Good diagnostician should be about 95 percent sure that his patient has endometriosis just by taking a very detailed medical history and listening to her progression of symptoms. A follow-up laparoscopy, when indicated, could then confirm the diagnosis. We have discovered, however, that there is another side to the issue: many women have had unfortunate experiences not only with misdiagnosis at the time of their initial visit but with laparoscopy as well. As the patient, you should be aware of what steps your doctor is taking before he recommends a laparoscopy:

• If the doctor believes you have an infection, he should have taken a culture to prove that point,

• If the doctor suggests mat you have a pelvic cyst or tumor, it should have been confirmed first with a pelvic ultrasound.

• If you are not responding to any treatment the doctor prescribes based on this findings, you should then be free and able to openly discuss with him (1) how you feel and (2) what other diagnostic and therapeutic steps could be taken.

• If he first retests you for infections, cysts, and tumors and all the tests are negative once again, a laparoscopy might then be called for.

What happens when a woman willingly undergoes this procedure again and again and is either diagnosed correctly or incorrectly, and either way, the disease is mismanaged?

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In order to be well informed you should read about the menstrual cycle so that you understand how the cycle works, know about hormonal changes and their effect, and understand what endometriosis is. This can be achieved either by yourself or by your doctor suggesting reading material and other sources of information. You can also contact your local women’s health information centre.

It is important to recognise that your doctor is not a mind reader, and that it is up to you to tell her or him what your problems are so that your doctor can get an overall picture of your illness. Identify the major areas of concern for you — infertility, pain control, improvement of lifestyle.

It may be a good idea to keep a diary in which you can record your visits to your doctor and make notes of any side effects of drugs or surgery or other treatments suggested by your doctor and list questions for future visits.

Be honest about symptoms and make sure the information you give is complete, accurate and relevant. It is of no benefit to you to withhold information.

It is important to be able to talk openly to your doctor and to feel that you can discuss your needs and fears.

If you have concerns about the side effects of drug therapy, you should feel comfortable discussing these with your doctor. If you have printed information about drugs or treatment you want to discuss, take this with you to the appointment so that your doctor can comment.

Always report the positive as well as the negative feelings you may be experiencing.

Vital decisions and concerns such as marriage, sexual relationships, careers and children should also be discussed with your doctor since these make up the total picture.

Imp roving consultations

Start by writing down any information you need prior to the appointment. Your questions should also be written down and added to during the consultation.

Repeat information back to the doctor to make sure that you have heard and understood everything correctly. Ask for diagrams and illustrations to help you understand the information the doctor provides.

Take a friend or partner or relative along for moral support; it is important that family and friends be informed about your disease.

During the appointment take notes if necessary and ask the doctor to write down any instructions.

Although difficult at times, try to control your emotions when talking to your doctor as this will make it easier to understand the information and take notes.

Realistic expectations

It is reasonable to expect your doctor to ask if you understand vital aspects of your proposed treatment regime and for that information to be expressed in terms that you understand. To achieve this your doctor first needs to establish your level of knowledge on both the technical and medical aspects of the disease.

It is not reasonable to put doctors on a pedestal and to accept all their advice without question. Let your doctor know what your expectations are — different women will have different needs and expectations.

It is not reasonable to have unrealistic expectations of what your doctor can achieve. For instance, the disease may not always respond to the best treatment available so it would be unfair to get angry with your doctor. Remember, doctors do not have all the answers to endometriosis — or anything else for that matter. They, too, can get frustrated with the lack of ‘cures’.

Making the right decision

Start by evaluating your doctor’s recommendations in the light of your own needs. If you want advice and guidance but also want to make your own decisions about treatment, then let your doctor know.

Trust

No doctor wants to feel that her or his credibility is being challenged but, equally, no woman should ever feel intimidated.

Let your doctor know that you respect her or his opinion but expect open and mutual communication and trust. You should trust your doctor’s level of knowledge just as the doctor should have respect for your judgements.

Confidentiality is also important and you must feel that information is confidential to both you and your doctor.

Your doctor needs to be able to trust that you have followed the treatment plan you both have agreed upon.

What is informed consent

Informed consent occurs when a woman has sufficient information about the proposed treatments or procedures to consider the options without pressure and to accept — or decline — treatment. Informed consent requires an explanation of the proposed treatment as well as an explanation of the risks and benefits. It is essential that a woman be given enough time to ask questions, discuss alternatives; a woman needs to know that she can withdraw her consent at any time.

It is important that you understand what you are consenting to — so a discussion with your doctor is essential. A doctor may make you feel that she or he is a busy person — far too busy to be bothered by trifling questions. However, you must make sure that you understand fully any treatment your doctor is suggesting for you — whether it be drug treatment or surgery — so that you are capable of giving your informed consent.

A woman who understands is far more likely to co-operate with her future treatment. It is reasonable to expect your doctor to ask if you have any further questions or if there is any other information that you would like.

Getting information

If you feel that you do not have enough information to give your informed consent then you should ask for further information This should include a detailed explanation of the diagnosis, what the diagnosis means and the various ways that your condition could be managed. Talk about the options and their likely outcomes. Other considerations should include:

will there be any pain or discomfort

what are the risks of the proposed treatments

what are the side effects

should I get a second opinion

what are the alternatives

what is the outcome if I have no treatment

how much will it cost

will my health fund cover the cost

how long will I be away from work.

