LET'S TALK ABOUT SEX & ENDOMETRIOSIS

A communication tool to help patients and GPs talk about sexual health

I’m a PatientI’m a GP

Welcome to our site

This website was designed by a team of clinicians, health researchers, and persons living with endometriosis. The research project that led to the creation of this website was funded by Endometriosis Australia.

We have developed a set of tools to help you understand and communicate your sexual concerns with your GP.

Let's Talk About Sex and Endometriosis

The Facts

  • Sexual health is an essential part of wellbeing1
  • Up to 80% of people living with endometriosis report having concerns about their sex life2-3
  • Common concerns include discomfort/pain with sex, poor lubrication, low sexual libido and difficulties with orgasm2-3
  • 148 million individuals experience sexual difficulties across the world3
  • Despite how common sexual health concerns are, only 4.2% of GP consults involve conversations about sex4
  • For people living with endometriosis, there are many reasons why discussing the impact of endometriosis on their sex life can be challenging

The Facts

  • Sexual health is an essential part of wellbeing1
  • However, up to 80% of people living with endometriosis report having concerns about their sex life2,3
  • Common concerns include discomfort/pain with sex, poor lubrication, low sexual libido and difficulties with orgasm2,3
  • Across the world, it is estimated that 148 million individuals experience sexual difficulties3
  • Despite how common sexual health concerns are, only 4.2% of GP consults involve conversations about sex4
  • For people living with endometriosis, there are many reasons why discussing the impact of endometriosis on their sex life can be challenging

Mythbuster: Sex and Endometriosis

1. Sexual health concerns only affect a small number of individuals living with endometriosis

A: False. Actually, having sexual health concerns in endometriosis is the rule, not the exception! Up to 80% of individuals with endometriosis experience sexual health concerns2, 3 .

2. Patients are only interested in discussing sexual health if it is affecting their fertility

A: Wrong. Fertility issues are rarely the main reason individuals with endometriosis seek medical attention5,6. Research consistently shows that individuals living with chronic disease view sexual health as important and are interested in talking about sex with their doctors7,8.

3. Sexual health concerns are greater among individuals with more severe forms of endometriosis

A: Not true – in fact, disease stage and severity do not fully explain differences in sexual difficulties experienced by individuals with endometriosis. Many individuals with lower-staged and less-severe presentations of endometriosis experience sexual health concerns9.

4. A GP's role is to provide medical treatment for sexual health concerns.

A: Actually, the role of a GP is to take a holistic approach to all sexual health presentations10, including but not limited to the consideration of medication. Frequently, individuals report medication-only approaches provide little-to-no benefit11. Research suggests psychological therapies are more effective12. Thus, GPs should look broadly at management options.

Mythbuster: Sex and Endometriosis

1. Sexual health concerns only affect a small number of individuals living with endometriosis

A: False. Sexual health concerns in endometriosis is the rule, not the exception! Up to 80% of individuals with endometriosis experience sexual health concerns2, 3 .

2. Patients are only interested in discussing sexual health if it is affecting their fertility

A: False. Fertility issues are rarely the main reason individuals with endometriosis seek medical attention5,6. Research consistently shows that individuals living with chronic disease view sexual health as important and are interested in talking about sex with GPs7,8.

3. Sexual health concerns are greater among individuals with more severe forms of endometriosis

A: Disease stage and severity do not fully explain differences in sexual difficulties experienced by individuals with endometriosis. Many individuals with lower-staged and less-severe presentations of endometriosis experience sexual health concerns9.

4. A GP's role is to provide medical treatment for sexual health concerns.

A: The role of a GP is to take a holistic approach to all sexual health presentations10, including but not limited to the consideration of medication. Frequently, individuals report medication-only approaches provide little-to-no benefit11. Research suggests psychological therapies are more effective12. Thus, GPs should look broadly at management options.

Overall Wellbeing

Sexual health is an essential part of wellbeing and can affect different areas of life. For example, sexual pain can affect overall bodily pain, relationship quality, mobility, body image, mood and sense of self.

