A Nottinghamshire woman with endometriosis who has been "forever going back to the doctors" since the age of 14 is now wanting to help others suffering from the condition. Jenni Johnson said she has been "fobbed off" by professionals throughout the years - but will not let the disease stop her.
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. Endometriosis, which is not curable, can affect women of any age, including teenagers.
Jenni, 35, is the support group leader for the Endometriosis UK charity in Nottinghamshire. The Mansfield resident spoke about why the group is important.
Are you planning an event for King Charles III’s Coronation? Let us know here
Jenni, who does not have mobility in her right leg because of the condition, said: "People can watch you go through pain. But they don't physically understand what you're going through on a day-to-day basis, bottling it up because you feel trapped and you've got no-one really to talk to or understand.
"Sometimes when you go somewhere medical, you can get fobbed off - so I think it's easier when you've got that support network and people to talk to, or vent to. People might have options on what you can do like 'have you tried changing your diet' or 'have you tried this certain exercise' - people can tell others 'this has worked for me' and then it's up to you on whether you want to use it or not.”
Jenni was diagnosed with endometriosis ten years ago. She knew from a young age she didn't have a "normal" period as they were unbearably painful.
She said: "I got diagnosed in 2013 - it was found on a scan but I didn't have my surgery until 2020. I had been really messed around and I'm now disabled because of it.
"Before my surgery, I was told that I needed to be opened up - when I was, it was found that the endometriosis had attached to some of my organs and my nerves which is why I have no mobility in my right leg. I have to have surgery every now and again when the pain gets too bad.
"Since I was 14, I was forever going back to the doctor." Due to her loss of mobility, Jenni had to leave care work.
After surgery in 2020, Jenni bled too much which resulted in her having a hysterectomy too. She added: "Endometriosis has become more spoken about and more well-known - gynaecologists and GPs are a bit more clued up on it now and there's more research.
"Twenty years ago when I first started struggling with my periods, it was there but there wasn't a lot of diagnosis around it. If I started struggling with it now, I think things would be dealt with quicker.
"Endometriosis can affect your mental health - it can feel like you've got no-one to physically talk to especially when you're not getting any answers. I think it's more easy to speak with people who know what you're fully going through.
"A lot of people think it's just period-related - it's not, it's more than that. I have to live with this, I have to deal with this, I can't let it stop me."
Jenni said: "I want people to know that there is support, there is a group in Nottinghamshire that can help possibly point you in the right direction to services. I want to learn from others, too, and what they've experienced and what has helped them."
To become a part of the Endometriosis UK support group in Nottinghamshire, click here. Claire Kelleher, head of support and information at Endometriosis UK, said: "Endometriosis impacts one in ten women and those assigned female at birth in the UK. That is 1.5 million people, but despite this, it currently takes eight years to get a diagnosis of endometriosis; a statistic that hasn't decreased in a decade.
"Endometriosis UK understands that living with endometriosis can have a profound impact on both physical and mental well-being. We also know that endometriosis can have a huge effect on partners, family members and personal relationships, and all those affected may need support. This is evident from the number of partners and family members who contact the charity.
"Our Endometriosis UK support network exists to offer all those affected by endometriosis the support and information they need to understand the condition and take control. Anyone affected by endometriosis can call our helpline, join a local support group, contact our web chat or join our online community. To find out more, please visit the Endometriosis UK website at www.endometriosis-uk.org."
READ NEXT:
- Survivor of Nottinghamshire's most notorious children's care home abuser Dean Gathercole tells her story
- Nottingham tattoo studio announces closure after seven years in city
- Popular Nottingham restaurant awarded prestigious Michelin honour
- 'That'll pay for 333,333 dinners' - reaction to Lee Anderson's £100k GB news salary
Mother's Day plans 'ruined' as Nottinghamshire mum refused hot water for baby at pub
