HELPING STOP THE AGONY
Doctors told to improve endometriosis treatment
I just burst into tears, I had no idea what he had given me or why. Michelle Middleton who is one of two milllion women with endometriosis.
MICHELLE MIDDLETON takes handfuls of painkillers everyday just to function. She hardly socialises any more due to the chronic pain, she cannot work normal hours and needs a sleep in the afternoon. She feels like a failure to her two children.
Michelle is 39. She suffers from endometriosis, a condition suffered by one in ten women, and yet, no one knows its cause and there is no cure and it is little talked about.
Nearly two million people suffer from endometriosis, the same number as suffer diabetes and yet just five per cent of money spent on diabetes is spent on endometriosis, this is despite it costing the UK economy £8.2 billion annually.
But NICE (National Institute of Health and Care Excellence) is at last taking action after it was revealed it can take more than seven years for a woman to be diagnosed with the condition, during which time many are living in agony.
Michelle, a single mum of two from Silsden, was diagnosed when she was 29, but looking back she thinks she started with the painful condition ten years earlier.
Endometriosis means cells from the womb lining appear elsewhere in the body such as the bowel. They bleed in response the menstrual cycle, causing pain, swelling and scar tissue, Most women, including Michelle, are given drugs to induce a fake menopause and then hormones to counteract the side effects.
“My periods had always been painful but not intolerable. Although I had irregular bleeding when I was 18 or 19, nobody mentioned endometriosis. I think being on the pill from quite a young age masked my endometriosis symptoms,” says Michelle, who ran support groups for endometriosis sufferers for ten years but has had to give up recently due to illhealth.
“I’d also had trouble with my bowels – bloating, diarrhoea and sometimes bleeding. I know now that these can be symptoms of endometriosis.
“At 25 I came off the pill to start my family. I got pregnant quickly, but miscarried. My second and third pregnancies happened soon after, and although Alana and Leo were premature, they’re both fine.”
After having Leo, her periods were heavier and she gradually started becoming unwell and in pain, but the main symptom was fatigue.
“Pushing the baby buggy up a hill was exhausting. Then I had severe pain during intercourse. Endometriosis adhesions are fibrous, like a web, and can join organs together.
“Apparently my ovary is attached to my bowel, and this could be causing the pain. The first GP I saw told me to wait and see what happened, but I didn’t want to do that, so I saw another doctor.”
Michelle says she saw five doctors before finding one that eventually sent her for a scan and referred her to a gynaecological consultant.
“When I went back for my follow-up, the consultant said, ‘Well, you’ve got endometriosis’,” recalls Michelle.
“I’d never heard of it. He didn’t really explain what it was, but said they’d put me in a fake menopause with injections of a drug called Zoladex plus hormone replacement therapy (HRT) to combat side effects such as hot flushes.”
It wasn’t until Michelle got home that she realised what she’d done. “I just burst into tears. I had no idea what he had given me or why, I was in shock so that I didn’t ask any questions.
“I was exhausted and emotional. I felt as though I had premenstrual syndrome every day. My bowels caused problems, and I became really bloated.
“After two months I came off the HRT and felt better. I stayed on Zoladex for four months, and stopped having periods during that time, but again I was worried that this was just masking the symptoms.”
She came off the Zoladex but now, ten years after her diagnosis she has asked to go back on it.
“I’ve had four operations and that has left me with terrible internal scarring. I can’t even take the kids out for a walk.
“I feel like I have the body of a 90 year old. I feel like a failure and that really gets you down. People think you are lazy, but that is so far from the truth,” says Michelle, who runs her own cleaning business. She tries to stay positive and, for the last three years, has organised the glitzy Primrose Ball in Leeds to raise awareness of endometriosis and to say thank you to all those who support women with the condition.
“It is good to have something positive to focus on. It is a celebration of women rather than concentrating of the negative. As with the support group it just helps to know you are not the only one, as sometimes you do feel really lonely.”
Michelle says she welcomes the move by NICE to try to speed up diagnosis and treatment of endometriosis.
“More than anything, it is just good to see people talking about endometriosis and see that it is at last being recognised.”
While welcoming the NICE announcement, Emma Cox, Chief Executive of Endometriosis UK, said GPs needed more training. “Timely diagnosis could save women from many years of pain, distress and suffering. The impact a delayed diagnosis has on a woman’s life – her education, work, relationships and personal life – can be huge. On top of coping with the disease itself, women have to put up with being told, sometimes for years, that what they have is ‘in their heads’ or ‘normal’, when it isn’t,” says Ms Cox.
Michelle she hopes this is the start of things to come.
“There needs to be an holistic approach to endometriosis, not just the physical effects but the psychological ones as well.”