘why can’t I give him that option of being a father?’

“Not being able to have children is not something you ever get over. It’s a hard emotion to deal with but you have to try and stay positive.”

Mrs Grieg left her supervisor job at B&Q in Luton in 2018. Husband of two years, Rob, 32, now works as a builder in Roccaspinalveti, Italy.

She said: “At work I could not walk 400 yards to go see my team without having to go back to the toilet and bleeding anywhere. My husband ended up getting a new job abroad so we could have a better lifestyle without me having to work.”

She was invited in February to participate in the FENOX (Fibroids and Endometriosis in Oxford) study, which involves taking blood, saliva, urine and tissue samples from women undergoing surgery for endometriosis with their consent and yearly surveys.

The University of Oxford-led study aims to discover the causes of endometriosis and help develop more effective tests and treatments.

It is hoped the five-year-long study will lead to a better understanding of the condition, development of new drug treatments and more effective tests for diagnosis.

Mrs Grieg, said: “I wanted to take part to help others. I know others who haven’t been diagnosed with endometriosis for years and if doctors knew how to spot the signs better, they could have been treated much earlier.”

Prof Christian Becker, the study’s lead investigator at the University of Oxford, said: “By collecting biological samples from patients with endometriosis, we hope to identify genetic markers that differ from women without the condition. By identifying these markers, we hope to find a way to diagnose the condition sooner, for example with a blood test.

“We hope to also use this molecular data to try to develop more specific, more effective drugs to treat the condition.”

Participating in health research helps develop new treatments, improve the NHS and save lives. The NHS supports research by asking patients and healthy volunteers if they wish to take part in trials to enable participants to access new NHS treatment and care options.

Patients are encouraged to learn more about research at www.bepartofresearch.uk.