Hysterectomy is one of the most common major surgical procedures performed on women worldwide. In the United States alone, around 600 000 women have the operation each year. Yet many questions remain unanswered about the appropriateness of hysterectomy for those women having it, and its effects on health, sexuality and life expectancy.

Trends in types of hysterectomy. In Australia in the late 1980s, the vast majority of hysterectomy procedures were abdominal. By the early 1990s, however, vaginal procedures (including laparoscopically assisted hysterectomy) appeared to be gaining ground, increasing from 25 to 29% of all hysterectomies performed. This is significant because the type of hysterectomy carried out influences the duration of and pain experienced after surgery, the time a woman spends in hospital and at home convalescing, and any postoperative complications she may experience.

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An auto-immune condition called systemic lupus erythematosis (SLE) causes chronic inflammation which can affect many systems of the body. One of the world’s leading experts in this disorder is Professor Graham Hughes, Head of the Lupus Arthritis Research Unit at St Thomas’s Hospital in London. His original investigations showed that many lupus sufferers also had a blood clotting syndrome which can be detected through the presence of antiphospholipid antibodies in the blood. Lupus sufferers get pregnant easily but have a high rate of miscarriages. This syndrome has now been called Hughes Syndrome. It is like having ‘sticky blood’, which can trigger a miscarriage by causing blood clots to form in the placenta. It is also thought that, these antibodies can directly attack the cells of the placenta, making implantation difficult. Hughes Syndrome can sometimes be found in women who do not have symptoms of SLE but are having recurrent miscarriages.

The two main antiphospholipid antibodies that need to be tested for are lupus anticoagulant and anticardiolipin antibodies. Professor Lesley Regan, of the Recurrent Miscarriage Clinic at St Mary’s Hospital in London, has pioneered this work on antiphospholipid antibodies and miscarriages. She makes it clear that women need to have a number of tests to determine whether they have positive antibodies, as fluctuations can occur. You can also get false positive readings and so she recommends that women should test positive on at least two occasions, with each test performed at least eight weeks apart.

The treatment of choice for ‘sticky blood’ is aspirin. This has been a surprise because previous studies have linked taking aspirin in pregnancy with children’s heart disease, brain malformations and cleft palates. Very heavy doses have been blamed for preventing normal growth of the lungs and ‘blue baby syndrome’. The difference is that in this treatment the aspirin dose is low – only 76mg daily. The aspirin is given prior to conception and as soon as the woman finds out she is pregnant she is also given the anticoagulant drug heparin.

Trials at St Mary’s have shown that the combination of aspirin and heparin works more effectively than just aspirin alone. As with any drug treatment, one has to weigh up the benefits against the risks: it has been reported that women taking heparin during pregnancy may have an increased risk of osteoporosis (thinning of the bones) and they will need to be monitored. Further larger studies are needed in order to confirm the miscarriage benefits of aspirin and heparin.

Another possibility, instead of either aspirin or heparin, is to use vitamin E. This vitamin can help thin the blood and prevent clots. Aspirin is often recommended for people who are at risk of heart attacks, in order to keep their blood thin and reduce the possibility of a clot. Yet a study published in the Lancet in 1996 found that taking a daily dose of vitamin E reduced the risk of having a heart attack by an astonishing 75 per cent. The scientists heading this study commented that the results were even more ‘exciting than aspirin’. Unfortunately a number of women are now being given aspirin, as a just in case’ measure, without any of the blood tests showing positive to the blood clotting factor.

The recommended dose of vitamin E should be around 400 IU and you should buy the natural form of this vitamin, d-alpha tocopherol.

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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.

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Expect that the first treatment will be a new experience both for you and also for those caring for you. If it goes well, the odds are good that the remaining treatments will, too. Your oncologist may decide to change or adjust the dosage or the anti-nausea medications depending on your reactions following treatment. You may or may not experience a variety of side effects; if you want to know what to expect, ask your oncologist or your chemo nurse to tell you about these. Realize that you personally may experience some, none, or all of the possible side effects. Realize, too, that each treatment cycle may be different.

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Daughters worry both about you and about themselves; their risk of breast cancer does increase a little with your diagnosis, and they will need to be extra careful about monthly breast self-exams, and, after the age of thirty-five, about mammograms. As mothers, we may find it painful to face the fact that we have inadvertently, through no fault of our own, slightly increased our daughters’ breast cancer risks. Remind yourselves that your daughters will be likely to take special care of themselves, since their awareness has been heightened. Also, remember that real advances are being made in prevention and treatment, and we can hope that the incidence of breast cancer will be much reduced in our daughters.

In thinking about the impact of breast cancer on your children, remember that this is not just a disease that affects female body parts. Breast cancer, like many other cancers, affects the whole person and her family. In some real sense, the whole family can feel stricken by this insidious disease.

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? If you are sensitive to noises, pack your Walkman and favorite tapes. Consider using earplugs; you can buy them in any drugstore.

? Even if you are not sensitive to noises, music can be nice to have. Bring something you enjoy listening to.

? You may be sharing a hospital room—an eye mask helps you nap if you’re sensitive to lights.

? While hospital gowns aren’t beautiful, they are practical because they have shoulder snaps or ties. They may be easier to use for the first few days.

