Endometriosis is a condition that receives relatively little airtime.  It is almost never a dinner party topic, but sufferers describe it as a “hellish condition” that affects their bodies, their relationships, their ability to function and even their psychological wellbeing. What even fewer people speak out about is the devastating effect of endometriosis on sexuality and couple relations.

What is Endometriosis?

Wijnland Fertility Clinic’s gynaecologist, Dr. Candice Morrison explains, “Endometriosis is a condition unique to women, occurring when the lining of the uterus begins to grow outside of the uterus and elsewhere in the abdomen. This in turn causes inflammation and pain ranging from discomfort to agony. Pain peaks in the seven days before menstruation and is often a barrier to sexual intercourse. The condition affects 1 in 10 women globally, however some women do not experience any symptoms. In some cases, endometriosis causes infertility due to inflammation and scarring. The cause lies with an over-production of hormones and can be treated with varying results by hormonal medications and surgery.”

The Psychological Impact

Cape Town fertility psychologist, Lizanne van Waart, of Wijnland Fertility Clinic, says that the impact on both the sufferer and her partner can be very complex to navigate. “Endometriosis cannot be seen on the outside of the body and as such is an ‘invisible’ disease. It is also a condition that is only experienced by women and this leaves many men feeling helpless and frustrated.”

Misunderstood by many – and sometimes put down to severe menstrual problems – the chronic pelvic pain experienced by some sufferers can prohibit a normal life. Says Van Waart, “At a recent conference around endometriosis and sexual function (ESHRE, Belgium, 24 – 25 September 2015), we heard from a sufferer that many people had viewed her as psychologically unstable because she was often in so much pain she was unable to function socially. She lost her job and her marriage disintegrated. Essentially she became a prisoner of the condition.”

Beyond the physical pain, 40% of endometriosis sufferers say they are sexually dissatisfied (Tripoli, TM et al, 2010) and many women say they develop a psychological fear of sex because it may present pain and disappoint their partners. Libido problems may be compounded by infertility fears, adding immense strain to relationships.

Tackling the Psychological Toll

Endometriosis sufferers are often living with guilt, humiliation and grief but many doctors routinely treat the physical symptoms alone. Studies have shown that 73% of women are too afraid to ask their doctors about the sexual consequences of endometriosis and many doctors are either too uncomfortable or unqualified to tackle the issue from a psycho-sexual perspective.

Van Waart recommends demystifying the disease for both the sufferer and their partner. “Understanding what the condition is all about goes a long way towards managing the effect it is having on the relationship. Couples need to be honest about their feelings in a gentle and considerate way. Many men report feeling marginalised by this genderised disease so it is important that men become part of the solution.”

Couples suffering from the sexual impact of endometriosis are successfully managing to find ways to achieve sexual satisfaction that doesn’t involve penetration. “Sexual intimacy is as important to a relationship as sexual satisfaction, so maintaining that special intimacy bridge is key to ensuring that endometriosis couples are not victims of the condition,” advises Van Waart.

Endometriosis is often left undiagnosed for many years, symptoms such as pain during intercourse, excessive pre-menstrual pain, general abdominal pain, gastro-intestinal problems or exhaustion could indicate endometriosis and should be investigated.