Monday, 26 February 2018

Surviving Endometriosis - just!

The strange thing about endometriosis is that no-one talks about it (Endometriosis: quick definition). I suffered from extremely severe 'period pains' between the ages of 13 and 53. For 2-3 days a month I had excruciating abdominal pain. Sometimes it was so bad that I fainted, my extremities would be freezing cold, I would shake and vomit up to 20 times a day. Innumerable doctors shook their heads and talked about dysmenorrhoea; some were very sympathetic others were not. One actually said, 'Well you're not going to die of it.' Nothing they prescribed touched the pain very much. Although I had my suspicions about what was wrong, endometriosis was not diagnosed until I was 39 when, even though he had the results of a laproscopy in front of him, my GP expressed scepticism about whether I was really suffering from it.

At school, the attitude was, 'Pull yourself together, everybody has periods.' That was if I got as far as telling friends or teachers the real reason for my repeated bouts of 'illness'. When I was 16, due to the abdominal pain, I had my appendix out only to be told that there was nothing wrong with it.  I felt labeled as 'someone who can't cope' although, in fact, I managed to do most of the things my friends did - play in an orchestra, swim and play tennis regularly and pass enough exams to get a degree and a nursing qualification. 

In my 40's, I discovered my father's sister had had similar problems but this had never been mentioned or discussed at home.

How did I cope?

I was lucky to have parents who never made me feel guilty or inadequate because I was ill. They lived with it and saw how absolutely incapacitated I was for several days a month. Having a slightly irregular cycle meant it wasn't even possible to plan ahead with much accuracy but they put up with all this and never complained or pushed me to do things I couldn't manage. They unfailingly gave sympathetic support. This usually meant not fussing and leaving me in a quiet place, near a toilet, with plenty of vomit bowls and a hot water bottle. My mother always held out the hope the doctors would come up with a wonderful cure and this occasionally led to arguments as I got older because I increasingly came to see such hopes as futile.  

My husband was equally brilliant. During all the years I suffered, he put up with watching the person he loved in complete agony. He regularly had to cancel engagements (which he hates doing) because I was too ill to make a phone call. He negotiated the mixture of disappointment and embarrassment that met these cancellations - sometimes it was tinged with an unspoken hint, 'you're letting us down'. He drove me to occasional emergency appointments with the GP when the pain became so unbearable we wondered if something else was causing it such as an ecpotic pregnancy. He accompanied me on the inevitable infertility investigations and ate out alone in restaurants when we were on holiday.

I developed a strategy for coping. In my mid twenties I gave up searching for any kind of cure or even a firm diagnosis. I simply refused to spend any more energy thinking about being ill or visiting doctors and dealing with their scepticism. I trained myself to behave as though every period was the last time this was going to happen. As soon I was able to stand up again, I launched back into leading a normal life. I never said, 'no,' to anything because I thought I might be ill. I simply lived with the consequences of having to cancel or have a 'plan b'. I learnt that when the chips are down, there aren't many situations in which you are indispensable. Lectures can be rescheduled, friends and colleagues will help out, things can wait a day or two. 

I had brilliant managers during my nursing career. Perhaps because of their medical background, they 'got it' and it was the one time in my life when I could ring in sick, give the real reason and not be met with embarrassment or incomprehension. I am so grateful for the way they juggled rotas. However, when I was well, I was always the person who could not say 'no' if asked to do an extra shift. Later, as a parish priest and a lecturer, life was a little easier in that my diary was slightly more within my own control and most things could be rescheduled or a colleague asked to help.

Infertility can be one of the effects of endometriosis. I would have loved to have children but my husband was more ambivalent and, as getting pregnant became ever more unlikely, I simply ceased to think about it very much. I appreciate that, given my situation, we are fortunate to be people who did not feel desperate to have children. However, as I get older, I do regret that we have no immediate 'next generation' to share life with.

Are there any positives about living with endometriosis?

Almost none! However, there have been one or two useful spin-offs. I did develop a capacity for hard work. I usually seemed to get as much done as other people while missing out on 2-3 days a month. I felt pressure to be as good as I possibly could be at my job so that people would put up with my regular absences. This, of course, had both negative and positive consequences. The positive side of it was that, on the whole, I learned to plan well and get through a large workload quickly and efficiently and to maintain empathetic relationships with colleagues on whom I was more than normally dependant. I also developed a capacity to observe and listen out for pain in others. As both a nurse and a priest, this is important. Nurses have a saying, 'Pain is what the patient says it is', Samaritans talk about 'steering into distress.' Having endometriosis has helped me to understand that all expressions of pain, physical or emotional, are deserving of being taken seriously - people need support to explore their own pain and to decide for themselves what course of action they want to take. Many of the responses of our medical community and our wider society to pain are unhelpful or inadequate.

What has been most difficult about living with endometriosis?

I have struggled with feeling guilty about the strain it has put on my family and colleagues. The pain has been so bad at times that, while it lasts, I have felt I would do almost anything to end it - the only thing that has kept me going is knowing that it will end sooner or later. 

Undoubtedly one of the biggest problems has been the wall of silence surrounding, generally, anything to do with periods and, specifically, a disease that is gynaecological in nature. My family did not talk about it. We often colluded with the silence by not giving the real reason I was incapacitated. I did not even know endometriosis existed until I was well into my 20's. I grew up with a sense that maybe there was something wrong with my attitude to periods - perhaps I was making a lot of fuss about something others were able to cope with. I did not know that someone else in my family had struggled with the disease and might have had some wisdom to offer.

Even doctors collude in the silence. With two notable exceptions, mine seldom seemed to listen. As soon as I said 'trouble with periods', they would say, 'Oh it's dymenorrhoea' and write a prescription for naproxen or the pill. Some looked as though they believed you, others did not. I used to wonder how there could ever be any progress in finding treatments for a condition if medical staff routinely took so little interest in listening to a patient describe their actual symptoms. Consequently, it took me 26 years to arrive at a diagnosis and that meant I was unaware of the dangers of infertility that are associated with the disease until I was too old to do very much about it.

For the future: 

What is it that makes 'women's problems' so unacceptable that we cannot talk freely about the reality of what is happening to our bodies? If there is one thing I would change (other than not having the disease!) it is to make it absolutely acceptable for a woman to be able to  talk openly about this illness to her family, her boss, her colleagues and her doctors. Why should there be any more shame or embarrassment about saying 'I will have to cancel because my period is making me very unwell' than 'I will have to cancel because I have flu or food poisoning or a flare up of my M.S.'?

Until it is possible to talk about endometriosis openly, we will neither make all the progress we can in finding a cure for this puzzling condition nor enable women who live with it to live as openly, fully and honestly as anyone else with a debilitating, chronic illness.

Please support Endometriosis Awareness Week 2018  (3rd - 9th March). If you know anyone with the disease, listen to them, let them feel it's OK to talk about it if they want to. Educate yourself so that you understand what it is and its impact on the lives of those who suffer with it and their families. Support research if you can. Tell your story if you have any experience of it and feel you can. Especially help young people who suffer not to feel stigmatised or alone.

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