Credit: NEWS GROUP NEWSPAPERS LtdA MUM who battled for nine years to get an endometriosis diagnosis has set up a charity to help other sufferers with the psychological toll.
Michelle Dewar, 41, spent years being told by doctors her chronic symptoms were just period pain.
Women suffer physical and emotional trauma Credit: Prostock-Studio
Michelle has been through a number of ops
Eventually medics discovered she had stage four of the disease and has since had multiple ops, including a hysterectomy.
But while there’s support for the physical trauma, Michelle and the other 100,000 Scots sufferers deal with, the long-term emotional impact is left untreated.
Her new charity Endo Mind UK will help those dismissed for years by medics tackle a future with the illness.
Michelle, of Stirling, said: “I thought when I had my radical hysterectomy the medics would say, ‘how are you coping, do you need to speak to anybody?’. I thought that there should be some kind of counselling but there was nothing.
“I asked others if anybody had been offered psychological support, and it was always a no.
“People are getting told they’re infertile and then they have to get up and walk out of the room.
“People are going into hospital thinking they have appendicitis then waking up from operations to be told both ovaries have been removed. And they’re going home to face the absolute trauma of it.
“And it breaks my heart. It’s hysterectomies, infertility, life-changing pain, people losing jobs. There needs to be psychological or mental health support.”
Mum-of-one Michelle was often sent home from school with crippling period pain, suffering from sickness and shaking.
At 14 she went to hospital with what she thought was appendicitis, which turned out to be a burst cyst on her right ovary. She lived with pain for nine years until at 23 was hospitalised two months in a row in utter agony.
On the third month the gynae ward refused to admit her, insisting there was nothing wrong. Thankfully a consultant stepped in, had her scanned and sent for exploratory surgery, called laparoscopy.
Michelle said: “When I woke up, they said I had stage four endometriosis. My ovaries were stuck to the back of my womb, so was my bowel.”
She was put into a chemical menopause for 10 months, which badly affected her physically and mentally, before she was finally offered surgery.
Michelle explained: “You’re only supposed to be in chemical menopause for three to six months because it affects your bone density and it can give you osteoporosis.
“It was awful, it even affected my teeth. In that time, what really gets me is that I wasn’t offered any emotional support, I wasn’t asked if I was okay by any of the professionals. Not even my GP asked how I was coping.
“I just went into survival mode and pretended nothing was happening. I couldn’t explain the diagnosis because it hadn’t been explained to me properly. Inside my own head, I was just like, ‘what’s happening?.
“At 23 I was facing months of not knowing if I was losing my entire reproductive system, knowing that I wanted a child. It was pure terror, but I didn’t have the language to describe that at the time.
“Because it took nine years for me to get my diagnosis, I still over-explain things to people, I feel like I’m convincing people all the time, like I’m permanently traumatised by my experience.”
Michelle’s horrific experience has been repeated time and again with the latest figures showing it takes 10 years and two months for a diagnosis in Scotland.
PROTEST TO SHOW PAIN
MICHELLE has planned a peaceful protest to highlight those suffering in silence.
The event will take place in Parliament Square, London, on September 12.
She said: “We’re going to have 150 to 200 seats around the square.
“We want to show how endometriosis actually works, because sufferers can function really well, but people don’t see us behind closed doors, when we can’t stand up. There’ll be people that come that day that need the seat and there’ll be people that are feeling okay and they don’t need the seat.
“We’re sitting to say, this is what’s actually happening, people are being debilitated. We hope Parliament will know that we’re just screaming to be heard.”
And the campaigner, who has spoken about her experience in the UK parliament, wants to make sure no one is left alone during that traumatic time.
The aim of Endo Mind UK is to offer help to sufferers and push for more structured support.
Michelle, who is preparing for a battle with medics once again as her daughter Hope, 15, is showing endometriosis symptoms, said: “I’ve got a good relationship with people at Westminster now and I want to push, push for this to be recognised.
“Once we get funding sorted, we’re going to do support groups and offer resources for people. We’re going to try to dismantle that loneliness people experience, through peer support. And we are going to push really hard for some sort of proper psychological support.”
Eze Chidiebere Paul
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