How to navigate sexual intimacy and endometriosis

An estimated half of endometriosis sufferers report experiencing painful sex (1). As if endometriosis wasn’t bad enough, going through painful sex can truly feel like a double blow. Although painful sex is common, it should not be accepted as normal (2)! Thankfully, sexual pain can often be reduced, if not resolved, meaning a pain-free and pleasurable sex life is possible!

Impact of painful sex

Having painful sex can seriously impact your life, with 50% reporting that it is the single biggest impact on quality of life from endometriosis (3). Sexual pain may contribute to you, understandably, wanting to avoid being sexual and can have implications for relationships (4, 5). Often it is a source of anxiety, distress, upset and can leave you with body image and self-esteem concerns amongst other anxieties (6). 

Experiences of sexual pain 

Sexual pain associated with endometriosis is often felt deep inside the vaginal canal, around the cervix or in the pelvic/uterine/abdominal region (you may feel this in the lower belly). However, you may also feel pain more superficially on the vulva (the external genital area that touches your underwear) (7). Everyone’s experiences with sexual pain vary significantly. It can range from mild to excruciating, could occur every time or occasionally and may last only during intercourse or continue for the days to follow. All experiences are equally valid. 

Sufferers of painful sex often describe having to battle feelings of shame, guilt, embarrassment, failure, or a sense of being damaged or broken (8). If you feel this way, you are not alone! Know that painful sex is not your fault, that you are certainly not broken, and that help does exist! 

The vicious cycle of sexual pain  

Your body has a good memory, so it can begin to associate sex with pain. When the body expects pain, it can involuntarily tense in anticipation, which results in more pain. Just the same as if you got a sting of pain each time you ate cheesecake, you would slowly come to associate cheesecake with pain and avoid it altogether! The best way to break this cycle is to find sexual activities that don’t hurt and to create clear boundaries with your partner/s so that when you do have sex, you know that it won’t hurt. 

When to see a healthcare provider?

If you are experiencing sexual pain, it is wise to see a healthcare provider, who can conduct a physical exam and investigations. Sexual pain can often be both physical and psychological, so including a pelvic floor physiotherapist and sex therapist can help. 

Tips to ease painful sex symptoms

  1. Don’t try to push through the pain –if something hurts or doesn’t feel good, don’t force it, or try to push through the pain. Doing this is counterproductive and can exacerbate the pain. By continuing to have painful sex you are also creating a link in your head between pain and sex (9). 
  2. It is common but not normal. Understand that your struggles with painful sex are common but are not normal. Sexual pain is a medical condition and there are options to relieve it (10). 
  3. Lubrication! You might not always be wet before sex (arousal non-concordance) and using lube does not mean that there is something wrong with you! Lube can help decrease pain during sex and can be applied as often as required. 
  4. Experiment with different times of the month. Some people report that sexual pain varies depending on the time of the month. Keep track of your cycle and painful symptoms, you may find that certain times of the month are less painful. 
  5. Switching things up. If you are looking to manage pain during penetrative sex, you can try switching to different sexual positions (for example the vulva owner on top) or integrating wearables such as Ohnut to decrease the depth of penetration. 
  6. Expand your ideas of what sex is. Try sexual activities that don’t involve vaginal penetration, such as touching, oral sex, or mutual masturbation. Remember, good sex does not have to involve penetration! To expand your sexual menu, try completing a YES NO MAYBE list. 
  7. Improving foreplay. Although foreplay alone rarely cures painful sex, it may help you become more aroused and decrease the pain response. 
  8. Keep having sex with yourself. Just because you are having pain with sex does not mean that you don’t deserve pleasure. Also, there are many benefits to masturbation. As Dr. Sarah Welsh says, "endometriosis can cause more severe period pains, so it’s time to give yourself a hand. Masturbating releases endorphins which can help with menstrual pain, aches and cramps, as these hormones ease soreness, promote relaxation, and reduce stress. Take it slowly, focus on the enjoyment of sensations without the pressure of orgasm as an endpoint."
  9. Communicate about sexual pain. Sexual partners are not mind readers, so it is important to communicate about painful sex. Specific positions may feel more painful and can be avoided. Sexual pain is not your fault and there is no need to feel any guilt or shame
  10. Improve your washing and grooming habits. Soap and other feminine hygiene practices can dry and irritate the tissues, which can contribute to discomfort. You do not need to clean the vagina (internal canal). To wash the vulva, use warm water. When using sexual wellness accessories, make sure to check the ingredients lists, as many mainstream brands use unnecessary chemicals which can cause yeast infections such as thrush, or BV. Gentle, pH-balanced, glycerine-free Lube is ideal, especially if it’s water-based, whereas oil-based lubricants can trap bacteria creating an optimum environment for infections.
  11. Take pain-relieving steps. Before penetrative sex, you may choose to take pain-relieving steps, which might involve taking a warm bath or pain reliever. After penetrative sex, try applying an ice pack to the vulva area. A top tip from Dr. Sarah Welsh on this - pop a tea towel over your vulva area before applying the ice pack, so that that the ice doesn't stick to your skin. 
  12. Mindfulness practices. Mindfulness has been found by researchers to help decrease distress associated with painful sex and improve sexual satisfaction (11, 12). Invest time in yourself and your sexual wellness. It’s important to own your body and medical journey, especially if you have endometriosis. Dr. Sarah Welsh recommends apps like Ferly, where you can working through science-rooted audio guides designed to help you to be more present during sex and explore intimacy in a non-intimidating way through expert advice, physical touch practice and recordings from trusted therapists.
  13. See a healthcare professional. If you have painful sex, always go to see a doctor. If someone tells you that the pain is all in your head or doesn’t take your concerns seriously, it might indicate that your provider doesn’t know how to handle this problem. There are plenty of other providers out there, find someone else!

