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MAASTRICHT, 15 SEPTEMBER
2005: Attendees at the 9th World Congress on Endometriosis
heard more about the challenge, which endometriosis
presents for the millions of women worldwide, who
live with this chronic disease.
The results of a global survey, completed by 7,025
women with endometriosis [1], were announced today
by Lone Hummelshøj, co-founder of the Danish
Endometriosis Society, as part of a workshop on pain
and quality of life.
The survey, which was commissioned by the UK Endometriosis
All Party Parliamentary Group, clearly demonstrated
that much more is required to deal with the effects
of endometriosis, which can wreck relationships, destroys
careers, contribute to infertility, and can have an
untold impact on quality of life.
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The
average diagnostic time from when women first
presented to their GP/primary physician with
symptoms was a staggering eight years.
Furthermore,
the worrying lack of awareness of endometriosis
leads to an additional three year delay before
women with symptoms seek help in the first place,
resulting in an overall diagnostic delay of
11 years - during which almost 50% of women
had to see five doctors or more in order to
obtain a diagnosis.
Less than
50% felt that their GP took them seriously when
they first presented with symptoms.
65% were told
they had another condition prior to a correct
diagnosis.
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These survey results
are almost identical to those presented by the Endometriosis
Association in 1998 following a similar study amongst
4,000 of their North American members [2]. One would
have hoped to have seen an improvement in time to
diagnosis in the past seven years, as well as improvement
in the support and help to sufferers, but this does
not appear to be the case.
Inconsistent levels of treatment
show that on average only a third of the respondents
felt that their treatment was effective, and less
than 50% felt that their endometriosis was under
control.
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PAINKILLERS
appear to be only somewhat effective in 21%
of the 6043 women, who had tried these, with
a varying effect depending on which type of
pain killer used. |
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SURGERY
appears to be effective to some extent in
30% of the 5478 women, who had tried this
treatment.
However, two
presentations in the pain and quality of life
workshop indicated that if women are treated
by surgeons specialising in endometriosis,
these results were much more favourable, with
up to 80% reporting an improvement in pain,
sexual activity, and quality of life [3] and
a cumulative pregnancy rate of 31%-70% from
1-4 years following laparoscopic excision
of endometriosis [4]. |
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HORMONES
were effective to some degree in 37% of the
5669 women, who had tried these.
However, there
were varying degrees of effectiveness depending
on the type of hormone tried, with different
types of progestins appearing to be the most
effective and best tolerated drugs. |
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COMPLEMENTARY
THERAPIES had been tried by 2716
of the women in this sample, and showed that
33% had some effect, with no great variance
depending on which type of therapy they had
tried. |
With most treatments being largely ineffective,
daily pain becomes a fact of life for many women
with endometriosis, and the study showed that:
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85% suffered
pain at menstruation
- 63% reported pain with sexual intercourse
- 58% had pain with ovulation
25% indicated that they suffered pain throughout
the monthly cycle, with 72% reporting that endometriosis
had interfered with their personal relationships,
including causing the break-up of marriages (10%)
and difficulty in looking after their children (11%).
Worryingly, and worth noting, is that about 90%
of the under 19s, had taken time off education due
to endometriosis with an average of 5+ days a month.
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Comparing these
survey results with data from the early-mid
80s (n=3020) and from 1998
(n=4000) has only validated the fact that
independent study samples from the past 25
years show that 74-79% of women with endometriosis
are at times unable to carry on normal work
due to their symptoms.
From the 2005
study, for those who lost time at work due
to their endometriosis, the average loss was
54 days a year with an obvious, yet unknown,
financial implication - to society and to
themselves.
36% have had
their jobs affected (n=2518), and 41% of those
had given up or lost their jobs due to illness;
37% had reduced their working hours; and 23%
had changed their jobs.
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In conclusion Lone Hummelshøj
said: "Endometriosis remains a disease which
is still largely surrounded by taboos and myths.
This data highlights areas that have a significant
impact on patients' quality of life, and which need
to be addressed. To do so a close partnership between
physicians and patients is essential in order to
provide the specialised care, which is so important
for those with this condition. We need to aid women
to talk openly about their individual needs and
to look beyond the traditional treatment team, if
necessary, in order to meet these. The theme for
this congresss - the patient as a partner - has
gone a long way to emphasise this necessity".
John McDonnell, MP for Hayes and
Harlington and secretary of the Endometriosis All
Party Parliamentary Group, says: “These results
were deeply shocking and disappointing and clearly
unacceptable that women with endometriosis are still
suffering in silence and waiting far too long to
be referred and to receive a diagnosis, resulting
in maybe millions of women suffering unnecessary
pain, distress and isolation.”
For permission to reproduce this article or
for more information about this study please contact
Lone Hummelshøj
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| REFERENCES |
1. The survey was carried out by the UK Endometriosis
All Party Parliamentary Group and involved 7,025 women
from 52 countries, who answered a questionnaire either
on paper or via the Internet between July 2004 and June
2005. The survey is ongoing and data continues to be
reviewed for regular updating.
The average age globally was 32 years,
and was similar in each country/region. There were no
real significant differences in results by ethnicity.
Almost half (49%) of responses came
from the UK, 18% from North America, 12% from the Nordics,
17% from elsewhere in Europe and 4% from elsewhere in
the world.
2. Sinaii N, Cleary SD, Ballweg ML,
Nieman LK, Stratton P. High rates of autoimmune and
endocrine disorders, fibromyalgia, chronic fatigue syndrome
and atopic diseases amoung women with endometriosis:
a survey analysis. Hum Reprod 2002;17:2715-2724.
3. Abbott J, Hawe J, Hunter D, et al.
Laparoscopic excision of endometriosis: a randomized,
placebo-controlled trial.Fertil Steril 2004;82(4):878-84.
4. Meuleman CLC, Beks N, D'Hoore A,
et al. High pregnancy rate, quality of life/sexuality,
and low recurrence rate after multidisciplinary radical
laparoscopic resection of deep and colorectal endometriosis.
Eur J Obstet Gynecol 2005;123(S1):S9.
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| ACKNOWLEDGMENTS |
TNS Social Research presented the findings and generously
gave their time to analyse the results of the study
free of charge and presented the Endometriosis All Party
Parliamentary Group with the findings.
Schering AG has provided an unrestricted educational
grant to produce a report of the findings.
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ALSO |
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