Written evidence from Endometriosis UK [RHW0061]

 

Executive Summary

Endometriosis UK is the leading charity for those affected by endometriosis, determined to ensure that everyone gets prompt diagnosis and the best treatment and support. Because many with endometriosis also have adenomyosis, our work covers both diseases as well as wider menstrual health. Endometriosis is a long-term health condition affecting 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. That’s over 1.5 million in the UK. It occurs when cells similar to those in the womb lining grow elsewhere in the body, responding to hormones in the menstrual cycle. This can cause inflammation, scar tissue, and chronic, sometimes debilitating, pain. Currently, the average time to diagnosis is 8 years 10 months in the UK.[1]

Girls and young women with endometriosis and menstrual health conditions are missing out on education, social development, and early career progress because of long diagnosis times and lack of access to care. This will impact throughout their life. Many are left with long term physical and mental health issues because they are not supported to get a diagnosis, or actively told their sometimes debilitating pain and symptoms they are experiencing are normal [2] or ‘in your head’. From our 2024 Diagnosis Survey of all age groups, we know that 78% are told they are making a ‘fuss about nothing’ or similar. [1]

Without a diagnosis, appropriate care cannot be accessed, and the disease may progress. Delay in diagnosis is a significant issue as it can lead to prolonged suffering, ill health, and risks to fertility.[2] Long outdates myths around severe period pain being normal and that teens can’t get endometriosis, [3] combined with lack of symptom recognition by healthcare practitioners results in the those presenting with symptoms of endometriosis in their teens take longer to get a diagnose that those who present with symptoms when 26 or older. Significant resource in the NHS is taken prior to a diagnosis of endometriosis when symptoms are not recognised. Our 2024 Diagnosis Survey of all age groups showed that prior to diagnosis but with symptoms, 47% visit their GP 10 or more times; 52% had visited A&E once and 26% visiting A&E 3 or more times; and 20% see a gynaecologist 10 or more times.[1]

Yet it needn’t be this way. For 10% of those later diagnosed with endometriosis, it is discussed in their first 2 visits to a GP, and some report receiving a diagnosis in less than a year.[1] There are significant opportunities to reduce individuals suffering, save resources in the NHS, and support improved attendance in education and employment. There is a clear pathway for diagnosis and care in the NICE Guideline on Endometriosis [4], including specifying that those 17 and under with symptoms should be referred to either paediatric gynaecology or a specialist endometriosis centre; referring promptly from primary care would drive down diagnosis times for this age group.

The July 2025 new RHSE guidance includes menstrual health education, and will support those with symptoms understand and seek help and access care. Implementing these would improve attendance in school and further education, improve attainment, and supporting young women to stay in employment, shaping their future lives and attainment. And is much needed, given 98% of those with endometriosis under 26yrs old were not made aware of menstrual health conditions to support seeking help. [3] 

The 10 year plan provides significant opportunities to improve diagnosis and care for those with endometriosis. Shifting to community and providing accessible, integrated care will support prompt diagnosis, access to treatment and ongoing management in a local setting if specialist care is not required. Digital has great potential, with AI supporting diagnosis by identifying patterns of symptoms plus care supported by a single patient record reducing the need to repeat experiences again and again in different healthcare settings. Whilst it is not currently possible to prevent endometriosis occurring, it is possible to prevention disease progression and associated physical and mental health issues through early diagnosis and access to ongoing treatment and management, saving resources in the NHS whilst reducing suffering and helping young women thrive in education and employment.

Whilst we use the term girls and young women as given in the title of this enquiry, we recognise that not all young people with endometriosis identify as a girl or young woman.

I felt as though I was being weak when everyone told me this pain was normal or that I would grow out of it. I felt like I had to ‘suck it up’ and get on with it which often led to me fainting from the pain or throwing up. I tried to get a diagnosis when I was 16 and was told I was too young for it to be endometriosis and the pain was normal. I started to think it was all in my head but since the diagnosis I know what I’ve been suffering with for years is not normal and there is a reason for it. Now I can make positive changes to reduce my symptoms as much as I can and get the help I need.

