Sex after a stem cell transplant

Introduction

So, it’s entirely normal to feel concerned that a stem cell transplant might affect your sex life. But it’s also entirely normal to feel awkward and a bit embarrassed talking about this topic with anyone, be it your partner(s) or a medical professional. It’s personal, after all.

That’s why we’re here, and we’re glad you’ve come to us for information and support on this topic.

We’re going to be frank yet sensitive on the topic of sex and stem cell transplants. We’ll give you the tools, information and support to feel you have the power to take control of your sex life and relationships.

So, let’s start with the big question…

Will having a stem cell transplant affect my sex life?

Yes, having a stem cell transplant is likely to affect your sex life in some way. This could be physically, emotionally, or both. In fact, about half of all stem cell transplant patients find they have issues with their sex life after transplant. You may have some post-transplant side effects which can cause sex to be painful or a bit awkward. You might also feel anxious.

Here are the main difficulties you may find between 6 and 12 months after your stem cell transplant:

• You might have a lower sex drive due to high dose steroids. These are used to relieve graft versus host disease (GvHD) symptoms, but can also suppress the production of sex hormones.
• You may feel fatigued during recovery after your conditioning therapy and stem cell transplant. This can make it hard to find the energy for the most basic daily activities, let alone sex.
• Genital GvHD can cause vaginal dryness and irritation. It can also cause narrowing of the vagina and even ulceration in severe cases. Inflammation or a rash on the penis and scrotum are possible too.
• An irregular or missing menstrual cycle can cause vaginal dryness and hot flushes.
• You may have difficulty getting and keeping a full erection. This is known as erectile dysfunction.
• Narrowing of the urethra – the tube in the penis which carries urine and sperm – can cause discomfort. You may also be unable to ejaculate.

Are there any treatments to ease these symptoms?

Your transplant team will give you the best possible treatments based on your medical situation. It’s likely that your treatment plan will include a combination of the following medications:

• Immuno-suppressants can be applied to areas of the skin showing signs of inflammation.
• Steroids can be given to try to reduce inflammation. Drugs to suppress the immune system, called calcineurin inhibitors, can be given to replace long-term steroid use.
• Oestrogen is the sex hormone that causes the lining of the vagina to thicken and become more resilient. It can be given in forms of creams, capsules or release rings.
• Hormone replacement therapy (HRT) can make menopausal symptoms less severe and sex less painful. It can also increase your sex drive.
• Testosterone is the hormone that helps motivate our sexual desire. It can be offered to people of all genders to increase libido and sexual desire.
• PDE-5 inhibitors, such as Viagra, can increase blood flow to the penis and help to sustain an erection. Your transplant team can refer you to an erectile dysfunction clinic where you can find out more. Also read our blog on men’s sexual health after transplant for more information.

When can I have sex after my stem cell transplant?

Your transplant team will know your situation best. They can give you personalised advice on when it’s safe to have sex after your transplant. Usually, it's agreed that you can have sex when you’re comfortable enough to.

Key facts

• You might want to use a condom, or other barrier method like a dental dam, during sex until one week after your chemotherapy has stopped. It is possible the chemo could be passed to your partner(s) during sex. This includes oral sex.
• If you need lubricant, choose one that’s water-based or silicone-based. Oil-based lubricants can dissolve condoms.

• Avoid any sexual practices that put you at risk of infection, such as your mouth being exposed to poo, as your immune system is weaker.
• You may need to experiment with positions which are comfortable with a central venous catheter (CVC, sometimes called a Hickman line). Try positions where you’re on the bottom or lying side-by-side. Mutual masturbation may be a less strenuous option to start with. Or you could have sex for a shorter amount of time. These positions may also help if you’re struggling with fatigue.

How will I know when I'm ready to have sex after my transplant?

There is no right or wrong time to feel ready to have sex again after your stem cell transplant. Everyone is different. It is entirely up to you and how you are feeling. Nobody should pressure you into having sex before you’re ready.

You’ll have been through a whirlwind of emotions and changes post-transplant. Your body has been through a lot physically, from hair loss and weight changes, to having a central venous catheter (CVC) inserted. And there's a lot to deal with emotionally too. It’s common to struggle with this, and to feel unsexy after transplant. You can find more information and support on body image after transplant in our Recovery section.

Give yourself time to feel comfortable in your body again before you think of having sex. Having a growing confidence in your body as it is now and an ability to embrace it is the most important thing. Many patients talk about their sexual desire returning as their recovery progresses. Try to be patient and kind with yourself. You are still you, and your body is still fantastic.

How can I reintroduce sex?

When you want to start having sex again, it’s a good idea to start slowly. Remember: sex can have mental and physical benefits. Perhaps you could:

• Cook a romantic dinner together, cuddle or have a massage. Intimacy is about more than just sex, so go back to basics first.
• Take a love languages test with your partner(s). These can be a fun and interesting way to find out how you give and receive love best, which can be helpful when re-building intimacy.
• Try out less energetic sexual acts or positions, like mutual masturbation, spooning or oral sex. You’ll likely be struggling with fatigue, so low-energy sexual acts are best.

It can help to have honest conversations with your partner(s), friends, family and transplant team about how you’re feeling, about your body image and sex life. Getting your worries and feelings out in the open can help you feel more in control of them, and allow you to seek the support you need.

I feel awkward talking about sex with my transplant team

Talking about sex with anyone can feel awkward and embarrassing – including your partner(s) and close friends. But your doctor and medical team will want what’s best for you, and knowing exactly how you’re feeling will help.