? Leave favorite pieces of jewelry, watches, and rings at home. Your family can bring them when they visit.

? Bring your cosmetics, favorite cologne, postcards, or notecards you like to look at and some family pictures. Soft, stretchy headbands or pretty barrettes can help keep your hair under control until you can wash it. You might want to bring some dry (powder-type) “shampoo” to fill in until you can take a shower. Bring (or ask someone to bring in) a blow dryer.

? If you are going to be in the hospital for several days, consider taking some nail polish and asking a friend (after your surgery) to give you a manicure and/or pedicure.

? Tuck some magazines into your hospital kit. It is even possible that you will have the energy to read a book, but bring only light and entertaining reading.

? Bring your own pillow in a pretty case.

? It is okay to bring your favorite quilt, too.

? If you live alone, you may need help at home for a few days. There are resources in every community. Ask your nurse or social worker. Some hospitals have programs prior to your admission that enable you to get this information. When you are given the information about your surgery ask whether there is someone with whom you can speak about home care assistance.

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There are a number of places to ask about groups. The suggestions we made earlier about how to find a therapist would all apply here, too. Additionally, programs such as the Wellness Community or Gilda’s Place offer a number of support groups. Ask whether the groups are professionally led or are peer support groups. Ask who the participants are, and particularly ask about their stage of illness. It is our bias that no one’s needs are best served by being in a group comprised of women who are dealing with all stages of breast cancer. You would be unnecessarily frightened, as women who are very ill are dealing with different issues than those you currently face.

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For more extensive disease and scarring, the gynaecologist may need to do a further operation after the laparoscopy. This might be to try to free up some of the tethered organs by cutting the scar tissue, in the hope of relieving some of the symptoms. Techniques to divide some of the nerves which carry pain messages within the pelvis may be employed by some sutgeons. It is important for the surgeon to try to prevent further scarring from the operation itself.

Microsurgery to reconstruct the fallopian tubes may be attempted if they have been affected by the disease and the woman wishes to get pregnant.

In very severe cases there may be the need for more extensive surgery. Hysterectomy and oophorectomy (removal of the uterus and ovaries) might be performed if the woman and her doctor agree this would be the most appropriate option for her. It is rarely done before exhausting other treatment options, especially if the woman hopes to get pregnant.

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Eating. You are not ‘eating for two’ in quantity, but eating a healthy, balanced diet helps you both. You will need a good diet, because you are doing extra work, and that takes nutrients and energy. The extra energy you will need (particularly after the fourth month) is only about 160 calories, for example about one glass of normal milk, per day.

The developing foetus also needs a good supply of particular nutrients from which it makes bones, blood, nerves, muscles, etc.

The nutrients you both need can usually be found in a varied and balanced diet. The general dietary recommendations we hear these days (low fat, low sugar, high unrefined carbohydrate) make sense in pregnancy, too. A balanced diet is the best way of not missing out on a particular nutrient, and includes daily cereals (for example bread, rice, pasta, breakfast cereal, etc.), fruit and vegetables, milk products, and protein-rich foods.

A few specific nutrients of particular importance in pregnancy include:

• Protein. Extra protein is required during pregnancy. High protein foods include meats (lean red meat, fish, chicken), eggs, lentils. It is recommended that you try to include one to two serves of protein-rich foods per day.

• Iron. This is important when you are making blood cells, which both you and the foetus are doing. Anaemia is the result of a lack of iron and can make you feel weak, tired, and more prone to infections. There is quite a bit of iron in lean meat, kidney, liver, poultry, fish, nuts, dried beans, leafy green vegetables, wholegrain breads and cereals. Iron may be absorbed more effectively if it is eaten at the same time as foods containing vitamin C, like orange juice and tomatoes. It may be less effectively absorbed if large quantities of antacids or dairy products are taken at the same time.

• Calcium. For making bones and teeth you need plenty of calcium. Dairy products, like milk, yoghurt and cheese, are high in calcium. The daily requirement suggested for pregnant women is 600 millilitres of milk, or its equivalent in other dairy products. There are smaller quantities of calcium in other foods, like green vegetables (spinach, broccoli and silver beet), soy beans and fish (with soft, edible bones).

• Folic acid. This vitamin is required specifically for making new cells, particularly blood cells. It is found in liver, kidney, broccoli, spinach, and other green leafy vegetables. It is sometimes lost in cooking, so salads can be a good source. Other foods which contain folic acid include Vegemite, nuts, whole meal bread and avocado. Recent research is looking into possible links between folic acid and spina bifida. Some researchers have recommended folic acid tablets prior to, and during pregnancy to decrease the risk of spina bifida, particularly for those women at higher risk of affected pregnancies.

• Vitamin C. Apart from being renowned for preventing the common cold (which it may or may not do), vitamin C is important in pregnancy. Lack of vitamin C can affect skin, tooth and bone development. It is found in high quantities in citrus and other fruits and jukes, also in tomatoes and potatoes.

• Fats. A balanced diet will contain an adequate amount of fat from sources such as meat, dairy products and cooking oils. Fats contain fat-soluble vitamins, so are necessary for normal foetal development.

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