Watch: special report by ITV News Meridian's Ravneet Nandra
Women who live with the painful and incurable disease Endometriosis have come together to shine a light on those suffering in silence during lockdown.
The disease effects 1 in 10 people, causing chronic pain and sometimes infertility. It takes on average seven and a half years to get diagnosed- but there's a fear thousands are suffering under the radar.
Georgia Day - Founder, Endometriosis Support IOW
Georgia from the Isle of Wight tosses and turns in the early hours with contraction-like pains in her abdomen. Her Endometriosis keeps her restless most nights.
Pain she's had since she was 12. She's now 31.
"Around 2017, I woke up in the middle of the night with the most horrific stomach cramps out of no where, and I fainted."
After two years of appointments and misdiagnoses, Georgia had key hole surgery to determine she does have Endometriosis.
What is Endometriosis?
Endometriosis is when tissue similar to those found in the womb starts to grow elsewhere in the body. It can affect women of reproductive age.
chronic pain in your pelvic/abdomen
heavy and/or irregular periods
pain during/after sex
difficulty getting pregnant
There's currently no cure for endometriosis, but there are treatments that can help ease the symptoms, e.g pain killers and contraceptives. However once diagnosed, surgery to extract the tissue out of the body can be offered.
women in the UK suffer from Endometriosis
women affected by Endometriosis in the UK
on average to get a diagnosis
26-year-old Imogen from Gosport was due to have surgery to cut the Endometriosis out of her body. Due to the pandemic, her surgery has been delayed but she doesn't know when she'll have it.
This surgery really will change my life and if it's only for a year, then I will take that because I'm in pain every day and to have a year without pain would be amazing. Life-changing!
Jayde Weller and Tom Mayhead
But for others, that life-changing treatment may never come. Jayde Weller from Portsmouth says the guilt of not being the mother and wife she wants to be is just as painful as her disease.
Her Endometriosis is spreading through her body and the pandemic has meant her routine appointments have been delayed by 18 months.
Data analysed by The University of Oxford shows that the Covid-19 pandemic meant an abrupt change in healthcare provisions in the UK, including Endometriosis treatments and appointments.
Over 2000 people in the UK took part in the survey. 88% of respondents reported that their treatment has been affected by the pandemic. Although 59% reported no difficulties with the availability of their current treatments, 25% had difficulty obtaining repeat prescriptions. Respondents also described having to change their medication (painkillers 8%; hormones 6%) or having to stop them altogether (painkillers 6%; hormones 5%).
The impact on planned treatments was much greater. 51% of respondents reported cancelled or postponed gynaecologist appointments, 45% cancelled or postponed procedures (36% for surgeries and 9% for fertility treatments). Additionally, 16% said that their GP appointments were affected.
reported treatment has been affected by the pandemic
reported cancelled or postponed gynaecologist appointments
reported surgeries cancelled/postponed
reported fertility treatments cancelled/postponed
An NHS spokesperson said: “This survey is nearly nine months old so doesn’t account for the significant increase in Endometriosis care the NHS has provided since then.
Any woman who thinks they are showing signs or symptoms can access more information on the NHS.UK or endometriosis.UK websites and if still worried should contact their GP for advice, treatment and referral for tests so that their symptoms can be treated as quickly as possible.
Local charity Endometriosis South Coast prides themselves in being an inclusive charity set up to help people along the South Coast who are going through the diagnosis stages of endometriosis or have been diagnosed with the condition.
They say some charity members have had treatments delayed by as long as 18 months and talking about Endometriosis should be a 'normal thing.' The founder of the charity is looking at how different groups of people are affected by Endometriosis in her PhD studies.
Jodie Hughes - Founder, Endometriosis South Coast
Every year, people around the world march together to show awareness of the disease. But this year, like the last, the marches have been a bit more distanced.
Members of the charity Endometriosis South Coast walked 25 miles from the Princess Anne Hospital in Southampton to the QA in Portsmouth to raise money. While Tom Mayhead has been running 100k all month.
Local MPs Caroline Noakes- Romsey and Southampton North and Alan Whitehead- Southampton Test also showed support and walked some of the way there.
At the start of the month, the government launched a call for evidence to improve health and wellbeing of women in England. Women are being encouraged to share their experiences of the health and care system. It will form the basis of a landmark government-led Women’s Health Strategy.
Emma Cox, Chief Executive of Endometriosis UK hopes this consultation will identify inequalities women may experience.
Emma Cox - Chief Executive, Endometriosis UK