Press Release: Endometriosis Action Month

Don’t ignore the pain: periods and pelvic pain should not get in the way of life, warns charity as Endometriosis Action Month begins

Endometriosis UK is urging anyone experiencing painful periods and pelvic pain which interfere with day-to-day activities to take action and contact a doctor, rather than put it off.

The call comes during Endometriosis Action Month as new data shows that 89% of women aged 16-24, and 76% of all women, would put off going to the doctor if they were experiencing painful periods which were interfering with their day-to-day activities.

The most common reasons cited included ‘I think painful periods are a normal part of life’, ‘I don't think the doctor would take me seriously’ and ‘I don’t want to trouble the NHS during the Covid-19 pandemic’.[1]

Endometriosis is a common, sometimes debilitating but often ignored gynaecological disease affecting 1 in 10 women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. As well as chronic pelvic pain and painful periods , symptoms include pain during or after sex, painful bowel movements or pain when urinating, difficulty getting pregnant and fatigue. The type and severity of symptoms experienced varies depending on where the endometriosis is growing.

Those with the disease often have their symptoms dismissed, not believed, or told it is ‘normal’.  It takes an average of eight years to get a diagnosis of endometriosis in the UK - a figure that hasn’t changed in a decade - during which time, the disease may progress.

The polling also shows an increase in those correctly able to identify endometriosis as a gynaecological condition when presented with a list of options – 31% of men and 75% of women could do so this year, up from 25% and 66% last year.

Emma Cox, CEO of Endometriosis UK, says: “We hear a lot of stories from those with endometriosis who were told as a teenager that having excruciating pelvic pain and periods was ‘just part of being a woman’ and to put up with it, that they were being overdramatic, that the pain was all in their head, or their level of pain not believed.

“As awareness and understanding of endometriosis grows, we hope comments like these can be consigned to history – while many may experience period pain at some point, chronic pelvic pain and period pains that interfere way of everyday life are different and should not be seen as normal.

“Awareness is increasing thanks to the dedication of thousands of Endometriosis UK’s supporters and campaigners. But it’s not increasing fast enough. During Endometriosis Action Month, we’re urging those experiencing symptoms of endometriosis to take action and contact their doctor, so they can get the support and treatment they need.”

 

Radha Mistry is 33 and works in IT. She was diagnosed with endometriosis six years ago. She says: “My periods had been quite regular and okay until my early 20s, when I started getting terrible pain, predominantly this sharp, throbbing pain on my right-hand side like someone was stabbing my ovary with a pencil - and the periods were lasting a fortnight or more. I soon found that regular over-the-counter painkillers like paracetamol wasn’t helping.

“I was struggling to keep up with work or make social events with friends, but I tried to put on a brave face, especially because periods are a taboo subject in my community. It was only once I spoke to friends that I realised what I was having wasn’t normal - looking back, I definitely kept it a secret longer than I should have. If period pain is getting in the way of your everyday life, you should definitely speak to someone.”

 

Cassia Rowland from London is 25 and works in policy research. She says: "My periods have been agonising ever since they started — I still remember being sent home from school aged 11, barely able to walk and wondering desperately what was wrong with me. I was lucky to have a supportive family and get some help from my GP, but it felt like everyone saw it as just bad luck and something I'd have to put up with, when in fact I had a medical condition.

"It’s so important to understand that periods don’t have to be excruciating and that there are things that can really help improve it. With treatment, I no longer have to plan my whole life around my periods and my endometriosis, and it feels amazing and so liberating."

Due to an historic lack of research into endometriosis, we don’t know what causes it, there is no cure, diagnosis can take years, and current treatments options are limited, leaving some in chronic, debilitating pain for many years. For some, symptoms make it difficult to stay in education or employment and can negatively affect social life and relationships. Long diagnosis times and not being believed can impact on mental as well as physical health.

 

 

ENDS

Notes to editors

For further information, including requests for interviews with Emma Cox or those living with endometriosis, please contact us on communications@endometriosis-uk.org

 

About endometriosis

Endometriosis is where cells similar to those in the lining of the womb grow in other places – most commonly elsewhere in the pelvic cavity. These cells react in the same way to those in the womb during the menstrual cycle, building up and then breaking down and bleeding. Unlike the cells from the womb which leave the body as a period, this blood cannot escape. This can cause inflammation, pain and the formation of scar tissue.

According to 2020 research by the All-Party Parliamentary Group on Endometriosis, the average time with symptoms to diagnose in the UK is eight years, and once diagnosed only 19% are seen in an endometriosis specialist centre.

Endometriosis Action Month

For a number of years, March has been Endometriosis Awareness Month. While this has been a successful initiative, allowing us to reach new audiences and spread knowledge about the challenges of living with endometriosis, we know that awareness only goes so far.

What those with endometriosis need and deserve is tangible action and positive changes which improve their wellbeing. That’s why we’ve decided that March 2022 will be Endometriosis Action Month. Find out more here.

 

Polling data

If you were experiencing painful periods which were interfering with your day-to-day activities, what, if anything, would be the main reason you put off going to the doctor, if at all? (2,058 respondents)

	All	16-24	25-34	35-44	45-54	55+
I would not put off going to the doctor	24%	11%	16%	20%	26%	38%
Total saying would put off (sum of all below)	76%	89%	84%	80%	74%	62%
I think painful periods are a normal part of life	18%	19%	19%	19%	16%	16%
I don't think the Doctor would take me seriously	16%	23%	21%	17%	12%	8%
I don't think it's serious enough to bother a doctor with	14%	16%	17%	15%	14%	9%
There is not a main reason why I would put off going to the doctor	12%	7%	10%	10%	16%	16%
I don't want to trouble the NHS during the Covid-19 pandemic	9%	9%	7%	10%	7%	10%
I’d be embarrassed	7%	15%	9%	8%	6%	3%
Other	1%	0%	1%	0%	2%	1%

 

How, if at all, has living through Covid-19 changed the way you talk about your health and wellbeing at work and with colleagues? (1,202 men and women in work)

	ALL	MEN	WOMEN
More likely to discuss openly now (Net)	46%	43%	47%
Much more likely to discuss openly now	18%	17%	19%
Slightly more likely to discuss openly now	28%	26%	28%
No change	49%	52%	47%
Slightly less likely to discuss openly now	3%	2%	4%
Much less likely to discuss openly now	2%	3%	2%
Less likely to discuss openly now (Net)	5%	5%	6%

 

What do you think endometriosis is? (2,000 respondents)

	All	Men	Women
A gynaecological health condition	53%	31%	75%
I don't know	32%	49%	16%
A brain condition	6%	8%	4%
A form of osmosis	5%	6%	3%
A type of cancer	3%	5%	1%
A sexually transmitted disease	1%	1%	0%
Other, please specify	1%	1%	0%

 

If you were taking time off work because of a health condition which was causing painful periods and chronic pelvic pain, would you feel concerned about discussing that condition with your employer? (1,368 women)

	All women	16-24	25-34	35-44	45-54	55+
Yes	47%	60%	56%	42%	39%	38%
No	39%	31%	33%	44%	49%	41%
Not sure	14%	9%	12%	14%	12%	22%

 

If you were taking time off work because of a health condition, would you feel concerned about discussing that condition with your employer? (1,202 men and women in work)

	All	Men	Women
Yes	38%	35%	40%
No	47%	51%	44%
Not sure	16%	14%	16%