Respondent, Survey of Young People’s Experience of Endometriosis, 2025

Data:

We have a wealth of data about the experiences of those with endometriosis including our 2024 diagnosis survey report Dismissed, ignored and belittled” The long road to endometriosis diagnosis in the UK. [1] For this submission we have undertaken two activities to identify current issues for girls and young women:

 

Recommendations:

  1. Menstrual health education in primary and secondary school is vital. Endometriosis UK strongly supports the July 2025 update to the RHSE Curriculum which includes enhanced direction on menstrual education. The Department for Education should ensure effective delivery of these changes by assessing implementation in 2027–28, alongside ongoing monitoring of implementation.  This should be supported by an active outreach campaign to provide schools with training and resources, including those from Endometriosis UK who is willing to help and support implementation. 
  2. Governments in all four nations should commit to lowering the average time to get a diagnosis to a year or less by 2030. Key will be ensuring the NICE Guideline on endometriosis is implemented consistently to ensure a baseline for care and reduce the current post code lottery. Improvements in gynaecological imaging especially ultrasounds offer potential to support diagnosis, and a priority should be developing sonographers trained for gynaecology and menstrual health conditions. 
  3. Medical schools, Royal Colleges and healthcare professional bodies should ensure that endometriosis and menstrual health conditions are consistently embedded across curricula and assessment. Training must highlight that symptoms can begin at puberty overcoming the misconception that some young people are “too young” for endometriosis and other menstrual health conditions.
  4. Long waiting times can undermine young people’s health, development, mental health and overall potential to thrive, as they are not able to access care. Commissioners and providers must urgently tackle gynaecology delays, and ensure the long-term sustainability of elective gynaecology. Fully funded, long-term NHS workforce plans will be essential to ensure staffing shortages do not continue to impede timely care and the appropriate level of resource can be allocated.
  5. In 2024, the diagnosis section of the NICE Guideline on endometriosis was updated, stipulating a clear pathway for those under 18 [4]. This must be communicated effectively to GPs and secondary care gynaecologists to ensure prompt referral to the right place. The NICE guidelines should be reviewed in full to fill gaps including on gynaecological imaging, non pharmacological pain management, mental health support. There should be sufficient data collection, monitoring and audit to ensure that NHS commissioners are delivering changes.

 

Recent progress and further improvements required

Effective education and quality information

Our research clearly shows that currently there is not effective menstrual health education or information for girls and young women. From our Survey of Young People with Endometriosis – August 25: [3]

 

 

 

 

 

 

Endometriosis UK strongly welcomes the updated Relationships, Sex and Health Education (RSHE) guidance, due to be implemented in September 2026, addressing previous gaps in menstrual health education. Effective implementation for all children is essential so that young women can recognise when symptoms are abnormal and seek timely support, and that stigma is reduced for young men.

 “I had 1 lesson on sex ed, when I was 10 and nothing about periods or what else could happen. Just about body parts. I felt shame thinking my period shouldn’t be as heavy as it was and bullied due to it”

             

Respondent, Survey of Young People’s Experience of Endometriosis, 2025

 

Young people need access to evidence-based, age-appropriate menstrual education that teaches what a healthy cycle looks like and when to seek medical support. It cannot be assumed that everyone is comfortable talking about menstrual health in the home, and some from minority communities may find it difficult to navigate issues around menstruation at home due to additional cultural barriers.[5] Endometriosis UK has worked with Menstrual Cycle Support to develop an online Menstrual Cycle Support Course for Teens to manage their menstrual cycle, find out what’s normal for you, know when (and how) to get additional support and enhance your tracking / charting method. [6]

We hear concerns from those in the NHS that improving diagnosis times would ‘flood the system’. Substandard care should not be recommended based on historic lack of planning, resource and priority meaning there are currently long gynae waiting lists and lack of capacity. We believe improved diagnosis times will reduce multiple unnecessary appointments in primary and secondary care, saving time and resources as well as reducing suffering and supporting girls and young women to attend education, start careers, and reduce mental health burden.