Consider which areas of your life may be affected by sexual health concerns. Understanding the impact for yourself can help in communicating it to others, including your GP.

  • Emotional: Thoughts and feelings about self, others, and the world. This can also include the ways you cope with everyday life, your self-esteem, and reactions to experiences of trauma and adjustment 
  • Physical Health: Mobility, vitality, sleep, appetite, touch and sexual intimacy, bodily pain
  • Social: Community, sense of connectedness, culture, relationship quality, intimacy
  • Financial: Awareness, safety, access to services/help
  • Occupational: Purpose, growth, environmental support, participation
  • Spirituality: Beliefs, sensuality, sense of self
  • Intellectual: Completing daily tasks, developing skills and knowledge, cognition
  • Environmental: Connection to surroundings, access to essential resources

Overall Wellbeing

Sexual health is an essential part of wellbeing and can affect different areas of life. For example, sexual pain can affect overall bodily pain, relationship quality, mobility, body image, mood and sense of self.

Consider which areas of your life may be affected by sexual health concerns. Understanding the impact for yourself can help in communicating it to others, including your GP.

 

  • Emotional: Thoughts and feelings about self, others, and the world. This can also include the ways you cope with everyday life, your self-esteem, and reactions to experiences of trauma and adjustment 
  • Physical Health: Mobility, vitality, sleep, appetite, touch and sexual intimacy, bodily pain
  • Social: Community, sense of connectedness, culture, relationship quality, intimacy
  • Financial: Awareness, safety, access to services/help
  • Occupational: Purpose, growth, environmental support, participation
  • Spirituality: Beliefs, sensuality, sense of self
  • Intellectual: Completing daily tasks, developing skills and knowledge, cognition
  • Environmental: Connection to surroundings, access to essential resources

The Barriers to Sexual Health Communication

The Patient Perspective

Through our research, we identified some key barriers that people with endometriosis face when speaking to a doctor about their sex life. We asked 141 individuals with endometriosis, living in Australia, what reasons they believed made sexual health communication difficult. Some of the barriers we identified included (from most to least relevant):  

Barriers to Sexual Health Communication

The Patient Perspective

Through our research, we identified some key barriers that people with endometriosis face when speaking to a doctor about their sex life. We asked 141 individuals with endometriosis, living in Australia, what reasons they believed made sexual health communication difficult. Some of the barriers we identified included (from most to least relevant): 

Social Stigma

Sex is still seen as a bit of a taboo subject, and so often it can feel embarrassing to bring up in conversation.

Negative Past Experiences

Feeling dismissed, misunderstood or invalidated by doctors in the past can make it difficult for people to bring up such a personal topic with their GP.

Lack of GP Knowledge

Not all GPs have sufficient knowledge or training on endometriosis and sexual health, which can be another barrier to effective communication.

Provider Characteristics

Often patients prefer having a practitioner of the same gender identity, especially when discussing sexual concerns. People with endo commonly prefer speaking to a female GP than a male GP.

Fear of Judgement

Some people fear being judged negatively by their doctor, and this might stop them bringing up concerns about sexual health.

The GP Perspective

Through a review of the research literature, we found that some GPs also face barriers when talking to patients about sexual health. Barriers included (from most to least relevant): 

Privacy and Sensitivity

Some GPs can feel uneasy when asking their patients about sex, given the private and sensitive nature of the topic. It is important to know that any discomfort they experience is not your responsibility to take on.

Insufficient Training

Many pointed out a lack of specific training on sexual functioning and its role in a person’s overall wellbeing. This also includes no training on how to bring up  the topic of sex in conversation.

Time Constraints

Limitations such as short appointment times, prioritisation of other issues and limited availability all make it harder to start conversations about sexual health.

Lack of Appropriate Knowledge

Similar to ‘insufficient training’, this barrier is about GPs not having the right knowledge about sexual health concerns.

Provider Characteristics

GPs are aware that patients often prefer a practitioner of the same gender identity, especially when discussing sexual concerns. Male GPs may also experience greater discomfort when discussing female sexual concerns than female GPs.

