Living with pelvic pain for a long time can affect how you feel about yourself and your life; this is known as your identity.

Sometimes, pelvic pain can start to feel bigger than everything else. It can make it harder to do the things you enjoy or be the person you want to be.

Here are some ways pelvic pain can affect identity, and ideas to help you stay connected to yourself. It’s important to remember that you’re not alone in your pain.

Illness identity

When pain has been around for a long time, it can sometimes feel like your whole life is about managing it. You might notice you are:

• Talking mostly about your pain or what you can’t do
• Spending lots of time thinking about symptoms
• Feeling like other people don’t understand
• Only connecting with people who also have pain
• Stopping doing things you enjoy.

Support from others who understand can really help. But it's also important to remember that you are more than your pain. Your hobbies, friendships, goals, interests and dreams still matter. Managing pain isn’t always easy.

Sometimes, the things that help manage pain can take a lot of time and effort. They can feel frustrating or annoying and may even make it seem like pain is taking over more of your life.

Social identity

Pelvic pain can sometimes make friendships and relationships harder. When you’re experiencing pelvic pain, it can be difficult to concentrate or keep up with conversations because the pain is taking up a lot of your attention.

As periods and pelvic pain are not always talked about openly, you might:

• Feel embarrassed, worried or misunderstood
• Avoid social events, new places or feel like you have missed out on opportunities
• Be unable to participate in some or many of the activities that your friends or classmates are doing, like sports, school trips and celebrations or parties
• Feel that these situations are unsafe or stressful.

It can help to talk with trusted people who make you feel supported, accepted and able to meet you where you are at.

People in your family may also have different views or beliefs about pain. Some of them may have experienced pelvic pain before. It’s important to remember that our understanding of pain is very different now to what it used to be, because we have a lot more information and research.

Cultural identity

Pain and things like periods are talked about differently across cultures.

In some cultures or religions, getting a period can change how a young person takes part in their community and cultural or religious practices. This can include different rules or expectations about:

• Clothing
• Touch
• Family roles
• Social activities during periods.

In some cases, it may impact access to places of worship.

Different cultures also express pain differently. In some cases, openly expressing pain is usual and encouraged; in others, people may be expected to hide any emotion and ‘push through’ discomfort.

These experiences can bring up many feelings, including pride, happiness, confusion, sadness or feeling left out.

Gender identity

For some young people, pelvic pain or periods can affect gender identity or how you experience who you are. You may see yourself as a woman, a man, neither or a mix of both.

Periods, bleeding and body changes can cause distress or might make you feel uncomfortable in your body. This can sometimes affect mood, confidence or how connected you feel to yourself.

Body identity

Pelvic pain and period symptoms can make your body feel uncomfortable or unfamiliar.

Heavy bleeding, bloating or pain can also affect body image and confidence around other people.

Family attitudes can sometimes matter more than the broader culture. Younger generations are often more open about periods than older generations. Social media has increased discussion of some of these topics.

For neurodivergent young people especially, pain and body sensations may feel extra intense or overwhelming.

Some people may opt to stop or lighten their period with hormonal medicines including the IUD (Intrauterine Device) or Oral Contraceptive Pill (OCP or 'the pill').

How to be your best you

You deserve a life that includes joy, connection, comfort and meaning.

To help stay connected to who you are, try to:

• Spend time with people who understand and support you.
• Keep doing activities and hobbies you enjoy.
• Continue practices that help you feel calm and confident.
• Set goals and dreams that matter to you.

Long-lasting pelvic pain can be tiring. It's no surprise that you might feel you don’t have enough energy to do the things you love.

Self-connection

Self-connection is about knowing and understanding yourself and noticing how different experiences affect your thoughts, feelings, energy and your pelvic pain.

This could include:

• Thoughts you’re having about pain
• Other bodily sensations
• Opinions and attitudes about pain that people around you share
• Environments around you during the day.

Connecting with yourself can be helpful when you’re living with pelvic pain.

Learn more about how you can improve your self-connection

Energy is like a phone battery

Think of your energy like your phone battery. You recharge your phone overnight and during the day as the battery level drops. Some apps use more battery than others. You might have to change how you use your phone, if the battery is running low. Or, you might need to plug it back in to recharge. Your energy levels can be similar.

Like your phone, you may start the day feeling fully charged, but the things you do throughout the day can drain you. Going to school might take energy and taking the bus home might drain more energy. By the time you’re home, you might only have one bar of energy left; this might mean you have to skip a fun activity like a party or hanging out with friends.

Managing energy levels is something that takes practice and experience.

Here are some tips:

• Take five minutes to check in on how you are feeling and what thoughts are coming up.
• If you're having a difficult day, try to remember that thoughts and feelings pass.
• Try writing down how you feel before and after an activity to see how it affects your energy.
  • You could do this in a journal.
• If you're feeling anxious, consider choosing activities that are relaxing and help to calm your nervous system like taking a warm bath, doing some deep breathing or trying some gentle stretching.
• If you're feeling low, try something that could improve your mood, like exercise, a quick walk or listening to some upbeat music.

Support options

• Speak to family members, your friends, community leaders or another trusted adult
• Speak to your school nurse, wellbeing officer or school counsellor
• If you want more support, speak with your local doctor (GP) who can help with a Mental Health Treatment Plan or refer you to a psychologist
• Kids Helpline – a free and confidential phone support service, available 24/7
• Headspace – offers support at their clinics, or over the phone and online
• Reach Out – online mental health support for young people

Disclaimer

This information is intended to support, not replace, advice from your doctor or healthcare professionals. It is general information only and may not apply to your individual circumstances. You should always check with your healthcare provider before making decisions about your care or starting, stopping or changing any treatment.

The authors of this consumer health information have made a considerable effort to ensure the information is accurate, up-to-date and easy to understand. The Royal Children’s Hospital (RCH) Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Medical knowledge can change over time and the information contained in the handouts is updated regularly. Therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.

Developed by The Royal Children’s Hospital, Melbourne Kids and Teens Pelvic Pain Clinical Network multidisciplinary team, supported by RCH services.

The Kids and Teens Pelvic Pain Clinical Network is supported by the Victorian Government.