Mother says NHS dismissed endometriosis symptoms as ‘bad period pains’ and delayed diagnosis caused avoidable suffering

A mother who says the NHS dismissed her symptoms as “just bad period pains” later discovered she had severe endometriosis, and believes the delay in her diagnosis and her “disgusting” treatment caused avoidable suffering.

Sonia Shannon, 35, an administrator from Sible Hedingham, Essex, began experiencing debilitating pain and heavy bleeding during her periods from the age of 13.

Throughout her teenage years, she repeatedly collapsed during her period – but said despite going “back and forth” to her GP and A&E, she did not receive any answers.

After giving birth to her daughter Skyla, now 16, in 2009, she visited A&E at Colchester Hospital “countless times” over the years with severe pain, but said she was always sent home with painkillers and told it was “just bad period pains”, without any further investigation.

In 2015, after collapsing daily for a week, Sonia said she was rushed to hospital, diagnosed with sepsis, a grapefruit-sized ovarian cyst and deep infiltrating endometriosis.

Endometriosis is a condition in which tissue similar to the womb lining grows elsewhere in the body, and deep infiltrating endometriosis is a severe form that grows deep into pelvic and abdominal structures, according to the NHS.

Sonia said she went on to have multiple surgeries to remove further endometriosis tissue, but it spread to her liver, lungs and kidneys, now leaving her bedbound, with brain fog and experiencing severe pain during sex with her husband Ashley, 41.

She said she has been on an NHS waiting list for a hysterectomy for five years and is now fundraising to have the surgery privately, which she estimates will cost more than £25,000.

Sonia told PA Real Life: “The pain is like being ripped from the inside out, tearing every single organ, just pulling me apart.

“Once you’ve had that bout of pain, I get the bruising feeling inside my whole inside that’s been beaten up – and this goes on for two or three days.

“If I hadn’t been ignored for so long, I think my endometriosis would have been picked up earlier and it could have been removed before it got to a really bad stage.”

Since starting her periods at the age of 13, Sonia experienced intense pain and heavy bleeding, collapsing at least once during every cycle.

Throughout her teenage years, her mother took her “back and forth” to both her GP and A&E, but said they had “no real answers or diagnosis”.

At the age of 19, on December 22 2009, she gave birth to her daughter, Skyla.

However, after giving birth, her pain returned and her periods became “extremely irregular”.

Over the next five years, Sonia said she attended A&E at Colchester Hospital “countless times”, but remembers being sent home on each occasion with only ibuprofen and paracetamol.

She said doctors also advised her to take a hot bath, as they insisted it was “just bad period pains”.

In 2015, she said her pain became even more “significant”, and during one week of her period she collapsed every day.

That week, she called an ambulance daily but they were not able to come, until the seventh day, when she was taken into Colchester Hospital, where blood tests revealed an infection.

She was rushed into surgery, where she said doctors discovered she had a ruptured cyst, the size of a grapefruit, on her right ovary, and her ovary had to be removed.

She said doctors told her the cyst had become infected and had “destroyed” her ovary, and doctors also found a large amount of endometriosis.

She was diagnosed with deep infiltrating endometriosis – which doctors said explained her previous symptoms – and sepsis.

During surgery, the surgeon was able to remove endometrial tissue by burning it away.

Sonia was then transferred to intensive care, where she remained for five hours and was given pain relief medication.

“Now I have the diagnosis, I feel angry – it’s quite infuriating that they dismiss you,” Sonia added.

Following her hospital stay, her endometriosis-related pain gradually returned, and she also began experiencing pain during sex, back pain, brain fog and nausea – which are all also symptoms of endometriosis.

She cried: “It’s been so hard – my husband is a very patient man, we haven’t had sex in months because of the pain and it puts a strain on your relationship.

“I feel guilty, it’s such a horrible feeling.”

In 2017 and 2019, Sonia underwent maintenance surgeries to remove further endometrial tissue.

In 2020, she had another surgery, to shrink fibroids, and was also diagnosed with adenomyosis, a condition where the lining of the womb grows into the muscle wall of the uterus.

That same year, she said she was placed on the waiting list for a hysterectomy – a surgical procedure to remove the womb – after doctors believed it could relieve her symptoms by stopping her periods.

She claims she had several meetings with a surgical team regarding the hysterectomy but was repeatedly left waiting for a date.

“Again, I went back and forth to not only the hospital – I was constantly having phone calls and emails with Pals (Patient Advice and Liaison Service) telling them what was happening,” Sonia explained.

“They would reply to me and say they spoke to the gynaecology team but they never got back to me.

“I was constantly trying to request consultation with my initial consultant, and I couldn’t get to see them and I got transferred to another consultant who never got back to me.”

On November 9 2024, she said she underwent another operation to remove endometriosis tissue.

During the procedure, surgeons discovered a cyst on her gall bladder, as well as endometriosis tissue on her liver, lungs and kidneys.

At the time, she said she was still waiting for further information regarding her hysterectomy – so she contacted the hospital’s CEO to complain about her treatment and the delay in her endometriosis diagnosis.

She said she received a response in a letter seen by the Press Association from the deputy chief medical officer, but has still not received a date for her surgery.

She claims she has continued to contact her doctor regarding the operation but has been unable to reach him.

She cried: “I think my entire experience has been disgusting.”

Sonia has since launched an online fundraiser to have a hysterectomy privately, which she estimates will cost upwards of £25,000.

“I work part-time at the moment so don’t have a big income so needed to set up a fundraiser,” Sonia added.

“I used to be an HGV driver, it was my dream job but I’ve had to give it up now – it just wasn’t safe for me when I’m in so much pain.”

Despite having further tissue removed, Sonia’s pain continues and now affects her daily life – she is currently bed bound and bloated to the point where she said she “looks pregnant”.

Sonia said her endometriosis-related cramps have also caused her to have a slipped disc in her back –  when a soft cushion of tissue between the bones in your spine bulges outwards – and said her muscles “are so weak”.

“No-one deserves to be in this amount of pain and endometriosis is an absolutely awful disease,” Sonia said.

“You’re trying to live your life, and you’re governed by these people saying, ‘I will give you a surgery now, or you have to wait this long’.

“Until then, your life is on hold.”

Chief nurse Catherine Morgan from, East Suffolk and North Essex NHS Foundation Trust, said: “Our priority is to ensure our patients receive their care as soon as possible.

“We are in direct contact with Sonia about her concerns and questions. We will continue to listen and support her in any way we can.

“We are working hard to facilitate extra clinics and theatres and reviewing how we treat patients with endometriosis and pelvic pain going forward.”

To donate to her fundraiser, visit: www.gofundme.com/f/10-year-diagnosed-endometriosis-and-adenomyosis-warrior.