Endometriosis Action Month: Charity urges everyone with endometriosis symptoms to visit GP, as data shows three in four women and those assigned female at birth would put off seeking help.
- 75% would not go to doctor with potential endometriosis symptoms, which include chronic pelvic pain, painful bowel movements, pain when urinating, painful sex, fatigue and difficulty getting pregnant
- More than a fifth would worry doctors might not take these symptoms seriously
- Figures 'must act as a wake-up call' to Government and NHS', says charity
- Many would not feel comfortable talking about periods and menstrual health with family, friends, colleagues or medics
- A diagnosis is needed to access management and treatment options; left unmanaged, endometriosis may progress.
New research shows that three quarters (75%) said they would put off going to see a doctor if they were experiencing painful periods which were interfering with day-to-day activities. This figure rises to 92% of those aged 16-34.
The data, from a survey of 2,000 UK respondents conducted by Endometriosis UK, is being released to mark the start of Endometriosis Action Month (March 2023).
Among those who said they would put off going to see a doctor in this situation, 24% said it was because they considered painful periods to be a normal part of life, while 23% said they would think it was “not serious enough to bother a doctor with”.
Chronic pelvic pain and painful periods that interfere with your everyday life can be symptoms of endometriosis. This common, sometimes debilitating but often-ignored disease affects 1 in 10 women and those assigned female at birth, and can impact all areas of life include mental health, career and relationships. Common symptoms include:
- chronic pelvic pain;
- painful periods;
- pain during or after sex;
- painful bowel movements
- pain when urinating
- fatigue; and
- difficulty getting pregnant.
Those with one or more of these symptoms may want to keep a pain and symptoms diary to help them in discussion with their doctor to help diagnosis, Endometriosis UK advises. Getting an earlier diagnosis of endometriosis allows access to treatment and management options; without this, the disease may progress.
Emma Cox, CEO of Endometriosis UK, says: “If you’re experiencing chronic pelvic pain or other symptoms of endometriosis, talk to your GP. In the past, endometriosis symptoms may have been shrugged off as ‘normal’ or ‘not serious’ - these myths are slowly but surely being eradicated, although there is still a long way to go. Keeping a pain and symptoms diary can help when speaking to your GP, helping them understand what you’re experiencing and supporting a diagnosis.
“These findings must be a wake-up call for society as a whole, including Governments and the NHS: we cannot continue to ignore and normalise the sometimes debilitating symptoms of endometriosis, and the impact of this disease and other menstrual health conditions. With an average time to diagnosis of eight years, urgent action is needed to ensure all those affected by endometriosis have a prompt diagnosis and access to the right care.”
Endometriosis UK’s new data shows that just 49% of the public are aware that endometriosis is a gynaecological health condition - a figure which drops to just 31% of men.
The data also shows that half (51%) of women and those assigned female at birth would feel comfortable talking about periods with their parents or guardians. The figures varied when it came to talk to their spouse (73%), friends (67%), colleagues (33%), medical professionals (72%) or ‘someone I have just met’ (15%) - meaning many feel uncomfortable with such discussions.
The symptoms of endometriosis can begin at puberty, and in some cases the impact may last for life, including after the menopause.
Currently, it takes an average of eight years to get a diagnosis of endometriosis in the UK; without a diagnosis, treatments can't be accessed and the disease may progress. While the taboo around menstrual health, and a lack of awareness of endometriosis, may contribute to this, Endometriosis UK believes that it is essential that NHS and Governments take action to ensure that healthcare practitioners recognise the symptoms, and that pathways and services are improved.
An increasing number of individuals, organisations and employers are being proactive about talking about the impact of endometriosis, or supporting those with the disease – including through Endometriosis UK’s Endometriosis Friendly Employer scheme. This has been helped by high-profile figures including footballer Leah Williamson sharing their endometriosis story.
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. The condition is most active from puberty to menopause, although the impact can be felt for life.
What are the symptoms?
Endometriosis symptoms can vary in intensity from one person to another. Whilst for some they may not experience symptoms at all, for others it can be 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.
Patient case studies from those living with endometriosis, interviews with Endometriosis UK medical representatives and interviews with Endometriosis UK spokesperson are available on request, please contact communications@endometriosis-uk.org or call 020 7222 2781.
About the survey
2,000 UK adults were surveyed by Censuswide during January 2023 – questions about experiencing painful periods, and discussing menstrual health, were only put to the 1,000 women and those assigned female at birth in the research.
