Fertility after a stem cell transplant

Does having a stem cell transplant affect fertility?

Yes, having a stem cell transplant can affect you being able to get pregnant, or get someone else pregnant. There are a few reasons why:

Conditioning therapy (chemotherapy and radiotherapy)

Conditioning therapy prepares your body for a stem cell transplant and it can affect your fertility. This will depend on two things:

• The type and dose of conditioning therapy you have. Reduced-intensity conditioning therapy may cause temporary fertility issues or no issues at all. High-intensity, including total body irradiation (TBI), may cause permanent infertility.
• Your age. The younger you are, the less chance your fertility will be affected in the future.

Your medical team will know the likelihood of your conditioning therapy affecting your fertility.

If you are biologically male, conditioning therapy can:

• reduce the number of sperm you produce (or stop production completely)

• stop sperm being able to fertilise an egg
• affect how testosterone (a male hormone) is made
• delay puberty, if you are a child or teenager.

If you are biologically female, conditioning therapy can:

• reduce or damage the number of eggs in your ovaries and how they are released
• affect your hormone levels and your pituitary gland
• affect your cervix, womb or ovaries
• delay puberty, if you are a child or teenager.

You may hear the terms ‘a reduction in ovarian reserve’, ‘ovarian insufficiency’, or ‘ovarian failure’. These terms sound clinical and negative, and may not be helpful for you to hear if you are hoping to have children after your stem cell transplant.

Try to not think the worst if you hear these terms. It is important to be realistic but also stay hopeful and empowered. Your fertility will be affected differently to someone else’s fertility, even if you have been given the same label. It is not so black and white. Explore all your options to get the best picture for your individual situation.

If the treatment [using an egg donor] is successful, it will mean we can have a child that is biologically related to my husband, which I will carry and give birth to. To me this is very different to what I thought I was being told when the phrase "permanent infertility" was used.

Jacqui, who had a stem cell transplant to treat acute myeloid leukaemia (AML)

Early menopause

If you are biologically female and your conditioning therapy has affected your fertility, you may experience early menopause. If this happens under the age of 40, it is called Premature Ovarian Insufficiency (POI).

You may experience early menopause as a late effect of your stem cell transplant, so it’s important to be aware of the symptoms. Some symptoms are:

• hot flushes (suddenly feeling very hot and red)
• missing periods or periods stopping completely
• vaginal dryness and feeling uncomfortable during sex
• not wanting to have sex (knowing as low libido or low sex drive)
• struggling to sleep and sweating during the night
• feeling low or anxious
• struggling with concentration or your memory.

If you experience early menopause, you can be given HRT (hormone replacement therapy) or the combined contraceptive pill to replace your missing hormones. Menopause can be challenging, so to experience it at a young age can feel overwhelming, lonely, and unfair. But you’re not alone. You can read more about early menopause and POI, and find lots of support, at Daisy Network.

Low sex drive

It’s common to have less interest in sex after a stem cell transplant. This can be tricky to deal with whether you are in a relationship, dating or single, but especially if you’re hoping to have children.

Read our Sex and Relationships webpage to find out more information, tips, and stories from others who have been in similar situations.

Genital GvHD

Genital graft versus host disease (GvHD) can be uncomfortable, and may feel embarrassing. You may find it too painful to have sex.

Symptoms of vaginal genital GvHD include:

• vaginal dryness (feeling sore or itchy around your vulva and vagina)
• narrowing of the vagina
• scarring or ulcers in the vagina.

You may be referred to a gynaecologist to treat these symptoms with a steroid cream or gel.

Symptoms of genital GvHD on the penis include:

• a rash on the penis
• ulcers on the penis
• feeling pain or discomfort when having a wee
• difficulty keeping an erection.

You may be referred to a urologist to treat these symptoms with a steroid cream.

Genital GvHD is a common side effect of a stem cell transplant. Your medical team will have seen it all, so try to not feel embarrassed speaking to them about it. The quicker you get treated, the quicker it can be sorted.

Read more about GvHD.

Low self-confidence

Your body can go through lots of changes because of your stem cell transplant. You might:

• lose your hair
• lose or gain weight
• have dry, red or blotchy skin due to GvHD
• experience genital GvHD.

It’s common to struggle with your confidence and identity after experiencing these changes. When it comes to having sex, you might not feel up to it at all. This is totally fine and you should never feel pressured to have sex. You have to take care of yourself first and do things at your own pace.

