Afterwards I drove Maureen and the girls to Paddington
to catch their train. I remember she was struggling
to afford the fare. As I was much better placed financially,
I gave her the money. Such was the immediate affinity
we felt! I only ever met Maureen that once but to this
day, 25 years on, we still exchange Christmas cards
each year.
The small personal column advert I
placed in The Guardian read: "Endometriosis
: do you suffer? Let’s unite to help one another."
This resulted in about 40 replies from all over the
UK. The first woman I met was Shelley Walker, a young
and very bright 26 year old midwife from Sydenham, who
had been forced to give up her career due to endometriosis.
We arranged our first meeting and along came Gill Brown
and Trish Holme. Gill worked in television and it was
thanks to Gill that a couple of years later we took
part in a ten minute slot on the TV ‘Helpline’
programme giving endometriosis prime time publicity.
One of the many things to emerge from
that first meeting was that three out of four of us
had suffered from a very bad attack of glandular fever
in our youth. Some years later it was confirmed by an
American study that glandular fever had a higher incidence
in women with endometriosis than in the general population.
Shelley Walker and myself put together the first newsletter.
Unfortunately, within months of this
first newsletter, Shelley succumbed to another illness,
manic depression, which she bravely fought for many
years, and which unfortunately led to her early death
five years ago at the age of 46. I still feel that without
Shelley’s valuable contribution in those early
days I may not have had the impetus to carry on the
work. I cannot over-emphasise her contribution as set
out in that first newsletter to the eventual setting
up of the Endometriosis Society.
Another person to emerge from The
Guardian personal column advert was Lesley Mabbett
who later became a trustee and who gave so much valuable
help to the Society in the eighties. We continued to
hold monthly meetings at my home and after some publicity
women were travelling from all over the UK for those
Sunday afternoon meetings. I remember someone coming
all the way from Dublin just to attend a meeting. She
later wrote of this experience in The Irish Times!
A year later, March 1982, Good
Housekeeping produced an excellent article by Jill
Rakusen (of Our Bodies Ourselves) exposing
the problems faced by women with endometriosis. From
this came not far short of 1,000 replies! From this
article many women with endometriosis emerged who became
the backbone of the Society, dedicated to working for
the cause. I mention here only a few I remember…
Caroline Hawkridge who became a trustee and who in 1989
brilliantly published the first UK book on the subject:
Understanding Endometriosis. Diane Carlton,
who set up the Lincoln Group and eventually helped establish
the other National Endometriosis Charity based in Lincoln,
The Endometriosis SHE Trust (UK) of which she is still
a trustee. Jean Reynolds who worked so well with me
here for many years, formed the Croydon Group and eventually
became the administrator in first the Brixton and then
the Victoria offices. Frankie Morris, who eventually
worked in the office and still operates on the National
Endometriosis Society Helpline, Sandie Higgs, who set
up the Sidcup Group and Lorraine Henderson, who eventually
founded the Australian Endometriosis Association. There
were many more.
I think we have to thank that article
by Jill Rakusen for many of the original team who set
up the Society. I always considered it the best piece
of magazine publicity we ever had! From this article
many local groups sprang up all over the country –
the first local group was in Manchester.
For nine years, until we eventually
opened the first office in 1990, the everyday work of
the Society was run from my home with the help of many
keen, hard-working volunteers. The trustees (usually
about four or five of us) tended to come from other
parts of the country and we used to meet monthly somewhere
in town where it was convenient – I particularly
remember meetings in the cafeteria at the Bloomsbury
Theatre!
In October 1982 we started to hold
workshops and for some years the Kings Fund Centre,
London, provided the accommodation for these, thanks
to one of our members, Andrea Whittaker, who worked
for the Kings Fund. They also provided us with much
of the furniture for our first office, which we opened
in Brixton on 1 April 1990. It took many years of struggle
to find the finance but a Department of Health grant
eventually enabled us to open an office in an office
complex in the heart of Brixton. We held workshops with
speakers all over the country and had all sorts of fund-raising
events including car boot sales! In 1988 I recall a
very memorable weekend conference for members in the
lovely surroundings of Herstmonceux Castle in East Sussex,
organised by Dian Mills of the Eastbourne Group.
So many lasting friendships came out
of those early days. For example, the original Croydon
Group, although no longer functioning as an endometriosis
group, still support one another closely in many other
ways. I know there are many stories like this throughout
the country.
It was evident in the early days that
many women with endometriosis were greatly helped by
homoeopathy and I know of several women who, after years
of trying unsuccessfully, had babies as a result of
this treatment. I can recall eight women members who
trained to be homoeopaths as a result of their own success
with homoeopathy.
These are just a few memories from
those early days in the eighties. I continued to work
voluntarily with the Society and as a trustee until
I retired in 1992. I produced the newsletters between
1981 and 1992. It was never a chore – I always
enjoyed finding stories to tell and passing on all the
numerous articles and information so many others put
together.
My own history was of severe endometriosis
that developed in my mid twenties but took sevenyears
to diagnose, by which time I was really ill as I had
some very large chocolate cysts on the ovaries. 35-40
years ago, before the advent of the laparoscope, it
was extremely difficult to be diagnosed. It certainly
wasn’t going to happen in Scotland where I then
lived – much easier to be told it was all in the
mind and to be fed anti-depressants. Eventually I went
to look for help in London and from there to Oxford
where in the John Radcliffe Hospital the problem was
finally picked up by the then well-known gynaecologist,
Professor Sir John Storworthy. Persistence had finally
paid off and surgery followed immediately. At the age
of 33 I lost an ovary and fallopian tube and large cysts
were removed from the other ovary. Despite constant
drug therapy and several smaller operations for adhesions,
eight years later in 1981 (the same year as the Society
came into being) I had a hysterectomy due to the endometriosis
having spread to the inside of the large intestine.
During many years working with the
Society I learned so much that helped me regain my own
health. Now 25 years later, at the age of almost 66,
I feel I have to thank the knowledge gained for being
in the position to pursue so many interests and activities
and really enjoy retirement. I stick to a strict regime
of daily high dose vitamins and if necessary homoeopathy
and am glad to say it is some years since I last visited
a doctor! Perhaps my story should be added to all those
many ‘Get Well Stories’ published in the
newsletters!
Unfortunately, 25 years on, I don’t
see any huge advancement in the treatment of endometriosis
or in the understanding of what causes it. It also seems
that diagnosis is often still much too slow. However,
the current generation of women with endometriosis are
in a much better position than we were as young women,
in that they have the help and support of the two endometriosis
charities and the benefits bestowed by all those who
have worked so hard to achieve a better life for endometriosis
sufferers. There is generally a much greater awareness
of the condition and three years ago I was proud to
attend the first ever medical seminar to be held in
the Houses of Parliament on enodmetriosis. Thanks to
the Endometriosis All Party Parliamentary Group and
the hard work of the two charities for making this happen.
I wish the Society all the very best
for the next 25 years.....
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