There are many ways to follow the symptoms of endometriosis as they seesaw through the month, but first we need to differentiate between normal cyclical functions—that is, menstruarion—and abnormal conditions. Normal function includes an approximate twenty-eight-day cycle with some premenstrual pelvic pressure and bloating. Any menstrual cramps can easily be controlled with Midol or aspirin. Discomforting premenstrual symptoms will vary from person to person, sometimes including mid month low-range pain (mittelschmerz), indicating ovulation.

Christina can increase her awareness of the disease by using a calendar. Ideally, entries should begin with the first day of menstrual bleeding, which is an absolute marker. Each day, symptoms should be listed from good to bad. Over a two-month period, it will become clear when the side effects of high levels of prostaglandins are the most virulent. Those effects may include severe cramps, fainting, diarrhea, and pounding headache. There are also cases in which endometriotic tissue growing on the fallopian tubes causes a special dysfunction: during ovulation, the fallopian tube “misfires” and cannot draw in all the fluid surrounding the egg. Some of this fluid drops into the abdomen, causing tremendous pain. Furthermore, some women will experience psychological symptoms of premenstrual syndrome (PMS) along with die more physically debilitating problems associated with endometriosis.

Keeping a chart of her symptoms is vital for helping a woman and her doctor assess the severity of the disease and select an appropriate treatment.

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The most important thing to realise is that you are not alone in trying to cope with this disease. There are many people ready to support you by listening, making suggestions and helping you to make choices about treatment.

Talk to your doctor. Tell her or him you feel alone. There are also self-help groups. The Endometriosis Association (Victoria) is a non-profit group set up to help all fellow sufferers. Do not be frightened to ask for help or advice.

For those entering a new relationship there is the problem of when to discuss endometriosis. You may think that a discussion ‘too soon’ in a new relationship will frighten off a potential partner. For those who suffer from painful intercourse there is the constant worry that a new partner may think that you are frigid or that you just do not find him sexually attractive.

Acceptance

For many of us it is necessary to talk through all of these emotions before we can come to terms with the fact that we do have a chronic disease and that this disease will probably cause disruption to our lives.

There is a light at the end of the tunnel. Once you have come to terms with your illness and accepted that you have a health problem you will feel better — both physically and emotionally.

You are going to face many hurdles and be forced to make choices or come to terms with decisions that will be difficult.

You may have to accept that you may never have children, that you may require further treatment at some stage, that your life may be disrupted at times, and that you will be faced with changes.

Decisions

With acceptance of your condition comes the need to make decisions. These decisions will undoubtedly affect your whole future and you really need to weigh up all your options very carefully. These decisions are going to affect your childbearing, your capabilities and your quality of life. Career and relationships will also be affected.

Understand that these decisions will not always be easy to make or to come to terms with.

As a guide, make sure that you are well informed and consider all your options carefully. Look at the side effects, the advantages and disadvantages, the possible outcomes, and your future.

Take time

Do not be rushed into making a decision. Do not be pushed into a decision that someone else has made for you. You are the one who must decide what you really want and what is best for you. You must list your priorities to include your options, treatment and personal needs. Think ahead.

Ask questions

Help yourself become well-informed by talking to your doctor, attending sessions run by self-help groups and using the resources offered by women’s health services.

Read as much as possible about endometriosis and talk to other sufferers. This will not only keep you well-informed but remind you that you are not alone.

Take control

It is your body and you have to live with your decisions. Carefully consider your doctor’s advice and take into account the information you have read. But remember the final decision should be yours.

Communicate

Talk to women who have been through similar experiences. Talk with your family and your partner, if you have one. Talk to your doctor. Get the best possible care. Do not be frightened to seek a second, third or fourth opinion before you make any final decision.

Be assertive

Remind yourself that you have the right to the best possible care and that you have the right to voice your concerns and opinions. Do not be pushed into any decisions that you feel uncomfortable with.

Set realistic goals. Take it step-by-step, day-by-day. Do not rush yourself or allow others to rush you into decisions.

Do not be afraid to ask for help. Seek help if you are finding it difficult to make decisions on your own.

