Jorja Wylie’s 20-year health battle has led to the launch of the Chronic Room in Manchester for others facing chronic illness
Jorja has made it her mission to help others after years of misdiagnosis(Image: Jorja Wylie)
A woman from Droylsden has spent years in “excruciating” pain after being misdiagnosed for over 20 years, and has now opened a support group for others facing the same battle.
Jorja Wylie, 31, started having symptoms at the age of 11. She was told she had “growing pains” when mentioning her ongoing hip pain, but things became worse at 12-years-old when she had her first period.
She explained: “I always remember it as if it was like yesterday, because I had this harsh stabbing, horrible pain in my stomach and I remember asking the teacher if something was up with me, and she told me that I’m probably due to go on my period which by the end of the day I was.
“It was like gushing with blood. But with my periods, if it came on a Monday, by the end of the day, I’d come off. So then Tuesday, Wednesday, I’d have no period, but it’d be feeling like I’m being sat on a balloon. It’d feel like something was filling up really bad and something was stuck and it wouldn’t ever release. Then by Wednesday night, it had all released and then I’d have a heavy period for another 10 days and then it stopped.”
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Jorja spent years trying to find ways to help her period, and was first put on the contraceptive injection for a year before moving over to the implant. From there, she suffered with irregular periods, where at times she would bleed every day for two months straight.
At 19 years old, she joined the army but noted that her hip pain was getting worse to the point where she was in “agony” when exercising. “I used to be in really bad agony with my hips and then my lower back, and obviously my period pains.
“They never used to believe me. Not because I was on the heavy side, but because I didn’t look the part, and I wasn’t stick thin or looked like I was a fitness guru. They used to think, ‘oh, you’re just being lazy’. So, obviously that used to stick in my mind. But do you know when you sit there and you think, I know there’s something wrong, but I don’t know what it is?”
Jorja recovering after her surgery(Image: Jorja Wylie)
Jorja admitted that she “cried every night” after being in so much pain and not being able to do the fitness regime comfortably. They finally sent her for an MRI scan where Jorja was told she had hip bursitis. For years, she believed this was the issue but rejected steroid injections when offered them – and as it turns out, it was a misdiagnosis.
She eventually left the army and her position of Lance Corporal behind in 2020 as she didn’t “feel good enough” as she was unable to do the exercises and “kept gaining weight”. Jorja added: “I was on the side lines being called lazy and overweight when in actual fact I had underlying issues”.
After leaving the army, Jorja became a dog walker and dog groomer to still be active, but her pain continued. She admitted: “My periods were that bad that I kept taking a pregnancy test because they actually thought I was having miscarriages. I used to go to the toilet in excruciating pain. I couldn’t wee and I couldn’t empty my bowels without it really, really hurting.”
It took years of no answers until in December 2024 a doctor at Manchester Royal Infirmary told Jorja that she needed to undergo surgery to see if she had endometriosis – a term that was never mentioned until then. In March 2025 Jorja had the surgery where she was later informed that she had stage 4 endometriosis. The doctor told her he was “shocked of the outcome”.
Jorja added: “He said he couldn’t believe how bad it was and left for so long, it was one of the worst he had seen in 25 years of the job.” She explained how one of the probes couldn’t get inside her body as her bowel was stuck on top of her vagina, so he had to cut some of it away to reach it.
Her excruciating hip pain was due to ovaries on stuck on her pelvic wall as well. It wasn’t the end for Jorja, as she detailed how her “whole body changed” from that moment on.
Jorja waited weeks before chasing up an appointment that was “never booked”. With the help of PALs (Patient and Liaison Service), she was finally seen again in July and was told she needed to be put into early menopause which left her feeling “poorly constantly”. In the wait time after her first surgery, Jorja was struggling to get work and had to rely on Universal Credit. She added: “The illness had me in bed for days, using a shower chair on flare up days and also using a walking stick”.
The Chronic Room in Manchester is a safe space for people to find their voice(Image: Jorja Wylie)
After chasing she finally had her second surgery in November 2025, where her medical notes said that her lower back was “obliterated with endometriosis and scar tissue”. Jorja’s left ovary had to be reconstructed which reduced her egg count to the point where she may not be able to have children.
Noting the high cost of freezing her eggs, she admitted that she’d rather “not have any” at this stage. At the time of writing, Jorja is still waiting for a camera and dye test for her bladder, and added that her bowel is bleeding again.
She said: “I’m still struggling to sleep at night. I sleep with a pregnancy pillow every night. I can’t lie on my sides. Some days I still wake up in a struggle, I can’t even get out of bed. It takes me about an hour to get out of bed. Some days I can get up and I can walk, but by the end of the day I’m knackered and I’m dead sore and I’m seized up. My belly swells 24/7. It’s just constant.
“When they said ‘oh you’ve got a stage four it’s really really bad’ but there was no rush. It was just like a ‘oh yeah we forgot sorry, oh we’ve not done this sorry, oh we’ve not done that sorry’, but you just told me it’s the worst you’ve seen but there’s no urgency.”
Now, to support others struggling with chronic illness, Jorja and her friend Jess have started the Chronic Room in Manchester. They both have endometriosis, and Jorja explained: “It’s just so mad because for me to never hear that word endometriosis until 2024, since I opened this group, there’s so many people, even half my clients that I have for dog grooming have got it!
“I can’t believe how many people have got it but never heard of it before. We started it last month and we’re actually organising an endometriosis march at the end of the month on March 28 so we’ve got all women and everyone to come together and we’re going to march from one pub to the next pub in Droylsden.”
Jorja has urged others to “push” to be heard if they know something isn’t right, and concluded: “It’s not even just for endometriosis. We’ve opened the doors for any chronic illnesses, to anyone that’s got MS, fibromyalgia, anything like that. So it’s just a safe place for people to talk. I just want them to know that if you feel like something isn’t right, just please have a voice.”