From Endometriosis to Intimacy: The Changing Tide

One of the most important starting points is understanding what endometriosis is. Clinically, it is defined as the presence of tissue similar to the lining of the uterus located outside the womb, according to Consultant Gynaecologist, Professor Ertan Sardigoan. This tissue responds to hormonal changes in the same way as the uterine lining – thickening and shedding during the menstrual cycle – but without a pathway to exit the body. The result is inflammation, internal scarring (clinically called adhesions) and chronic pain. Importantly, endometriosis is not confined to the pelvic region. It can also affect the bowel, bladder and, in rare cases, other parts of the body. Despite the continued lack of understanding, endometriosis is a relatively common disease – affecting approximately one in 10 women*.

The next barrier is recognising the symptoms – something that is often challenging due a continued misunderstanding of what is common and what is acceptable. Experiences such as painful periods or discomfort during intercourse are frequently described as ‘normal’, making individuals less likely to seek medical advice. However, it is crucial to distinguish between what is common and what is clinically normal. Saridogan highlights the source of this confusion: “there is a condition called primary dysmenorrhea… this is quite common in teenagers… this is probably where this misconception of period pains being normal comes from.” While mild discomfort can occur, severe, persistent or life-disrupting pain is not typical and should be investigated, Saridogan explains. Key indicators that warrant medical attention include pain that interferes with daily activities, pain during or after sexual intercourse and gastrointestinal or bladder-related symptoms linked to the menstrual cycle, according to Saridogan.

Another barrier is the lingering “taboo” surrounding conversations about gynaecological conditions and diseases. As Dr Galyna Selezneva explains, open discussion is essential: “it all starts with a conversation… it can be your nail technician, it could be your hairdresser, it could be your girlfriend.” These early conversations help shape awareness and influence whether individuals feel empowered to seek care.

Diagnosis is also an important part of the puzzle, yet remains a significant challenge:on average it takes almost a decade to pinpoint endometriosis. Why? Historically, laparoscopy – a surgical procedure – was required to confirm presence of the uterine tissue. However, with improvements in imaging techniques there is hope that doing so can be more accessible, easier and more accurate. Nonetheless, diagnosis is not just about access to technology, but access to specialists – accuracy can be highly dependent on specialist expertise. According toSaridogan “your average sonographer may not have that level of experience… you need someone with a higher level of ultrasound expertise.”

Then comes management – a central part of living with endometriosis. Endometriosis is a chronic condition – recurrence is possible, and no single treatment offers a universal solution – thus management is integral. The management of endometriosis is often multi-faceted, including hormonal therapies, pain management strategies, lifestyle amendments and, in some cases, surgery.

Interestingly, an often-overlooked aspect of management is nutrition. Diet can play a significant part in endometriosis management for many people. However, a personalised approach is fundamental – while anti-inflammatory principles may help, outcomes depend on factors such as gut health, microbiome balance,l and individual sensitivities: “you could be eating those vegetables which will aggravate the presence of that bacteria and then give you more pain” explains clinical nutritional therapist, Lorna Driver-Davies.

This highlights an important point: there is no universal “endometriosis diet” – what works for one individual may not be appropriate for another. Driver-Davies explains the power of supplementation by highlighting the importance of nutritional status with those that have endometriosis: “endometriosis is very nutrient hungry – and the research is that it does respond positively to making sure that you get key nutrients in place.” Supplements that support hormone metabolism can be supportive, as endometriosis is partly fuelled by estrogen (Driver-Davies recommends Endo Support by WildNutrition). However, she cautions that supplements are not always harmless: “collagen is actually really bad for endo… the endo lesions are partly collagen in structure, so if you give them more collagen than you would get outside of a normal diet they lesions can actually grow.”

Beyond direct management, the chronic nature of endometriosis means it affects multiple aspects of the health system. One key dimension is the impact of persistent pain on the nervous system. Driver-Davies highlights that there is “a huge amount of pressure on the nervous system… and that becomes extremely stressful.” This is particularly significant given that endometriosis is widely understood to be an inflammatory condition, and inflammation can be exacerbated by stress.

Over time, repeated pain signals may lead to central sensitisation – where the nervous system becomes more sensitive to pain – resulting in persistent discomfort even when inflammation is reduced. This reinforces the importance of early and consistent pain management.

Crucially, gynaecological conditions and diseases can affect more than just physical health. As Selezneva explains: “it will affect your work, it affects your relationship, it affects you as a mother… you can’t treat one in isolation.” This reinforces the need to view endometriosis as a multi-system condition with physical, emotional and lifestyle implications. A consistent message from experts is the importance of integrated care. As expressed in discussion:

“I want somebody to see me as a woman… all aspects… as a whole person.”

Rather than isolated interventions, a coordinated, multidisciplinary approach offers the most effective path forward – bringing together gynaecological care, nutritional guidance, pain management and psychological support. Because while informed patients are important, real progress lies in ensuring those living with endometriosis feel supported – and understood.