Lorraine Henderson

From the thousands of calls made to the Endometriosis Association in Australia, it is apparent that many women suffering from endometriosis, have had difficulty in finding a doctor who is knowledgeable in the vast range of endometriosis related symptoms, has the expertise to treat the condition, the time to listen to the woman's concerns, answer her questions and the empathy to understand her physical and emotional turmoil.

(On a personal level, it took me 12 years to be diagnosed. At the age of 15, I started on the Merry-go-round, going from doctor to doctor trying to find a cause and cure for my debilitating dysmenorrhoea. It wasn't until I was rushed to hospital at the age of 27 that I was finally diagnosed with severe endometriosis and was told I would never be able to conceive.)

In response to the problems, such as a long diagnosis delay and lack of information and support, The Endometriosis Association, in conjunction with six local gynaecologists, established the Endometriosis Clinic in 1991.

At this clinic women receive total care for their disease encompassing their physical, emotional and social needs.

Women attending the Endometriosis Clinic have two consultations, which have different purposes, but are designed to compliment each other. A woman attending the clinic will firstly have a consultation with the gynaecolgist specializing in endometriosis. The gynaecologist will take a detailed history and then recommend a range of treatment options.

The member of the Association who has personal experience of the disease and acts as a lay counselor will then provide further information and support as required. The purpose of this consultation is to help the woman make an informed decision about the management of her disease, taking into account her personal preferences and life style.

As endometriosis can be a chronic condition and requires frequent visits to the doctor, many women despair at having to take time off work to attend medical appointments. Therefore most of the Clinics are held in the late afternoon or evening.

The Endometriosis Association encourages women to bring a partner or friend to provide support and comfort during the visit to the Clinic.

The Endometriosis Clinic has tried to create an atmosphere where women do not feel rushed or pressured. The initial appointment with the gynaecologist is a minimum of 30 minutes, followed by a session with a lay counselor from the Association, which can be anywhere from 30 - 45 minutes.

Women may then see the gynaecologist again after the session with the lay counselor to ask any further questions or clarify any concerns she may still have.

The lay counselor is available to accompany the woman during the consultations with the gynaecologist if this is requested.

The clinic has endeavored to provide continuity thoughout a woman's involvement in the clinic. The Endometriosis Association is involved in every aspect of the woman's visit to the clinic, starting with the initial booking which is made by the Association, to members of the Association being present at the clinic, to encouraging women to make personal contact with the Association any time after the clinic visit for further information, support or just a friendly chat. Women feel comfortable ringing the Association with inquiries, which they sometimes feel, are too trivial to worry a busy doctor, but never the less they are looking for answers and reassurance.

Women with endometriosis have a great thirst for knowledge about the disease, its treatment options and its possible impact on their lives. Therefore the Endometriosis Clinic has placed great emphasis on information and support.

The gynaecologist endeavors to give as much information as possible at a woman's first visit and this may include showing illustrations, diagrams and photographs. He will also discuss a full range of treatment options depending on the woman's symptoms, severity of disease and her lifestyle. Treatment options could include surgery, infertility treatment, drug treatment and alternative complimentary therapies. As a specialist in endometriosis, the gynaecologist acknowledges the great range of symptoms that can be attributed to endometriosis and the impact that these symptoms may have. Many times we have heard the comment "this is the first time that a doctor has really understood what I'm talking about".

The lay counselor is able to utilize her personal experiences and extensive knowledge of endometriosis to give further information, support and encouragement when needed. The Association has an extensive range of printed material, which is handed out as required at the Clinics. As the lay counselor has experienced endometriosis herself, she really does understand the needs of these women. As well as providing information, the lay counselor is able to discuss with the woman the nature of her disease in simple terms and the implication of each of the diagnostic and treatment options. The lay counselor can play a big role in helping women decide which treatment she feels comfortable in having. Often the Clinic workers are told by the patients that they have learned more about endometriosis during the Clinic visit than their many previous visits to other doctors.

The doctors and lay counselors work together, side by side acknowledging and complimenting each other's expertise and knowledge. Even though there are still many questions unanswered about Endometriosis, in Australia we are a cohesive team, striving to give women, with this debilitating disease, the best care possible.

Endometriosis Associoation of Australia (Victoria)
37 Andrew Crescent
South Croydon
Victoria Australia, 3136
PHONE +61 3 9870 0536
FAX +61 3 9870 3007