Endo survey shows teens and young women still being told to grin and bear it

ENDOMETRIOSIS: SURVEY SHOWS TEENS AND YOUNG WOMEN TOLD TO ‘GRIN AND BEAR IT ‘
By Lorraine Connolly, Community Newswire
HEALTH Endometriosis, 02 Mar 2009 – 12:52

Endometriosis UK today revealed the results of a survey showing the impact of endometriosis on the lives of teenagers and young women.

Caroline Overton, trustee of Endometriosis UK and consultant obstetrician and gynaecologist at St. Michael’s Hospital Bristol, said “This survey reinforces the view that endometriosis is problematic in this age group. Some doctors may not recognise it, others may be unwilling to diagnose it because of the limited treatment options, particularly for this age group.”

Key findings from the survey of more than 1000 teenagers and young women, include 72% of respondents saying they had had time off school/study/work for their periods, while a third (33%) had seen their doctors more than five times for period pain. And more three out of five (59%) described their pain as severe or very severe.

Of the women surveyed, 57% had been prescribed the pill, while 51% had been given painkillers but both of these were ineffective for most respondents (61%).

Of those who had gone back to the doctor after neither route worked, a number of respondents said they were then either referred to a gynaecologist or given a laparoscopy (one of the only ways to positively diagnose endometriosis). A typical response from those surveyed was: “After many many years persuading them there was something wrong, I finally got referred for a laparoscopy and was diagnosed with endometriosis. They advised Prostap (a medication),”. One woman who was told she was “too young to have endometriosis” was diagnosed with the condition six months later.

Endometriosis UK said a “significant minority” of respondents said they had been told that the pain they were experiencing was normal, to try a hot water bottle, to live with it or think about getting pregnant. Typical comments included: “I was told by my doctor that my periods would get better with time. They told me this for 3 years,” and “They seemed to not ask many questions about what I was experiencing, making me feel as though I was wasting their time.”

Jeremy Payne, Endometriosis UK chief executive, said: “Although most doctors are doing a good job, there is still a level of ignorance about endometriosis, which – while not surprising – is disappointing.

“The fact that women are still being advised to get pregnant when it has long been known that, while this can reduce the symptoms for some women, for many it doesn’t and symptoms can return, is frustrating.”

Research by Endometriosis UK in 2006 found an 11-year delay in diagnosis, and this latest survey suggests that endometriosis may have a greater impact on the quality of life of teenagers and younger women than has previously been recognised.

Mr Payne added: “This all underlines the need for more research into this condition and ideally the development of new therapies with fewer side effects and therefore better suited to prescribing to a younger age group.

“This survey reinforces what we already know – endometriosis can be a debilitating condition and yet too many women are having unsatisfactory pain relief via the pill or painkillers.

“It’s shocking that the average time taken to correct diagnosis is 11 years.”

Endometriosis is a condition where patches of the womb lining occur in other parts of the body. During the monthly cycle, hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding has no way of leaving the body, leading to inflammation, pain, and the formation of scar tissue.

Most patients – once diagnosed with endometriosis – are treated through medication and in some cases surgery. For many, a range of alternative and complementary therapies have also delivered some degree of success in alleviating symptoms and pain. Endometriosis UK has a dedicated helpline on 0808 808 2227 and local groups providing vital support and information. For further information go to www.endometriosis-uk.org.