Knowledge, understanding and empathy in the healthcare sector, and provision of information

Endometriosis symptoms may start at puberty, and our Diagnosis Report 2024 showed that of the 4,371 respondents, 31% were 16 or under when they first considered the symptoms they were experiencing could be due to a medical condition rather than just being ‘normal’. When asked to look back with the understanding of endometriosis they have now, this figure increased to 56%.[1]

Yet when asked in our August 2025 survey, 58% of those 25 and under reported having been told they were ‘too young to have endometriosis,’ and 79% disagreed with the statement: Healthcare practitioners took my symptoms seriously. [3] Those that are under 25 experience significantly longer time from first GP appointment to diagnosis than those over 26, with longer delays the younger you are. [7] This must change, or we will continue to let down girls and young women. Medical schools, Royal Colleges and all those responsible for healthcare practitioner education and training must embed menstrual health including endometriosis into all teaching curricula.

 

As the table below show, whilst the majority of those 25 and under felt there was poor support, information, relief for symptoms, lengthy diagnosis time and follow up, it should be noted that there are a minority that felt these went well, proving these can be done well and providing the opportunity to learn from best practice to improve across the UK.

 

A close-up of a graph AI-generated content may be incorrect.

 

Our Diagnosis Survey 2024 showed that before investigations for their symptoms took place, 84% of all survey respondents were prescribed hormonal medications such as the contraceptive pill, coil or contraceptive implants, to manage their period pain or period problems. In 51% of these cases hormonal medication was prescribed without any discussion into the possible causes of pain or period problems. In 29% there was some discussion about the possible causes of pelvic pain, although endometriosis was not mentioned. Endometriosis as a possible cause of people’s symptoms was only discussed in 11% of cases where hormonal medication had been prescribed, when all of these were cases were confirmed by a doctor as having endometriosis at a later (generally much later) date.[1]

 

We hear repeatedly from young women that they were ‘put on the pill’ with no discussion that there could be an underlying health condition and often being told their sometimes debilitating symptoms are completely normal. We must move away from medicating teens with no diagnosis, and towards recognition of symptoms and provision of information so girls and young women are able to make informed choices about their health. At first GP visit, GPs prescribed hormones to 29.5% of those who were under 16 compared to 9.2% of those 25 and over.[7] Whilst hormones might be a way to manage endometriosis, there should be a discussions of possible causes rather than being told ‘it’s normal’. For those who were under 16 when they first saw a GP, if there was a discussion of possible causes of pelvic pain including endometriosis when they were prescribed hormones, they had a average 23% reduction in the time to diagnosis compared to those who didn't have any discussion.[7]

At present those seeking help with symptoms when they are younger take significantly longer to get a diagnosis that those who first seek help when over 25. Those that were 16 years or younger when first going to the GP faced an average 4.5 years longer wait from first presentation with symptoms at a GP to diagnosis compared to those who went when they were over 25. [7]The recently introduce Jess’s Rule should help, encouraging primary care GPs teams to rethink a diagnosis if a patient presents three times with the same symptoms or concerns, particularly if symptoms unexpectedly persist, escalate, or remain unexplained.

The impact on mental health of having symptoms dismissed or normalised must be recognised. Being in severe pain, missing school, life events, socialising and work, and being told that this is normal can be devastating for girls and young women, as the two quotes from August 2025 show.

Had to retake a year of my a-levels and drop down to 1 subject due to back to back operations which left me feeling like I was falling behind my friends and peers in life.

I was in pain every day but my ultrasounds kept showing as clear so the doctors would discharge me. I felt hopeless and ignored and it led to me dropping out of uni and I wanted to end my life

Respondents, Survey of Young People’s Experience of Endometriosis, 2025

When it does come menstrual health information often comes too late. A 2024 paper found up to one in five students received no education before their first period.[8] This means that young women face the longest delays in recognising that symptoms may signal a serious condition. Those that were 16 years or younger when symptoms first appeared took 4.1 years longer on average to realise that those symptoms could be something not normal compared to those that they were over 25 when they started.[7]

Challenges with NHS data

Unfortunately, availability of data in the NHS on endometriosis is poor. There is limited coding for endometriosis, and numbers with the disease and types of treatment and management cannot be accurately analysed. For example, someone may be scheduled for a ‘diagnostic laparoscopy’ which has a code. However it is very unlikely there is re-coding to give the outcome of the surgery, meaning endometriosis and any other conditions found are not recorded on the codes. More detailed coding, accurate recording and audit will be vital to ensure accurate figures around endometriosis, treatments and management and linked conditions, and to measure progress.

