Although rarely discussed and commonly taboo, sex and pleasure are key components of a positive quality of life for many people and are among the top five most common reasons why couples will get divorced. However, when it comes to the chronic, life-long condition, endometriosis, sex is often forgotten and not prioritised. Endometriosis is a chronic-inflammatory condition, affecting approximately 5-15% of women at reproductive age. It presents as growths of endometrium-like tissue occurring outside the uterus, which can cause chronic pelvic and period pain, difficulty going to the toilet and complications with fertility. Pain can also be triggered from sexual activities and intercourse, which largely restricts these women’s quality of life and prohibits their right to an enjoyable, safe sexual experience.

In my interview with her before Christmas last year, Lois Balshaw noted that “sex and endometriosis is a minefield.” Lois is the founder of ‘The Code Red Club’, an organisation designed to spread awareness and help those with chronic reproductive disorders like endometriosis. Please see my previous two articles to learn more about Lois and her groundbreaking work.

In our interview, Lois explained how endometriosis can prohibit women from having sexual intimacy in their relationships due to the lack of awareness around the condition. This makes it awkward and uncomfortable to explain to partners why they experience painful sex, making it “a complete mood ruiner”.  Superficial or deep genital pain before, during or after sexual intercourse is abundant, in those with endometriosis, and can be a powerful incentive to refrain from future sexual activities, because it makes sex a distressing and painful experience.

Lois sympathises with this, describing how her own experiences induced a fear in her that sex would be painful, prohibiting her from enjoying sexual intimacy because all she could “think about is, ‘is it going to hurt”. Moreover, this fear can create anxieties around people’s partners’ enjoyment of sexual experiences, as they may worry about hurting their partner. This concern for the partner’s sexual enjoyment is what encourages some women with endometriosis to keep having sex regardless of the pain. Women may feel insecure about their femininity by not having sex or may experience feelings of guilt regarding not being able to have sex with their partner. However, this sociocultural expectation for young women to have and enjoy sex can be ableist, sexist and heteronormative. That is, it can prescribe to ideologies which exclude those that struggle to enjoy sex due to chronic illnesses and disabilities like endometriosis, it shames women for not being able to fulfil their partner’s sexual desires, and it assumes that all women will want to and have penetrative sex from a male partner.

When discussing her diagnosis experience, Lois noted that doctors only started to take her symptoms seriously when she said that she was having painful sex, as advised by her friend to do so: “she said ‘say you’ve got painful…sex, because then it becomes a bigger problem and then that’s when they start taking you seriously’”. When I enquired as to why she thought this happened, she noted that doctors only listen if a woman’s condition is “hurting the man”. This demonstrates that male-patient conditions will receive more attention by medical professionals and is also evident in studies investigating erectile dysfunction outnumbering studies investigating pre-menstrual syndrome (PMS) by 5:1, despite approximately 90% of women experiencing PMS versus 19% of men experiencing erectile dysfunction. This is not to say that typical ‘male’ conditions, like erectile dysfunction, should not be investigated, however, it shows that women’s health is once again discounted and placed below men’s in a hierarchy of medical and sociocultural importance. Furthermore, a pervasive heteronormative ideology in clinical practice can result in distressing and negative experiences for those that do not align themselves within heterosexuality.

However, as this series with Lois ends, my readers must leave not with a sense of doom but with a feeling of hope for a better future. Times and attitudes towards women like Lois and I are changing, and it is vital that we draw positivity from that. Although Lois understands her experience with endometriosis to be invariably negative, she also highlights how having a chronic condition has helped her practice self-love and acceptance. Lois has learnt how she must advocate for herself and only accept love from those that are willing to learn and be understanding of her condition, as she feels that “to be understood, is to be loved”.

If you are reading this because your friend or loved one has endometriosis, firstly I must congratulate you on taking the time to learn about such an unspoken, persistent condition, and secondly advise you to continue to learn, but also listen and digest, what your loved one tells you. Because, as Lois notes, “it’s such an isolating illness to then not be listened to and supported in the right way can be so damaging mentally”. Moreover, if you are reading this as a person with endometriosis, I implore you to recognise how far you have come, how much you have achieved, how strong you are and to keep practicing self-love and acceptance as Lois has preached, for only when you learn to accept and love yourself, can you truly find peace in your condition.