Coping with gestational trophoblastic disease

You might have a number of different feelings when you are told you have gestational trophoblastic disease (GTD). You may feel shocked and upset. You might also feel:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty

You may have some or all of these feelings. Or you might feel totally different. Everyone reacts in their own way. Sometimes it is hard to take in the fact that you have GTD.

Feelings are a natural part of coming to terms with having GTD. All sorts of feelings are likely to come and go.

Coping with loss

If you thought you were pregnant, you will be trying to accept and cope with the loss of your pregnancy, as well as trying to understand your diagnosis. If you have been pregnant your hormones may also be changing, and this often leads to mood changes.

It can take time to adjust to what has happened. So try and give yourself that time. If you have contact with one of the 3 specialist GTD centres in the UK you might be able to talk with a counsellor based there about your feelings. Ask your healthcare team about this.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of GTD and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurses to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it. 

Treatment can cause side effects. These can be mild or more severe. Tell your doctor or nurse if you have any side effects or if they get worse. They can treat them and help you find ways of coping.

Talking to other people

Because GTD is so rare, you might feel isolated. You might not know anyone who has had GTD, and people may not understand what it is.

This might also be a very difficult time for your partner if you have one. It’s possible that you and your partner cope in different ways. 

Talking to your friends and relatives about your GTD can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing. 

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you.

Help your family and friends by letting them know you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family.

The specialist GTD centres have support groups for people affected by any form of GTD. Your local centre can tell you more about this. 

Relationships and sex

If you are having a sexual relationship, changes caused by your GTD and treatment may affect your sex life. If you want to try again for a baby it is natural to wonder about when you will be able to do that and whether you are at risk of another GTD. We have information about fertility, pregnancy and contraception.

Coping practically

You and your family might need to cope with practical things including:
•    money matters
•    financial support, such as benefits, sick pay and grants
•    work issues
•    childcare
•    Blue Badge applications
•    help with travel costs

Talk to your doctor or specialist nurse to find out who can help. Getting help early with these things can mean that they don’t become a big issue later.

Our coping practically section has more information about all these issues.