Coping
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.
*109\83\2*