by Janine Walsh
Cofounder of ECCA
ECCA was born out of sheer frustration.
There are personal and professional reasons for this frustration.
On a personal level, I myself had endured the indignity of repeated laparoscopies for pelvic pain, only to be told the pain was in my head, not my pelvis. Various other inferences were made about the state of my marriage (a stressful relationship must have been causing my pain) and my slight build (obviously I was anorexic!). When finally diagnosed at age 28 I felt a huge sense of relief and thought then about moving on with my life and career. The support I received during this time, while helpful, didn’t assist me to ‘live well with the disease’. As endometriosis is a chronic disease, I was led to believe that recurring pain and repeated laparoscopies would be a way of life. Women I saw living with endometriosis tended to dwell on it and let it consume their lives. As a result of this negativity the seeds of ECCA were sown.
Six years later I found myself co–ordinating the Women’s Health Service at Cliveden Hill Hospital. As the hospital specialised in gynaecological laparoscopic surgery, the larger part of my work involved educating and counselling women with endometriosis. What I saw I didn’t like. Women were undergoing repetitive surgical treatment, often on a yearly basis. Women I spoke to on our information line, reported ineffective surgical treatment and inappropriate medical treatment. They complained of recurring symptoms soon after surgery or drug treatment. Throughout these treatments they received little ongoing management or care and guided support. What assistance was available, seemed to emphasise the negatives. The women shared their experiences of the disease which often frightened the newly diagnosed.
The women I dealt with were on the whole frustrated, angry, annoyed and depressed. Many were addicted to strong painkillers. They found it difficult to live a normal life with endometriosis. I in turn became frustrated with them and annoyed at the lack of early guidance and support. I tried to encourage them in so many different ways, - counselling, advice on diet, exercise, and use of relaxation techniques and simple lifestyle adjustments. We would discuss outcomes, expectations, methods of pain relief and more. Some responded well, many didn’t. What I came to realise was that it was harder to help someone who had been “living” the disease for some time, someone who had firmly established patterns of behaviour and coping mechanisms. The women I succeeded with, were those who were counselled from initial diagnosis. They seemed more open to suggestion and were better able to adjust in ways that could improve their quality of life and their ability to function in the ‘real world’. After all, these women were wives, mothers, daughters, girlfriends and sisters. They had jobs, social lives, study and/or families to care for.
So then the thought … ‘If we could reach more women at this early stage they may have a better chance of living a normal life with endometriosis. Combine this with expert surgical management and we may even improve the prognosis for these women and where possible preserve their fertility.’
I took the seeds of ECCA to Fran Thomas the CEO of Cliveden Hill Hospital (1994-98) and it was with her unconditional support that I was able to put my plan into action. Fran shared my passion and gave me so much encouragement, affording me the autonomy I needed to proceed.
There was much work to be done. In order to reach women we needed to have something special to offer. Something new and unique. I wanted to develop a complete model of care. A model that incorporated vision and direction. A model that had a unique identity and philosophy with set objectives for care and treatment.
Worldwide research had already shown that surgery was the most effective way to completely remove endometriosis. In 1998, I was in the right place at the right time. I was fortunate to be working with the two leading specialists in endometriosis in Victoria, Professor Carl Wood and Associate Professor Peter Maher. Their skill in excisional endoscopic surgery (endo is cut out not burned) laid the foundation for the ECCA team. In 1999 Dr Jim Tsaltas arrived to complete the expert surgical team.
But there had to be more. We had to break the cycle of repetitive surgeries, after effects of surgery side effects of drug therapy, dependence on painkillers, and the emotional whirlwind that a chronic disease like endometriosis can create for its sufferers.
We knew that 40% of women with endometriosis consulting our specialists were using some kind of natural therapy. Many had tried several therapies, including naturopathy, herbs, acupuncture and massage. Most were used as a last resort when symptoms recurred after treatment. However, the allied health professionals believed that they had more to offer, than symptomatic relief alone.
The concept of doctors incorporating the benefits of natural therapies into a patient management plan was unique. Our doctors however required little convincing as to the benefits of offering women these modalities. This facilitated the development of an integrated approach to care.
The initial ECCA team consisted of:
Professor Carl Wood }
Associate Professor Peter Maher } Providing initial assessment, diagnosis & surgery
Dr Jim Tsaltas }
Janine Walsh - Program Director & Clinical Co-Ordinator
Frossa Mrakas - Marketing & Promotion
Robyn Compton - Dietetian
Anne Grendon - Naturopath
Liz Crocker - Psychologist
Steven Clavey - Chinese herbalist
Jill Griffiths - Masseur & Lymph therapist
Mary Menotti - Practitioner of traditional Chinese Medicine
Simone Aybar – Dawson Chiropractor
& Mr Rodney Woods - Colorectal Surgeon
We later welcomed Dr Nesrin Varol & Dr Luk Rombauts, Gynaecologists & endoscopic surgeons and Helena Frawley, Women’s Health Physiotherapist.
As the ECCA team worked together to develop protocols for treatment, a great camaraderie grew which continues to this day. We built our objectives and philosophy on our ability to work together as a team to improve the outcomes for women with endometriosis.
On March 1 st 1999 we formally launched the Endometriosis Care Centre of Australia at Cliveden Hill Hospital in East Melbourne.
Wanting to reach as many women as possible, we embarked upon a series of radio commercials on FOX FM in Melbourne. The result was astounding. Over 1000 women rang ECCA in the first week of operation and what was planned to be a one off seminar in the same week, developed into 3 sessions, with a total of 900 women attending. During this time I was fortunate to have the seemingly inexhaustible energy and support of Frossa Mrakas, Rebekah Barnfield and Jo McKechnie (CEO Cliveden Hill Hospital 1998-).
Since its inception, ECCA’s growth and development has gone ahead in leaps and bounds and continues to meet the needs of women in the current healthcare environment. Women on the whole, have become more aware of their options for care. They now look for best practice. They are becoming consumers of health care, often seeking second and third opinions before making decisions about their health and their bodies. ECCA’s model of ‘total care’ is unique. Not only are health needs met, but so too are service, consumer, information and technology needs.
In our first 12 months we saw over 500 women through our clinics in Melbourne. We have spoken to thousands of others over the phone and at Expo’s and public meetings. In excess of 75,000 people have accessed our Internet site. We have run a successful seminar series in Melbourne and have commenced an education program in regional areas of Victoria. I feel we have made an impact in increasing the public awareness of endometriosis. Our success has included the opening of 2 further ECCA centres in Queensland (Brisbane & Gold Coast) and plans are underway for centres in Tasmania, Western Australia and South Australia. Before too long every Australian woman will have access to an ECCA centre. All women will have the opportunity to benefit from an integrated, multidisciplinary approach to the management of their disease. Standards have been set and all centres will offer a consistent level of expertise in both medical/surgical and allied health management.
ECCA is now registered as a national company, complete with a board of Directors, a medical advisory committee and an ethics committee. From small seeds, ECCA has blossomed into an incredible success. I am proud of this success, and make no excuses for the manner in which it has been achieved. ECCA has proven its worth to the hundreds of women it has assisted over the past year. We will continue to work to improve public awareness, early and correct diagnosis, effective treatment and research into endometriosis in Australia.
Former National Program Director.
Endometriosis Care Centre of Australia.