Endometriosis: 21-year-old 'begging for help' from health system

Living with seizures and crippling pain, Zara Corbett says she's "begging for help" as she copes with endometriosis.

The 21-year-old told BBC News NI that if she had any other condition she would be receiving help.

"With gynae problems, particularly endometriosis, you are left waiting for years."

"Women should not be left suffering this pain, it's not good enough," the beautician said.

Zara has been put into early menopause - which is one potential treatment for endometriosis.

The County Down woman said Northern Ireland needed a dedicated centre to provide specialist support.

"I am begging for help from medical professionals including support from a multi-agency network because we are at our wits end - life cannot go on like this," she said.

'Societal ick'

Endometriosis UK, an organisation that helps women with the condition, said it was shocked and saddened that it does not see "good, prompt care" in Northern Ireland.

Its chief executive, Emma Cox, who visited Belfast in May, said services in Northern Ireland were "lagging behind" the rest of the UK.

"We hear of the very long waiting lists to access gynaecologists to get a diagnosis but also waiting lists to access surgeons, it's about the disease being taken seriously," Ms Cox said.

The organisation said it was unable to get a clear picture of the number of women in Northern Ireland who are waiting to see a consultant and for surgery.

Speaking on Good Morning Ulster Ms Cox said there is a societal "ick" when it comes to treating gynaecological issues,

"There's just a societal overhang that we don't really talk about gynaecological issues, they sort-of get a little bit overlooked and a little bit de-prioritised.

"We have to get over our squeamishness and when it's something to do with periods or the womb we still have to treat it based on the impact it can have on the individual not based on historic interests or not in a condition," she added.

'Sharp, twisting stabs of glass'

Zara, who has suffered extremely painful periods since she was 14, was diagnosed with endometriosis at 21.

She has to use a walking stick for support and when she is outside she often must use a wheelchair.

She said the pain was like sharp, twisting stabs of glass especially around her bladder and deep into her pelvis.

In February, after her gallbladder was removed, Zara's surgeon said he had found endometriosis around her bladder, bowel, and lower back.

She said the diagnosis, while shocking, was emotional but that it was reassuring that she had been right and at last was being taken seriously.

"I had to beg for a laparoscopy [a procedure to check the organs in the abdomen] - but went private after being told it would be a seven year wait," she said.

But it is the seizures that are causing her the most concern.

"I go dizzy, blank out, and my mum says I go into full shaking and then stiff which will last about three or four minutes, but I don't fully come out for about 20 minutes." she said.

Zara is taking morphine daily for the pain, which she said left her feeling "spaced out and sleepy".

A consultant said the seizures were due to her body not being able to cope with the severity of pain.

Zara's mother has backed her daughter's call for a dedicated endometriosis centre

Her mother, Amanda, said she had lost track of how many times she had been to the emergency department with Zara this year to try to get pain relief.

After another seizure, Zara spent last weekend in hospital.

Her GP had advised her to go straight to her local emergency department.

She said the lack of specialist contact meant she had to re-tell her health story time and time again, which was exhausting.

Amanda said: "My daughter is 21, but she can't work, she can't leave the house, she has no quality of life, and her mental health is deteriorating.

"As her mum, it's horrendous. I feel useless, I feel like I can't help her. This is not what I ever expected for my daughter.

"She wants to be out there living her own life."

What is endometriosis?

• It's where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes

• It can affect women of any age, including teenagers

• Symptoms can include pain in your lower tummy or back, period pain that stops you doing your normal activities, and pain during or after sex

• Some women experience no symptoms but for many others the pain can be debilitating, and the condition can lead to infertility

Source: NHS

Ms Cox said the disease was not being taken seriously and it was "shocking" that less theatre time was being made available in hospitals for this type of gynaecological issue.

BBC News NI asked the five health trusts to supply figures for the number of women who were being treated for severe endometriosis and on waiting lists.

It is understood that surgical lists for severe endometriosis are often postponed for patients who require surgery for cancer.

Sources have told BBC News NI that while surgery was already limited for endometriosis patients, those cases were not seen as a priority and were among the first to be postponed, which exacerbated waiting times.

Getting It Right First Team (GIRFT), a clinically-led NHS improvement programme which looks at best practice, examined local gynaecology services in May.

Medical staff said they were are keen to know what the GIRFT found and its recommendations.

In a statement to BBC News NI, the Department of Health said a final report from GIRFT was expected in December.