National Endometriosis Society celebrates 25 years

by Ailsa Irving

Memories -Twenty-five years on!!

Ailsa Irving, Founder of the National Endometriosis Society in the UK

I cannot believe it is 25 years since I first advertised to meet other women with endometriosis in the personal column of The Guardian newspaper.

I was spurred into placing this advert after my first ever encounter with another woman who had endometriosis, having realised how helpful this meeting had been. I met Maureen while waiting to see the gynaecologist in Kings College Hospital. After about 15 years of struggling with the condition it was such a relief to finally meet a fellow sufferer and to discover we had so much in common.

Maureen’s case was a tragic one, her husband had left her with three little girls and she had the disease in her lungs as well as her pelvis. She came all the way from Swindon to London for the hospital appointment.

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 first step…

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!

Reaching further media

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.

Making progress: from my home to an office

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.

My own story

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 seven years 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!

Looking to the future

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 endometriosis. 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…..