Endometriosis: Worcester university lecturer's 15-year fight

After more than 15 years of suffering, it took a cancer scare for Sheli Morgan to finally get to the bottom of crippling period pain, sickness, diarrhoea and migraines.

Packed off from doctor's surgeries with pills that never had an impact, Sheli's life was on hold every three weeks as she suffered behind closed doors with one of life's taboo subjects.

WHAT IS IT?

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes.

It can affect women of any age and with the NHS describing it as a "long-term condition that can have a significant impact on your life".

According to Endometriosis UK, a charity dedicated to supporting sufferers and raising awareness, a whopping 1.5million UK women – one in 10 – are currently living with the condition.

It is staggering, therefore, that the average diagnosis takes eight years to achieve, in part due to requiring a laparoscopy – where a thin surgical tube is sent through a small cut in your midriff to find patches of affected tissue.

For Sheli, a 35-year-old senior lecturer in sports coaching science in her home city, it was far longer and as part of Endometriosis Awareness Month she tells her story, one that began during childhood.

“I remember being at high school and having to take days off or go to the old matron’s room because the pain became to intense to sit in the classroom," she said.

“Even back then there was an embarrassment about what the real reason was. I remember my mum having to write notes to the teacher, it was a male teacher and she would play it down and say it was an upset stomach rather than recognising what it was.

“At 15 or 16 I was put on a contraceptive pill to try to make it more manageable but they just made my periods more sporadic, they would be all over the place and have no consistency.

“That started it all. I wouldn’t want to call it a battle but that is what it has felt like.

“Every three weeks I would have incredibly prolonged and heavy bleeding which caused fatigue. I would have excruciating stomach cramps, I could not put into words how painful they would be, I would be curled in a ball just wanting everything to stop.

“With that came sickness, diarrhoea, migraines, sleepless nights and not being able to eat for three or four days because my body could not keep anything in.

“I would look in your diary to see what I had coming up and the amount of times I have been in work having not slept because of all-night episodes is too many to remember.

“Everything together left me feeling exhausted all the time. I remember walking to work and an episode hit while I was there, I tried to walk home and physically couldn’t.

"My parents had to pick me up off the side of the road where I had landed in a heap."

YEARS OF MISDIAGNOSIS

Trips back and forth to her GP left Sheli with a wide range of ailments and medications, none of which fixed the problem.

"I was put on daily medication for migraines," she added.

"The explanation for the stomach problems was put down as IBS (irritable bowel syndrome), then they thought I had IBD (inflammatory bowel disease), then they said it was a wheat and gluten intolerance and I was put on tablets to manage that.

“They never connected the dots or looked at what was causing all of these symptoms, I was just given tablets to manage them and when I kept going back they just gave me even stronger medication which made no difference.

“You get comments like ‘it can’t be that bad’, medical professionals telling me I was just unlucky that my periods were that heavy and that I should take some paracetamol. I could have taken a whole pack and it would make no difference."

NOSEDIVE

The irony is that the truth finally got uncovered during the first wave of the Covid-19 pandemic when scans showed a worrying mass that medics feared could have been cancer.

“In September 2019 I went to the doctor and said I cannot do this anymore," said Sheli.

“I had spent so long trying to hide it from work and it got to the point where I couldn’t do that anymore. It was horrendous.

“They agreed to send me for an ultrasound scan to check whether there was anything else going on and that showed I had a mass growing off my fallopian tube.

“They had no idea how long it had been there because I had never been sent for a scan, it had always been ‘take this, try that’.

“That was in the October and they found something in the November but decided it was not of concern.

“I had a follow-up scan in February 2020 and it was all systems go from there.

“They thought it might have been a type of gynaecological cancer. It was at the start of the pandemic but I was sent for CT scans, MRI scans, blood tests and referred to a specialist.

“I had surgery on April 29 and thankfully, they found the mass was not cancerous. It was endometriosis and there was more in my bowel which explained the stomach problems, there was more in my womb as well.

“It took them finding a mass to get a diagnosis. From the February through to my operation I could not fault the specialist I was under but for me it should never been like that, I had been to see the doctor multiple times.”

FIXING THE PROBLEM

Understandably, it still rankles. So many family occasions, even holidays, missed, so many good times spoiled, so much fear, worry and pain.

But Sheli wants to use her experience and standing in higher education for good, so much so she has put her post-surgery battle scars out to the world via Twitter.

Asked why she thinks it takes so long to diagnose, Sheli replied: “I think it because the symptoms can mask themselves as so many other things.

“They were trying to treat lots of symptoms differently. On more than one occasion it was a case of ‘is it really that bad? Maybe you’re just unlucky, does it run in your family?’

“Endometriosis can only be diagnosed by the camera going in through your belly button. I appreciate that is quite invasive and costly, I don’t know if that is the reason."

"It needs to be taken seriously and the stigma has to be taken away. Sport is quite a male-dominated environment and I was probably guilty myself of not wanting to admit what was going on.

“Now I will quite openly talk about periods to anyone and part of the reason I put it out on social media is because I want my students to know.

“One in 10 suffers with it so I am sure I have students who are fighting silent battles. No one else can see it and when people see me running around a netball court or sports hall the impression is that I can’t be poorly, that it can’t be that bad.

“It is a horrendous statistic that 62 per cent of women aged 18-24 don’t even know what endometriosis is.

“Talking about the menstrual cycle just isn’t done and the reality is endometriosis isn’t normal, they are not just slightly painful or heavy periods, this is a chronic condition that more people need to know about and be aware of.

“My work has been phenomenal and I decided I did not need to be ashamed or hide this anymore. If speaking out can help one other person then it is worth me putting my stomach on Twitter!"

SHELI'S FUTURE

The condition comes with a lifetime of uncertainty over how long it will stay away and whether it will affect other areas of life, not least fertility.

“There is no cure. While I have had surgery to remove the mass and some of the lesions, they will come back," said Sheli.

“While infertility gets the most headlines, the reality is that it impacts on so much more than that.”

"I don’t know (if her fertility has been impacted), I have not been in that position yet. The worry is down to how long it went undetected and how much damage the mass has done.

"It is a huge worry but there has been a marked improvement. My migraines have stopped and the symptoms are far more manageable and have less of an impact.

“It makes it all the more frustrating that more was not done sooner but I am taking the silver lining that there has been an improvement since the surgery and I will hold on to that for as long as I can.”