Endometriosis 'diagnosed too late'
Up to 2,000 women in Northern Ireland are suffering unnecessarily because of problems with treatment for a debilitating disease which can cause infertility, campaigners claimed.
Endometriosis is a non-cancerous growth of abnormal tissue similar to the lining of the womb in the ovaries and pelvis area. It can spread to other parts of the body, producing immense pain.
Patients are calling for quicker diagnoses through better education of doctors about the condition and changes to how medical services are delivered.
Nuala Campbell, 31, from Belfast had her uterus removed after years of suffering.
"Beforehand I was just trying to survive and get through the next hour," she said. "It was not life, it was just survival."
The married make up artist was on a cocktail of pain killers so strong that doctors could not risk any extra medication and after multiple operations further surgery was ruled out.
The condition developed when she was aged 15.
"Around the time of the month I was hospitalised every single month, it was an unbearable amount of pain, absolutely excruciating," she recalled.
"As the disease progressed, for the past seven years, that has been an everyday occurrence, to have to live with that meant every day was absolute hell."
She was on so many pain killers she felt numb and went through courses of IVF in an effort to conceive.
"I always seemed to be trying to catch up with the disease, it was very frustrating and unmanageable and extremely painful," she added.
One in 10 women of child bearing age in Northern Ireland have endometriosis and one in 10 of those will have the moderate to severe form. The non-malignant growth can spread to the bowel, bladder, diaphragm or other parts of the body.
Treatment plans involving gynaecologists, surgeons and urologists, as well as specialists in pain medicine, clinical psychology, specialist nurses and others are needed to deliver optimal care, reduce distress and give them the best possible chance of bearing children, patients added.
Campaigner Dr Pamela Bell said: "Our key consideration is speeding up the time it takes to achieve a diagnosis, as there is a serious problem with misdiagnosis leading to delays in treatment.
"The often tragic outcome of that delay is the fact that many women are unable to have children by the time diagnosis is made and treatment provided."
She is part of the Pain Alliance of Northern Ireland, which is lobbying for the establishment of an integrated clinic to provide a good regional service.
Maeve Hully, chief executive of the Patient and Client Council, said the organisation worked closely with the endometriosis support group in Northern Ireland to raise the issues of timely diagnosis and appropriate treatment and support for the many women who suffer with it.
"We would like to acknowledge the courage and commitment of the many women who have given of their time to tell of their very personal experiences. We are delighted that progress is now being made," she added.
A spokesman for the Department of Health, Social Services and Public Safety (DHSSPS) recognised that a diagnosis of endometriosis can have a detrimental effect on the health and wellbeing of women.
"Endometriosis services are mainly provided in a primary care setting as the condition can often be managed by the prescription of painkillers; however, where more specialist input is required, GPs will refer the patient to the gynaecology service, where they can expect to be managed and treated on an individual basis according to the specialist's clinical judgement," he said.
The Belfast Health and Social Care Trust is developing a business case for a dedicated endometriosis service for a specific group of patients. Once this is finalised, it will be a matter for the Health and Social Care Board (HSCB), as commissioner of services, to consider the commissioning of the proposed service, subject to competing priorities for available resources.
The spokesman added: "The HSCB is satisfied that GPs are very aware of the possibility of endometriosis in females and there is a clinical pathway of treatment and referral that they follow. GPs attend regular education sessions through the year which covers the whole gamut of conditions that they encounter in practice. If deemed necessary, sessions on endometriosis could be included within this programme."