Emotional, physical and practical considerations of ART

''Whatever you do, I think you have to be looking after yourself as best you can. It is important to acknowledge that this is a really hard time in life. What makes it so difficult, is that you don’t know what the outcome’s going to be. '' Anne

Possible emotional effects of ART

ART treatment is psychologically demanding and emotional health effects are common.

In Australia, counselling services are available in all IVF clinics. Women who have IVF treatment and their partners are encouraged to use these if they experience emotional difficulties. Women often experience symptoms of depression and anxiety during IVF treatment, particularly when waiting for results after embryo transfer and when treatment fails. For some people, deciding whether to continue or stop treatment can be difficult. Couples who have frozen embryos that they are not intending to use often find it hard to decide what to do with these embryos. For some couples the strain of IVF causes relationship problems but others describe feeling closer and able to support each other through the demands of treatment. In the first few months after giving birth, women who conceive with IVF have a higher rate of parenting difficulties than women who conceive spontaneously, including anxiety about caring for the baby. However, these difficulties improve with time. The rate of exclusive breastfeeding three months after the birth is lower after IVF than spontaneous conception and this may be related to worry about the ability to nourish the baby. When IVF fails, people often feel very disappointed and sad. However, follow-up studies show that within a few years of ending treatment, there are very few differences in terms of emotional wellbeing and life satisfaction between those who had a baby as a result of IVF and those who did not.

Possible physical effects of ART

During treatment

Physical complications requiring hospital admission occur in about one per cent of all stimulated treatment cycles. The most common complication is ovarian hyperstimulation syndrome (OHSS). This syndrome can develop as a result of the fertility drugs which are used in IVF to stimulate the ovaries to produce multiple eggs. OHSS is a potentially serious condition which, in very rare cases, can lead to blood clots, kidney failure and death. In 2008, 198 women (0.6 per cent of all stimulated cycles) were hospitalised as a result of OHSS. All IVF programs monitor patients carefully to minimise the risk of OHSS. If a patient develops an excessive number of follicles in response to the fertility drugs the patient’s doctor may recommend that the cycle be cancelled before egg collection to avoid OHSS. Or, if the doctor has reason to believe that the patient is at risk of OHSS after the egg collection procedure, the advice may be to freeze all the embryos and then transfer them, one at a time, when the ovaries return to normal. Surgical complications which require hospital admission, such as bleeding and infection from egg collection, occur in less than 0.5 per cent of IVF cycles. The risk of serious complications from general anaesthesia and sedation is approximately one in 50,000 treatment cycles.

Long-term

There have been very few studies examining long-term health effects of IVF for women, other than some studies relating to cancer. Those undergoing treatment are often concerned that the use of fertility drugs may increase a woman’s risk of cancer. A number of large studies have investigated the relationship between the use of fertility drugs and breast cancer. Combining these studies, the risk of using fertility drugs has been investigated in over 45,000 women and no overall increase in the rate of breast cancer has been found. Ovarian and uterine cancers are much more uncommon and therefore more difficult to study. However, most studies have shown no significant increase in the risk of developing these cancers due to fertility drugs. Some studies have raised questions about whether there is an increase in cancer risk associated with the duration of fertility drug use, or use of specific types of fertility drugs among certain groups of infertile women. To date there is no conclusive evidence that these factors increase the risk of cancer. Although the findings of these studies are reassuring, it is important to remember that IVF has only been available for just over 30 years and that it is only in the last two decades that IVF has been used by large numbers of women. Therefore, questions remain about the very long-term risks of using fertility drugs, particularly for rare forms of cancer. Also, little is known about the effect of fertility drugs in women with a strong family history of breast or ovarian cancer, or in women with a personal history of cancer prior to fertility treatment.

Possible health effects of IVF

Coping with treatment

Finding support

IVF treatment is emotionally demanding and it is common for people to feel sad and worried during the ups and downs of treatment, particularly when waiting for results after embryo transfer and when treatment fails. It’s important to know that there is no evidence that worry or sadness reduces your chance of success with IVF.

For some people, deciding whether to continue or stop treatment can also be difficult. In Victoria counselling services are available in all IVF clinics for individuals or couples if they experience emotional difficulties.

Here are some suggestions to help you through what is commonly called 'the emotional rollercoaster' of IVF treatment.

Research shows that social support is very helpful when dealing with the demands of IVF treatment. Depending on your circumstances you may be able to receive support from your partner, family members, friends or work colleagues. For some, professional support from a counsellor or a member of the IVF team can be beneficial. Having several sources of support is often useful and if you reach out you are likely to find people who are more than willing to listen and help in any way they can.