Read our Sex and Relationships and Body Image webpages to find out how you can build your confidence back up, have vulnerable conversations with partners, family and friends, and read stories from others who have had similar struggles.

Changes in relationships

Having a stem cell transplant may bring you and your loved ones closer together, or it may push you apart. It can be a complicated time where relationships, priorities, and responsibilities change.

Experiencing all the changes above can be a lot to process within a relationship even without the prospect of having children. Try to take things one step at a time, and communicate openly and honestly. Go easy on yourselves.

Read our Sex and Relationships and Your relationships with others webpages to find support on this topic.

Lifestyle changes and new perspectives

A stem cell transplant can save your life. It might be a final treatment option for you after a long journey post-diagnosis. You’ve probably been through a lot already. So it’s very normal to re-evaluate your life and future. This includes whether or not to have children. You might think:

• 'My life is full of love, I want to have children to share that.'
• ‘I’ve missed out on so much fun – I want to have more adventures without children first.’
• ‘Life is so short and can be taken away quickly. I want to have children earlier than I thought.’
• ‘My body has been through a lot. I want to love myself again first.’
• ‘I thought I knew what I wanted. Life has been intense and now I’m not so sure...’

Or you might think all of these one after the other, or all at once!

And you’re not alone. In one particular research study, 47% of female patients said that their treatment journey has modified their desire for pregnancy.

So don’t panic about feeling conflicted, confused or overwhelmed by your priorities changing. Stay open to your options, and make sure you talk with family, friends or a counsellor about how you’re feeling.

What are my options for having children after a stem cell transplant?

My advice would be to push for a fertility referral after treatment, so you can know for sure that you've had personalised advice for your situation. "Infertility" is actually a complicated concept and doesn't always mean you can't find a way to have children.

Jacqui, who had a stem cell transplant to treat acute myeloid leukaemia (AML)

Preserving your fertility before transplant

You may have the option to have fertility treatment before your stem cell transplant.

It’s possible to collect and freeze your:

• eggs
• ovarian tissue
• embryos (eggs that have been fertilised with sperm).

Collecting ovarian tissue is a relatively new procedure. It is not widely available in the UK and there is little evidence of its success.

It's also possible to collect and freeze your:

• sperm
• testicular tissue, if you have not gone through puberty.

Collecting and freezing sperm is a much quicker process than collecting and freezing eggs, ovarian tissue, or testicular tissue.

Collecting and freezing testicular tissue is in the early stages of research. It is not widely available in the UK and there is no evidence yet of successful pregnancies using this tissue.

You can read more about common fertility treatments on the Macmillan website.

Thankfully, the medical team arranged a fertility appointment before starting chemotherapy, and waited for confirmation before proceeding to treatment. Luckily as a man, the process was much more straightforward than for women.

Richard, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

IVF

When you are ready to have children after your stem cell transplant, your eggs, sperm, tissue or embryos can be thawed (unfrozen) and used in IVF (in vitro fertilisation).

IVF is when eggs and sperm are combined together in a dish in specific conditions outside of the body. They then hopefully form embryos, which are then put inside your, your partner’s, or a surrogate’s womb to carry the pregnancy.

Read more about how IVF works on the NHS or Human Fertilisation & Embryology Authority (HFEA) websites.

Using donor eggs, sperm or embryos

You could explore this option if:

• you were unable to freeze your own eggs, sperm or embryos
• you are able to carry a pregnancy even if your ovaries are damaged.

All potential donors go through medical checks before they can donate. You can choose a donor based on things like ethnicity and eye colour.

There is a shortage of donors but your fertility clinic will be able to advise whether this is a good option for you. You will need IVF to use a donor’s eggs, sperm or embryos.

Only by pushing hard for a fertility appointment did I discover that with HRT my reproductive system could regain the necessary functions for me to have IVF with donor eggs. I am currently preparing for this treatment, and have been told by fertility experts that there is a good chance of success.

Jacqui, who had a stem cell transplant to treat acute myeloid leukaemia (AML)

Does this fertility treatment cost money?

The cost of fertility treatment depends on where you live, and whether you choose to go through the NHS or a private clinic.

Your GP or medical team can help you find out what free NHS options are available in your area. The NHS may pay for a certain number of ‘rounds’ of IVF or may have certain rules.

If you choose to go to a private clinic, you can avoid waiting times and NHS rules, but will have to pay.

Surrogacy

Surrogacy is when someone else carries a pregnancy and has a baby for you.

This might be an option for you if you could freeze your eggs, sperm or embryos but you, or your partner, cannot carry a pregnancy. You could also use donor eggs, sperm or embryos, or use an egg from the surrogate.

