'Intense', 'barbed wire', 'stabbing' and 'relentless' are just some of the words used to describe endometriosis - and despite it being as common as diabetes, those living with the condition often complain about suffering on with little help.
March marks Endometriosis Awareness Month - or as it's now being called - Action Month.
It's a chronic condition with no cure that occurs when tissue similar to the lining of the womb grows outside of the womb (uterus) in places such as the ovaries, fallopian tubes, bowel, bladder and diaphragm.
Currently, one in 10 people assigned female at birth are affected, which accounts for around 1.5 million in the UK and 200 million globally.
READ MORE - Glasgow MSP Monica Lennon says advocating for endometriosis can be 'exhausting and traumatising'
Yet despite these shocking statistics, many do not realise the impact it can have on an individual's body and mental well-being.
The average waiting time for a diagnosis in Scotland stands at eight and a half years.
According to the APPG (All Party Parliamentary Group on Endometriosis) 2020 findings led by the late Sir David Amess - the MP for Southend West - it was determined that more has to be done to help women.
The review into care found out that prior to a diagnosis, 58% of patients visited their GP over 10 times whilst 21% visited doctors in hospital 10 times or more.
In addition, 53% went to A&E and despite their pain, 54% were "not very or not at all confident" they could get an appointment with a gynaecologist about their symptoms if they felt they needed to.
One woman who sadly knows the impact of endometriosis all too well is 27-year-old Rhiannon Turner from Glasgow.
Rhiannon waited a decade to be diagnosed with 'endo'
The support worker told Glasgow Live that more needs to be done to help those diagnosed - and those trying to get diagnosed - rather than being told their pain and period worries are 'normal' and 'probably IBS'.
Rhiannon explained: "I had my first laparoscopy in 2019 which found no endometriosis. I just knew I had endometriosis as it fitted my symptoms."
After pushing for an MRI with a private consultant, Rhiannon received a letter seven months after surgery stating "evidence of endometriosis had been seen on MRI" which confirmed what she suspected all along.
Despite having surgery to remove lesions back in February 2020, to date she has spent £400 on private consultations alone, yet no one has been able to give her definite answers about what she should do next.
Rhiannon feels " left in the dark" and says she has been let down by doctors.
She admitted: "I don't trust many gynaecologists at the moment because there's so many of them telling me different things about what stage I'm at, what surgery I should have and whether I should be having more surgery.
"I don't know what to do which is just frustrating. I paid about £150 for a consultation which I thought may give me some answers and I feel as though I've come out of it no further forward."
Glasgow is home to a specialist centre - the BSGE (British Society for Gynaecological Endoscopy) - which many people can be referred to for endometriosis surgery.
However Rhiannon is one of many who told Glasgow Live they have been on a waiting list for a year, only to be removed and put back on the NHS list.
She explained: "Back in April 2021, I was referred to Glasgow's BSGE centre by the NHS for excision surgery (the preferred method for treating endo) however it sadly didn't go as planned."
She continued: "I was told last April due to my surgery findings and MRI scan I would be put on the list for excision surgery but I hadn't heard anything.
"I then found out through social media that they're [BSGE] only doing excision surgery for confirmed stage four disease. So everybody else that's on the waiting list has just being referred back to general gynaecology which is obviously not great - especially if you think you're getting surgery done by a specialist to then of be told this.
"They said it's all down to funding. I know there's a lot of women in the exact same position. We were promised surgery. For me, it's the fact that there's no communication and you have to find out these things online - especially when you think you're going to be treated by a specialist.
"I feel like Scotland in general is just shocking for endo care."
The Scottish Government responded to our query and confirmed its focus is on reducing waiting time for laparoscopies.
A spokesperson said: “Progress is already underway to implement an Endometriosis Care Pathway to be adopted across Scotland. The pathway will support healthcare professionals to recognise the symptoms of endometriosis and provide a timely, standardised referral care pathway for women with suspected endometriosis who require further support and treatment.
“We are focused on reducing the waiting time for laparoscopies. Reducing the time to diagnosis is not by itself an effective measurement or demonstration of improved health and well-being outcomes. We will however continue to work with Public Health Scotland and partners to identify gaps in national data on gynaecology services to establish where further improvement is required that will be meaningful for all women and their families."
An NHS spokesperson pointed to the pandemic causing delays to services across the country.
The health board representative added: "NHS Greater Glasgow and Clyde has been facing significant challenges due to Covid-19 and other seasonal pressures, and our gynaecological services, along with a range of services across NHSGGC, have been affected by these pressures.
"Across NHSGGC, our staff have been working tirelessly to care for patients, prioritising emergency, trauma and cancer care alongside covid admissions. However, for a variety of reasons, as is the case in health boards across the country, it has been necessary to pause some clinical activity, including some treatments for endometriosis. This situation is kept under constant review, and we apologise to anyone who has been affected by this.
"Anyone who thinks they need urgent medical attention should speak to their GP first, or, call NHS24 on 111. We are reminding the public not to come to A&E unless suffering from a very urgent or life-threatening condition."
Glasgow Live has also approached BGSE for comment.
Despite her struggles, Rhiannon has said being diagnosed was massive relief as it gave her answers to her daily pain.
She urges people to listen to their own bodies and concluded: "It was a relief because I had symptoms for so long and had many doctors gaslight me telling me it was normal.
"It's such a common condition and I just feel there's not much awareness around it. Nobody talks about it so you have to go off on your own and research."
What is endometriosis and what are the symptoms?
Endometriosis is a chronic condition that occurs when tissue similar to the lining of the womb grows and attaches itself to other organs causing inflammation and pain.
Endometriosis is not the endometrium - a common myth seen on many medical websites and TV shows such as Grey's Anatomy.
Common symptoms include:
- Painful and heavy periods
- Painful sex
- Infertility or sub-fertility
- Painful bowel movements
- Fatigue
- Brain fog
- Depression
- Abdominal pain outside of your period
- Pain elsewhere in the body such as chest, leg or shoulders
- Nausea
- Night sweats/hot flushes
It is worth noting you can have endometriosis with no symptoms or very few as symptoms vary from person to person.
For more information and support, please visit the Endometriosis UK website here.
You can read the full APPG 2020 report on endometriosis here.
Do you have endometriosis story you want to share to raise awareness? Email sophie.buchan@reachplc.com.