Putting it all together

There are some clear barriers that make it hard for sexual health concerns to be addressed. We want to make it easier for you and your doctor to talk about sex and endometriosis.

Research tells us that sexual health can be improved through effective communication

The Tools

Effective communication requires two participants – you and your GP.

To reduce the barriers and help you express your needs, we’ve created a set of tools to support you every step of the way: before, during, and after your GP appointment.

Use the navigation below to move through each of these stages.

The Tools

Effective communication requires two participants – you and your GP.

To reduce the barriers and help you express your needs, we’ve created a set of tools to support you every step of the way: before, during, and after your GP appointment.

Use the navigation below to move through each of these stages.

Before Your Appointment

  • Finding the right GP
  • Creating your symptom list

During Your Appointment

  • Conversation starters
  • Grounding strategies
  • S-EX-T-A-L-K

After Your Appointment

  • Referral pathways
  • Debriefing

Before Appt

During Appt

After Appt

Before Your Appointment

During Your Appointment

After Your Appointment

Before Your Appointment

Finding the right GP

Having a GP who you feel comfortable with can help make the conversation about sex a lot easier. If you don’t already have a trusted doctor, we know it can be tricky finding one. Below are some tips for mastering the art of finding the right GP for you. 

Ask for recommendations

Ask friends and family members if they know of a GP whom they trust. Also, if you are seeing other health professionals (e.g., psychologist, physiotherapist), ask whether they know of any GPs they think would be a good match.

Consider what makes a ‘match’ for you

• Money: How much am I able to spend on a GP visit? Be aware – a double appointment allows more time for discussion, but usually comes at an extra cost

• Distance: How far am I able to travel to see a GP? 

• Environment: What kind of setting will make me most comfortable talking about sexual health concerns? For example, would I feel more comfortable face-to-face, over the phone, or through video call?

• Past experience: What positive experiences have I had with a GP or other health provider in the past? What made it positive? 

Start searching

With the above in mind, start searching for a GP online. Try the links below.

Health Engine

Health Direct

Health Share

Pelvic Pain Foundation of Australia

Ask some questions

When booking your appointment, consider asking the medical practice some of the following questions:

• “Do you have any doctors who specialise in women’s health?”
• “Does your practice bulk bill? How much is the gap payment?”
• “Can I book a double appointment?’ And if so, ‘Is there an added cost?”
• “Do you have any male/female doctors taking new patients?” (If you have a preference)
• ‘”Do you offer telehealth appointments?”
• “What information (e.g., scans, specialist letters) may be helpful for me to bring with me?”

Think about your experience after the first visit

Did the GP:

• Make me feel comfortable ?
• Explain things in a clear way?
• Listen to me?
• Respect my identity? (gender, age, sexuality)
• Consider my medical and personal history?
• Offer me referral options?
• Give me a chance to ask questions?

Creating your symptom list

Understanding your sexual health concerns. Putting experiences into words.

It can be helpful to take a written list of your symptoms to your appointment. A list can guide your conversation and give you confidence that you won’t forget anything important.

Think about the symptoms you are experiencing with your sexual health

Select the symptoms that are affecting you:

    Sexual Pain (Called 'dyspareunia') Before, During, And/Or After Sex
    Loss Of Sexual Desire, Interest, Or Libido
    Orgasm Delay
    Vaginal Dryness
    Feeling Unsafe

    Additional questions for my GP

    • What causes these symptoms?
    • How can I best manage them?
    • What are my referral options?
    • Where can I find more information?
    • What should my next steps be?

    During Your Appointment

    Communicating with Confidence

    You have the right to have your concerns properly listened to, understood, and responded to. The following tools may help you talk to your GP about sex and stay calm in the moment.

    Conversation Starters

    Here are some common questions you might ask your GP during your appointment.

    “I’ve noticed this problem. I wanted to know if it’s related to my endometriosis?”

    “I feel pain during sex, what should I do?”

    “I’ve been avoiding sex because I’m worried about pain, can you help?”

    “It takes me a long time to climax. Are there treatments for this?”

