Our founder has used World Health Day (Sunday 7 April) to say that females are falling way behind on wellbeing – expecting less support in maternity and more pain and loneliness when they pass away.
Dr Anita Sharma has pointed to a range of figures including a slump in the number of women feeling supported during pregnancy (1) to a stagnation in female life expectancy, to highlight the divisions in male and female healthcare.
And while the World Health Organisation (WHO) is pushing good health as being a right for all, she is saying this is simply not a reality for women – particularly if they come from disadvantaged backgrounds.
To illustrate, the founder of the Endometriosis Awareness North charity reminded decision-makers:
• That widows dying alone had little or no mental health support
• Waiting times for cancer scans were far too long (3)
• There was a 7.5 year delay for a diagnosis of endometriosis (4)
• That markedly more women visited their GP than did men (5) and women could expect spending more of their lives in pain (6).
“Although there is now more choice in where a woman gives birth, there is still a perception that the process is dangerous, due to news reports about maternity services” said Dr Sharma, “and this is just the tip of a very nasty iceberg. Women too often feel dismissed by our male-dominated health service and worst of all, report that their fears about symptoms are not being listened to and even dismissed.”
Alarmingly, women were still not making decisions about their own bodies, especially in patriarchal cultures. She continued. “This dangerous thinking is most in evidence when it comes to gynaecology, Some men are still making decisions on behalf of their wives and are even opening confidential communications on sexual health meant for their spouse. Their sense of embarrassment outweighs the health of those they love.”
The WHO has produced a plethora of poster pleas translated into different languages to highlight the plight of those who suffer health inequalities. These include:
· Quality health services for all
· Better education, and information generally
· Safe drinking water and clean air for everyone
· Good nutrition
· Quality housing
· Decent working and environmental conditions, and freedom from discrimination.
Concluded Dr Sharma: “These may seem like huge global issues, but they are on our doorstep. The health provision in some parts of our borough is better than in others. The air in more urban areas is more polluted leading to respiratory diseases and damp in squalid living conditions can cause similarly dangerous breathing difficulties.
And, as the figures show, certain people are subject to discrimination. We must even up health and make it a right for all human beings.”
Girls ought to learn about #endometriosis at high school, or risk being classed as anything from anxious to fake – should they contract the condition.
That is the view of Siobhan, who experienced significant problems in 2019 having constantly had her endo described as stress and a normal part of growing up.
Now 32, the Rochdale based warrior also wants people to understand how drastic surgery will be, even if it’s just exploratory.
“It was the first hospital treatment I had ever had, and it showed up Stage Three Endometriosis with adhesions on my bladder” said Siobhan, “Because they used the word “ultrasound” I expected gel on my stomach and the type of scan they use for pregnancy. It took months to recover – and remember, this was just to diagnose the endometriosis.
There really had to be a better way of finding this than cutting people open.”
As a teen, Siobhan had known, “There was something not right. My periods were never regular, and I had what we call, “spotting.”
In the end she had to resort to private treatment after having her symptoms written off as everything from anaemia to skin problems and depression.
Siobhan admits: “To be fair, I was one of the ignorant when I was younger in that I didn’t know about endo. Even amongst my female friends we never spoke about menstruation.”
Now she believes that the subject should be taught at school and that all genders should be included in the discussion. “It shouldn’t be like it was when I was younger and people were embarrassed” she concluded, “just because it’s not always visible to others, those with endo are suffering with a REAL condition.”
When a Rochdale teaching assistant learned an endometriosis event was being staged at her local bowling club, she cried – because she “never believed something like that would come to Norden.”
Claire Warburton (44, pictured) had endured severe abdominal pain, seizures and even a mini stroke because medics struggled to diagnose the condition, which blights the lives of one in ten women of childbearing age.
She also admits to “dark thoughts” and has even had the breast cancer she fought, attributed to medication she took.
And speaking to us, self-confessed “fighter” Claire revealed that until she reached her 40’s, she had never even heard of the condition that had so disrupted her life.
“We are so humbled that Claire has come forward to share her experiences of endometriosis” said Endometriosis Awareness North founder, Dr Anita Sharma, “whilst the long wait for diagnosis, the depression she suffered and the way she was so often disbelieved were familiar, her stroke complications and the fact that she has had treatment in her 40’s was fairly new to us.”
Claire recently had serious surgery to remove the adhesions to organs that are typical of endometriosis. Her symptoms actually began in her teens and at one stage her menstrual bleeding was so severe she used 29 tampons per day. After a final misdiagnosis that her condition was the early stages of the menopause, her treatment came courtesy of one of our other founding members Gaity Ahmad, a Consultant Gynaecologist and Obstetrician with a special interest in pelvic pain and endometriosis.
“All of my life I have heard it just described as a bad period and a normal part of life, but it was my GP Dr Dench and then Ms Ahmad who listened to me,” said Claire. “I was even told that once I had my daughter Katie at 21, my symptoms would get better – and that was a lie! Thank goodness I have had the support of my headteacher and a few others. They have made the difference.”
Held in the presence of Rochdale’s Mayor Councillor Mike Holly, the event gave so-called “Endo Warriors” and their families the opportunity to discuss somehow living through a condition which one described as: “Like cancer. It eats away at your body but because you cannot die of it, nobody wants to know.”
Claire’s mum Yvonne concluded: “Endometriosis has stopped her from doing so much, social events, and just everyday things. It also changed her as a person. This is a real condition and people like Claire should not be ignored and simply told, “we know you are poorly, get on with it.”
One of the first questions patients with suspected endo in Oslo would be asked is, “has it been in your family?”
So says would-be qualities reporter Dorthe Berger who gave us her exclusive view on what treatment is like in Norway – and revealed how having an aunt and cousin with the condition worried her greatly whilst in her teens.
“I began my periods early and did have stomach cramps and heavy bleeds and my cousin told me about her endometriosis” revealed the 22-year-old, “she had experienced pain so bad, that she would come home from high school and have to lie on the floor in the hall.”
Now far more reassured about her own health, Dorthe wants to spread awareness about the condition and indeed any societal issue, “that goes under the radar.”
“I must admit had it not been for my cousin, I probably wouldn’t know what endometriosis was” she admitted, stating that she supported our charity’s efforts to educate about the condition at high school.
The Manchester Metropolitan University news gatherer hopes she can help our charity during her time in the Northwest – having not even visited before she applied for her degree. “I had just heard about the city and wanted to be where all the news was” she added.
Dorthe quizzed one of our founders Pete Gibson about Endometriosis Awareness North’s foundation and history. Former journalist Pete said: “Dorthe had fully researched her subject and asked some great questions. I think she will be a huge asset to any broadcast outlet and, whilst she is here, I hope she will also be an asset to us. Her knowledge and life experience were fascinating!” .
Click onto our brand new movie, detailing what Endometriosis Awareness North is all about Endometriosis Awareness North - YouTube
Featuring our treasured case study Courtney, it also gives medics a platform to call for quicker diagnosis of endometriosis.
With thanks to filmmakers Andrea Bertozzi and Pete Gibson Media.