Belfast woman felt 'crazy' waiting for endometriosis diagnosis

A Belfast woman who has just been diagnosed with endometriosis, says more needs to be done to support sufferers.

According to the Royal College of Nursing, approximately 1.5 million women and people with the condition assigned female at birth in the UK are estimated to have endometriosis, affecting about 1 in 10 of this demographic.

Endometriosis is a chronic condition where tissue similar to the lining of the womb grows outside the uterus, most commonly in the pelvic area. This can cause inflammation, pain, scar tissue, and fertility issues.

22-year-old Amber Hanna, from north Belfast, was recently diagnosed with the painful condition through a laparoscopy.

However, she pleaded for years, since she was a teenager, with doctors to diagnose her.

She told Cool FM / Downtown news that she was told her symptoms were just a result of 'normal period pain.'

She spoke to us exclusively: "Going to a hospital appointment at 17 and being told that the pain is normal, and knowing that the pain is not normal, is heartbreaking... I felt like I was crazy."

"My family members, I remember speaking to them asking 'can you do things on your period?' I was watching my sister go to work when she's on hers. They can have a completely normal life. Then whenever I'm on mine, I can't do anything. I am lying in bed. My mum has to help me walk up and down the stairs."

"Whenever I was younger I used to dance and do kickboxing. I had to leave... I couldn't do it anymore I was in too much pain."

"Whenever I went to gynaecology I was offered contraceptives. I wanted to find out what was wrong before I tried them. I was not interested in them. But I did try, and nothing worked."

"Nobody wanted to tell me that my pain was not normal, and it wasn't all in my head."

She describes what it was like to finally get her diagnoses after five years: "It was so relieving but it was also so heart-breaking. I remember saying to my mum before surgery, that if they do tell me I have endometriosis, it's going to be so sad, but it's going to be such a relief because I am not going to gaslight myself anymore and tell myself there is nothing wrong with me."

"It is heart-breaking, that I am going to have to deal with this for the rest of my life."

"The relief when they told me endometriosis was found. I remember lying in hospital crying my eyes out... I've been fighting for this for years."

Amber wants more to be done to recognise endometriosis and support women, both physically and mentally.

The Department of Health says women’s health, including Endometriosis care, is a key focus, with a Regional HSC Gynaecology Services Forum set up to drive improvements.

A statement from the department reads: "Women’s health, including services for those suffering from conditions including Endometriosis is a key area of focus for both the Health Minister and the Department.

There is considerable work underway across the health and care system to try and reduce waiting times and develop pathways for gynaecology specific conditions. Indeed, the Minister recently announced a package of initiatives to tackle waiting lists, including outpatient waits within gynaecology.

The Getting It Right First Time (GIRFT) Report for Gynaecology identifies 20 general recommendations to improve services through coordinated regional action, as well as a list of specific recommendations for each Trust to take forward.

A Regional HSC Gynaecology Services Forum has been established to oversee ongoing service improvement and implementation at a local and regional level. Although work is at an early stage of development and will require additional funding, this will include mapping clinical pathways from presentation at GP services into secondary and tertiary care which will benefit both patients and clinicians.

In addition, whilst ongoing budget pressures continue to limit the ability to commit to specific Women’s health public awareness campaigns, the Department is currently considering opportunities, subject to resources, to improve awareness as well as more targeted clinical education on conditions affecting women’s health and wellbeing."