    “I struggle with dryness during sex. What might this be due to, and how can this be improved?”

    “I think this is related to my endo, but I don’t know what to do about it…”

    Communicating with Confidence

    You have the right to have your concerns properly listened to, understood, and responded to. The following tools may help you talk to your GP about sex and stay calm in the moment.

    Grounding Strategies

    Talking about sex with your GP is no small feat! If you think you might feel anxious or overwhelmed during the conversation, practice the following strategies to help you to stay calm and present.

    Grounding Strategies

    Talking about sex with your GP is no small feat! If you think you might feel anxious or overwhelmed during the conversation, practice the following strategies to help you to stay calm and present.

    Breathing

    Focus on slowing down your breathing, and breathing more deeply. First, try slowing to 4 seconds on the inhale and 6 seconds on the exhale. Then, aim to breathe in through your nose, and out through your mouth. Finally, expand your stomach as you breathe in, and relax it as you breathe out.

    “5-4-3-2-1” Grounding. Use your five senses to notice the present moment around you.

    5. Notice 5 things you can see
    4. Notice 4 things you can touch/feel
    3. Notice 3 things you can hear
    2. Notice 2 things you can smell
    1. Notice 1 thing you can taste
    Repeat as needed.

    Dropping Anchor

    Place both feet on the ground – bring your attention to your feet and how they feel. Notice the points of contact between the soles of your feet and your shoes, between your heels and the ground… Just notice any sensations happening right now.

    Visualisation

    Imagine a calm, safe, happy place (e.g., beach, rainforest, your favourite place). Now use your senses to bring this picture to life. Notice what you can see, touch, hear, smell and taste. Imagine how it would feel to be there right now.

    Remember S-EX-T-A-L-K

    Below is a communication tool called S-EX-T-A-L-K. Use it to guide your conversation with your GP during your appointment.

    Remember S-EX-T-A-L-K

    Below is a communication tool called S-EX-T-A-L-K which is a helpful guide for how you might communicate with your GP during your appointment.

    Synthesise

    Break-it-down. Write a short list of your most common symptoms or use our symptom-list builder. Consider which symptoms have the greatest impact on different aspects of your everyday life.

    Synthesise

    Break-it-down. Write a short list of your most common symptoms or use our symptom-list builder. Consider which symptoms have the greatest impact on different aspects of your everyday life.

    Express Yourself

    You are the expert on your body. Aim to express your list of symptoms in a format such as this:

    • Situation
    • The feeling and impact
    • The request

    For example:
    Situation: ‘I feel vaginal pain when having partnered sex, or during masturbation.’
    Feeling and impact: ‘It hurts and makes me want to stop having sex. It makes me feel embarrassed and guilty.’
    Request: ‘I want to understand my treatment options so that I can begin to enjoy my body and sex again.’

    Express Yourself

    You are the expert on your body. Aim to express your list of symptoms in a format such as this:

    • Situation
    • The feeling and impact
    • The request

    For example:
    Situation: ‘I feel vaginal pain when having partnered sex, or during masturbation.’
    Feeling and impact: ‘It hurts and makes me want to stop having sex. It makes me feel embarrassed and guilty.’
    Request: ‘I want to understand my treatment options so that I can begin to enjoy my body and sex again.’

    Take Your Time

    There is no rush to fit everything into one appointment. Your sexual health is important and should take up space. If time runs out, consider booking a follow-up appointment. It might even be helpful to book a double appointment to start with.

      Take Your Time

      There is no rush to fit everything into one appointment. Your sexual health is important and should take up space. If time runs out, consider booking a follow-up appointment. It might even be helpful to book a double appointment to start with.

        [No] Apologies

        You don’t need to apologise for making a request, for sharing, for taking up space. You have a right to talk about your sexual health needs. No unjustified apologies!

          [No] Apologies

          You don’t need to apologise for making a request, for sharing, for taking up space. You have a right to talk about your sexual health needs. No unjustified apologies!

            Listen

            Active listening is key to effective communication. Take the time to hear and process the information presented to you. Take notes or ask your GP to write down key words or a summary of the visit. 

