Colleen reveals the physical and emotional agony of endometriosis

Colleen Lewis raising awareness of the Endometriosis Support Group in the Lurgan area.  INLM2115-412
Colleen Lewis raising awareness of the Endometriosis Support Group in the Lurgan area. INLM2115-412

Women’s problems - it’s a phrase usually accompanied by a knowing but embarrassed look and a tacit understanding that the subject shouldn’t be broached any further.

But it this taboo that a local woman and her support group are aiming to break by bringing the subject out into the open.

Colleen Furphy (34) has suffered from the debilitating condition of endometriosis since after the birth of her son Brandon 12 years ago.

Endometriosis is a condition where some cells fail to leave the womb in the form of a monthly period, but instead migrate to other parts of the body where they build up and then bleed.

It not only results in painful or heavy periods but can lead to infertility and bowel and bladder problems.

For Colleen, the condition initially manifested itself as agonising pain each month. She said, “I had never had pain like it. I was passing out and being sick. It was so bad my partner had to move me in the bed as I couldn’t do it myself.”

After an initial visit to her GP, Colleen was informed that there was an eight to nine month waiting list for an appointment at Craigavon Hospital for a laparoscopy to find out what was wrong.

Meanwhile, as time went on, the pain was just not confined to a monthly event, but began to occur throughout the month, and she was finding it increasingly difficult to cope. “My partner was having to take time off work and my sister and dad were also having to help me too as my son was just a toddler,” she said.

In desperation, she saved up to see a consultant privately, who said endometriosis was highly unlikely and told her it was “normal” and that she just had a low pain threshold.

However, about a year later, she ended up back in hospital again, but by a roundabout route. “At that time we were trying for a baby but nothing was happening, and because of that they began to take notice,” she said.

A laparoscopy confirmed that Colleen did have endometriosis and that it was at stage four, the most severe. And, in what was the most devastating aspect for the young mum, she was also told that she was unlikely to have any more children and would probably need an early hysterectomy.

Another procedure - a laparotomy - where some of the endometriosis is cut away, was not possible as the procedure was deemed too dangerous without damaging the organs.

It was at this point that Colleen got in touch with the Endometriosis Support Group, based in the City Hospital in Belfast and affiliated to Endometriosis UK.

And in what marked a turning point, they put her in touch with Dr David Hunter, the only endometriosis specialist in Northern Ireland.

Under his care, Colleen underwent a number of surgical procedures where some of the endometriosis was lasered away, which alleviated the pain for a while, before it would return as bad as ever.

She said, “My stomach wall was covered in it and my bowel was really bad.”

At the same time, she and her then partner were trying for another baby, and went through four rounds of IVF treatment, one of which resulted in an ectopic pregnancy.

In the end, sadly and reluctantly, Colleen had no option but to undergo a total hysterectomy last year, in which the womb, ovaries and her remaining Fallopian tube were removed.

She said, “I felt guilty for my partner and my son, who had always wanted a brother or sister, that my body wasn’t working properly.

“I knew I had to do it but I still had a feeling of regret at having it done.”

She also had to face an almost instant menopause, with hot flushes starting within days of leaving the hospital.

And she admits to feeling a bit “cheated” as she still gets pain - although not nearly as bad - despite having taken the huge step of having the hysterectomy.

She added, “My bowel and bladder are still covered in endometriosis and I am on hormone replacement therapy which activates it.

“The problem is that my organs were scarred and permanently damaged, which is one of the reasons why it is important to catch endometriosis early.

“Even though I have a constant dragging feeling, I just get on with things. I am able to work now, which I wasn’t years ago, and my employer is very good if I need to take some time off.

“I do a lot of swimming which helps and I have the support group as well.”

Colleen explained that the support group is trying to lobby Stormont to create a centre of excellence, where endometriosis could be diagnosed quickly, and is also working to make more doctor and consultants aware of the condition.

In March, the support group’s founder Anna Jamieson and other members visited Stormont to highlight World Endometriosis Day.

Said Colleen, “Like me, a lot of young girls or women are still being told that the pain they are having is normal and just part of being a woman.

“But it’s not normal if it’s stopping you from going to work or school, from eating or if you can’t stand up.

“The charity is urging people not to be afraid to talk about endometriosis, which will create a greater awareness and understanding of the condition.”

With one in 10 women in the UK suffering from endometriosis, the charity’s aim is that in the future women and girls receive a proper diagnosis, quality medical care, and, hopefully, a cure.