Northern Ireland woman Caroline McCormick who waited 15 years for endometriosis diagnosis

When she was 14-years-old, Caroline McCormick would be “doubled in two” with excruciating pain every month during her menstrual cycle.

“The school would have to phone my mum and dad to get me sent home because I could hardly stand up,” she said.

Now 44-years-old, Caroline, who was eventually diagnosed with endometriosis, a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and Fallopian tubes, reflects on those years of pain and trying to be taken seriously.

“There were many, many trips to the GP to hear the same story that so many girls have been told, which was, ‘your just unlucky’, ‘it’s just unfortunate that this is the way it is for you’, ‘it’s just like that for some people’. I was just fobbed off. Then they would suggest it was IBS (Irritable Bowel Syndrome) that I had.”

Caroline, who is sharing her experience during Endometriosis Awareness Month, said she was eventually put on the contraceptive pill.

“It did suppress the symptoms, they weren’t as severe or as debilitating ever month, but all that was doing was masking what was going on.”

Like many women, it took Caroline years to find out what was going on.

“It was 15 years until my actual diagnosis. By that point I had got married and we wanted to start a family.

“It was through fertility investigations, when they did an investigative laparoscopy, that the endometriosis was discovered.

“Once it was discovered they did operate on it to increase my changes of having a family.”

But after the surgery Caroline developed adhesions, which are bands of tissue that join together normally separated internal organs.

“I was actually still in a lot of pain for a long, long time after the surgery and it was adhesions and scar tissue forming that were giving me the pain. That was quite hard to manage as well.”

She added: “We were then referred to the Regional Fertility Centre, as it was then, and we were very fortunate to have our daughter, who is now 10.”

As well as the physical pain of endometriosis, Caroline said the psychological toll is very taxing.

“Every month is led by how you feel, and you know at what stage in the month you are going to start experiencing your pain. And the fatigue as well, when you are trying to keep going at work and in your family life.

“Mentally that becomes very draining as well.”

Caroline, who is involved with the Endometriosis Support Group NI, based in Belfast, said her story will be very familiar to a lot of women.

“We have girls who have had hysterectomies in their early 30s.

“For a long time people thought if you have a hysterectomy that will cure it, but we now know that is not that case. And there are girls who have had hysterectomies who still have pain, it may be a lot less, but it’s not a cure.

“We are in 2022 and I think it is terrible that we are still hearing the same thing, there’s been no improvement in the quality of treatment for women in Northern Ireland.

“That is what I find so sad and frustrating, I would like to think for my daughter’s generation coming through that things will have improved, that there will be changes, that care in Northern Ireland would be more streamlined, that there would be a better process for girls who are referred on with those symptoms and how they are seen, and how they are treated.

“I think for GPs, there needs to be a very clear system in place that if a girl presents with symptoms, they know what the referral process should be.

“The same processes that there are with other conditions, because it does waste so much time and money.”

Emma Cox, ceo, of Endometriosis UK ((endometriosis-uk.org), said: “We hear a lot of stories from those with endometriosis who were told as a teenager that having excruciating pelvic pain and periods was ‘just part of being a woman’ and to put up with it, that they were being overdramatic, that the pain was all in their head, or their level of pain not believed.

“As awareness and understanding of endometriosis grows, we hope comments like these can be consigned to history – while many may experience period pain at some point, chronic pelvic pain and period pains that interfere way of everyday life are different and should not be seen as normal.”

At a recent Endometriosis Action Month event in Northern Ireland, it emerged access to care is the biggest concern facing the endometriosis community here, in particular, access to specialist care.

There is currently no fully accredited BSGE (British Society for Gynaecological Endoscopy) endometriosis specialist centre here as the centre at the Altnagelvin hospital is no longer operating.

There is one provisional BSGE centre in Northern Ireland at the Mater hospital, part of the Belfast Health and Social Care Trust.

Not everyone with endometriosis is seen in a specialist centre.

However, the relevant national (NICE) guidance, which is adopted in Northern Ireland, states that everyone with suspected or confirmed deep endometriosis involving the bowel, bladder or ureter should be seen in a specialist centre.

It is understood the Belfast Trust, which remains a provisional BSGE centre, has plans to become fully accredited and is currently preparing a business case to request the necessary funding to do this.

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