              Listen

              Active listening is key to effective communication. Take the time to hear and process the information presented to you. Take notes or ask your GP to write down key words or a summary of the visit. 

                Kindness

                Be nice to yourself and take time to re-calibrate. Regardless of the outcome of your visit, you’ve expressed your needs, unapologetically. This is no small feat. Make some space for aftercare, such as doing enjoyable activities or calming strategies to boost your wellbeing. 

                  Kindness

                  Be nice to yourself and take time to re-calibrate. Regardless of the outcome of your visit, you’ve expressed your needs, unapologetically. This is no small feat. Make some space for aftercare, such as doing enjoyable activities or calming strategies to boost your wellbeing. 

                    After Your Appointment

                    You may be asking yourself, what do I do now?

                    Referral Pathways

                    There are a number of possible treatment options for sexual health concerns. Your GP might recommend one or multiple referrals, based on your needs. The best management of endometriosis and sexual health concerns is often from a team of health professionals (AKA a ‘multidisciplinary team’). 

                    Types of Referrals

                    Medical
                    Allied Health

                    Medical Referrals

                    Gynaecology

                    Gynaecologists specialise in treating reproductive issues in people assigned female at birth. They can help diagnose and treat endometriosis. Gynaecologists can also help with sexual health concerns. Treatment includes a range of medical and surgical interventions. 

                    Pain Specialist

                    Pain specialists are doctors who have specific training in the assessment and treatment of pain. A pain specialist can address pain management through medication or other treatments such as nerve blocks. 

                    Fertility

                    In some cases, endometriosis can affect a person’s fertility. If you are concerned about fertility, a referral to a fertility specialist may support you to consider your fertility options. For example, they can make recommendations about medications, reproductive surgery, in-vitro fertilisation (IVF) and fertility preservation (e.g., egg-freezing).

                    Colorectal

                    A colorectal surgeon specialises in the treatment of issues to do with the colon, rectum and/or anus. They may be involved in treatment if the bowel is involved with endometriosis and is impacting sexual functioning.

                    Urology

                    Endometriosis can sometimes affect the bladder. This can result in pain when urinating, an increased need to urinate, or urinary pain during menstruation. If you are experiencing these types of symptoms during sex, a urologist may be able to support you. 

                    Gastroenterology

                    A gastroenterologist is a medical doctor who specialises in the treatment of digestive disorders. Some people with endometriosis experience bothersome bowel symptoms like bloating, diarrhoea, and stomach pain. If these types of symptoms are getting in the way of a healthy sex life, a referral to a gastroenterologist may be warranted.

                    Dermatology

                    Dermatologists are medical doctors who are trained to treat problems of the hair, skin, and nails. Sometimes endometriosis can directly and indirectly affect the skin, which can also affect sensation during sex and/or sexual confidence. A dermatologist can provide treatment for any skin-related symptoms affecting your sexual quality of life.

                    Allied Health Referrals

                    Pelvic Physiotherapy

                    Pelvic floor physiotherapy is a subspecialty of physiotherapy that focusses on pelvic floor function. Pelvic floor physiotherapists can support people with endometriosis understand the origins of sexual pain, and provide exercises that relax tension in the pelvic floor muscles.

                    Occupational Therapy

                    Occupational Therapists (OTs) can support people to participate more in daily activities. An OT might help someone to plan and adapt activities and routines to better manage the symptoms of endometriosis. 

                    Dietetics

                    Dietitians assess and address individuals’ dietary needs. They provide education on the link between diet and overal health, identify nutritional needs and provide dietary recommendations. A dietitian might help someone with endometriosis to manage their nutrition during flare ups, cope with changes to appetite, and establish a healthier gut.

                    Counselling

                    A counsellor is a mental health professional who can help process grief and loss. They offer a talk-therapy approach and can provide a safe, confidential, and non-judgemental space to explore your concerns.

                    Psychology

                    Psychologists are mental health professionals who work with people to improve their psychological wellbeing and quality of life. Some psychologists also have a specific interest in chronic health conditions, given the close links between mental and physical health.

