Isle of Man woman suffered 12 years of 'unbearable pain' before endometriosis finally diagnosed

Stephanie Ormesher tells ITV News Granada's Isle of Man reporter Joshua Stokes about her painful condition

An 23-year-old woman says she waited 12 years to get a diagnosis for endometriosis on the Isle of Man, where specialist care is not always available.

Stephanie Ormesher says she often wakes up in 'unbearable pain' preventing her from everyday activities due to the symptoms of endometriosis.

She said she went to the on-Island doctors from the age of 10 with symptoms, but was not diagnosed with the condition until 12 years later in 2020.

Stephanie was told that she had stage 4 endometriosis, which is the most severe.

She told ITV News Granada: "You don’t know what’s wrong with you or you feel like you’re being told it’s in your head.

"That’s what you feel like if nothing’s being investigated.”

Stephanie had her third operation in October 2021 after her symptoms continued to worsen over time. Credit: ITV Granada Reports

Due to the severity of her condition, Stephanie has had to travel off-Island to receive treatment adding further complexities to everyday life.

This is due to the lack of specialists in the Isle of Man to deal with more complex treatments.

In a statement a spokesperson for Manx Care said:

"Manx Care has the appropriate expertise on island to treat ladies with endometriosis both medically and surgically in cases of mild and moderate disease. 

In situations where endometriosis is more complex and extensive, Manx Care refers to the specialist tertiary endometriosis centres at Liverpool Women’s or St Mary’s Hospital in Manchester”.

Since the diagnosis, Stephanie has continued to receive treatment off-Island and says more needs to be done to raise awareness of the condition.

She said: “Patients need to feel like they’re being listened to, in order for patients to actually go.

Especially at the age of ten or teenage years, you need to feel like you’re being listened to in order to want to go in the first place.”

Ilyas Arshad is a consultant gynaecologist at Liverpool Women's Hospital who specialises in seeing people with endometriosis, including those from the Isle of Man.

  • Endometriosis specialist Ilyas Arshad:

What is endometriosis?

Endometriosis is a long-term condition that affects women of all ages, but does not currently have a cure.

The condition causes tissue, similar to the lining of the womb, to grow in other places including the ovaries and fallopian tubes.

Symptoms of the condition can vary from mild to severe, but the main effects include:

  • Pain in lower tummy of back.

  • Period pain that prevents everyday activities.

  • Pain during or after sex.

  • Pain when using the toilet during your period.

  • Feeling sick constipation, diarrhoea or blood in urine during period.

  • Difficulty getting pregnant.