Staying informed

Knowing what your options are and feeling that you are making well-informed decisions about your treatment can be helpful and make you feel in control. Clinics have many resources to help patients learn about and understand all aspects of treatment. Doctors and nurses are also useful sources of information and talking to them about what to expect can be valuable.

Having a plan

Setting limits for the number of treatment cycles you will have before assessing whether or not to continue IVF treatment can avoid the temptation of ‘trying just one more time’. If you have one or several unsuccessful treatments it’s important to talk to your doctor about how your results in terms of number of eggs, quality of embryos etc can be used to predict your chances of having a baby if you continue treatment. If, on the basis of this discussion, you decide to have more treatment it may be useful to agree on how many more times you try. Deciding to stop treatment can be emotionally very difficult and you may find it helpful to talk to a clinic counsellor about how to manage this.

How IVF impacts your relationship & emotional & physical wellbeing: Dinah & Ben's story

How to do things differently with the benefit of hindsight: Dinah & Ben's story

The effect of IVF on the relationship: Ann & Alister's story

Managing and balancing employment

Balancing employment and treatment can be challenging. During treatment you have to attend the clinic for appointments and this can disrupt your work. However, to generate an income and keep life outside of treatment as normal as possible are reasons why some women prefer to continue to work full-time. Others choose to work part-time or not to work at all. It is important to know that whether you decide to work full-time or not at will not affect the outcome of the treatment.

IVF treatment - support for the jouney and impact on work: Dinah & Ben's story

Dealing with work and IVF treatment: Ann & Alister's story

Taking time off work

Treatment can impact on your work as you will need time off for appointments and medical procedures. You are not obliged to tell your employer that you are undergoing reproductive treatment but you may need to supply medical certificates for time taken off work. If you trust your manager or human resources representative, it may be beneficial to confide in them. If your organisation has an Employee Assistance Program you may choose to use the confidential counselling offered.

If possible, give your employer advance warning about dates you may be absent. If you have important work dates or travel commitments, inform the clinic nurses at the beginning of your treatment cycle. It may be possible to modify your medication to suit your timetable. If not, ask the nursing staff for approximate dates and times to help with planning your work schedule.

To tell or not to tell colleagues

It is an individual decision whether to discuss your treatment with work colleagues and your manager. If you think they are lkely to be supportive it may be helpful as you will not need to explain absences.

Working with pregnant colleagues or listening to conversations about a colleague’s children can be difficult. You may be asked questions you do not wish to answer, such as when you are going to start a family. Prepare your responses. If you have decided not to tell people at your workplace about your treatment, you will also need to prepare explanations for your absence from work.

If you have decided to be open with your manager and colleagues, you might need to teach them about ART. Consider giving them brochures from your clinic or suggest they visit the VARTA website. If confidentiality is important to you, be clear that your private information should not be shared.

After reproductive treatment

When people decide to stop treatment there can be a number of issues to consider. The information in this section is designed to give you tips for your post IVF journey.

Pregnant after IVF

After IVF it can sometimes take a while to process being pregnant and women sometimes worry about losing the pregnancy. If an early ultrasound has confirmed your pregnancy and everything appears normal, your chances of having a healthy baby are good.

During pregnancy

Many symptoms of pregnancy can be unpleasant so you might find you are not enjoying being pregnant as much as you anticipated. Some women are reluctant to express any negative feelings because they feel that they have been lucky to become pregnant. But, ambivalence is normal and acknowledging that becoming a parent involves losses as well as gains is a healthy way to prepare for the transition to parenthood.

IVF treatment - being pregnant: Dinah & Ben's story

When the baby is born

Life with a new baby can be very challenging, even if the baby is very wanted and it has taken a lot of effort to conceive. Parents of IVF-conceived children are older and more likely to have a caesarean birth and a multiple birth than other parents. Also, IVF babies are more likely to be born earlier and have a lower birth weight. The experiences of infertility and medical intervention can lower confidence and increase anxiety about the baby’s health and well-being. Taken together, all this can make the first few months with the new baby quite overwhelming. Accept offers of practical help and support and seek help if you have trouble feeding or settiling your baby. At www.whatwerewethinking.org.au you can find information about common experiences in the early months of parenthood and some effective ways of thinking about and managing them.

