Sex and Endometriosis: What you need to know

This page provides key information to GPs for the purpose of promoting sexual health communication with patients with endometriosis

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Welcome

This website includes information on the nature of sexual health in endometriosis, common barriers to sexual health communication, and targeted strategies and communication tools to support GPs in engaging in sexual health communication.

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Sexual Health is Multidimensional

Sexual health is multidimensional – involving an interplay of many bio-psycho-social factors. As a consequence, sexual difficulties can impact all domains of functioning and has been found to be a strong predictor of quality of life¹, psychological wellbeing and the quality of romantic attachments².

Increasing individuals’ access to education on sexual health in the context of a sex-positive, affirming health care environment is crucial to improving sexual functioning³.

Sexual Health Concerns associated with Endometriosis

Individuals living with endometriosis commonly report difficulties in at least one domain of sexual health^{4, 5}.

Some of the most common sexual health complaints include:

Dyspareunia
Reduced satisfaction
Decreased sexual desire/interest
Low arousal
Lubrication difficulties
Difficulty reaching orgasm

Sexual Health Is Multidimensional

Increasing individuals’ access to education on sexual health in the context of a sex-positive, affirming health care environment is crucial to improving sexual functioning³.

Sexual Health Concerns Associated With Endometriosis

Individuals living with endometriosis commonly report difficulties in at least one domain of sexual health^{4, 5} Some of the most common complaints include:

Dyspareunia
Reduced satisfaction
Decreased sexual desire/interest
Low arousal
Lubrication difficulties
Difficulty reaching orgasm

Mythbuster: Sex and Endometriosis

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

A: Sexual health concerns in endometriosis is the rule, not the exception! Up to 80% of individuals with endometriosis experience sexual health concerns^{4, 5}.

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

A: Fertility issues are rarely the primary the reason individuals with endometriosis seek medical attention in general practice^{6, 7}. Research consistently shows that individuals living with chronic disease view sexual health as important and are interested in talking about sex with GPs^8-10.

3. Sexual health concerns are most significant among individuals with severe forms of endometriosis

A: Disease stage and severity do not fully account for the variance in sexual difficulties experienced by individuals with endometriosis. Many individuals with lower-staged and less-severe presentations of endometriosis experience sexual health concerns¹¹.

4. My role as a GP 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 presentations¹², including but not limited to the consideration of pharmacological treatments. Individuals rarely visit a GP seeking medication only for sexual health concerns⁷. Frequently, individuals report little-to-no benefit from mono-pharmacological options⁷. GPs should look broadly at management options.

Mythbuster: Sex And Endometriosis

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

A: Sexual health concerns in endometriosis is the rule, not the exception! Up to 80% of individuals with endometriosis experience sexual health concerns^{4, 5}.

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

3. Sexual health concerns are most significant among individuals with severe forms of endometriosis

4. My role as a GP is to provide medical treatment for sexual health concerns.

Common Barriers: What gets in the way of Effective Sexual Health Communication

Research indicates that GPs are reluctant to initiate conversations about sex in routine clinical practice. Click on the following common barriers to learn more about what they are and how they can be addressed:

Provider Discomfort

Sexual health affects everyone, yet societal taboos surrounding sexual health communication can create discomfort for both doctors and patients when addressing sexual concerns. Feelings of discomfort aren’t always verbalised, but can still be felt and perceived by patients. This relates to the concept of transference – wherein the attitudes and beliefs about sex held by both the doctor and patient influence whether sexual health communication is initiated and how it is approached.

To overcome provider discomfort, it is essential to practice initiating conversations about sex, making it a routine part of your consult. Evidence suggests that patients are often willing to discuss sexual health concerns but may hesitate to initiate. By initiating this conversation, you can model open conversations about sex.

Lack of Knowledge / Training

General practitioners commonly express dissatisfaction with the insufficient education or training provided on sexual health in general and, more specifically, on sexual concerns related to endometriosis. This can lead GPs to feel that sexual health communication is outside the scope of their expertise.

The good news? Your patient is already an expert on their sexual health concerns. Adopt empathetic communication techniques to understand their concerns and facilitate appropriate referral options.

You may also want to undertake some brief training on sexual health in endometriosis to increase your confidence.

For example:

Endometriosis

https://www.endozone.com.au/clinicians-centre
https://www.pelvicpain.org.au/endometriosis-pain-course/
https://acquire.ranzcog.edu.au/mod/page/view.php?id=13314

Sexual Health

https://shvic.org.au/professional-learning-support/professional-learning/doctors
https://shinesa.org.au/courses-events/

Women’s Health

https://www.jeanhailes.org.au/health-professionals/other-providers-of-womens-health-cpd
https://www.jeanhailes.org.au/health-professionals/elearning-modules
https://www.vageniustraining.com/

Additional Tools and Resources

https://ranzcog.edu.au/resources/raising-awareness-tool-for-endometriosis-rate/

Personal Variables

Gender, language, disability, health status, and socio-cultural context are among many variables which may influence your perceived capacity to engage in sexual health communication with individuals living with endometriosis.

Frequently, in the absence of information about an individual or their circumstances, we tend to jump to conclusions and fill in gaps from our own perspective. To enhance effective sexual health communication, take a moment to reflect on your personal characteristics, attitudes, and experiences, and consider how they might influence your approach to the subject.

Self-awareness is crucial for recognising when assumptions might be made about a patient’s experience or circumstances. Utilising empathetic communication can enhance your understanding of the unique experiences of the patient.

