I have learned to live with constant fatigue

Bébhinn Nic Liam, who suffers from endometriosis, sometimes called a hidden disease, talks to SYLVIA THOMPSON

ENDOMETRIOSIS is often called a hidden disease, not only because you can’t see the internal damage the endometrial tissue (usually found in the lining of the womb) causes when it breaks off and attaches itself to other organs, but because the pain and discomfort of the condition varies hugely from woman to woman.

My symptoms started with severe pain and grotesque bloating before my period each month. The problem was that I didn’t realise this was abnormal. Finally, I went to see a GP, who thought my symptoms were psychological and prescribed Prozac.

I have since discovered that antidepressants are prescribed to many women when they complain of physical pain that is difficult to diagnose.

My symptoms escalated so rapidly with unbelievable pain and I knew that there was something physically wrong with me, but every request to see a gynaecologist was rebuffed.

It sounds awful but when I started having rectal bleeding, as a result of the endometriosis invading the bowel, I was glad because it was only then that my GP thought it worth investigating physically. I was referred to a bowel specialist in Sheffield where I was living at the time.

That bowel specialist was the first person to mention endometriosis to me. In fact, he was adamant I did not have it. I had no idea what it was at the time and remember being puzzled by him telling me I didn’t have it.

After some investigations – including a colonoscopy which revealed nothing – spread out over the following year (1997), I was told I had irritable bowel syndrome and that the rectal bleeding was due to piles. When I asked why the rectal bleeding always coincided with my period, I got no answer beyond a thumped desk and another exclamation of: “You DO NOT HAVE endometriosis!”

If it hadn’t been for a very caring nurse at that point, I think my distress at the sheer hopelessness I felt would have overwhelmed me. I was in so much pain and so stressed that a quiet voice encouraging me to keep going until I got satisfactory answers gave me hope again.

When I went back to the hospital to have the bleeding “piles” treated, it was just a few days after my period had ended. I was prepared for the procedure and bracing myself for the injection when the surgeon saw something he knew wasn’t piles. Suddenly I was hearing the word endometriosis being muttered again. He came back in and said he was referring me directly to a gynaecologist.

I found the time around the first referral for a laparoscopy – which gave me an official diagnosis and the opportunity to treat the endometriosis surgically – was very emotional. I was greatly relieved at being given a name for this illness, but also fearful when I started reading about it.

I was struggling at work. I was collapsing at home every evening with no energy for anything. The relationship I was in started to suffer under the strain.

That first operation was also my first experience of hospital. I went in as a day case, and four days later I was still there. I had extensive surgery as it was discovered I had stage 4 (most severe) endometriosis.

Only half of the endometrial tissue could be removed as it was encasing much of my bowel and had stuck my womb and bowel together. This would require further surgery and a bowel surgeon on the team.

I was given four months off work and even then when I returned on a part-time basis it was more than I could cope with. Looking back I can see that I was so ground down by the struggle to keep going I had no strength left by the time I had the surgery. Recovery was dreadfully slow.

I was on a hormonal drug which is rarely used now because of the side effects. I changed to another drug which also took a lot of adjusting to.

I changed jobs around this time and my partner and I were also due to start IVF treatment, but unfortunately our relationship broke down irretrievably just beforehand. At this point, my gynaecologist suggested I should opt for major surgery (the laparotomy).

Six months later, I had surgery. I worked three days a week which I barely managed to sustain. My co-worker was really understanding which reduced my stress a lot. I was learning pretty fast just how much stress and pain were related.

This second surgery really wiped me out. I was given six months’ leave from work and returned to Dublin to recuperate. My family was a fantastic help during this time. I was put on hormonal drugs, which brought on menopausal symptoms to dampen down the activity of any remaining endometrial deposits.

As part of my recovery, I took up rock climbing. It might sound like a strange hobby to take up, but it helped me regain confidence in my body. I’d gone from seeing if I could manage to get to the postbox on the corner of the street and back to gently seeing if my stomach muscles had healed enough to help me get up a climbing wall. Bit by bit I got a little fitter, I felt energy I hadn’t had in years, and was always challenging myself a tiny bit more.

I joined the Irish Mountaineering Club and found the climbing itself was very exhilarating. It gave me the chance to see wonderful hidden parts of Ireland, from Fair Head to Ardmore, with a great bunch of people. When I did my first – and only as it turned out – high altitude climb in the Alps, I suddenly realised that exactly a year previously I had returned home to Dublin in a wheelchair. The contrast could not have been greater.

Despite changes to my diet and the vast improvement in my fitness level, the endometriosis came back and I felt a gradual decline in my strength and stamina levels. I had to give up rock climbing, but instead started going to life-drawing classes. I needed to express myself creatively.

Since I came back to Dublin in 1999, I have had one operation to remove more endometrial tissue. I am due to have another one soon. It’s important to try to space out surgical interventions, otherwise the benefits diminish.

I am constantly on medication without which I would be in agony (I’ve tried it). I also take painkillers when I need them. I’ve had a procedure done for pain management, which didn’t really stop the pain but did stop the constant nausea.

What affects me most now is fatigue. Learning to live with that has taken me a long time. I try to pace myself. I have good days and bad days.

On bad days I may not leave the house. On good days, I forget about lost days, and do what I can. If all I do is make a dinner then that is an achievement. If I do shopping as well, or do some painting or help organise something well that’s just brilliant.

It sounds simplistic but if I start dwelling on what I can’t do or haven’t done it is a downward spiral. I have to be as vigilant about my mental health as much as my physical health. I am involved in my local community and recently became a volunteer with the Endometriosis Association of Ireland.

I am a member of the Arts and Disability Forum which helped me get started in printmaking a few years ago.

A night out to see Imelda May play in Vicar Street earlier this year had me in bed the next two days but it was worth it. It’s important to do the things that you enjoy as endometriosis can strip that away and distort the very things that make life worth living.

It can affect your most intimate moments, your ability to enjoy a social life, to stay connected to family or maintain a career.

I am blessed with a partner who shares an understanding of chronic pain and a family who are supportive. My GP is sympathetic and my gynaecologist has great understanding and experience of endometriosis.

My art is very important to me, although I do not always have the energy to pursue ideas. It’s not just about physical pain but the pain of not being listened to seriously, of an illness that only affects women and so is off the radar in so many ways.

• If you have had a health experience – good or bad – that you would like to share, contact healthsupplement@irishtimes.com