Health care professionals across the UK are being urged by Endometriosis UK to #DropTheBenign - stop using the word ‘benign’ - when referring to endometriosis, and other gynaecological conditions. Endometriosis is a common gynaecological disease which may progress if left untreated, potentially damaging organs, causing infertility as well as sometimes debilitating symptoms.
The phrase ‘benign gynaecology’ is frequently used in the NHS as medical shorthand to refer to gynaecological conditions that are not cancers. But new polling by Endometriosis UK shows that to the general public, benign is understood as meaning ‘not serious’ or ‘harmless’.
Endometriosis UK say the term ‘benign’ can be misunderstood and does not represent the experience of patients. Combined with the normalisation of common gynaecological health symptoms such as pelvic pain, incontinence, and heavy bleeding, it can contribute to those with gynaecological conditions being less prioritised for care and support, compared to those with other conditions.
Living with endometriosis and in chronic pain can have a devastating effect on physical and mental health, impacting relationships, careers, finances and more. Without treatment, endometriosis may progress over time - in some cases, causing severe damage to the bladder, bowel, fallopian tubes, ovaries and other pelvic organs.
Emma Cox, CEO of Endometriosis UK, said: “We want Royal Colleges, healthcare practitioners, NHS decision makers, and all other healthcare stakeholders to commit to dropping the term ‘benign’ when talking about so called ‘benign gynaecology’.”
“When left untreated gynaecological conditions like endometriosis may progress and result in increased severity of symptoms, for some this may mean damage to internal organs requiring complex surgery. The impression is those with the disease and other gynaecology conditions are less in need of timely support and treatment, even though their symptoms can be severe and life changing.”
“We want those diagnosed, or with suspected, endometriosis, to have the information they need to make an informed choice about their treatment. The term benign does not help people in understanding their disease. And we want those with endometriosis to receive the same priority and access to care based on the impact of the disease and their needs, comparable to other conditions.”
Dr Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists, said: “This summer, there were almost 600,000 patients on waiting lists for gynaecology services, more than double pre-pandemic levels. The College is calling for fair and equitable prioritisation of NHS care for gynaecology conditions. An important part of this is improving understanding of the serious impact of gynaecological conditions across the NHS, and ensuring women feel their condition is being taken seriously.”
A 32-year-old member of the endometriosis community from the East Midlands shared her journey with the disease and how she feels about use of ‘benign’.
I find the use of the word 'benign' when referring to endometriosis deeply offensive.
It took 11 years to receive my diagnosis. I was repeatedly told that, despite having widespread pelvic adhesions, debilitating pelvic pain, and every other possible symptom of endometriosis, my pain was "not gynaecological".
Repeated misdiagnosis and medical mismanagement lead to me needing to have my uterus, cervix, fallopian tubes, and ovaries removed at the age 31, as they were so badly damaged and repeatedly sticking to each other and other organs. During that surgery, my specialist found I had deep and extensive endometriosis throughout my pelvic cavity, and that it had also superficially spread to my bowel, bladder and right ureter. Had I not been put on the urgent surgical list, and waited another year on the routine list, I could have lost my right kidney.
This disease cost me my career and has had a profound impact on my ability to be intimate with my partner. I've lost a lot of independence and freedom. I've lost so much time to flare ups, and to recovery from previous surgeries that were a waste of time. I've missed out on events and opportunities. I've had a summer of missed opportunities while I recover from my hysterectomy and excision surgery. I now need to adapt to surgical menopause. I will never carry my own children. The impact on my mental health has been just as bad as my physical health.
Endometriosis has ruined my life, but I am young, and I will find a new way forward, even if it doesn't look how I expected. It is not appropriate to describe this disease as "benign".
- Recent polling by the charity suggests the term ‘benign’ causes the public, patients, employers and educational establishments not to take the disease seriously.
- 77% of those asked said they associate the word ‘benign’ with positive attributes, such as ‘harmless’, ‘kindly’ and ‘inoffensive’, and 76% said if they heard someone had a ‘benign’ medical condition, they would feel unconcerned or neutral.
Notes to editors
What is endometriosis?
Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body. Each month these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions). The condition affects 1.5million in the UK; approximately 1 in 10 women and those assigned female at birth from puberty to menopause, although the impact can be felt for life.
What are the symptoms?
Endometriosis symptoms can vary from one person to another, as can their intensity. For some symptoms may be mild, for others they can be severe and debilitating. Whilst not every person will suffer from every symptom, common symptoms include pelvic pain, painful periods, pain during or after sex, pain when urinating, painful bowel movements, fatigue, and difficulty getting pregnant. Many experience period pain, but if pain is interfering with your everyday live it’s best to see your doctor.
NHS Waiting times
NHS England data shows that in October 2012, the average waiting time to see a gynaecologist for a first appointment was 4.8 weeks. By October 2022, the most recent month for which figures are available, that figure had increased by 225% to 15.6 weeks.
The current waiting time in England, time to see a first appt gynaecologist, is 16 weeks. This data can be tracked using the Waiting List Tracker (lcp.com) and adding the gynaecology filter.
Gynaecology remains the faster growing specialty in elective care since the start of the pandemic, and is one of the highest specialities in terms of absolute increases in waiting list numbers (RTT data to June 2023). As of June 2023, there were almost 600,000 patients on the waiting lists for gynaecology services, more than double pre-pandemic levels.
Where can I get support?
Why is the term benign gynaecology currently used?
Amongst medical professionals, 'benign gynaecology' is widely used to describe non-cancer gynaecological medical conditions, including endometriosis, fibroids, adenomyosis and PCOS.
About the polling and survey results
Polling is pulled from two sources, the Endometriosis UK Diagnosis Survey 2023 which ran from March 2023 – August 2023 and received 5530 responses in total. A section of the survey was dedicated to the ‘Drop the Benign’ campaign. This section asked respondents to answer questions on their experience of the use of the word ‘benign’ throughout their journey with experiencing symptoms associated with endometriosis. The full survey findings will be published in October 2023.
Q52. The meaning of ‘benign’ is often given as ‘not harmful’ or ‘gentle and kind’ when referring to people. If you heard endometriosis described as a 'benign disease’ would you agree or disagree with this description?
Strongly disagree – 73.70% (2892 responses)
Somewhat disagree – 12.84% (504 responses)
Neither agree or disagree – 8.49% (333 responses)
Somewhat agree – 2.85% (112 responses)
Strongly agree – 2.12% (83 responses)
(3924 responses in total)
In addition, Drop the benign polling took place in January 2023 and received 2011 responses in total. The poll was dedicated to asking questions about the word ‘benign’.
Of the 2011 respondents, nearly 50% (49.68%) selected ‘harmless’ to describe what benign means to them.
Over 77% (77.33%) associated the word benign with positive attributes, such as ‘harmless’, ‘kindly’ and ‘inoffensive’.
A combined total of over 76% (76.03%) of respondents stated they would feel unconcerned or neutral if they heard someone had a benign health condition.
Roughly 67% (66.73%) of respondents thought a benign condition would have a minor to moderate impact on someone’s day to day life.
Approximately 66% (65.79%) of respondents would expect someone with a benign medical condition to only experience mild to moderate symptoms, rarely or sometimes impacting on their day-to-day life.
Nearly 62% (61.91%) of respondents would feel relieved, glad that the condition won’t worsen or believe the condition to not be serious if they were told the diagnosed medical condition was ‘benign’.