20 ESSENTIAL THINGS TO DO WHEN YOU ARE DIAGNOSED WITH ENDOMETRIOSIS

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Self-help bridges the gap between the debilitating effects or illness and the regaining of health. Patient empowerment can help to motivate people to regain their ‘wellness’.

Once you have been diagnosed there are therapies which you can use on the road to recovery which have nothing to do with drugs and surgery.

Never assume anything. Always ask questions. Ask the consultant. Ask your doctor. Ask other women with endometriosis – and keep asking. Your answer is out there somewhere and you are collecting pieces of the jigsaw which will be your individual key to health.

  1. Endometriosis is not a fatal illness. The pain is real and we have to learn how to control it. Learning about pain helps to ease it with the right treatment for you.
  2. Take charge of your treatment. Ask yourself what you want and organize the strategy you want to follow. Choose your healing team and work with them towards your goals, be they pain reduction or regaining your fertility.
  3. Ask your doctor some useful questions.a. Where is my endometriosis growing?

    b. Have you done biopsies?

    c. What stage is my endometriosis according to the American Association of Reproductive Medicine scores?

    d. What additional tests are needed?

    e. Would laser surgery be the best option?

    f. What are my treatment options?

    Be active and ask all the questions that you need answers to.

  4. Get a second opinion. If you feel unhappy about what is being recommended to you, seek help elsewhere. It is no crime to want the best for your body. Women in your local group/chapter or at the charity office may guide you to consultants who do specialist research if that is what you need. Talk to them.
  5. Informed Consent. You can only know which treatment is right for you if you have read, talked and reviewed your treatment options. Find out as much as you can from other women. Many use a combination of orthodox and complementary therapies to help them heal. The point is that you must choose what feels right for you as an individual.
  6. Be sure of your doctor. At times when you are wracked with pain or feeling depressed because no pregnancy has occurred you need the best doctor. Find one with good interpersonal skills – the one you can talk to, who listens and works with you. A doctor is meant to be your friend and guide, never your enemy.
  7. Think hard about your treatment decision. Check that you have been given consistent information. You must be satisfied that your information gathering has been complete. Listen to the women who have got well and then decide.
  8. Give Informed Consent. You need to know in detail the risks from taking drugs, from having surgery, the effects of anaesthetics and from complementary therapies. NEVER sign a consent form unless you are crystal clear about the procedures. The consultant should explain everything to you openly. Cross out statements you do not consent to. Write in your own statements if necessary – like ‘I do not wish to have any organs removed without being consulted after exploratory surgery’. Make sure the procedure is described to you before you consent.
  9. Believe. If you are happy with your choice of treatment it will make a difference. Optimism is infectious – if it feels right go for it, wholeheartedly. If not review your options.
  10. Appointments. Take a friend or partner with you to appointments. The information you and your doctor share are an important part of your recovery. Trust and honesty play key roles. Be open and assertive as to your needs and expectations. Say thank you when they respond in kind. Your doctor is your healing partner.
  11. Lifestyle is a personal choice, but some of the keys to healing involve a good diet, gentle exercise and relaxation and stress reduction. Do what you can as these factors play a role in your healing.
  12. Total wellness, living well, feeling content is important to you. You have to take care of yourself. Decide to be well, it is your goal. Aim straight and true.
  13. Eat well. It is important to give your body the tools it needs to heal. These tools come from the food available. Chose the freshest options and ditch the manufactured foods. Go for gold, the top nutrient intake.
  14. Avoid stressors. Foods which stress your body are coffee, strong tea, chocolate, fizzy drinks, alcohol and cigarettes. Decide what is important in trying to heal. Only you can.
  15. Drink fresh water. Replace your body fluids frequently. 8 cups of water per day is optimum. Use a water filter or bottled water.
  16. Use nutritional supplements as a tool. They can boost your cells. Be careful, read and study what you will need. Consult a nutritionist who specializes in women’s health. Combined with a healthy eating programme for 3-4 months they may speed up the body’s ability to heal.
  17. Rest, sleep and exercise. All are important. Give yourself permission to be ill and allow your body the time it needs to heal. Go gentle walks, maybe visit your local pool and just allow the water to take your weight. Sleep when your body tells you it is tired.
  18. Read books. As you heal it will help you to read and understand just how your body can heal itself. Endometriosis is a challenge. Adequate rest and relaxation give you more energy to help yourself to heal.
  19. Use visualization. Imagination sets you free to be just what you want to be. Make mental pictures of yourself bouncing with health. Visualize your uterus and ovaries as pink and glowing with health. Imagine your cysts and endometriotic implants shrinking away. Be positive. We know women who do heal – why not you?
  20. Learn to laugh and play again. When we are ill, in pain, trying so desperately to get pregnant we lose a part of ourselves in the trauma. Find your smile again. Watch funny films, do things which give you pleasure into your life. Chose to spend time with people who fill you with joy.

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