Surrogacy can be complex. You can find lots of information and support on the SurrogacyUK website.

All these sources I found said the same thing: "If you've had a stem cell transplant, you'll probably be permanently infertile." This message isn't helpful. I understand that they are not wanting to give false hope. But it assumes that 'fertility' is understood by everyone to mean "having a child with your own eggs." I understood it to mean my uterus was somehow ruined and useless, which isn't true.

Jacqui, who had a stem cell transplant to treat acute myeloid leukaemia (AML)

Adoption

If you cannot, or don’t want to, have fertility treatment but still want to have children, then adoption may be an option for you.

The adoption process is not easy. You have to pass tests, including medical ones, so it may feel long and frustrating. But it might be an option worth exploring.

Speak to your local social services department, or a charity like Adoption UK, if you are interested in adoption.

Getting pregnant naturally after a stem cell transplant

You may still be able to conceive naturally without support (like IVF). You can find more information and advice below in When can I try to get pregnant after a transplant? if you want to have sex after your transplant, whether or not you want a baby.

When can I try to get pregnant after a stem cell transplant?

Your medical team will be best placed to advise you on when you can safely try to get pregnant, or get someone else pregnant, after your transplant.

In general, doctors tend to advise waiting at least six months to allow your body to recover from treatment. Some advise waiting two years after treatment. This is because you are less likely to relapse after two years.

If you get pregnant, there is no evidence to suggest that your conditioning therapy and stem cell transplant will harm a growing baby. However, there is some evidence to suggest that:

• you might go into labour and deliver your baby earlier than full-term
• you might need a caesarean
• your baby might be a lower weight than average when they’re born.

For these reasons, you may be considered high risk, and you will be closely monitored throughout your pregnancy.

Read more about having sex before or after a stem cell transplant on our Sex and Relationships webpage.

Who do I need to talk to about my fertility options?

It's important to talk to your medical team about any fertility worries you have as soon as possible before your treatment starts.

Speak to your medical team and ask to be referred to a fertility clinic. You can access a fertility clinic through the NHS or privately.

NHS options will depend on the area you live in. You can find private fertility clinics on the Human Fertilisation & Embryology Authority website.

It’s important to have these conversations as soon as you can because it can take a while to go through the fertility preservation process. It can take few weeks to go through the process of having your eggs collected, for example, and sometimes there is not enough time before your transplant.

It’s a quicker process to collect ovarian tissue, and even quicker to collect sperm, but should still be organised as soon as possible.

Talking about your fertility can feel very vulnerable. You might feel:

• embarrassed talking about such a sensitive and personal topic
• ungrateful if you’re asking to delay your transplant
• silly if you feel your fertility is not as important as your stem cell transplant
• dismissed by medical professionals, or even family and friends.

You have every right to feel that your fertility is as important to you as your stem cell transplant. Make sure you have all the information you need and options available to you so you can make the best decisions for your own health and future.

It’s normal to feel nervous or lost. Here are some questions you could ask your medical team:

• Is my fertility likely to be affected by having a stem cell transplant?
• When will I know if my fertility is affected after transplant?
• What are my fertility options?
• Can I be referred to a local fertility clinic?
• Is it possible to delay my transplant to have fertility treatment?
• Can my fertility be tested after my transplant?
• This is causing me some anxiety. Is there anyone I can talk to about my fertility worries, like a counsellor or fertility specialist?

How do I talk to my partner, family, or friends about my fertility?

It’s important to talk to your loved ones about any worries you might have about your fertility and your stem cell transplant. You don’t have to go through this alone.

You might have to make some difficult decisions or have tricky conversations with your medical team, so it’s important to keep loved ones well informed and on your side.

It can still feel hard to have these conversations with loved ones. You can read some tips and conversation starters on our Sex and Relationships webpage which might help.

I'm a teenager. Do I need to worry about this yet?

I'm a teenager. Do I need to worry ab

There is so much to think about when you need a stem cell transplant. Thinking about your future with children is probably the last thing on your mind. It can feel overwhelming, especially as a teenager. Being a teenager is hard enough!

Thankfully, the younger you are when you have your transplant, the less likely it is your fertility will be permanently affected. But it’s important to make sure you have conversations about your fertility before your transplant. It’s important even if you don’t know whether you want children or not in the future.

If you have been through puberty, you have the same options to preserve your fertility as the options listed in the What are my options for having children after a stem cell transplant? section above.