To get answers to all of these questions you may have to be assertive. Many women complain they find it difficult to be assertive and demanding with their doctor but remember it is your body and you must take control.

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Duphaston is a progestogen (a synthetic progesterone) which is very similar to the naturally occurring progesterone produced by the ovaries.

Duphaston is manufactured by Ethnor in the form of small, white tablets, each of which contain 10 milligrams of Duphaston. It is sometimes also known by its chemical name, dydrogesterone.

How Duphaston works

It is not known precisely how Duphaston eradicates endometrial implants because, unlike the other drugs used in the treatment of endometriosis, it does not stop menstruation and it does not usually stop ovulation at the dosages that are most commonly used. It is thought that Duphaston probably works by inhibiting the growth of the misplaced endometrial cells in some way, causing them to gradually waste away.

Dosages of Duphaston generally used

There are several approaches to the use of Duphaston for the treatment of endometriosis. The dosage recommended will depend largely on the practices of the gynaecologist and, to a lesser degree, on the severity of the condition and the woman’s response to the treatment.

The majority of gynaecologists will recommend 10 to 30 milligrams of Duphaston daily (one to three tablets daily) for six to twelve months. A few gynaecologists will recommend taking the tablets cyclically from the 5th to the 25th day of the menstrual cycle each month for six to twelve months.

At these relatively low dosages most women will continue to menstruate and many will continue to ovulate regardless of whether the Duphaston is taken daily or cyclically.

In contrast, some gynaecologists will recommend significantly higher dosages of Duphaston because they believe that the treatment is more likely to be effective if menstruation is stopped. These gynaecologists will generally recommend 30 to 60 milligrams of Duphaston a day (three to six tablets a day) for six to twelve months. The dosage recommended will usually depend on the response to the drug, the final dosage usually being the minimum required to stop menstruation and ovulation.

Although the usual length of treatment with Duphaston is six to twelve months there is no evidence that prolonged or repeated courses cause long-term side effects.

You should make an appointment to visit your gynaecologist about six to eight weeks after you start your course of Duphaston so that you can discuss how the treatment is progressing.

Thereafter, you should visit every two to three months for the remainder of your course of Duphaston.

Duphaston can only be supplied under the Pharmaceutical Benefits Scheme for endometriosis if you have been definitely diagnosed during a laparoscopy or laparotomy and if your doctor fills in a special prescription form known as an ‘Authority’. If this is done one month’s supply of Duphaston will only cost you the maximum cost of a script under the Pharmaceutical Benefits Scheme ($15 in March 1991) as opposed to its full cost (approximately $30 per script in March 1991).

Side effects of Duphaston

Most women using Duphaston only experience one or two mild side effects which sometimes settle with time.

The most common side effects that have been reported include breast tenderness, weight gain, bloating, depression, headaches, lethargy and tiredness, dizziness, nausea, irregular vaginal bleeding and cramps.

The side effects of Duphaston are reversible and they diminish soon after treatment ceases.

There are no known long-term side effects of Duphaston therapy.

How effective is Duphaston

It is extremely difficult to provide any figures regarding the effectiveness of Duphaston in the treatment of endometriosis as there has been almost no research published on the issue. Duphaston has been used as a treatment for endometriosis for many years and it has shown itself to be an effective treatment for many women. One unpublished Australian study suggests that nine months treatment with Duphaston is as effective as six months treatment with Danazol.

The only study published to-date found that 43 of the 49 women had complete or partial relief from their symptoms and of the 19 women with infertility who wished to conceive, 10 did so.

There is no information available on the recurrence rate of endometriosis following treatment with Duphaston.

Duphaston, pregnancy and breastfeeding

The manufacturers of Duphaston state that it should not be used during pregnancy as progestogens may cause abnormalities in the developing foetus.

The use of Duphaston while breastfeeding is not recommended by the manufacturers. Small amounts of progestogens have been found in the milk of mothers taking the drug and effects on the child are unknown. However, some gynaecologists believe that Duphaston can be safely used during pregnancy or breastfeeding.

Interaction with other drugs, alcohol or foods

There are no known interactions of Duphaston with any foods, alcohol or other drugs.

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Danazol is commonly believed by gynecologists to be the most effective hormonal treatment for endometriosis but there is increasing evidence that it is no more effective than some of the other drugs.

Up to 80% of women experience total or partial relief from their symptoms and about 40% to 80% of women who wish to become pregnant conceive following treatment. Some 20% to 30% of women will have a recurrence of endometriosis within the first twelve months and a further 5% to 10% will experience a recurrence each year thereafter.

Danazol, pregnancy and breastfeeding

Danazol should not be used during pregnancy as it can cause masculinisation of the external genitals of a female foetus. If you become pregnant or suspect that you may be pregnant while taking Danazol you should stop taking it and contact your gynecologist immediately.

As is not known if Danazol is excreted in the breast milk nor whether it has any harmful effects on the infant, you should not take Danazol if you are breastfeeding.

Interaction with other drugs, alcohol or foods

There are no known interactions of Danazol with any foods or alcohol. It can interact with some drugs and you should make sure that your gynecologist is aware of any other drugs that you may be taking.

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