                    A referral to a psychologist does not mean that sexual concerns are “all in your head”. Rather, a psychologist can help you address psychological factors (i.e., thoughts, feelings, behaviours) that may be contributing to sexual health concerns.

                    For example, psychologists can help manage anxiety around sex, provide ways to understand and cope with pain, and process trauma experiences.

                    Sexology

                    A sexologist has a specific training in issues concerned with sexual functioning and relationships. Treatment would focus on the factors that are impacting your sex life, such as pain and low libido. They can also help you address the impacts on relationships, in the context of individual or group/couple sessions.

                    Social Work

                    Navigating the healthcare system can be very challenging. The role of a mental health social worker is to assess and support people who have mental health illnesses.

                    If you are unsure why your GP has referred you to someone, you can ask further questions to find out how these treatments might benefit you. Remember, your time is just as valuable as the GPs’!

                    Debriefing

                    Debriefing can serve as a helpful step in managing distress and practicing self-kindness

                    After your appointment with the GP, you may experience a range of emotions. Debriefing can be a helpful step to manage any discomfort or distress. Also, debriefing allows you to think or talk through any decisions you need to make and reflect on your experiences in the appointment. Check out the strategies below for ways you can debrief, either with someone else or by yourself.

                    Sexual Health is an Essential Part of Wellbeing

                    Unwind with an Enjoyable Activity

                    • Phone a friend
                    • Go for a walk
                    • Reach out to a trusted person
                    • Listen to your favourite music
                    • Work out with your preferred exercise
                    • Eat a favourite meal
                    • Recharge in whatever way feels right

                    Making Decisions

                    Sometimes deciding what to do next is hard, especially if you have been given a number of options. Consider writing a list of pros and cons when choosing between treatments. You could also reach out for a second opinion if you are unsure, or schedule another appointment with your GP to discuss further. 

                    Reflect on the Experience

                    Did the GP:

                    • Make me feel comfortable?
                    • Explain things clearly?
                    • Listen to me?
                    • Consider my medical and personal history?
                    • Offer me referral options?
                    • Give me a chance to ask questions? ​

                    If the answer to any of these questions is no, we are sorry that you didn’t have a more positive experience. Your sexual health needs are important. If needed, you can look for another GP who is a better fit for you.

                    Practicing Self-Compassion

                    Another way that you can reflect on your appointment with the GP is to practice an exercise in self-compassion. Endometriosis can take a toll on  your time, finances, relationships, employment opportunities, and enjoyment of life.

                    Practicing self-compassion has been shown to improve mood, coping and quality of life. See the worksheet below for an example of a self-compassion exercise. Taking the time to think about your strengths is an important part of this treatment journey too. 


                    Writing a letter of self-compassion can prompt us to be more forgiving and refocus our thinking on being more accepting, caring, and supportive to ourselves and others. Describe an event that happened today when you felt your emotions were unwelcome, or difficult to manage.

                    Download Self-Compassion letter here

                    Stories of Lived Experience

                    The quotes below have been shared by people with lived experience of endometriosis, and may remind you that you are not alone in these experiences. The stories below capture symptoms, worries, and management of sexual symptoms. Please note that these quotes include descriptions of sexual acts.

                    “I experience extreme bloating from my endometriosis, and this makes it really difficult to feel positive about my body. Because of this, I struggle to feel confident during sexual intimacy."

                    26 (straight/heterosexual)

                    “I never know what to expect following sex. Sometimes during there is very little or no pain, but other times the experience is very painful, with pain lasting for multiple days after the sexual encounter. It’s difficult to relax and enjoy intimacy, because part of my brain is focused on whether or not I’m going to be pain later."

                    34 (straight/heterosexual)

                    “My current partner is accepting that sometimes I need to end sex early due to pain, but it took me ages to feel comfortable communicating this with them because previous partners had reacted badly."

                    23 (bisexual)

                    “I can place a lot of pressure on intimacy, and often feel worried that I’ll never have an orgasm with my partner again. I’m scared of sex being painful, and always have the pressure of infertility in the back of my mind."

