Raise the Volume – CORE’s first charity concert

Chronic pain in women has become the focus of urgent mandates in several top scientific journals but it has yet to really hit the public consciousness. Conditions such as headache, IBS and back pain affect women three times as much as men, and yet little medical research is directed towards this. Even more alarmingly, functional brain scan studies have shown that regular intermittent conditions such as menstrual pain can have a cumulative effect on the nervous system leading to more instances of severe chronic pain later in life.

The reason chronic pain disproportionately affects women is still unknown. Genetic, hormonal, psychological and social rationales have all been proposed. It is likely that they all contribute, with the hormone oestrogen potentially amplifying the pain response.

Danny Orchard and Duncan Webster, co-founders of CORE, are working hard to raise awareness of this disparity and help encourage young people to speak openly about their pain.

“If society as a whole was more aware of the suffering that chronic pain inflicts on people I think the public would have far more empathy,” says Duncan. “There is an invisibility about this kind of pain as no-one can really see how the person is suffering, unlike say, having a plaster-cast for a broken leg. So after people express sympathy once or twice they get bored and start resenting the sufferer for not functioning normally. This unfortunately often leads to people suffering in silence, which can worsen both their condition and people’s perceptions of it”.

This is especially true in the case of gynecological problems, such as dysmenorrhea (period pain) and endometriosis, where sufferers are often reluctant to seek help or explain their situation to others out of embarrassment or fear of dismissal. Yet, primary dysmenorrhea is exceedingly common: as many as 90% of adolescent girls and more than 50% of menstruating women worldwide report suffering from it. Heather Watson, the British No.2 women’s tennis player was praised last year for coming forward about the negative effect a player’s menstrual cycle can have on their game, revealing that she often experienced dizziness, nausea and low energy levels severe enough to need medical attention.

Chronic Pelvic Pain is another serious problem that affects a surprising amount of women, which is all too often overlooked or misunderstood, and can impact every area of a woman’s life.  Katie Harris, a former CPP sufferer, says “It was very difficult to live with this condition, not only the constant pain but the depression and isolation of being unable to sit, meant that I was unable to socialise or interact with others and became very isolated. This was combined with a massive lack of understanding in almost every practitioner I had contact with, making me very angry and bitter.”

Dr Ruth Jones, a pelvic pain specialist who successfully treated Ms Harris, says that unfortunately cases such as hers are all too common.  “Many patients are really depressed when they first come. Some of the typical problems are about sexual intimacy, frequent urination, and inability to sit, so some have to give up work; even wearing tight clothes such as jeans is too painful as the pressure on their skin is sufficient to give them significant pain. Sometimes they’ve even had surgery to remove their uterus (hysterectomy) because the doctors think that’s the cause of their pain with no effect or even increasing symptoms post surgery. Many women are unable to be intimate with their partners because sex is painful & sometimes they have suffered silently for years, not even telling their closest friends.”  With time and appropriate treatment however, there is hope for sufferers of CPP, as Ms Harris can testify, “Since treatment I am so much better, I can sit and lie down. I can sleep again and can interact with people.”

 

Ruth Jones, speaking at the Raise The Volume event

CORE’s aim is to give a voice to sufferers, and offer hope for a pain-free future.

“Too many women are told from a young age that they just need to ‘get on with it’, that having severe period pain or migraine is ‘just how it is’ and end up seeing themselves as weak as a result,” says Danny, “so by trying to raise awareness of this and encouraging people to speak openly about their pain from a young age, it’s hoped that we can avoid the downward spiral of chronic pain that  can often lead to disability, depression and isolation in later life.”

With this in mind, CORE recently organised a concert dedicated to highlighting the issue and reducing the stigma attached to female pain. “Raise the Volume” at the Round Chapel Clapton, on 28th July 2016, featured an all-female line up of critically-acclaimed musicians and speakers, and announced the launch of their crowdfunder campaign to raise £20,000, which will go towards funding CORE’s much needed research into pain management treatments and efficacy, and their aim to deliver low-cost care for those who are unable to afford such treatments currently.

Lisa Hannigan singing at the Raise The Volume event

It’s hoped that this research will allow better access to treatment, and help more women like Ms Harris: “Treatment has allowed me to take my place in the world again and I am so grateful for the simple things that are so easy to take for granted.”

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