“For 22 years I was dismissed by countless healthcare professionals,” Jen Moore, 35, who was diagnosed with endometriosis and adenomyosis, and now campaigns for others, told The i Paper.
From her first period at 11 until the age of 32, Ms Moore experienced extreme pain but said every time she went to the GP she was told it was normal.
“I started to think, ‘maybe I just have a low pain threshold. Why is everybody else able to deal with this so much better than I am?’
It comes as a new report from charity Wellbeing of Women suggests that over half of women say period symptoms negatively affect their life, but due to embarrassment and/or being ignored, they wait 22 months before seeking medical help.
Wellbeing of Women has launched a Period Symptom Checker to help women understand when they should go to their healthcare professional. A woman can enter her symptoms and receive a personalised letter to give to her GP.
Jen Moore is an endometriosis and adenomyosis campaigner (Photo: Supplied)Ms Moore said that her periods “ruled my life”. For years she was on the pill to control them, so her symptoms were confined to the withdrawal bleed, but during that week she would stay in bed the whole time.
“It wasn’t until I started tracking my symptoms fully that I noticed patterns and just how much endometriosis and adenomyosis were impacting my whole body. It was only then that I was finally believed; before that, my word was never enough.”
Ms Moore felt ignored by healthcare professionals for two decades (Photo: Supplied)Ms Moore has since had two surgeries, including a hysterectomy for her adenomyosis.
A year after her hysterectomy she went to A&E with severe endometriosis pain, and said she waited 25 hours before being told a gynaecologist couldn’t see her because she no longer had gynaecological organs. When she eventually got an appointment it was for 14 months’ time.
“The understanding and education about these conditions isn’t there,” she said, calling for a “complete overhaul” of the way the healthcare professionals are taught about them. “We can speak up about our symptoms as much as we want. If the doctors don’t know what to then do, nothing will change.”
What are the symptoms of endometriosis and adenomyosis?
Endometriosis is a condition where tissue similar to the lining of the uterus grows outside of the uterus. It can cause:
Chronic pelvic pain lasting for six months or more Pain in the lower back Very painful periods, and heavy or prolonged bleeding Spotting or bleeding in between periods Irregular periods Painful bowel movements and diarrhoea or constipation during a menstrual period Fatigue Painful urinationAdenomyosis is a a condition where the lining of the uterus grows into the muscle of the uterus, and can result in symptoms such as:
Heavy menstrual bleeding Painful sex Pelvic pain Prolonged bloating Pressure in the lower abdomen Bleeding in between periods or after sex.The Wellbeing of Women survey also found that only 1 in 10 women can identify all the signs of heavy menstrual bleeding, which could lead to fewer presenting to the GP with their symptoms.
“Despite my symptoms worsening – dizzy spells, shortness of breath, weak limbs, and blurred vision – my anaemia was always attributed to my vegetarian diet,” she said.
Henrietta experienced severe period symptoms for two decades (Photo: Supplied)
“I thought that was normal so didn’t even think to mention it,” she said.
“I wouldn’t last 10 minutes. I would put them on and it would be like a crime scene.”
“It got to a point where it was affecting my breathing. I was hearing ringing in my ears and I couldn’t carry heavy things,” she said.
However, she continued to struggle with everyday tasks such as carrying shopping, and ended up in hospital again during the Covid lockdown, where staff noticed a protruding lump “like a pregnant uterus” and it was finally suggested that she had fibroids.
'I had a private hysterectomy - it cost £18k but was over six months quicker'
Read More“I was really upset about all these years of suffering and pain, and building my entire career around it.” Henrietta said that she knew at university that she would have to be freelance to work round her periods as she believed there was “no way” anyone would employ her if at times she could not leave her bedroom floor.
Since her diagnosis, Henrietta has had a uterine artery embolisation to shrink the fibroids by blocking their blood supply, and a transcervical resection of fibroids, an operation to remove some of the benign tumours. Her periods are now lighter, lasting four to five days rather than 10 to 14.
“I have reached out several times, so I hope I hear back from them soon and that the open myomectomy [surgery to remove fibroids] will be the key to finally being able to live my best life.”
What are the symptoms of fibroids?
Fibroids are non-cancerous growths in the uterus that can vary in size. They can cause:
Heavy and/or painful periods that may last longer than normal Pelvic pressure or pain Frequent urination and trouble urinating Constipation Pain in the stomach area or lower back Pain during sex“It’s also a terrible loss to the economy and society.”
Dr Michael Mulholland, Royal College of GPs, said: “It’s never easy to hear when any patient reports not feeling as though they have been listened to.
An NHS spokesperson said: “The experiences of many women affected by heavy periods when they seek healthcare often aren’t good enough, with many not getting the, often quite simple, treatments they need.
“We want to be sure this does not happen, so raising awareness of heavy menstrual bleeding is really important so we can diagnose and treat patients quicker. This is why we have rolled out women’s health hubs, which are in place in over nine in ten local areas in England.”
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