 

Zoe Sever is Unfabled's Clinical Lead. Zoe brings a wealth of knowledge from her broad spanning background, having started her career in Nursing and transitioning to Sexology and Research. She holds a Master’s in Sexual and Reproductive Health and is currently pursuing a PhD in Women’s and Reproductive Health at Oxford University. On a mission to empower individuals with cycles to better understand their bodies, Zoe is helping us to banish shame, stigma and demystify reproductive health.

References: 

  1. Gynecologists ACoOa. When Sex Is Painful 2022 [Available from: https://www.acog.org/womens-health/faqs/when-sex-is-painful?utm_source=redirect&utm_medium=web&utm_campaign=otn.
  2. Valovska AT. Pelvic Pain Management: Oxford University Press; 2016.
  3. Bernuit D, Ebert AD, Halis G, Strothmann A, Gerlinger C, Geppert K, et al. Female Perspectives on Endometriosis: Findings from the Uterine Bleeding and Pain Women'S Research Study. Journal of Endometriosis. 2011;3(2):73-85.
  4. De Graaff AA, D'Hooghe TM, Dunselman GAJ, Dirksen CD, Hummelshoj L, Consortium WE, et al. The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Human Reproduction. 2013;28(10):2677-85.
  5. Fagervold B, Jenssen M, Hummelshoj L, Moen MH. Life after a diagnosis with endometriosis - a 15 years follow-up study. Acta Obstet Gynecol Scand. 2009;88(8):914-9.
  6. Uloko M, Rubin R. Managing Female Sexual Pain. Urologic Clinics of North America. 2021;48(4):487-97.
  7. Yong PJ. Deep Dyspareunia in Endometriosis: A Proposed Framework Based on Pain Mechanisms and Genito-Pelvic Pain Penetration Disorder. Sex Med Rev. 2017;5(4):495-507.
  8. Donaldson RL, Meana M. Early Dyspareunia Experience in Young Women: Confusion, Consequences, and Help‐seeking Barriers. The Journal of Sexual Medicine. 2011;8(3):814-23.
  9. Hummelshoj L, De Graaff A, Dunselman G, Vercellini P. Let's talk about sex and endometriosis. J Fam Plann Reprod Health Care. 2014;40(1):8-10.
  10. Lahaie M-A, Boyer SC, Amsel R, Khalifé S, Binik YM. Vaginismus: A Review of the Literature on the Classification/Diagnosis, Etiology and Treatment. Women's Health. 2010;6(5):705-19.
  11. Evans S, Fernandez S, Olive L, Payne LA, Mikocka-Walus A. Psychological and mind-body interventions for endometriosis: A systematic review. J Psychosom Res. 2019;124:109756.
  12. Brotto LA, Bergeron S, Zdaniuk B, Driscoll M, Grabovac A, Sadownik LA, et al. A Comparison of Mindfulness-Based Cognitive Therapy Vs Cognitive Behavioral Therapy for the Treatment of Provoked Vestibulodynia in a Hospital Clinic Setting. J Sex Med. 2019;16(6):909-23.

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