A FERMANAGH woman in her early twenties has detailed her experience of seeking an endometriosis diagnosis and the struggle she faced on waiting lists.

The young woman, who did not wish to be named as she feared that it would have a negative impact on her further seeking treatment, told this newspaper about her struggles with endometriosis (see panel).

The woman has had “unbearable” menstrual cramps since she was 12 years old. She could not go to school some days and estimates that her attendance was at 60% whilst in her final few years at school.

She revealed how her menstrual problems interfered with her learning: “I had a period for 11 weeks while I was doing my GCSES and had periods that lasted several weeks when I was doing my ASs and A-Levels.”

Problems began when she initially visited her doctor and her GP was apprehensive to refer her to a consultant, as endometriosis is predominantly found in women aged in their thirties and forties who have had children.

The woman waited until she was 17, having been referred to the Gynae department at South West Acute Hospital two years prior to see a consultant in the Western Trust to establish whether she had the condition.

She underwent keyhole surgery three times. The first time was unsuccessful as, due to hormone fluctuations, there was no endometrium in her reproductive system area.

The second time she was referred for a procedure, a member of staff allegedly told her that she “was not bad enough”.

The woman was placed under anaesthetic before the surgery was terminated in the middle of proceedings.

She alleges that she was told she needed to lose weight for the treatment to be effective, and that she was told she was wasting NHS time and resources.

She expressed confusion and said: “I don’t understand why they proceeded with the surgery if that was what they thought.”

The woman was due a three-month check-up afterwards with the trust but, due to waiting list backlogs, it took a year for her to be seen.

She eventually sought private healthcare with a female doctor so she could have a quicker referral to the trust to undergo her third and final keyhole surgery, which confirmed that she did have endometriosis.

The woman, who is self-employed, says she sometimes struggles with work and that week by week, “her hormones levels are all over the show”.

She revealed the hidden financial stress of the condition and the “huge drain on resources from buying tampons and sanitary products”.

There is currently no known cure for endometriosis, and it is advised to be treated with pain relief or contraception. This can be ineffective, as the woman explained: “I was hospitalised for the pain in Belfast whilst at university.”

She has encountered further troubles with contraceptives due to suffering from migraine headaches which can worsen as a side effect of the combined contraceptive pill.

The Western Trust did not reply to The Impartial Reporter in time to go to press. In response to queries raised around endometriosis, a spokesperson from the Department of Health said: “It is unacceptable that any patient has to wait longer than is clinically appropriate for treatment, and we fully understand the distress and anxiety that long waiting times cause, particularly when patients are suffering pain and discomfort.

“Reducing waiting times for elective access is a key priority for the health service in Northern Ireland.

“Whilst there is no stand-alone Departmental policy for gynaecology services, in October, 2017, the Department endorsed National Institute for Health and Care Excellence clinical guideline NG73 on the treatment and diagnosis of endometriosis.

“As well as covering diagnosing and managing endometriosis, it aims to raise awareness of the symptoms of the condition and to provide clear advice on what action to take when women with signs and symptoms first present in healthcare settings.

“It also provides advice on the range of treatments available.”

Faye Farthing, spokeswoman, Endometriosis UK said: “Endometriosis affects around 1.5 million women and those assigned female at birth in the UK, and the impact it can have on all aspects of a person’s life cannot be overstated.

“Waiting times for those in Northern Ireland awaiting treatment are very concerning.

“The only way to definitively diagnose endometriosis is via laparoscopic surgery, and women are waiting on average 7.5 years for a diagnosis.

“Without a diagnosis and treatment, not only can the disease progress, but people cannot put a name to their symptoms, [with this] impacting on their education, employment, relationships and mental health.”

Endometriosis UK run a free support and helpline; telephone 0808 808 2227. Times vary when support is available as the helpline is operated by volunteers.

What is endometriosis?

Endometriosis is a painful medical condition where tissue similar to the tissue that normally lines the inside of the uterus - the endometrium - grows outside the uterus.

It cannot be diagnosed via a scan, and can only be diagnosed via laparoscopy (keyhole surgery).

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