A mom nearly died after claiming doctors repeatedly dismissed her symptoms, saying she was just “getting fat”.
Sarah McInnes, 38, complained to her GP of ballooning by two dress sizes from a 12 to a 16 in just four weeks, in January of this year.
Initially, doctors had told her the unusual weight gain was because she was scoffing too much food, even though her diet hadn’t changed.
But she had in fact been living with an undiagnosed condition for 20 years that was fast becoming life-threatening.
Sarah, from Kilbirnie, Scotland, had suffered pain for years and said it felt like she was “carrying a rucksack full of rocks”.
In January, Sarah was sent for a pelvic scan after one doctor spoke up – telling other medics he disagreed with their theories.
It was then that a two-stone, 46 inch cyst was discovered taking up almost the entirety of Sarah’s abdomen, crushing her other organs.
Her belly was larger than many women at full term with a single baby, and bigger than she was at nine-months pregnant with her twin boys.
Sarah, a mum-of-three, said: “I’d heard their excuses so much that I started to believe them.
“It was always just ‘You’re fat, you’re obese, you need to eat less.
“It was driving me mad, I wasn’t eating very much and I’d been on so many diets trying to lose the extra weight, but it never shifted.”
Sarah underwent a grueling four-and-a-half hour surgery in March, in which she also had to have a hysterectomy and part of her stomach removed.
Before the op husband Allan, 44, had to sign a waiver agreeing that he understood there was a 50 percent chance that Sarah might not make it through the surgery.
During the operation, doctors discovered Sarah had been suffering with endometriosis.
Endometriosis is a condition where tissue similar to the lining of the womb can grow on other organs like the fallopian tubes, ovaries, and bowels.
It can be extremely painful, particularly during a period, make sex and going to the toilet excruciating, and cause fertility issues.
The condition typically gets worse, epsecially if left untreated.
Sarah said: “The doctor told me that in the 25-years he’s been doing that specific operation for endometriosis, he’s never seen it that bad.
“I’m just so glad to be here.”
Ignored ‘hundreds of times’
Sarah first started noticing endometriosis symptoms back in 2000, at the age of 16.
She would pass out from excruciating period cramps, vomit and have to take days off school due to the pain.
The mom described the pain from the condition as “the worst I’ve ever felt” – worse than labor pain.
But despite going to her GP to complain over two decades, all the signs of Sarah’s agonizing condition weren’t linked.
One in ten women of reproductive age in the UK suffer from endometriosis, but it takes an average of eight years to get a diagnosis.
Sarah said: “I’d imagine it took at least a couple of hundred visits to my GP, and at least six or seven visits to A&E to get diagnosed.
“They just said ‘sometimes girls have to deal with bad period pains,’ or that it’s ‘women’s troubles’.”
One called female doctor even asked Sarah if she believed she was the only woman in the world who experienced period pains.
But Sarah’s pain got so bad she couldn’t bear to leave her bed, eventually having to give up work in retail six years ago.
She stopped spending time and bonding with her three boys, twins Kyle and James, 19, and Mark, nine, resulting in bouts of depression.
It is believed Sarah’s cyst had been growing for five years, since 2017.
That year, Sarah broke out in a bright pink rash with painful, sore patches all over her legs, chest and face – a symptom of endometriosis.
She now faces a hideous wait to determine whether the ginormous ovarian cyst is cancerous.
Cysts are common in people with endometriosis, and most of the time they are not deadly.
But because Sarah’s was left undiagnosed for so long, and was allowed to grow so large, medics fear it could have dire consequences.
Sarah said: “Doctors told me that because it had been left for years and years, and because it had become stuck to all my organs, there’s a really high chance that it could be cancerous.
“All this time dealing with my illness and the pain has put a massive strain on us especially my husband, Allan, who has been amazing.”
Sadly removing the cyst and parts of the endometriosis has only mildly reduced Sarah’s symptoms.
Due to growths on her bowls not being able to be removed without risking serious issues, going to the toilet is hell and Sarah is still in lots of pain.
She said: “I was hoping once this was all over it would be done and dusted, but my pain level has only just gone down to about a five or six and I still struggle every day.
“The pain is constant and the back pain too.
“I wish I was normal, with a normal life where I can go to work, go on holiday and enjoy time with my children and friends but I can’t.
“And I won’t ever be able to do that, because all my symptoms were ignored for so long.”
Sarah’s husband had to take on the brunt of the childcare, as well as leaving his job as a warehouse assistant to take on the role of Sarah’s full-time carer.
Emma Tegala from Endometriosis UK said: “Shockingly, it takes on average eight years to get a diagnosis of endometriosis in the UK.
“Sadly, we regularly hear stories from those with the condition who are initially told that severe pelvic pain and painful periods are normal.”
Emma said a lack of awareness about endometriosis, its symptoms crossing over with other conditions, and taboo around discussing periods play into the condition being diagnosed so late.
Craig McArthur, Director of East Ayrshire Health and Social Care Partnership and Primary Care Lead for Ayrshire said: “NHS Ayrshire & Arran has a duty to protect patient confidentiality, therefore, we are unable to provide further comment.
“We take all patients’ feedback, comments, concerns, or complaints very seriously and we would encourage anyone who is unhappy with our services to contact us directly with any concerns they have.”
This story originally appeared on The Sun and was reproduced here with permission.