If you were experiencing painful periods which were interfering with your day-to-day activities, what, if any, would be the main reason(s) you put off going to the doctor? (Tick up to 3)
- I would not put off going to the doctor: 24.89%
- I think painful periods are a normal part of life: 24.35% I don't think it's serious enough to bother a doctor with: 23.48%
- I don't want to trouble the NHS because I know it is under a lot of pressure: 20.78%
- I don't think the doctor would take me seriously: 20.56%
- Because I'd be embarrassed: 12.77%
- There is/are no main reason(s) why I would put off going to the doctor: 11.26%
What do you primarily think endometriosis is? (Select best fit)
|
Answer |
All respondents |
Women and those assigned female at birth |
Men |
|
A gynaecological health condition |
49.08% |
69.81% |
31.46% |
|
I have never heard of endometriosis |
18.25% |
8.87% |
26.22% |
|
I don't know; I have heard of it but don't know what it is |
16.56% |
11.15% |
21.16% |
|
A type of cancer |
5.97% |
4.00% |
7.64% |
|
A type of osmosis |
3.88% |
2.06% |
5.43% |
|
A brain condition |
3.43% |
2.49% |
4.23% |
|
A sexually transmitted disease |
2.59% |
2.59% |
3.50% |
|
Other (please specify) |
0.25% |
0.11% |
0.37% |
If a colleague had to take time off work or full-time education due to chronic pelvic pain and painful periods, what would you be thinking, if anything? (Tick all that apply)
|
Answer |
All respondents |
Women and those assigned female at birth |
Men |
|
Think that this was a fair reason for taking time off |
37.49% |
40.26% |
35.14% |
|
Want to understand how I could support them in future |
37.20% |
41.56% |
33.49% |
|
Be worried about their long-term health |
28.69% |
29.11% |
28.33% |
|
Want to know more about the condition |
18.85% |
19.70% |
18.12% |
|
Nothing in particular |
10.84% |
9.63% |
11.87% |
|
Think this was not a good reason for taking time off |
7.21% |
6.17% |
8.10% |
|
Not be worried about their long-term health |
5.72% |
5.19% |
6.16% |
|
Not want to know any more about the condition |
5.17% |
4.00% |
6.16% |
|
Prefer not to say |
3.28% |
4.00% |
2.67% |
|
Other (please specify) |
0.55% |
0.65% |
0.46% |
How comfortable or uncomfortable would you be talking to the following people about periods and menstrual health?
(Scale: Very comfortable, comfortable, neither comfortable nor uncomfortable, uncomfortable, very uncomfortable, unsure)
My parent(s) or guardian(s)
|
Very comfortable |
20.78% |
|
Comfortable |
30.30% |
|
Neither comfortable nor uncomfortable |
20.35% |
|
Uncomfortable |
12.45% |
|
Very uncomfortable |
10.06% |
|
Unsure / Prefer not to say |
6.06% |
Other family members
|
Very comfortable |
14.72% |
|
Comfortable |
29.33% |
|
Neither comfortable nor uncomfortable |
27.49% |
|
Uncomfortable |
16.02% |
|
Very uncomfortable |
8.77% |
|
Unsure / Prefer not to say |
3.68% |
Spouse/ partner
|
Very comfortable |
41.23% |
|
Comfortable |
31.71% |
|
Neither comfortable nor uncomfortable |
13.85% |
|
Uncomfortable |
5.63% |
|
Very uncomfortable |
2.92% |
|
Unsure / Prefer not to say |
4.65% |
Friends
|
Very comfortable |
26.84% |
|
Comfortable |
40.15% |
|
Neither comfortable nor uncomfortable |
19.59% |
|
Uncomfortable |
7.03% |
|
Very uncomfortable |
3.03% |
|
Unsure / Prefer not to say |
3.35% |
Colleagues
|
Very comfortable |
9.31% |
|
Comfortable |
23.38% |
|
Neither comfortable nor uncomfortable |
27.60% |
|
Uncomfortable |
19.37% |
|
Very uncomfortable |
15.26% |
|
Unsure / Prefer not to say |
5.09% |
Medical professionals
|
Very comfortable |
34.09% |
|
Comfortable |
38.10% |
|
Neither comfortable nor uncomfortable |
16.67% |
|
Uncomfortable |
7.47% |
|
Very uncomfortable |
1.62% |
|
Unsure / Prefer not to say |
2.06% |
Someone I have just met
|
Very comfortable |
5.30% |
|
Comfortable |
9.96% |
|
Neither comfortable nor uncomfortable |
16.67% |
|
Uncomfortable |
23.81% |
|
Very uncomfortable |
39.83% |
|
Unsure / Prefer not to say |
4.44% |
