Sexual Health and Wellbeing

Sex can be an important part of life and relationships, and the good news is that most people with spina bifida/hydrocephalus can have fulfilling sex if they want to.

However, the condition can have an impact on your sex life, and also fertility, and there may be extra challenges around it. For example:

• Loss of sensation can affect desire and function in women, and from midlife, menopausal symptoms such as vaginal dryness can also contribute.
• For men, erectile dysfunction (ED) is a common issue.
• Reduced mobility and bladder or bowel incontinence can also get in the way of sex.

Coping with physical challenges 

It’s possible to find ways around most of the physical issues that can affect sex. Often, it just takes a little planning and preparation.

For women¹

• If you have loss of sensation in the genital area, remember that sex isn’t just about intercourse, and there are lots of different ways to feel pleasure. Try exploring different parts of your body, with or without a partner.
• Even if you’re aroused, you may not get lubricated, so lubricant (lube) can make sex more comfortable – there are lots of different types available from pharmacies.
• Menopausal symptoms including vaginal dryness can affect your sex life - Speak to your GP about options to help treat menopausal symptoms. These can include using simple lubricants, locally acting oestrogen creams or pessaries - which you insert into your vagina - or Hormone Replacement Therapy (HRT) in the form of tablets which can be swallowed, patches or gels to apply to your skin. There are also special types of lubricant which are suitable for women at menopause. These can have a slightly different consistency to standard products.

For men²

• Erectile dysfunction (ED) may feel embarrassing but it’s a common problem for men with and without spina bifida/hydrocephalus. It’s also usually treatable. Your GP or pharmacist can offer medications like sildenafil (Viagra) which improve blood flow to the penis.
• If necessary, there are also other treatments, including a penile vacuum device or constriction ring, to help you maintain an erection.
• Changes to orgasm and ejaculation may also occur. There can be a reduced amount of semen and the chances of experiencing a non-ejaculatory (dry orgasm) can increase with age.
• You can also speak to your GP about whether a referral to an Erectile Dysfunction clinic may be an option for you.  

For both^1,2

• Prepare your bowel and bladder – some of the same nerves are also involved in sexual function, so emptying your bladder and your bowel in advance can prevent leaks during sex. It is possible that during sex there may be a small urine leak. Don’t worry, it is harmless to both partners.
• After sex, empty your bladder again to reduce the risk of a urinary tract infection (UTI), and clean away any bowel leakage with a moist towel. Women can douche if they think bowel contents have got into the vagina.
• Certain positions may be difficult because of issues such as limited mobility, pain and weakness. Experiment together to see what works for you both.
• Try using sex toys, and other ways of being intimate, such as massage, cuddling and kissing.

Fertility and contraception

Generally, if you or your partner has spina bifida or you have already had a child with spina bifida, your chances of having a baby with the condition are 1 in 25. If you’re concerned about your risks of having a child with spina bifida, speak to your GP.

Most people with spina bifida can have children. There may be some extra considerations – for example, differences in the pelvic nerves and muscles can make pregnancy more challenging, and you may need additional monitoring.

Anyone considering a pregnancy is advised to take folic acid supplements to try to reduce the risk of having a baby affected by this condition and should speak to a GP to get higher dose folic acid supplements before embarking on a pregnancy 

Pregnancy is possible if you haven’t reached menopause yet. It’s therefore important to use birth control (contraception) if you don’t want to have a baby. Barrier methods, such as condoms, can also protect you against sexually transmitted infections (STIs).

Types of birth control

Talk to your GP or sexual health clinic about the type of contraception that may be best for you. There are lots of different choices, and they can help you figure out what suits you, your body and your life. Here are some examples:

• Condoms are a barrier contraceptive made from latex rubber. The most commonly used is the male condom which covers the penis during sexual intercourse and, if used correctly, prevents semen from entering the vagina. There are also female condoms which are inserted into the vagina. Condoms are the best way to protect yourself against STIs and unwanted pregnancy. However, latex allergy is common in people with spina bifida/hydrocephalus, so use latex-free condoms if you’re affected.
• The combined pill (often just called “the pill”) contains hormones to prevent pregnancy, by stopping the ovaries from releasing an egg (ovulating). The pill is also sometimes used for reducing the symptoms of painful and heavy periods. The progestogen-only pill (often known as the “mini-pill”) also stops the ovaries from releasing an egg but doesn’t contain the hormone oestrogen, so may be more suitable for people who can’t take oestrogen.
• Long-acting reversible contraception (LARC) can be convenient because it lasts for a longer time without the need to take something every day. Examples include the contraceptive injection or implant. The Mirena coil, an intrauterine system (IUS), is another type of LARC that can be helpful for managing heavy periods, and may be used as part of HRT as it contains progesterone.
• Emergency contraception, also known as the morning-after pill, can be taken if you haven’t used birth control correctly, or if there’s a problem like a damaged condom. You can get it from your pharmacist, or through your GP or sexual health clinic.

No contraceptive is 100% reliable, and some may have side effects. It’s important to weigh up all the information so you can think about the option that may be most suitable for you – your GP or healthcare professionals at a sexual health clinic can talk this through with you. Remember, too, that the best options for you may change throughout your life.

You can find out more about all these contraceptive options and others that are available here 

Emotional challenges

Lots of things can affect sex drive, including stress, grief, low mood, relationship problems, and physical issues such as pain and incontinence. Some people simply have a lower sex drive than others.

As you age, you may find that you have less interest in sex, and prefer other intimate acts. Some people prefer not to have sexual relationships at all.

It’s important not to put pressure on yourself if you don’t feel like having sex. Everyone’s different.

However, it may be worth getting checked out if:

• loss of interest in sex is new for you, or lasts longer than usual
• you have other symptoms, whether they’re physical or mental
• loss of sex drive is troubling you

Sometimes, sexual issues can be signs of other problems – for example, erectile dysfunction can be a sign of cardiovascular disease, and low libido is a common symptom of depression. Your GP can assess you to rule out or treat any underlying issues. If symptoms of spina bifida/hydrocephalus are affecting your sex life, you can get support to deal with them so they don’t get in the way unnecessarily.

References:

1. https://www.spinabifidaassociation.org/resource/health-care-for-women
2. https://www.spinabifidaassociation.org/resource/mens-health