IMAGINE bleeding heavily, in total agony, and being told it's just hormones, it can't be that painful.

This is what Shae Eccles, 43, from Dunstable was faced with when she went into hospital on New Year's Day 2019.

She was first diagnosed with endometriosis – where tissue from the womb lining grows outside of the womb – in 2003.

Despite living with the debilitating condition for 19 years, when the creative consultant ended up in A&E, she was dismissed as having hormonal issues and a low pain threshold. 

“I know what endometriosis feels like, but this felt completely different," says Shae. 

“I knew something was seriously wrong internally but after spending several hours in A&E and having a scan.

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"I was told they couldn’t see anything and could I come back the next day when the gynaecology department was open.

“The next day I was still in so much pain, but I still felt like no one was taking it seriously. 

“Everything felt tight inside and moving hurt. I felt like I was hunched over.” 

The specialist she eventually saw “inferred it was a hormonal endometriosis flare up and that I just had a low pain threshold."

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Shae said: “I was so upset and angry but felt I had to be careful and phrase my fight in a certain way or I’d confirm what they thought was a hormone issue by getting upset.”

Shae was put on pain relief and got an MRI appointment which showed she “had a series of issues – none of which were hormonal. 

“I had fibroids all over my womb, my bowel and womb had fused together.

"I had loads of scar tissue because of the endometriosis and the ligaments in my uterus had thickened too, which was why everything felt tight in the area. 

“I was told I’d need surgery and was given a date for June 18, 2020. 

“It was at the height of the pandemic and my birthday is June 15 so I had to spend it alone, isolating, so I could have the surgery. 

“I was in hospital for eight days and recovered at home for around four months before I got some semblance of a normal life back.

“It was after the surgery I was told I’d had an open myomectomy where I’d been surgically opened from my belly button to my groin. 

“They’d tried to remove fibroids but that’s when they’d realised my womb was fused to my bowel to such an extent they couldn’t get behind it to get the fibroids. 

'NO END IN SIGHT'

“I’m supposed to have more surgery but it’s a question of balancing the need for surgery with the result that I’ll end up with even more scar tissue, which could cause further issues.

“None of the surgery I’ve needed is because of hormone issues, yet, because it’s involved my uterus and womb, that’s what’s been presumed. 

Shae is still bleeding non stop and heavily and has continued to have clots since October 2021.

At one point doctors thought she might need a blood transfusion.

She’s had an urgent referral but has been told nothing is available in terms of an appointment until August 2023.

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She said: "I'm in a lot of pain and things are getting worse with no end in sight."

She added: “Even if my condition was hormone related, there’s a tendency to not take hormones seriously for a lot of specialists, whereas if I came in with a broken leg, everyone would take it seriously.”

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