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For Women with Galactosemia and POI - Your Guide to Taking Action

 

- What is POI?
- For Parents of Daughters with Galactosemia and POI
- For Women with Galactosemia and POI
- Other Resources
- Glossary

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Young womanLearning about POI can be upsetting. You may feel like this it yet one more health problem that you have because of galactosemia. You may feel very sad or upset about this.

The most important thing to remember is that neither galactosemia nor POI defines who you are. There are many other things that are important to you. Don’t let POI take over your life.

It is also important to know that there are things you can do to cope with POI. This guide is designed to help you learn about POI and to come up with a plan to cope with your POI.

Getting support

Some women with galactosemia and POI have said that talking to other women who have had POI has been the number one thing when it comes to coping with POI. You may be able to find other women with POI through meetings for people with galactosemia. If you are internet-savvy, you may want to look at discussion groups online. Just remember that anyone can see what you post online! There are also online support groups and telephone support lines for women with POI. Check out the “Other Resources” section of this guide for ideas on where to go for support.

You do not have to go through this alone. Your family members and close friends can also be sources of support. Think about sharing this guide with them so they can learn more about POI.

Teenager with mother and doctorGetting treatment

It is important that women with POI get treated as soon as possible to prevent health problems. Most women with POI are treated with hormone replacement therapy (HRT). Here are some things to think about when it comes to HRT:

  • There are many types of HRT. HRT can come in the form of a pill, a skin patch, a vaginal ring, or a shot. Work with your doctor to decide what type of HRT is right for you.
  • If you feel any side effects from HRT or if you do not like the way the HRT makes you feel, speak up! There are many types of HRT and you may need to try a few before you find one that works for you.
  • Some HRTs are also used as birth control for women without POI. Even though pregnancies are rare in women with POI, some women to become pregnant. If you are not trying to have a child, make sure that you use a different type of birth control, such as condoms, to prevent unplanned pregnancies.

Talking to your doctor

There is a lot to know about POI, and you will probably have a lot of questions. The way you act can have a big effect on how your doctor talks with you. Here are four tips to help you work with your doctor to learn about POI.

  • Some women freeze up or forget what they wanted to ask when they meet with their doctor. It is okay to bring a list of questions with you. You can also ask your parents or another family member to help you remember what you want to ask.
  • If your doctor is using big medical words you don’t know, ask him or her to be clearer.
  • Some people find it easier to learn about POI though visuals. Ask your doctor to use a diagram, a drawing, or a 3-D model of the female body to show you what POI means.
  • POI is nothing to be embarrassed about, but you may have questions you’d rather not ask in front of your parents. Ask to meet with your doctor one-onone. Your parents will understand.

Talking to your partner

Couple talkingIt can be very hard to talk to your husband or partner about POI, but it is also very important. Any serious partner should know about your POI so you can come up with a plan for the future together. It is also important that he know so he can be there to support you. It is hard to say exactly when you should tell a partner about POI, but if you are in a serious relationship you may want to think about these questions:

  • When will I tell my partner about POI?
  • How open will I be about this?
  • What can he do to help me cope with this?

Some women with POI worry that they will not be able to find a loving partner because of their POI. This is not true. Your womanhood and femininity are not defined by your ability to have children on your own. The right person will love you for who you are.

Learning about your choices

It can be hard, but try to deal with the health problems and emotional issues caused by POI before you think about having kids. Once you do this and you are ready, talk to your doctor to learn details about the options that you have. He or she may refer you to a doctor who specializes in helping women get pregnant.

Here are some basic facts about some of the choices you have:

  • Most women with galactosemia and POI will have a very hard time getting pregnant. However, some women will have children. There is no way of knowing in advance which women will have children. Some couples will decide to wait and see if they get pregnant on their own. If you choose this option, you may want to find out if your partner is a carrier for galactosemia. If he is, your child may have galactosemia.
  • Adoption is an option for some young women with POI and galactosemia. There are many children who need a home. Many couples who cannot have a child find adoption to be very rewarding. There are, however, some things to think about. If you are thinking about adoption, it is important to learn as much as you can about the process, the costs, the legal issues, and the possible emotional effects. For more information about adoption resources, look in the “Other Resources” section of this guide.
  • In-vitro fertilization (IVF) is a medical procedure where an egg from another woman is fertilized with your partner’s sperm and then inserted in your uterus. Some women with galactosemia and POI have had success with this method. However, this method can be costly and it may not always work. Make sure you learn about the pros and cons of IVF. For more information about IVF, talk to your doctor or get in touch with one of the resources in the “Other Resources” section of this guide.
  • Some women with galactosemia will chose to wait before they try to have children or to live their lives without having children. If this is your choice, remember that HRT does not act as birth control in women with POI. Make sure you use another type of birth control to prevent unplanned pregnancies.

Whatever you decide, it is important that you learn as much as you can about all ofyour options. The next section includes a list of resources that can help you learn more.

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PDF Click here for a complete, printable PDF of this guide.
Click here to order a full-color, paper booklet of this guide.