IVF treatment - being a parent post IVF: Dinah & Ben's story

IVF treatment - coming to terms with the end of treatment: Dinah & Ben's story

Having another child

It can be difficult to decide whether to try to have another child. You may face issues such as ageing, peer pressure, desire for your child to have a sibling, or simply a yearning to have another baby. If you do not have frozen embryos stored, you may feel daunted by the prospect of further ART treatment. If you want more children but have been unable to become pregnant, this can be distressing. You may think you should feel grateful to have been able to have a child, however it is normal to want more children and to be sad if this is not possible. It might help to seek counselling via your clinic.

Excess embryos

It can be difficult to decide what to do with remaining embryos if you choose not to try for another baby. You may have thought when you started your treatment that you would donate them to someone else or to research. However this can change after you've had a baby. There are a number of options to consider. To help you make the best decsion for you and your partner (if you have one) VARTA has developed a decsion tool. Talking to your doctor or the clinic counsellor can also be helpful.

Explaining ART to your child

As your child grows older, baby-making is likely to become a topic of conversation in your family. Explaining conception can be difficult and complexities of ART add to this. Children are usually fascinated by the details of their conception and birth and as long as the information is age-appropriate they will most likely enjoy hearing the story about how they came to be. There are a number of Australian picture books that could help you explain ART and IVF to young children.

Books for donor offspring

Stopping treatment

The decision to stop treatment can be more challenging than the decision to start. Even if you suspect that treatment might not work, it can be tempting to have just one more cycle. You may find this checklist helpful when you try to decide if you should end treatment.

Have all treatment options been explored?

Review your past treatment with your fertility specialist and ask whether there are any other options to explore and what the chance is of the current treatment working if you continue. This may be a good time to seek another medical opinion.

Is treatment affecting you?

Do you no longer feel like your 'old self'? Is it getting more and more difficult to front up for treatment? Is it affecting your mood? Do you often feel you have little energy, feel flat, grumpy and out of sorts? Is it affecting your friendships, your work? These may be signs that it is time to stop.

Is treatment putting pressure on your relationship?

Treatment can take its toll on relationships. Both partners can feel stressed and worn down by the pressure infertility and treatment can bring. A couple's sexual relationship can suffer as a result. Stopping treatment can remove this pressure and allow the relationship to be rekindled.

Is fertility treatment causing you to put your life on hold?

Have you put on hold decisions to move house, change jobs , travel, study or other important life plans because you are waiting for treatment to get pregnant?

Is fertility treatment putting a strain on your finances?

Fertility treatment is expensive. Is it time to reassess whether further expenditure is really worth it? This may seem rather mercenary but the financial cost of treatment can be one of the factors in a decsion to end treatment.

Have you considered any alternatives to biological parenthood?

Although most people's first priority is to be the genetic parent, this may not be possible. How essential is this to you? Have you considered donor treatment? Fostering, adoption and permanent care may also be alternatives. You may also consider being more involved in the children around you or volunteering for Big Brothers Big Sisters Australia, sporting or other community programs involving children. Whilst these options can not be compared to having children of your own, they can provide a lot of satisfaction and help fulfill your nurturing needs.

Have you considered child-free living?

What makes you happy and fulfilled? What are your life goals other than having children? Can you imagine a satisfying life without children? What would that look like? Is there anything you might like to change in your current situation including career, where you live, and your life outside work?

Even if you decide that you are not ready to stop treatment now, it can be helpful make a plan. You may base this on a certain number of cycles, or by a particular age or time of year. If you have never contemplated a child-free existence then you may need to do some serious thinking and seek counselling.

Stopping treatment is hard...

It hurts. It involves sadness and letting go of the life you planned. There is no quick fix solution to get through this. Allow yourself to grieve for the child/ren you hoped to have. This is a particularly complicated grief as it is often intangible and hidden. Those around you may not understand what you are going through. It may be hard to put into words exactly what you have lost. It involves the loss of being a parent, of passing on your genes, being a grandparent, and being part of a wider community who have children.

Strategies for moving on

Moving on from IVF might invovle a major reassessment of your life and significant readjustment. This can be similar tochallenges people face when they retire or their children leave home. Children alone do not bring happiness. Ask your self: 'What will give my life meaning? Is it possible to find the satisfaction I had hoped to achieve from children in another way?'.

When IVF fails, people often feel very disappointed and sad. However, follow-up studies show that within a few years of ending treatment, there are very few differences in terms of emotional wellbeing and life satisfaction between those who had a baby as a result of IVF and those who did not.

