Case study: Samantha Greig: taking part in endometriosis research
Buckinghamshire’s Samantha Greig, 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.
Mrs Greig donated samples for a study into understanding endometriosis to develop new tests and treatments after undergoing surgery for the condition at Oxford’s John Radcliffe Hospital.
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.
The FENOX (Fibroids and Endometriosis in Oxford) study involves taking blood, saliva, urine and tissue samples from women undergoing surgery for endometriosis with their consent and yearly surveys.
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.”
The NIHR-supported study aims to discover the causes of endometriosis and help develop more effective tests and treatments.
It is hoped the five-year-long University of Oxford 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.”
The Pitstone, near Aylesbury resident 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.”
Endometriosis can take eight to 12 years to be diagnosed as few tests exist and other conditions cause similar symptoms 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.
She said: “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.
“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 because of the condition. Husband Rob now works as a builder in 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.”