Challenges with terminology

‘Reproductive health’ implies that ‘reproduction’ is what is being considered. We believe using the term 'reproductive health' is unhelpful for many of those seeking help for pelvic pain, heavy bleeding, and other symptoms of endometriosis and menstrual health issues, especially girls and young women, along with those who are not considering (or able to) consider having a baby. There are examples of where those who are not considering (or able) to conceive as not receiving support, for example their pain is not managed rather they are told to ‘come back when you want a baby’; and of those who have had hysterectomies being told by healthcare practitioners that they’re not going to see them again as ‘they can’t have children – even for those in their 30s, who may have other complications.  Similarly, ‘reproductive age’ is considered generally in society as late teens to early 40’s, whilst medially it’s first to last period, a significantly larger cohort.

Effectiveness of Women’s Health Hubs and funding 

Services should be designed around the needs of girls and women, and easily accessible. Women's health hub provide a model to provide efficient, patient focused support, with a the 'one stop shop' approach to significantly reduce the need for multiple appointments at different locations.

However, they have not been implemented to provide a ubiquitous service across England, and with significant variance in what and how it is provided access the is very much a post code lottery. The DHSC guidance on Women’s health hubs: core specification (March 2024) [9] provides the services and chare pathways that should be covered. Delivering this core specification in the most appropriate way in the community will ensure provision is available to all.

One area that would significantly support diagnosis of endometriosis and other menstrual health conditions would be implementing effective gynaecological ultrasound imaging in the community, at an appropriate hub or community diagnostic centre.

When designing services, it is vital that accurate estimates of relevant population are used. Endometriosis is defined medically as in those of ‘reproductive age’. In medical terms ‘reproductive age' means from first period to last period. Girls as young as 8 are starting periods and average menopause is in early 50's. But culturally and in society 'reproductive age' is understood to be about having a baby, around 18/20 to mid 40’s. Some may consider 16 yrs old given the age of consent. This misunderstanding about what is ‘reproductive age’ impacts on the numbers being considered when commissioning services and allocating resources to endometriosis and menstrual health conditions in the NHS. It should also be noted that scaring and damage due to endometriosis doesn’t simply disappear on menopause, and allowance should be made for supporting a percentage of those post menopause who will require ongoing treatment and management.

At my first gynaecologist appointment I was advised by my GP to ask about appropriate painkillers as I was missing a lot of college and was worried I wouldn't be able to sit my Alevels. When I asked, I was told "you're going to be in pain for the rest of your life" and "no doctor would give painkillers to a teenage girl". I left the appointment crying, feeling belittled and terrified of the prospect of lifelong pain with no relief. I was made to feel as though I had a low pain tolerance and I should just deal with it. Two years on, I still feel guilty and ashamed to use pain relief, believing I should just suffer and deal with it.

Respondent, Survey of Young People’s Experience of Endometriosis, 2025

 

Examples of good practice in improving diagnoses, waiting times and treatments. 

Diagnosis

We know from our research that prompt diagnosis does and can happen in some cases. Where symptoms were recognised and considered in a timely way, we heard of cases where diagnosis was secured in under a year. 10% of respondents to our 2024 Diagnosis Survey reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed. [1] Our survey of those under 26 yrs old undertaken in August 2025 identified that 14% felt that the time taken to get a diagnosis went well. Prompt diagnosis can be done, and should be the norm not the exception. [3]

Treatment and management

The NICE Guideline on endometriosis states “young women or people (aged 17 and under) with suspected or confirmed endometriosis to a paediatric and adolescent gynaecology service or specialist endometriosis service (endometriosis centre) for further investigation and management.” [4] There are currently limited paediatric and adolescent gynaecology services, and to support their development good practice examples and guidance could be provided. For example, the Women's Centre at the John Radcliffe Hospital, Oxford provides an adolescent service and specialism in chronic pelvic pain particularly in association with endometriosis and in teenagers/younger women.

