A woman from Great Waldingfield who is facing a hysterectomy at 32 to relieve a condition that can “feel like labour” wants it to be more widely recognised and understood.
Michelle Richardson, from Bantocks Road, was diagnosed with endometriosis, which affects two million UK women, in 2009.
Sufferers develop cells identical to those found in the lining of the womb in other areas of the body and, when the womb lining is passed out of the body during a menstrual cycle, these cells remain trapped, causing internal bleeding and swelling. There is no cure for endometriosis but treatments include hormone therapy, pain medication and surgery.
“It causes pain and inflammation. Your immune system attacks these cells as foreign bodies, and you feel fatigued and have weaker defences,” said Ms Richardson, who lives with her fiancé Andy Chambers and her 10-year-old son.
“My pain is worse in the build-up to my period so there’s a stigma – people think you just can’t cope with period pains,” she said.
“But I’ve been physically unable to get up and I feel like I’m going into labour.
“A lot of people with it also suffer depression.”
Ms Richardson, who is the aunt of Megan Roper – for whom the Free Press helped raise £76,000 last year – said she struggled to get diagnosed initially. It was only after she went in for an operation on her cervix that it was discovered in September 2009.
Three operations to remove the cells, which return after treatment, followed.
“I’ve been to doctors’ appointments and they have not listened,” she said. “After three operations, I was even told it was all in my head.”
She also suffers from severe migraines which are treated with drugs that interfere with hormone treatments usually used to battle endometriosis.
Ms Richardson decided to be sterilised in June 2010 as her medication could cause abnormalities in a child, and other physical problems would make pregnancy very risky and difficult.
“I had to grieve for a child I couldn’t have,” she said. “Luckily, I had a child when I was younger. I’ve come to terms with it now.”
Mr Chambers said the disease also affects the sufferer’s family, who can struggle to understand.
“There are a lot of people who are misdiagnosed and lots of partners aren’t made aware of the problems, so they can think the woman is ignoring them,” he said.
“Michelle doesn’t look ill so people think she is play-acting. I see her when she is doubled over in pain and can’t even cuddle her son.”
She was recently diagnosed with adenomyosis, a similar condition found inside the wall of the womb which causes it to become spongy. A hysterectomy, either in full or leaving the ovaries, is now the only option she feels will control the conditions.
“I don’t want sympathy, I want understanding,” she said. “I want it to be properly seen as an illness, the Government to recognise it and sufferers to be able to get help.
“More than anything, I want understanding and for doctors to listen to patients. If I’d been listened to sooner, I may not have had to consider a hysterectomy.”