The teenage cancer charities below have some great information and support for people in similar situations to you. Hopefully their information is relatable even if you don’t have a cancer diagnosis:

• Teenage Cancer Trust: How cancer treatment can affect fertility
• Young Lives vs Cancer: Will cancer treatment affect my fertility?
• Teenagers and Young Adults with Cancer (TYAC): Fertility

My child is having a transplant. Do I need to think about their fertility?

It might feel surreal to think about your child’s fertility even when they’re not sick. It’s often not something you think about until your child is an adult.

So it probably feels even more surreal to think about your child’s fertility when they need a stem cell transplant to save their life. Saving their life is the obvious priority. You might be thinking:

• I just want my child to survive.
• I want my child to have a future full stop – I don’t care what that looks like.
• I have so much to think about. Fertility is not on that list.
• My child is just a child. I shouldn’t be thinking about their fertility.
• How am I meant to make these big decisions for my child?
• My child won’t understand. How do I explain this to them?

All these thoughts, and more, are valid. It's a complex and overwhelming situation.

Thankfully, your child's fertility is less likely to be affected as they are young. But your child’s medical team will know their situation best, so be sure to have conversations with them.

In general, here are the options for preserving your child’s fertility:

If they have been through puberty:

• Sperm can be collected, like for adults. This can be done by masturbation, or in a procedure while they are sedated or under general anaesthetic.
• Eggs or ovarian tissue can be collected, like for adults.

If they have not been through puberty:

• Testicular tissue can be collected as they will not yet have sperm to collect. This procedure is in the early stages of research. It is experimental with no evidence of success.
• Ovarian tissue can be collected. Ovarian tissue contains immature eggs which can be put back after transplant. This procedure is not widely available in the UK. It is still experimental with no clear evidence of success.

It can be tricky to know what to do for the best for your child. Be sure to ask all the questions you have, express your worries, and explore all options with your child’s medical team.

I'm already pregnant and need a stem cell transplant

If you are pregnant when you are told you need a stem cell transplant, your medical team will know the best course of action.

You might be able to delay your treatment but that might not be possible. It will depend on your diagnosis, prognosis, and how far along you are in your pregnancy.

In general, if you are:

• 0-14 weeks, you should not have conditioning therapy as this can harm the development of the baby.
• 14-37 weeks, you may be able to have certain types of conditioning therapy.
• 37+ weeks, you should not have conditioning therapy and may be induced to deliver your baby early, if it is safe to do so.

You might have some hard decisions to make. Before you make any decisions, make sure you have:

• all the information and conversations you need from your medical team
• lots of support from family, friends, and any other network or professionals.

Can stem cells help with fertility?

Stem cell therapy is a developing treatment area undergoing lots of research – there's still lots we don’t know. Stem cell therapy may be able to help with infertility in the future.

Anthony Nolan supports people going through a stem cell transplant, not stem cell therapy. We encourage you to do your own thorough research on this.

Where can I find more information and support?

Hopefully you’ve found some helpful information and support on this webpage. If you’d like to explore more, there are dedicated charities and organisations offering information, support, and community networks on infertility, and cancer and infertility. Hopefully you’ll find these resources helpful even if you don’t have a cancer diagnosis.

• Daisy Network offers information, support, and a community for people diagnosed with Premature Ovarian Insufficiency (POI). You can also share your story or connect with others going through similar experiences.
• Fertility Network UK offers information, support, and a helpline for anyone struggling with fertility issues.
• The Fertility Foundation offers emotional and financial support for anyone struggling with fertility issues.
• The NHS website has information on infertility and how to get support on the NHS.
• The Human Fertilisation & Embryology Foundation is a regulator giving impartial and accurate information on private fertility clinics and treatments in the UK.
• Shine Cancer Support has two podcasts about cancer and infertility, featuring information and stories from experts and patients. You can listen to Talking about fertility: Part 1 and Talking about fertility: Part 2, Stories of Infertility after Cancer on their website.
• Cancer, Fertility & Me offers information and support on fertility and cancer, including help on how to make decisions about your fertility and treatment.
• Macmillan has lots of information on how cancer can affect fertility, and support services including a helpline, webchat, and online community if you want to talk about things further.

Extra support from Anthony Nolan

• Our Patients & Families Forum and Facebook page are full of stories, information, and other people who are going through similar experiences.
• You can listen to our podcasts or read our blog.
• Call 0303 303 0303 or email patientinfo@anthonynolan.org to speak to our lovely, supportive team. We’re here for you.