Waiting times

In the last week of August 53% of those under 19 and on the gynaecology waiting list had been waiting longer 18-week target in England. [10] Although overall gynaecology waiting times have fallen slightly since their peak in September 23, they are still far away from pre-covid levels and have risen more than any other specialty  during that time - meaning that Per 100,000 people gynaecology wait times are the worst speciality in England.[11]

For girls and young women, these delays mean missed school, lost opportunities, and potentially worsening physical and mental health. These are critical years when they should be focusing on education, friendships, and their future. 

Our 2025 survey found that 80% of young respondents had missed out on school, 77% on college, university or training, and 86% had missed out on work due to their endometriosis or endometriosis symptoms. Less than 1% of respondents had not missed out on anything.[3] Reducing waiting times would mean that young people could get seen quicker and have better chance of getting the correct treatment and management options to help manage symptoms.

Reducing girls’ and women’s pain experienced during diagnosis and treatment. 

Those with endometriosis frequently report their pain being dismissed as “normal” or “just part of growing up.” We found that 73% of those who first went to their GP before age 16 were told they were making a fuss, compared with 49% of those over 25.[7]

A graph of a number of patients with symptoms Description automatically generated with medium confidence

Many with endometriosis report receiving no support with managing their pain, other than being told to use over the counter pain killers. Despite being a chronic pain condition, few with endometriosis are given access to pain management services, at any age. This could be due to healthcare practitioners not believing the level of pain or that it is ‘normal’, or low priority given to women’s pelvic pain. Yet if left unmanaged this can lead to pain sensitisation and risk long term chronic pain. A recent study by Oxford University found that “Teenagers who experience moderate or severe period pain are significantly more likely to develop chronic pain in adulthood, including pain beyond the pelvis”. [12]

The NICE guideline on endometriosis [4] has a section on non pharmacological pain management, but it is woefully lacking. The only thing this section says is to not use Chinese medicines or Chinese herbal supplements. There is nothing for example on pelvic physio, psychological interventions, types of exercise. We strongly urge the Government to request NICE to undertake a full review of the NICE Guideline on Endometriosis; a partial review in 2024 only considered diagnosis.

When I was a teenager I felt horrible about myself (I was put on the pill at 12 because I couldn't stop throwing up and bleeding heavily), as I've become older I've struggled a lot with self image especially due to weight loss from endo symptoms - I spent a year on morphine which was awful.

Respondent, Survey of Young People’s Experience of Endometriosis, 2025

Adequacy of provision of free period products for girls and women who need them

As the Department of Education states: “Period products should be available for all who need them, when they need them, so they can access education. Having periods should not be a barrier to education for anyone.”

We wholeheartedly agree that having periods should not be a barrier to education, for anyone. Unfortunately we hear of two key issues preventing this. Firstly, there is the lack of availability and accessibility of period products, which many have to ask for rather than being readily available. Those with heavy or long periods have told us of being questioned about whether they really need ‘so much’ with implications they’re taking them when they don’t need them or being rationed.

Secondly, access to toilets themselves is a serious issue. Heavy menstrual bleeding, urgency and bowel issues are symptoms of endometriosis, and being able to go to the toilet when needed is vital. Girls, young women and their parents tell us about not being allowed to go to the toilet during or between classes, in some cases toilets being locked at these times. These practices result in many missing school.

In September 2025 a concerned father of a 15 year old told us their daughter has heavy periods and doesn’t go to school for 2 – 3 days each month, she is far too anxious. She’s been told she can’t go to the toilet during classes, and she’s scared of flooding and the embarrassment it would cause, resulting in her missing school despite her being concerned about missing classes and falling behind.

I didn’t have any friends in school because i was hardly ever in and i had people accuse me of faking being ill.

Respondent, Survey of Young People’s Experience of Endometriosis, 2025

 

Work to develop and roll out new diagnostic tools. 

Currently, a laparoscopy with biopsy is considered to be the definitive way to diagnose endometriosis. However, this is being challenged in other countries, and there are several developments which can support diagnosis.

Imaging offers significant potential to support diagnosis.

