Relationships, intimacy and family planning

Relationships and intimacy are important aspects of daily life. For those living with PAH these parts of life may change and, in some respects, a new approach to relationships and intimacy might be needed.

It’s important to remember that, alongside clinical management of PAH, having healthy, supportive relationships and maintaining a level of intimacy (which will be completely dependent on your needs and wants), all contribute to overall health and wellbeing. This is important as high numbers of people living with PAH experience anxiety and depression.¹

Family planning is also an important consideration for people living with PAH and particularly for women, as childbirth puts the mother and baby at high risk.² It’s therefore strongly recommended that women do not fall pregnant if living with PAH.² This is something that can have a huge impact on someone living with PAH and therefore should be discussed with your partner and healthcare team.

Below are some tips for maintaining healthy, intimate relationships while living with PAH:

Speak to your healthcare professional

If intimacy issues are affecting your quality of life, speak to your healthcare professional who will be able to provide advice and/or point you in the direction of where to get further support – remember it is completely acceptable to bring up intimacy at your health appointments as it contributes to your overall health and wellbeing
Doctors, PH specialists, obstetrics and gynaecology specialists, urologists and specialist nurses can all offer advice on intimacy and sexual health – the main thing is that you address your concerns with a professional and you feel comfortable and supported

Communicate with your partner

Try to speak to your partner about your relationship, intimacy and family planning. Opening up may help you feel more comfortable about physical intimacy and help your partner understand how they can support you in the best possible way as well as considerations to keep in mind e.g. how your daily schedule might impact energy levels and in turn ability/interest to be intimate
Once you have had the initial conversation, together you can identify ways to move forward and maintain a healthy relationship that works for both of you

Connect with others

Attending a local patient support group can help; you will be able to speak to other people living with PAH and share experiences in a safe space – if you’re comfortable to do so, of course
If there is not a local support group in near proximity to you, online forums dedicated to PAH can also be useful to help connect you to others living with the condition
You may gain useful tips for how to manage PAH and intimacy from others’ first-hand experience

Visit www.phaeurope.org to find a list of relevant organisations across Europe – there may be others in your country!

Family planning

As mentioned above, becoming pregnant when you live with PAH puts the mother and child at a greater health risk. Therefore, it’s strongly recommended that women living with the condition avoid falling pregnant.¹

It’s recommended that two barrier methods of contraception are used during sexual intercourse, to prevent pregnancy. HCPs can offer advice on the best contraceptive methods for individuals¹²
It’s important to remember that you are not alone and you may need extra support to manage this part of living with PAH. Attending a local support group or joining a dedicated PAH online forum may help; counselling is also an option for you and your family
If you would like to start a family there are a range of resources, specially designed by patient associations, to help you consider and navigate your next steps. Fostering, adoption and surrogacy, depending on local country laws, may be options. It’s best to speak to your healthcare team and patient organisation who will be able to provide specific advice. It can also be useful to speak to other families affected by PAH about their experiences³

Visit the Living Well with PAH page or Practical Support and Resources page for more information.