New Cross first with Endometriosis HQ
A national women's health charity is coming to Wolverhampton. The headquarters of the Endometriosis SHE Trust is moving from Lincoln to set up inside the city's New Cross Hospital. It is a first for the NHS trust – being the only such body to house an endometriosis charity, and a first chance for many women to get the better of a condition that can, quite simply, destroy lives. Sarah Cowen reports.
A national women's health charity is coming to Wolverhampton. The headquarters of the Endometriosis SHE Trust is moving from Lincoln to set up inside the city's New Cross Hospital. It is a first for the NHS trust – being the only such body to house an endometriosis charity, and a first chance for many women to get the better of a condition that can, quite simply, destroy lives. Sarah Cowen reports.
I have no single favourite day. I have four - each of the days I gave birth. My children, all born within five and a half years, are the biggest joys in my life. Friends who are mothers feel the same way. Forget life's loves, successes and other occasional delights – it's that baby who'll get you.
Even though my brood are now aged between 17 and 23, their existence still fills me with as much feeling of wonder, as it did before they were born.
This emotion was intensified nine months ago when I learnt that thanks to timing and fate, I was lucky to have any children at all.
After years of discomfort I had grown to accept as normal I discovered I had adenomyosis. But I was one of the lucky ones.
This disease is a variation of endometriosis, a condition of the womb so debilitating that it can create a lifetime of chronic pelvic pain and for many infertility.
While I was shaken to my core both by the way the illness struck and the sudden need for a hysterectomy, at least it struck after my family was complete. Had I waited, I too could have been joining the desperate ranks of women denied motherhood.
The heart-breaking truth is that more are suffering from endometriosis than anyone could imagine. Many, themselves, have no idea.
This is where the relocation of the Endometriosis SHE Trust to Wolverhampton is such good news for women throughout the region. They will benefit from being more aware of the existence of the condition while sufferers will be able, eventually, to seek first-hand advice and guidance. A hospital appointment could be combined with practical advice or, at least, a comforting chat.
And comfort is so important to an endo sufferer. Not only are they riddled with pain, but also many have waited nine years for a diagnosis. Many have been made to feel that their pains were, at worst, in their minds and, at best, in different parts of their body altogether. Seven out of ten are told they have irritable bowel syndrome and some patients even tell of having their appendix needlessly removed.
This is where one other benefit of the charity's link to the hospital, forged appropriately in this Endometriosis Awareness Week, comes in. Its gynaecology department boasts one of the country's leading Endo experts - Chris Mann, aged 48, - whose pioneering laparoscopic skills, better known as keyhole surgery on the abdomen, are famous.
They fuel hope in new patients across the country. By this method, examinations can be done quickly and patients fast-tracked. Last year, with clinic partner Damian Murphy, he helped nine out of 14 patients become pregnant, and has eased the agonies of hundreds of women. In addition to his operating technique, he offers a balanced view of the options available.
He does not immediately advise a hysterectomy, realising as a father himself, that this is the last possible choice. He explains alternatives and encourages patients to take a more holistic approach, championing dietary changes and the consideration of complementary therapies. This mirrors well the approach of the charity, with the SHE in the name standing for Simply Holistic Endometriosis.
"I see women at the end of their tether, who have seen at least two other consultants before me. I want GPs to be ever vigilant to the signs of endometriosis and women to be more aware of their own bodies. Many are content to think that what they fear is a problem is quite normal. Hopefully the proximity of the SHE Trust to the work we are doing here will help educate patients and health workers alike and spur research and collaboration," he says.
Chris is president of the SHE Trust, a position he took up, at the request of one of his patients. He has, unofficially, become its chief fundraiser. For the second year running he will take part in the 104-mile Wolverhampton to Aberdovey bike ride and tackle the Great North Swim – a mile in Lake Windermere. He has set himself the staggering target of raising £10,000.
How that money could help spread the word of the charity is mindblowing to its chair 40-year-old Jayne Tullett, from just outside Bromsgrove, who fought a 10-year battle with the condition.
"It is so overlooked and misunderstood. It may not be life-threatening but it is certainly life-destroying. So many women suffer that we need to start being their voice."
As one of the lucky ones, I'm with Jayne all the way.
• Find Chris at www.theendometriosisclinic.co.uk
• Find the Endometriosis SHE Trust at their new website www.shetrust.org.uk and on Facebook and Twitter.
