Living with endometriosis: ‘My dream of having a family was over’

Affecting up to 100,000 women in Ireland, endometriosis is a gynaecological condition which causes pelvic pain and in some cases infertility. It can be difficult to diagnose and many women suffer for years before receiving treatment.

Caitríona McCormack has experience of this, she went through many years of crippling pain before finally being diagnosed.

"I had my first symptoms when I was 22 years old - I suffered with excruciating pain and ended up in A&E more times than I can remember," says the Kildare woman. "They couldn't tell me what was wrong as nothing showed up in my bloods or x-rays. I didn't like taking painkillers because I believed they were bad for the body but seven years later I was still in an out of my GP every other week and eventually a friend saw me curled up on the sofa with a hot water bottle and said I needed help.

“I think I had become so used to the pain that it became my norm. But it was affecting everything, my hormones were up and down, and I was having mood swings. It affected my relationships with my family, boyfriend and my work was suffering. Until that point, I just kept going and didn’t see anyone when I was in a bad way, so I don’t think people really knew how bad things were.”

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McCormack took her friend’s advice and sought medical help. After a laparoscopy and hysteroscopy, she was diagnosed with endometriosis and pelvic congestion syndrome. And while the initial treatment alleviated some of the pain she was going through, it didn’t last long.

“The doctor removed some endometrial tissue during the procedure, and I had some relief for about a year, then the symptoms worsened again,” says the 47-year-old. “I was prescribed the pill to help with the symptoms as well as different painkillers and anti-inflammatories. I was told that they would work, but they didn’t, and I ended up many more times in A&E over the years in dire pain. I put on morphine which finally took the pain away but the side effects (debilitating migraines and nausea) were dreadful - so I couldn’t take it.”

The grief of never having a baby was intense. I had to stop working, I just couldn't do it anymore and was totally exhausted so I had to find a road to healing

Things began to get worse for McCormack who developed a cyst on her uterus which was removed. But a week later, while visiting a friend in the UK, she haemorrhaged and was rushed to hospital. She lost so much blood that she was bedridden for a fortnight and the whole experience sent her body into shock and triggered depression.

360 degree turn of events

This episode preceded several more years of living with constant pain while trying a string of alternative treatments to try and bring an end to her suffering.

“For years I had continuous acupuncture and physiotherapy, tried Chinese herbs, pain management and healings from various types of healers all over the country but none of it really helped or worked,” she says. “Also, no one really talks about the financial aspect of being sick and self-employed in this country - most are too embarrassed I suppose - but the pressure was immense.

“I had two more laparoscopies and then five years ago it was time for a hysterectomy. This was the last option which I was trying to avoid at all costs. I still wanted children and I had met a few women at endo (endometriosis) conferences who had hysterectomies but are still in daily pain.

“My dream of having a family, even one child, was over. My relationship had finished, and I was too sick to be in another or take care of anyone else, much less a baby even if I was able to conceive. The grief of never having a baby was intense. I had to stop working, I just couldn’t do it anymore and was totally exhausted so I had to find a road to healing. I felt like my life was passing me by and I had no compass, no control over what was happening, it seemed like there was no light at the end of the tunnel and no end to this nightmare.”

McCormack says depression, anxiety and panic attacks became part and parcel of her life. "My first panic attack happened when I couldn't drive after getting into the car - me, the one who travelled fearlessly around Europe on her own," she recalls. "The constant pain kept me awake at night, so that combined with the cocktail of medication was taking its toll on me and mentally I was really struggling. I had always been a go getter and as a young girl loved to dance, run and play tennis - and I was a brown belt in Karate. Now I spent most of my time in bed, a 360 degree turn of events - it was pretty soul destroying."

Before endometriosis, McCormack had loved yoga and now at an incredibly low ebb, she decided to give it another go. “One day I dragged myself to a restorative yoga class with others who were ill with cancer, arthritis, fibromyalgia and other illnesses,” she says. “After the class my pelvic pain had eased, I had forgotten how powerful yoga is. I continued going to the class and got back on to my mat at home, doing various breathing practices to help relax my body and support and strengthen my mind.

“I continued my daily practice in tandem with counselling, a healthy diet which supported my liver, daily herbal supplements and doing reiki on myself as I’m a reiki master - and I gradually started to improve.”

She now runs Yoga Ireland and Authentic Reiki Tera Mai (in Dublin and Kildare). “I still have my bad days, but they are vastly reduced, and the pain is much less. My hormone balance, mental health and mood are all much improved and if I feel unwell, I do some breathing and mindfulness which helps me cope and I always feel better and more energised for it.”

Lucille Cassidy from Dunfanaghy, Co Donegal is a chartered physiotherapist as well as both a Pilates and yoga teacher. She runs Sandhill House, a retreat centre for health and wellness. "I now see my yoga practice as an opportunity to breathe deeply, move consciously in a way which feels good and to use the movement as medicine to nurture all parts of myself; body, mind, heart and soul," she says.

“Aches and pains are eased, muscles and joints are lengthened and after a yoga practice, I always feel more grounded, calm and relaxed. It soothes my nervous system, balances my energy and helps to relieve stress and tension.”

What is endometriosis?

– Endometriosis is a gynaecological condition which causes painful periods, pelvic pain and sometimes infertility.

– It affects up to 100,000 women in Ireland and is commonly found on the ovaries, behind the womb and close to the bowel.

– Like the lining of the uterus, it bleeds during a woman’s period and this can cause pain.

– Endometriosis on the ovaries can lead to ovarian cysts and severe endometriosis can cause pelvic scarring and adhesions - this makes the pelvic organs “sticky” so an ovary can get stuck to the back of the womb or the bowel can become attached to the ovary or womb.

– Treatment includes surgery and medication.