Globally, there is significant interest in identifying an effective non-surgical diagnostic tests for endometriosis. At present, there is very limited research evidence for the effectiveness of these. The French Government has invested in development of a saliva test, and it is hoped results will be published for its effectiveness in the short-medium term. Research is being undertaken in the UK, for example Hull University is working on a urine test, and Edinburgh University on steroid metabolomics and microRNA profiling. Edinburgh University and Endometriosis UK are two of the partners in an EU Horizon funded project, EUmetriosis, which includes work on diagnostics. [13]

Historically, there has been very limited investment in research for endometriosis and menstrual health conditions. This funding gap needs to be closed if we are to identify new ways to diagnose, manage and treat the disease effectively.

Addressing racial biases and discriminatory assumptions

Through our experience with the endometriosis community we believe this is a significant issue. The University of Oxford have highlighted that black women receive poorer care for endometriosis.[14] There are challenges faced by those in communities where talking about menstruation and/or issues are around fertility are taboo or challenging.

Discrimination and racial biases in other areas of women’s health are well known, and we believe are equally significant for endometriosis. Whilst there is some research now, due to historic lack of research there is limited researched evidence and more work is needed in this area to understand the experiences of different communities. Endometriosis UK is working with Cysters, a grassroots, community-led charity based in Birmingham, to research experiences from different communities, and we would welcome support for this initiative.

Potential impact of the10-year Health Plan for England

The 10-year Health Plan for England provides opportunity for a step change in support for girls and young women with endometriosis and all menstrual health conditions. By getting prompt recognition and symptoms and implementing the correct care pathways, there is the opportunity to significantly save resources by reducing multiple appointments where symptoms are not recognised in primary and secondary care and A&E. Whilst endometriosis is a long term condition sickness can be reduced, for example disease progression may be prevented with timely intervention, and giving a name to symptoms promptly rather than normalising severe pain should reduce the mental health impact of not being believed or supported to manage symptoms. Future life choices can also be made with appropriate information. Outcomes for girls and young women will included better attendance at school and in further or higher education, improved attainment, and attendance at work.

Technology and digital could provide a significant opportunity for diagnosing girls and young women. For example using AI to flag those who could have the symptoms of endometriosis, and single patient record facilitating ongoing support for long term conditions.

There is real opportunity through ensuring the NHS workforce is fit for future by developing gynae ultrasound, and it’s availability in the community. This offers significant potential for supporting diagnosis and ongoing management of endometriosis, adenomyosis and menstrual health conditions, and reduce the ‘diagnostic only’ laparoscopies where a second operation is then needed with the correct surgical team to remove the endometriosis.

October 2025

References:

1)       Endometriosis UK, “Dismissed, ignored and belittled – The long road to diagnosis is the UK”, 2024

2)       The National Confidential Enquiry into Patient Outcome and Death. ‘A Long and Painful Road’ 2024

3)       Endometriosis UK Survey of Young People’s Experience of Endometriosis - August 25  - unpublished

4)       NICE, Endometriosis: diagnosis and management NG73, published 2017, partial update 2024 

5)       Plan International UK, Break the Barriers: Girls’ experiences of menstruation in the UK, 2018

6)       Menstrual Cycle Support, Understand every day of your menstrual cycle, accessed September 2025

7)       Endometriosis UK, “Dismissed, ignored and belittled”, 2024 – further analysis on young people – unpublished

8)       Taylor, P., & Greig, A. Investigating Young Women’s Retrospective Perceptions and Experiences of Menstrual Health Education in School Settings, England. Women’s Reproductive Health, 11(3), 697–716, 2024

9)       DHSC, Women’s health hubs: core specification, update March 24

10)   NHS England, Waiting list Minimum Data Sets Information, accessed Sept 2025

11)   Royal College of Obstetrics and Gynaecology, Elective Recovery Tracker, accessed Sept 2025

12)   Rachel Reid-McCann, et Al, Longitudinal association between dysmenorrhoea in adolescence and chronic pain in adulthood: a UK population-based study, The Lancet Child & Adolescent Health, ISSN 2352-4642, 2025

13)   European Commission, EUmetriosis, accessed September 2025

14)   University of Oxford, Nuffield Department, Endometriosis: black women continue to receive poorer care for the condition, March 2023