It affects one in 10 women and can result in major surgery but many had to wait more than 10 painful years for a diagnosis
WOMEN will be marching through Cardiff to protest against the 10-year wait many of them went through before being diagnosed with a painful condition that can require major surgery to correct.
Endometriosis is a chronic condition that affects one in 10 women in Wales. The average diagnosis wait time is 10 years in Wales, according to Endometriosis UK- the worst of all four UK nations.
Endomarch is running for a 10th time, on March 23, to stop women living with endometriosis from feeling alone and call for better medical treatment. The marchers, dressed in yellow, will meet at 2pm in front of the National Museum of Cardiff and walk to Queen Street and back.
One of the Endomarch organisers, Alexis Hazlehurst, 41, said: “The week of my period was completely debilitating, and I couldn’t leave the house.
“I would often end up in hospital because of the heavy blood loss that I would suffer.
“I would end up with severe anaemia, fatigue, and these are the symptoms outside of the pain.
“It’s like having food poisoning, but for two or three weeks of the month. It takes a massive toll on your body.”
Ms Hazlehurst now walks with crutches because the endometriosis spread to her spinal ligaments and nerves.
The condition has also stopped her from working because she was unable to go into the office due to the pain and ended up taking too much time off sick.
She has enrolled in the Open University to qualify in education studies, as this is more manageable with her symptoms.
The pain I go through now with endometriosis, I actually would rather give birth to my children again”
Lucy Kazmi
It took 12 years for Ms Hazlehurst to be diagnosed with endometriosis.
Aged 14 she had a ruptured endometrial cyst, which was misdiagnosed as appendicitis, and was finally diagnosed aged 26.
In between this period, she was diagnosed with IBS, anxiety, and phantom periods.
Ms Hazlehurst has had nine surgeries and has now had a full hysterectomy – “It literally costs women organs,” she said.
She decided to get involved with the march in 2016: “I’d had to fight and advocate for so long just to get a diagnosis, and then I was left fighting for treatment as well. It just didn’t seem right.”
What is endometriosis?
Endometriosis is a chronic condition in which tissue similar to that inside the womb, is found elsewhere in the body, most usually in the pelvis.
Endometriosis spots or lesions cause irritation, bleeding, inflammation and scarring. They can also cause adhesion, which is where organs stick together with a band of scar tissue.
According to Endometriosis Cymru, the symptoms are:
- Pelvic pain
- Painful periods that interfere with everyday life
- Heavy menstrual bleeding
- Pain during or after sex
- Painful bowel movements
- Pain when urinating
- Difficulty getting pregnant
- Fatigue
- Feeling weak or fainting
- Aching legs
The cause is not known but Endometriosis UK research says there may be a genetic link. There is no cure but treatments fall into three categories:
- Hormone therapy
- Contraceptive pill- reduced levels of oestrogen slows endometriosis
- Relugolix- now available on NHS England and Wales- only available if all other options are exhausted
- Drugs
- Ibuprofen
- Paracetamol
- Medicine to reduce heavy bleeding
- Antidepressants to reduce symptoms
- Surgery
- Remove the endometriosis
- Remove organs involved in the endometriosis
Julie Dixon, 47, another of the event organisers, said: “I got involved because I was sick of waiting for treatment.
“The amount of misdiagnosis and medical negligence that happens with endometriosis.
“I was sick of being brushed off with being in pain is part of being a woman.”
Ms Dixon was diagnosed later in life when she came off the contraceptive pill and wanted to have children.
Endometriosis had spread to her ovaries, bladder, bowel, pouch of douglas and womb.
Ms Dixon was unable to have children and was refused IVF treatment.
“It affects every aspect of your life. It affects your friendships, your career and whether you can have children,” said Ms Dixon.
Organiser Lucy Kazmi, 36, said she has had six surgeries and is waiting for her seventh.
“The pain I go through now with endometriosis, I actually would rather give birth to my children again,” said Ms Kazmi.
She has a 17-year-old daughter, Liv Kazmi, who has not been diagnosed with endometriosis, and she hopes that this never happens.
She added: “I was very much alone when I first got diagnosed with it, because nobody knew anything about it.
“There wasn’t as much information out there about it, so I was very much on my own in the dark, scared and fighting.”
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The Endomarch was set up by Niki Dally in 2015 and is part of a wider movement around the country, with marches also happening in London, Manchester and Glasgow. Ms Dally has had to take a step back from organising this year due to health problems.
Endomarch is in partnership with Endometriosis UK and Fair Treatment for the Women in Wales.
Wales currently only has two specialist endometriosis surgeons and the University Hospital Wales, in Cardiff, is the only specialist centre in Wales.
The Welsh Government appointed endometriosis nurses to each health board three years ago, to try to improve the situation.
It said: “Endometriosis is one of eight priorities in our Women’s Health Plan for Wales, which sets out key actions that will lead to improvements.
“We have already funded endometriosis nurses in every health board, developed the Endometriosis Cymru website and provided £50 million of additional funding to help cut the longest waiting times, which includes gynaecological conditions.
“We are also working with GPs to raise awareness of the condition and make every contact count.
“Funding of £3 million will also be used to establish a Women’s Health Hub in every health board by March 2026, to support timely diagnosis and management of menstrual conditions including endometriosis.”
- You can follow Endomarch on Facebook and Instagram
- You can use the track your symptoms function on Endometriosis Cymru
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