‘I would have been a very different person, had I been diagnosed sooner’
JADE Morgan says she’d have been a “different person” if she was taught about her body sooner.
The 34-year-old from Cardiff experienced a lot of pain throughout her school years and beyond, but was told by her peers and doctors it was normal.
It turned out, what she was experiencing was far from normal, and after battling to be heard for 15 years she finally had the diagnosis she’d waited for –she had endometriosis.
“I first began having periods when I was 14, and found myself struggling with painful periods, abdominal pain and fatigue within just a few months. I was told at GP appointments from the beginning that the heavy bleeding, pain and fatigue I was experiencing was normal and it was ‘just a period.’
“In school, my friends just told me to stop complaining, that every girl has periods and pain is normal and to just deal with it”.
She was prescribed the Pill and sent on her way.
But her symptoms didn’t go away and she finally reached “breaking point.”
“The pain became so severe I could no longer do my job, socialise, or even cook a simple meal for myself,” said Jade. “The pain was excruciating, I was collapsing regularly, became very frail, unable to eat due to vomiting and bowel issues so I would eat every two to three days and relied on supplements prescribed by the doctor.
“Some days I could not even get out of bed due to the agonising pain and exhaustion.
“During this time I was visiting the doctor every fortnight for months with little progress in improving my symptoms and I was absolutely terrified.”
She was finally diagnosed when she was 29 years old after doctors found endometriosis on her bowel and bladder. Surgery has since kept her symptoms at bay.
“There is no cure for endometriosis,” said Jade. “However, I am enjoying having good health whilst being mindful that symptoms could start again at any time according to the rate of regrowth which varies for everyone.”
Jade’s experience is not unusual.
With a diagnosis delay of a decade and a half, she now believes measures should be in place to avoid schoolchildren going through the same thing.
“My high school did not have very informative or in-depth sexual health education classes,” said Jade.
“I didn’t know any different. “I believed the pain, heavy bleeding and fatigue was something my friends went through too, that it was the same for every woman and I felt a failure as I was not coping with it at all.
“My mum often came with me to appointments knowing things were not normal. She believed me when I told her I was suffering, but we both trusted the doctors we visited.”
Jade has now started a petition to get menstrual wellbeing on the curriculum in Wales.
“I run a support group in Cardiff for anyone with endometriosis to attend meetings and know there are some real tragedies that women have experienced from not being diagnosed soon enough and being socially isolated from schooling age.
“Many have experienced multiple miscarriages which is just heartbreaking.”
Jaded added endometriosis, like other menstrual issues, are far from just a “bad period”.
“The bleeding can be extremely heavy, or it can be constant all month bleeding in various amounts. Fatigue is a common symptom of endometriosis often not taken seriously. It can be so severe it makes your whole body feel so heavy you cannot physically function.
“Mentally it is a struggle to think clearly, many describe it as brain fog.
“The pain is not just during your period and is not limited to the pelvic and abdomen areas. I would get pain all down my legs and back all the time when I was at my worst.
“Sex is extremely painful. Not just a bit uncomfortable but really distressingly painful. It can make intimate relationships very challenging and stressful.
“So-called ‘endo-belly’ is another symptom, which surprises many people including those that have it.
“One day my abdomen would be really toned and then next day during an endo flare the belly can make you look like you’re six months’ pregnant.
“Another surprising thing about endometriosis... is the social isolation many women experience because of this disease. It becomes a lonely journey when friends and professionals won’t believe or listen to you. You suffer in silence, and this needs to end.”
An endometriosis diagnosis is thought to take seven and a half years on average, but in Wales this is thought to be nine years.
This is far too long, Jade said. She believes if she had been taught about normal periods, her life would have looked a lot different.
“I would have been a very different person, following a different path in life had I been diagnosed sooner,” she said.
“I believe it would have been completely life-changing to have learnt in school what I was experiencing wasn’t normal.
“I would have felt I could have challenged my doctor more. Also my friends in school perhaps would have been more supportive if we had been properly educated with the right language to describe what was going on.”
Jade feels that if children were educated from a young age about periods, far fewer girls would go have to go through what she did.
“Many start periods quite young so I think children need to be taught about their bodies and menstruation as early as possible in order to recognise any issues as early as possible.
“I would hope that by the age of 10 girls should know what a healthy amount of bleeding during a period is, when is it considered heavy, and what feelings and pains are expected of a healthy period and what pain is abnormal and when see a doctor.”
Faye Farthing, Campaigns and Communications Manager at Endometriosis UK said: “The latest stats from Endometriosis UK show that 62% of women between the age of 16-24 don’t know what endometriosis is.
“To tackle this alarming statistic, menstrual wellbeing must be made a mandatory element of the new Welsh ‘Health and Wellbeing’ curriculum.
“The Welsh Government has a last opportunity before the curriculum is finalised to turn this situation around, and ensure young people in Wales understand about menstrual health and know when to seek help.
“In failing to do so, they are letting down the next generation of young people”.