Time Constraints

Given the brief nature of appointments in primary care, many GPs are hesitant to inquire about sex, fearing it may “open up a can of worms.” If the primary focus of the appointment has been on other matters or time is limited, consider proactively introducing the topic of sexual health for the patient’s next consultation. You might also request that they book a double appointment, to enable sufficient time for the discussion. This also gives the patient an opportunity to prepare.

Clarify that exploring various aspects of living with endometriosis, including its impact on sexual wellbeing, would be beneficial. You can use proactive questions such as – “Sexual health concerns are common among people with endometriosis. This is important for us to talk about and I would like to give the topic the time it deserves. Are you interested in booking a longer appointment so we can discuss it at another time?”.

Treatment & Referral Uncertainty

Sexual health concerns are multidimensional and are often best addressed by a collaborative team approach. However, another barrier to effective sexual health communication is uncertainty regarding treatment referrals.

Review the biopsychosocial model of sexual health. Consider what symptoms and concerns the patient has disclosed, and what domains these map onto. View this brief summary for an overview of potentially relevant health providers. Consider consulting colleagues and peers to identify who they refer to locally and build up your referral network.

Low Priority

Research indicates that medical practitioners often de-prioritise sexual health compared to other medical issues. For some, dealing with sexual health can be perceived as less straightforward or yielding fewer tangible outcomes given its inherent complexity. As a consequence, sexual health concerns are underrecognised and undertreated in health care settings.

Sexual health concerns are among some of the most prominent for individuals living with endometriosis, and contribute a significant burden of disease. You don’t need to have all the answers. Instead, cultivate attention and curiosity to collaboratively formulate the patient’s specific sexual health goals. Construct a plan that involves engaging health professionals with relevant expertise.

Endometriosis can negatively impact sexual function in numerous ways

Depending on the unique presenting concerns and symptoms of your patient, multiple referral options and treatment pathways might be appropriate. The following health disciplines are commonly involved in endometriosis care and may able to assist.

Medical* Health Provider & Service Focus

Gynaecologist

Education, medication and surgery

Pain Specialist

Education, pain management

Gastroenterologist

Education, gastrointestinal concerns

Colorectal Surgeon

Education, management of colon, rectum and anus concerns

Urologist

Education, management of kidney, bladder, and urinary tract concerns

Dermatologist

Education, management of skin concerns (e.g., superficial dyspareunia, vulvar disorders)

Fertility Specialist

Education, management of fertility/sub-fertility

*Consider also that referral to another GP with expertise in women’s health may also be appropriate.

Allied Health Provider & Service Focus

Pelvic Floor Physiotherapist

Diagnosis, and management of bladder, bowel and pelvic pain functions and concerns

Dietitian

Targeting diet to manage symptoms

Occupational Therapist

Strategies to improve daily functioning and mobility

Psychologist

Diagnosis, and management of emotional, behavioural and cognitive factors influencing symptoms

Sexologist

Management of relational and psycho-sexual factors impacting sexual function

Counsellor

Couples counselling, and/or counselling for grief and loss

Before anything else: Empathetic communication

Four ingredients for empathetic communication: Attention, Curiosity, Empathy and Clarity

What do these look like in actual practice? Click on each ingredient to understand what it contributes to empathetic communication

Attention

Remember “The Golden Minute”! Give your patient your full attention.

If you need more information, ask open ended questions – Can you tell me more about that? Can you give me an example?

Curiosity

Be curious. Don’t jump to any conclusions (e.g., type of sex they’re having, who they’re having it with (if anyone), the broader impact, treatment approaches…).

View the patient as an expert in their own body – use open questions to explore their concerns; for example, Does endometriosis affect sex in other ways? What do you mean by that?

Empathy

Actively demonstrate empathy by providing emotional validation (e.g., sounds like you have been having a really terrible time) and reflection (so you are experiencing pain during sex [or other/additional symptoms]… and it’s affecting…).

Clarity

Summarise and check understanding (“let me check if I have heard everything correctly... (summarise and specify symptoms e.g. pain).. is that right? Did I miss anything?”

Addressing sexual health concerns: A step-by-step guide

If you are feeling unsure about the overall approach to take addressing sexual health concerns in clinical practice, see the decision tree below for guidance.

Citations
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. Norinho, P., Martins, M. M., & Ferreira, H. (2020). A systematic review on the effects of endometriosis on sexuality and couple’s relationship. Facts, Views & Vision in ObGyn, 12(3), 197.
3. Sayed, H. A. E., & Aboud, S. A. H. H. (2018). Effect of an educational intervention on quality of life and sexual function in women with endometriosis. International Journal of Studies in Nursing, 3(2), 127.
4. 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.
5. 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.
6. Pugsley, Z., & Ballard, K. (2007). Management of endometriosis in general practice: the pathway to diagnosis. British Journal of General Practice, 57(539), 470-476.
7. 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
8. 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.
9. 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.
10. Zhang, X., Sherman, L., & Foster, M. (2020). Patients’ and providers’ perspectives on sexual health discussion in the United States: A scoping review. Patient Education and Counseling, 103(11), 2205-2213.
11. Mishra, V. V., Nanda, S., Gandhi, K., Aggarwal, R., Choudhary, S., & Gondhali, R. (2016). Female sexual dysfunction in patients with endometriosis: Indian scenario. Journal of human reproductive sciences, 9(4), 250.
12. The Royal Australian College of General Practitioners. (2022). RACGP Curriculum and Syllabus for Australian General Practice: Sexual Health and Gender Diversity. The Royal Australian College of General Practitioners.

Disclaimer
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.