                    38 (straight/heterosexual)

                    “I have a lot of pain and bloating during my cycle and tend to bleed a lot between periods. I feel frustrated at my own body, and I rarely have sex with my partner because of all my symptoms. Even though I am aroused during sex, it’s difficult to become lubricated. Despite my partner’s efforts, I am rarely able to climax because I feel very numb during different stages of my cycle."

                    29 (bisexual)

                    “My partner and I go long stretches without having sex. He’s afraid to be intimate with me because he doesn’t want to hurt me."

                    44 (straight/heterosexual)

                    “It’s so hard to feel present during sex when you’re fixated on the feeling of pain. I feel lucky to have a partner who listens to my needs during sex. We go slow or take our time during foreplay so even when I’m in pain it's a more enjoyable experience for me."

                    27 (straight/heterosexual)

                    “You can feel broken when you want to feel pleasure with your partner but instead feel pain."

                    28 (Pansexual)

                    “I have lost relationships previously due to difficulties with sexual intimacy. I am worried about how my next partner might react when I share my diagnosis and challenge."

                    37 (straight/heterosexual)

                    “I am frightened of worsening old injuries from being in the wrong position, so I tend to avoid initiating sex. Sometimes sex can change from being a really nice time to feeling awful in a split second, so I always approach sex with some kind of wariness in the back of my mind. Surgery and pelvic floor physiotherapy have really helped, and now I am able to engage in sex more comfortably and frequently."

                    23 (bisexual)

                    “I have trouble dating because I find it hard to justify doing so when I know vaginal penetration is painful for me. I'm now undergoing dilation practice and for the first time think a sexual relationship could be possible with someone. Facebook support groups have been invaluable for the support, and I no longer feel alone."

                    26 (asexual)

                    “I don't have a partner, so sometimes if I feel intimate I will self-pleasure. Sometimes it feels good and other times I feel nothing. I feel disconnected from my sexual being generally, and this is worse when pain or urinary symptoms are present."

                    29 (straight/heterosexual)

                    “Both my partner and I have endometriosis. It is so rare for us to feel in the mood for sex at the same time, between our combined cycles and symptoms. She experiences pain during internal penetration, and I do too sometimes. It's given us a fear of pain during sex, which is another barrier even if we do both want to be intimate."

                    29 (Gay/lesbian)

                    “The pain with sex with endo has got much worse as I've got older. Even though I'm a medical professional myself this is a hard thing to talk about and typically handled poorly by many health professionals and brushed over quickly in questioning."

                    37 (straight/heterosexual)

                    “You are not alone. You are not losing your mind. What you feel, what is happening to your body is not your fault and it is real. There are many different ways to help, and not all are going to work the same way, have the same effect, or work at the same time frame. What is most important is that you have a multidisciplinary team involved who all reiterate to you that you are not alone. "

                    Anonymous

                    “I wish I could go back and tell myself to trust what I was feeling, trust the physical sensations and keep going until I found a doctor who listened, who trusted me, and who was willing to investigate. After the diagnosis I would tell myself that it is not okay to feel diminished by my care team - I deserve to be heard and listened to, as does everyone."

                    Anonymous

                    Thank you for visiting our website! We hope that you have found it helpful and informative, and we encourage you to share it with others who might benefit.

                    The information provided in this resource was based on the following studies and publications:

                    1. Barbara, G., Facchin, F., Buggio, L., Somigliana, E., Berlanda, N., Kustermann, A., & Vercellini, P. (2017). What is known and unknown about the association between endometriosis and sexual functioning: a systematic review of the literature. Reproductive Sciences, 24(12), 1566-1576.
                    2. Di Donato, N., Montanari, G., Benfenati, A., Monti, G., Bertoldo, V., Mauloni, M., & Seracchioli, R. (2014). Do women with endometriosis have to worry about sex?. European Journal of Obstetrics & Gynecology and Reproductive Biology, 179, 69-74.
                    3. Fritzer, N., Haas, D., Oppelt, P., Hornung, D., Wölfler, M., Ulrich, U., & Hudelist, G. (2013). More than just bad sex: sexual dysfunction and distress in patients with endometriosis. European Journal of Obstetrics & Gynecology and Reproductive Biology, 169(2), 392-396.
                    4. Vik,A., & Brekki, M. (2017). Do patients consult their GPS for sexual concerns? A cross sectional explorative study. Scandinavian Journal of Primary Health care, 35(4), 373-378. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5730036/
                    5. Pugsley, Z., & Ballard, K. (2007). Management of endometriosis in general practice: the pathway to diagnosis. British Journal of General Practice, 57(539), 470-476. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078174/
                    6. Witzeman, K., Antunez Flores, O., Renzelli-Cain, R. I., Worly, B., Moulder, J. K., Carrillo, J. F., & Schneider, B. (2020). Patient–physician interactions regarding dyspareunia with endometriosis: Online survey results. Journal of Pain Research, 1579-1589. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7334010/
                    7. Engelen, M. M., Knoll, J. L., Rabsztyn, P. R., Maas-van Schaaijk, N. M., & van Gaal, B. G. (2020). Sexual health communication between healthcare professionals and adolescents with chronic conditions in western countries: an integrative review. Sexuality and Disability, 38, 191-216. https://d-nb.info/1203941994/34
                    8. Flynn, K. E., Reese, J. B., Jeffery, D. D., Abernethy, A. P., Lin, L., Shelby, R. A., … & Weinfurt, K. P. (2013). Patient experiences with communication about sex during and after treatment for cancer. Psycho-Oncology, 21(6), 594-601. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149787/
                    9. Barbara, G., Facchin, F., Buggio, L., Somigliana, E., Berlanda, N., Kustermann, A., & Vercellini, P. (2017). What is known and unknown about the association between endometriosis and sexual functioning: a systematic review of the literature. Reproductive Sciences, 24(12), 1566-1576.
                    10. The Royal Australian College of General Practitioners. (2022). RACGP curriculum and syllabus for Australian general practice: Sexual health and gender diversity. https://www.racgp.org.au/education/education-providers/curriculum/curriculum-and-syllabus/units/sexual-health-and-gender-diversity
                    11. Basson R, Brotto LA. Sexual psychophysiology and effects of sildenafil citrate in oestrogenized women with acquired genital arousal disorder and impaired orgasm: A randomized controlled trial. BJOG. 110:1014–24.
                    12. Omidi A, Ahmadvand A, Najarzadegan MR, et al. Comparing the effects of treatment with sildenafil and cognitive-behavioural therapy on treatment of sexual dysfunction in women: A randomized controlled clinical trial. Electron Physician. 2016;8:2315–24. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4930249/

                     

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                    Content on this website is provided for education and information purposes only. Deakin University will not collect, store or share the information you provide in the symptom checklist on this website, as the purpose of the checklist is informative only. Further information about Deakin’s privacy practices is available at http://www.deakin.edu.au/footer/privacy

                    Contributor’s Statement
                    This website was developed as part of a collaborative research project between Deakin University and other participating institutions. The site was designed by a team of clinicians, health researchers and individuals living with endometriosis. We would like to acknowledge the research team for their contribution to the project:

                    Ms Rebekah Davenport, The University of Melbourne
                    Dr Leesa Van Niekerk, University of Tasmania
                    Dr Jacqueline Mills, Deakin University
                    Prof Kerry Sherman, Macquarie University
                    A/Prof RoseAnne Misjon, The Cairnmillar Institute
                    Dr Felicity Dent, Maxwell Medical Group
                    Ms Hannah McHardy, University of Tasmania
                    Ms Taryn Lores, Deakin University

                    We would also like to thank the members of the patient advisory panel who provided their time and lived experience insights to this project and gave valuable feedback and suggestions as part of the design and development of this website.

                    This project received grant funding from Endometriosis Australia.

                    © 2024 Endo Australia. All Rights Reserved. The content on this website is licenced under a CC-BY licence, excluding images.