You may come across many conflicting ideas about the best way to approach decision making. Remember to investigate all avenues, ideas and suggestions before you make choices.

Once you are well informed you should make a decision that you are happy with.

Decisions should not be put entirely on your shoulders. Encourage and involve others, including doctors, family, partners, friends, other women with endometriosis, self-help groups and women’s health centres, to help you make the right choice. Remember — you are not alone.

Infertility

This can cause heartache, disappointment and loneliness — but couples do cope. If you have been on the infertility merry-go-round at some stage you will need to ask yourself, ‘Have I had enough?’. When are you prepared to stop infertility treatment? Ask yourself how much is too much. How long can you continue to be disappointed when yet another treatment has failed? How long can you put up with the disruption to your life? If you agree to continue with infertility treatments, will these be at the expense of other plans you have for your life?

Realise that you may never have a child; try and accept this — getting help if you need it — and then re-evaluate your goals.

Accepting that you will be childless may actually signal success and show that you have come to terms with your limitations. You have recognised the need to go on with other aspects of your life.

But do not be pushed into making a decision one way or another. It is your choice so make your own decision, in your own time, for the right reasons for you.

Calling it quits

You have the right to decide when you have had enough so that you can come to terms with the impact of your endometriosis. It may mean that you will never have children if you decide to have no further treatment or investigations. If you have had enough of the pain, the treatments and the disruption that endometriosis can cause, then the final decision may be to have a hysterectomy.

It is important to remember that if you are not coping at any stage, do not feel ashamed or embarrassed to seek professional help.

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Danazol is a weakened form of the male hormone testosterone. Testosterone is one of a group of male hormones known as androgens which are produced by the male testes. They are responsible for the functioning of the male reproductive system and the development of the male characteristics such as facial hair and a deep voice. Women also produce very small amounts of androgens in their ovaries.

Danazol is distributed by Winthrop in the form of 100 and 200 milligram white gelatin capsules. In Australia, Danazol is also known by its trade name of Danocrine. In the United States, the United Kingdom and Canada it is marketed under the trade names of Danocrine, Danol and Cyclomen respectively.

In Australia, Danazol can only be supplied under the Pharmaceutical Benefits Scheme for the treatment of endometriosis if your endometriosis has been definitely diagnosed during a laparoscopy or a laparotomy and if your doctor fills in a special prescription form known as an ‘Authority’. If this is done a script of Danazol will only cost you the maximum cost of a prescription under the Pharmaceutical Benefits Scheme ($15 in March 1991) as opposed to its full cost (approximately $ 150 per script in March 1991).

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The hormonal treatments currently available in Australia for the treatment of endometriosis are Danazol, Duphaston, Provera, Depo-Provera, Primolut N and the oral contraceptive pill.

GnRH agonists and Gestrinone are two newly developed forms of hormonal treatment used in some overseas countries which are currently only available in Australia on a trial basis.

Danazol is the drug which is most commonly used for the treatment of endometriosis. First developed in the early 1960s, it has been used for the treatment of endometriosis in Australia since the late 1970s; it is also used for the treatment of menorrhagia (heavy bleeding).

Danazol is a weakened form of the male hormone testosterone. Testosterone is one of a group of male hormones known as androgens which are produced by the male testes. They are responsible for the functioning of the male reproductive system and the development of the male characteristics such as facial hair and a deep voice. Women also produce very small amounts of androgens in their ovaries.

Danazol is distributed by Winthrop in the form of 100 and 200 milligram white gelatin capsules. In Australia, Danazol is also known by its trade name of Danocrine. In die United States, the United Kingdom and Canada it is marketed under the trade names of Danocrine, Danol and Cyclomen respectively.

In Australia, Danazol can only be supplied under the Pharmaceutical Benefits Scheme for the treatment of endometriosis if your endometriosis has been definitely diagnosed during a laparoscopy or a laparotomy and if your doctor fills in a special prescription form known as an ‘Authority’. If this is done a script of Danazol will only cost you the maximum cost of a prescription under the Pharmaceutical Benefits Scheme as opposed to its full cost.

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