Deciding to stop treatment: Ann & Alister's story

A life after IVF: Ann & Alister's story

People who have embryos in storage sometimes find it difficult to decide what to do with those they do not plan to use. The most common reason that people report for stopping treatment is that they have completed their families. However, illness, separation or other circumstances may also prevent people from using their stored embryos. Victorian legislation specifies storage limits for gametes and embryos.

Options for unused embryos

There are four options available when deciding what to do with unused embryos stored in Victoria. Not all options may be available at your clinic but it may be possible to transfer your embryos to a clinic that does offer your preferred option.

Take time to think through all your options, including whether you want to try for another child. If you have a young family, it may be difficult to imagine having the energy, time, or income to manage another baby. However, your thoughts may change as your children grow older.

1. Continue to store the embryos

After five years of storage, the clinic where your embryos are stored will contact you and ask what you want to do with the embryos. If you want to continue storing the embryos, the clinic can grant you a five year extension. If, after 10 years, you still want to keep your embryos stored, you must apply to the Patient Review Panel for permission. The clinic will contact you to alert you that storage time limit is approaching and provide you with the application form you need to complete if you want to extend the storage time. In most cases, approval to extend storage is granted, provided satisfactory reasons are given.

Examples of reasons that are likely to allow you to continue storage are:

you are still having treatment
you wish to have a child in the future
you have a medical condition that temporarily prevents you from using the embryos.

You are also able to apply to the Patient Review Panel for extended storage time before the embryos have been stored for ten years. This option may be useful if you need medical treatment that may affect your fertility.

2. Disposing of the embryos

The microscopic stored embryos are kept in sealed fine plastic tubes known as ‘straws’. Disposal of embryos involves these straws being removed from cold storage and left at room temperature for at least 24 hours. They are then discarded. If you have particular wishes about the disposal, you can discuss these with the clinic staff. It may be possible to take the embryos home after they have been allowed to succumb in the laboratory. For example, some people have buried the straws and planted a tree.

3. Allowing the embryos to be used for research

You may donate your embryos to research or to be used by embryologists in training. Research may include investigations of why some embryos survive and others do not, new techniques and procedures, or ways to improve assisted reproductive treatment outcomes. Each person whose gametes have been used to form the embryo (including the donor in cases where donor gametes have been used) has to consent in writing to the specific research project for which the embryos will be used. You will be given written information about the research study for which your embryo/s may be used, and an opportunity to talk to someone about it.If you decide to donate your embryos to research, it is important to know that embryos offered for research may be discarded. This is because many more embryos are donated to research than are needed.

4. Donating the embryos to another person or couple

You may donate your embryos to someone you know or to an unknown recipient chosen by the clinic, providing the embryos are suitable for donation. It is important to think through whether you feel comfortable about donating your embryos because, if a child is born, this will have lifelong significance for you and your family. The meaning and significance of embryos are not the same for everyone. Some people feel unable to donate their embryos because they consider them to be potential children and connect them emotionally to their existing children. Others feel differently and are comfortable with embryo donation.

Deciding what to do with unused embryos

Some people find it relatively simple to decide what to do with unused embryos. Others find the decision challenging and distressing. Many people choose the least uncomfortable option. It is a very personal decision that may challenge your ethical or religious views and ideas about the significance of embryos. When you started IVF treatment, you may not have thought about unused embryos, your views may have changed over time or since having children. You may also have a different view to your partner, the donor (if you used one) or your family. In situations where one partner wants to end treatment and the other wants to continue, when partners have separated, or when one partner is willing to donate the embryos but the other partner is not, the decision is likely to be particularly difficult.

The interactive Decision tool assists with decision-making for people who are having difficulty making their mind up. Decision tools are commonly used in other areas of health care to help patients resolve difficult choices around possible treatment options.

What to do with your unused embryos?

What to do with you unused embryos? Decision tool

If you have embryos in storage in Victoria and are deciding what to do with them, we invite you to use the Decision tool and complete the online survey.

Decision Tool Evaluation Survey

After your decision

Once people have arrived at a decision, some feel relieved. Others may be surprised to feel a strong sense of loss as the discontinuation of embryo storage confirms the reality that they may not have a child/another child. There is no right or wrong way to feel; every response is legitimate.

When you have made your decision, you need to complete a written consent form instructing your clinic what you want to do. If a donor’s gametes were used to form the embryos, the donor also needs to sign a consent form. Clinic staff can advise you about the consent process.

Tip

It is important to find sources of support and ways of dealing with the stresses of ART treatment.

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