Fenstanton woman sets up endometriosis charity
TWO million women in the UK suffer from endometriosis, a chronic and often debilitating condition, in which cells mimicking the lining of the womb grow in other parts of the body. Doctors are baffled as to the cause of the illness and there is no known cure. Jo Gifford, from Fenstanton, is on a one-woman mission to beat it. CATHERINE BELL, a fellow sufferer, spoke to Jo about her plans to help others.
AFTER 15 years of pain and five invasive operations, Jo Gifford wants to beat endometriosis once for all. Unfortunately, the nature of the condition means this is unlikely and Jo, a busy mum of twin girls, faces a life of pain management and coping strategies.
Jo, 34, said: “I was diagnosed at 26 but had been suffering for seven or eight years.
“Endometriosis has massively affected my life and my work. I have had five laparoscopies and have tried all sorts of things, including acupuncture, massage, reflexology and aromatherapy, all of which helped to a certain extent but funds to keep up with those treatments soon run out.”
Because symptoms of endometriosis mimic many other conditions, such as irritable bowel syndrome, it often takes a long time for sufferers to be correctly diagnosed. The average length of time for a diagnosis is eight years and the only definitive method of achieving that diagnosis is to undergo a laparoscopy – a keyhole procedure in which a camera is inserted into the abdomen via a small cut.
Jo explained: “When I was 19, I remember saying that I felt like I was ‘running on half batteries’ and I had a constant dull ache. Over the years, they tested me for everything: thyroid problems, glandular problems, gallstones. I was told ‘It’s one of those things. We can’t do anything. It will go away.’
“It did subside for a while but then it came back really badly. The pain was so massive and I was really unwell and then they said it could be endometriosis – and they found it.”
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Jo is lucky that she now has the support of her understanding partner and family but said: “I am still in pain but it’s not as bad. If it gets really bad, I know that I have to let my body rest.”
As well as dabbling with special diets, complimentary medicine and mainstream painkillers, Jo has found writing her blog, Dexterous Diva, a cathartic way to cope with her condition.
She said: “My blog is very personal, I tend to over-share, but I go with the flow and talk about endo. It really helps me; it’s how I deal with it. It has a strong readership with people looking for someone who understands what they are going through. Even friends of mine who have read it are surprised – they don’t realise what I am going through. Family members don’t realise. I often wonder ‘Is it something in my head? Am I just imagining it? Can I just push through it?’ but then some days the pain is so bad I can’t walk.
“I had a nervous breakdown a long time ago when I was with someone unsupportive, who didn’t understand what I was going through. It is important to talk to someone who knows what it is like.”
Since being diagnosed, Jo has done lots of fundraising for Endometriosis UK and is currently training for a sponsored 10k run. However, instead of donating funds to the national charity, Jo is in the process of setting up her own charitable trust, Project Endo, which will enable her to fund workshops and help for fellow sufferers.
She explained: “Project Endo was a hash tag I used on my blog. I realised what I was writing was helping people and I wanted to look at other ways that I could help.
“Project Endo will hopefully provide funds for people to run workshops, NLP, confidence coaching and courses on diet and nutrition – all things that I have tried and had some success with on my journey with endometriosis but others might not have access to.”
As well as practical support for sufferers, Jo, who is director of a design and editorial agency, wants to raise awareness of the condition.
She said: “Before I was diagnosed I had never even heard of it.
“Now, I have to have a ‘Plan B’ in place for my bad days, when I am in so much pain that I can’t walk. If I can’t make it to an event, I am always completely honest about why and explain my condition and try to raise awareness that way.
“Endometriosis is horrible and my main aim is to make help available to as many women as possible.”
INFORMATION: Read Jo’s blog at www.jogifford.wordpress.com. For more information about endometriosis, visit www.endometriosis-uk.org.
What is endometriosis?
Endometriosis (pronounced en-doh-mee-tree-oh-sis) is the name given to the condition where cells like the ones in the lining of the womb are found elsewhere in the body. Every month, a woman’s body releases hormones that cause the lining of the womb to thicken in preparation for a fertilised egg. If pregnancy does not occur, this lining breaks down and bleeds and the woman has a period. In endometriosis, cells react in the same way except that they are located outside of the womb. During the sufferer’s monthly cycle, hormones stimulate the endometriosis, causing it to grow, then break down and bleed. However, unlike a period, this internal bleeding has no way of leaving the body, which causes inflammation, pain, and the formation of scar tissue (adhesions). The adhesions can cover internal organs and is most commonly found inside the pelvis, around the ovaries, the fallopian tubes, on the outside of the womb or the ligaments that hold the womb in place. It is also found on the bowel, the bladder and the intestines. It can grow in existing scars from previous operations and in rare cases it has been found in other parts of the body, such as the skin, the eyes, the spine, the lungs and the brain.
What are the effects?
Endometriosis can impact on a woman’s life in a number of ways, causing:
Fatigue/lack of energy
Problems with a couple’s sex life/relationships
An inability to conceive
Difficulty in fulfilling work and social commitments.