A Nottinghamshire woman is raising funds for an illness which affects 10 percent of women worldwide, but takes an average of seven and a half years to be diagnosed. Jenni Johnson, 36 and from Mansfield, is hosting a fundraiser on Saturday (November 25) which will consist of a raffle at Coco café in Mansfield “as a thank you” for Endometriosis UK, a charity that “helped me a lot when I was diagnosed”.
Prizes up for grabs consist of a pony pampering and pygmy goat walk for four people, a voucher for a helicopter ride and, for Manchester United fans, a signed photo from an as-of-yet unrevealed player. “I wanted to also give something back to them. It’s only a small charity so it does solely rely on outside donations, we don’t get any support or any regular donations that often. Endometriosis UK really does rely on people being generous and donating money.
Jenni was diagnosed back in 2013, but didn’t receive necessary surgery until seven years later. She had known that something was not quite right as she was struggling with her periods twenty years ago. “From 14 I was really struggling; I’d be missing school and I’d be at the doctors all the time as I’d be stuck in the bathroom for 48 hours. I lost mobility in my right leg and I’d be missing days and days of school every month.”
After Jenni went for a scan for suspected IBS, the diagnosis then came. Endometriosis is when tissue much like that which lines the womb attaches to other organs in the body, such as the fallopian tubes or the ovaries.
For Jenni, this resulted in surgery, which discovered that the tissue had attached itself to nerves and several organs, which resulted in a lack of mobility in her right leg. “It really impacts you”, she added. “It’s a daily thing, especially with the variety of issues like migraines, bloating, problems with mobility – it can really get you down.
“When we bloat up we look six months pregnant, then people might come up to you and say ‘oh when are you due’ and it’s like er, no I have endometriosis.”
When Jenni was told of Endometriosis UK, she had never heard of it. After a quick internet search turned up a helpline number she phoned and would speak to them.
“I’d say ‘look, I’m lost, I don’t know anyone who has this and I’d never heard of the illness before’ and whilst they can’t give medical advice, it was someone to talk to. I used to phone a lot.
“Having them explain it more to me was so helpful, and it would get me out of a spiral when I felt really low.”
The fundraiser will be held at Coco, 123 Nottingham Road in Mansfield starting at 11.30am and finishing at 2.30pm. Those that attend can “expect a relaxed atmosphere, a cuppa and some cake and some amazing prizes at the raffle”, said Jenni, who along with Anna Johnson has organised the event.
“I’ll do a little speech but don’t expect any really serious stuff, we’re going to have a laugh and a joke. Like I said, one of the top priorities is having fun, some councillors will be joining too so I’m hoping it will be a great fundraiser – it’s the first I’ve ever done.” The JustGiving page for the event can be found here.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