Taking the first step is usually the hardest part, so let’s come up with a plan:

1. Plan a time to talk to them. Would you rather chat about this over the phone? Or in-person at your next appointment?
2. Prepare notes. Write down what you want to bring up. This will help you feel organised when speaking, and you can always hand them your notes if you end up too embarrassed to speak!
3. Manage expectations. Your medical team might feel awkward too — we're all human! If you feel you need more help after speaking to them, ask if you can be referred or access some extra support.
4. Feel empowered. It’s brilliant that you’re thinking about this. It’s great that you’re right here reading up on advice! Feel proud of yourself. You want what’s best for you, your body and your sex life, so go and get it. (But it’s also OK to accept your vulnerability – we're all often a bit nervous talking about something sensitive!)

How can I talk to my partner about sex after transplant?

Having sex and talking about sex are two very different things. No matter how long you’ve been together or how close you are, talking about such a personal topic with your partner(s) can feel awkward.

It’s important to chat about your sex life, both to navigate any physical side effects and to acknowledge any worries. A great sex life comes with great communication! Your partner(s) will want the best for you, and could well be worried about this too.

It all begins with taking that first step. Let’s come up with another plan:

1. Where and when is best to chat? Communication during sex is important for continual, enthusiastic content. But it's also important to talk about sex in a neutral time and place, maybe when you’re in the car, out for a walk, or cooking together. Doing another activity can help to lessen the intensity of the conversation.
2. Is there something specific you want to talk about? There might be lots of things on your mind, but there's no need to talk about them all at once. That’s exhausting. Perhaps pick one thing to introduce the topic. It may then feel easier to have the next conversation.
3. Write down what you want to say. If you’re prepared, you’re less likely to stumble over your words or feel embarrassed. Write down some notes to remember important points. You might even feel more comfortable writing a letter to your partner(s) before chatting.
4. Remember ‘I’ statements. If you want to bring up anything your partner has said or done, start with ‘I’ instead of ‘You’, as ‘you’ can sound accusatory. So, instead of ‘You make me feel’, say ‘I feel this when this happens and need this to happen next time’.
5. Ask questions and listen too. As well as spilling your own thoughts, ask your partner if they have any thoughts or worries too. Make this a conversation and not a speech. You’re working through this together.

I’m nervous about dating after transplant

Dating can be nerve-wracking at the best of times, let alone after going through a stem cell transplant. You’ve been through a lot and may have lost some confidence. It’s very normal to be nervous.

There’s no right time to date again after transplant. You should only date again when you feel ready to. Work on your own relationship with yourself first.

If you want to meet new people — for friendships too — but are anxious, how about one of these ways to go about it?

• Meet new people through a hobby, social group or volunteering, either in-person or online. This is a much more relaxed situation in which to get to know someone new. There’s much less pressure.
• Ask friends and family for their help. Maybe they can set you up with a trusted friend of theirs. They could even talk to them about what you’ve been through before you meet so you don’t have to worry about bringing it up, if that helps.
• Join a support group to meet new people going through similar experiences. You could so this through your hospital or charities such as Macmillan. You’ll all have a better understanding of each other and could open up more easily.

Should I tell a new partner about my transplant?

It’s entirely up to you what you tell new people about what you’ve been through, and when you tell them — whether you're dating casually or entering a new relationship.

There might not be an obvious time to bring it up with a new partner, but it’s probably best to talk about your history before things get too serious. This is especially important if you have concerns in areas like fertility. Follow the steps above to help you have these conversations.

If you feel comfortable with this person and trust them to be supportive, it can help to tell them. And if their response is not supportive, they’re probably not the right person for you. A loving partner will accept you for who you are and will want to work through any issues. Why settle for any less than you deserve?

Where can I find more information and emotional support?

It’s brilliant that you’re looking for information and support on this topic. Hopefully you’ve found some helpful facts and advice on this page, but there are lots of other places you can turn to for extra support.

You may feel that you (and your partner) would benefit from talking to a counsellor. They can help explore the cause of any problems and suggest ways of resolving them. You can find the right counsellor for you:

• Through Relate, the relationships charity. They offer specialist counselling and have lots of tips and tools on their website.
• Through the NHS Talking Therapies programme. You can self-refer to receive free counselling sessions.
• Through private counselling services in your area found on the College of Sexual and Relationship Therapists (COSRT) website.

You might feel nervous speaking to a counsellor, but the thought is often worse than actually doing it. Counsellors are trained to help you feel as comfortable as possible and to make tricky conversations work. It might also take a few counsellors to find the right one – that’s OK too. It’s a bit like dating!

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, read our blog or watch our patient & family stories.
• Call 0303 303 0303 or email patientinfo@anthonynolan.org to speak to our lovely, supportive team. We’re here for you.

Other useful contacts

British Association for Counselling and Psychotherapy
Information about counselling and therapists in your area.

Daisy Network
A large support group for women suffering with Premature Ovarian Insufficiency (POI), also known as the early menopause.

OUTpatients
Support and advocacy for the LGBTIQ+ community affected by cancer.

Macmillan
Macmillan Cancer Support has more information and support on cancer treatment and your sex life.

NHS
Information about treatments, conditions and lifestyle. Support for carers and a directory of health services in England.

The Institute of Psychosexual Medicine
Lists all UK doctors that are trained in psychosexual medicine.

Switchboard
Free and confidential support and information for the whole LGBTQIA+ community in the UK.

Look Good Feel Better
Providing practical and effective free services for patients struggling with the visible side effects of cancer treatment.

The Samaritans
Confidential, non-judgemental emotional support 24 hours a day, by phone, email, letter or face-to-face.

Teenage Cancer Trust
Support to improve the lives of teenagers and young adults with cancer.

Terrence Higgins Trust
Information, support and advice on all aspects of sexual health and HIV.