Five years since her diagnosis, Nia Fisher has made peace with the condition which robbed her of her fertility and the future she had planned.
It took her a long time to come to terms with her diagnosis, but setting up a place where fellow sufferers could share and benefit from each other’s experiences helped her return to the assumption that at some point along the way, things were going to be just brilliant.
We asked her some questions about the past five years, and the next 50.
What made you seek medical advice?
I had missed a few periods and knowing there was no chance I could be pregnant, I simply put it down to stress. There was a lot going on in my life at that time so this factor, combined with feeling more emotional than usual wasn’t really cause for concern.
However, after a couple of months of suffering with extreme hot flushes and night sweats, I felt like I needed to see my doctor. I just instinctively knew this wasn’t quite normal.
Had you heard of the condition before?
Although I’d heard of premature menopause it certainly wasn’t on my radar. As far as I was aware, I didn’t know anyone who had been through it, and my mum went through menopause in her 50s so the subject had never been raised.
What happened after the first visit to your GP?
On first discussing my symptoms, he understandably said it was unlikely to be menopause because of my age, but that he’d send me for some routine blood tests anyway.
What were the results and how did you feel when you received them?
The impending results were weighing heavily on my mind. As I was away visiting family at the time, I decided to call and receive the information over the phone. I don’t remember all the specific checks that were done, I only remember the doctor saying that all my levels were normal apart from one, which can be an indication of premature menopause. He said more blood tests would have to be done before we could be sure.
Those words hit me like a ton of bricks. When I told my parents and heard the words out loud I started to cry.
“The irony of waiting in the maternity unit of the hospital for what was my first appointment with the specialist responsible for talking me through the options of treatment was not lost on me.”
What was the next stage of your diagnosis?
I was referred to the endocrinology (hormone) department of my local hospital and over the next six months there were plenty more tests. My first official diagnosis came almost a year after my first hot flash and it was premature ovarian failure, more commonly known as premature menopause. In a matter of weeks I was going to turn 36.
I had never seriously given the idea of freezing my eggs any thought, even though I had been single for quite a while. I always had faith that things would happen as and when they should.
On receiving this diagnosis, the first step was to do a more detailed blood test that would indicate my egg reserve and the quality of those eggs. If harvesting my eggs was still an option I knew I would take it.
But the final blow came a few weeks later. My ovaries had given up and any eggs I did have would be of far too poor quality to conceive. I was infertile.
Were you given any reason for why this had happened?
There are various factors that can contribute to the onset of premature menopause: surgery for cancer, an autoimmune disease, genetics… but none of these applied to me, I was just one of the unfortunate women for whom no reason can be found.
What – if any – treatment did you receive?
I wasn’t in a relationship and not actively pursuing the idea of having a family at that time so my treatment took the form of finding the right HRT (hormone replacement therapy) for me.
Due to my age it was important that my body receive the oestrogen that it was no longer producing to help combat osteoporosis. HRT can also help relieve a number of menopausal symptoms.
The irony of waiting in the maternity unit of the hospital for my first appointment with the specialist responsible for talking me through the options of treatment was not lost on me. It’s moments like that which push you further over an edge you’re already clinging to for dear life.
Luckily for me my hot flashes had already subsided but the medication definitely made a difference to my emotional state.
I love children, I have a beautiful niece and nephew and incredible godchildren and I had always imagined giving birth and seeing myself reflected in a little person.
What was the emotional impact of your diagnosis and how did you deal with it?
I didn’t feel like I knew who I was anymore, as if I needed to redefine myself. I’d never realised that as a woman I subconsciously considered my fertility to be a huge part of who I was. In one moment I felt like the bottom had dropped out of my world. I realise now I went into a kind of shock mode; I lost my confidence, my self-esteem plummeted and I felt undesirable and unworthy of attention from the opposite sex.
I only took two days off work and then just pushed on as that was the only way I could function.
There was a definite period of mourning, of loss, but there is no right or wrong time to go through that; we face it as and when we are ready. Those select friends and family who knew what was going on tried to be of comfort to me, but were powerless to help. No one knew what to say as they hadn’t had any experience with it before.
My best friend’s baby and my niece were both born the year I got my diagnosis. There were also three pregnancies at work and of course more followed over time for other close friends. You feel so isolated from your friends and peers; every announcement although miraculous and joyful is yet another reminder of what you yourself are not capable of.
No offer of support or counselling was given by the hospital, which is something that should definitely be addressed. It breaks my heart to think of others in the same position hearing the shocking news and then being left to find their way through with no suggestion of professional help.
Have you been involved with any support groups or made contact with others who have gone through a similar experience?
In the early stages I couldn’t do much more than just focus on getting through the days. It was four years on when the grief finally hit me and I was finally ready to face it that I looked for support.
The only contact I had with anyone who knows specifically about premature menopause was through The Daisy Network, a wonderful site dedicated to this condition. They have members who volunteer their time to take calls from others who have signed up and need someone to speak to.
It was a huge help to hear a friendly voice say that they understood. However, finding support for something so rarely spoken about isn’t easy.
“I was a lot of things before I was diagnosed and I forgot for a while that I am still all those things now.”
I took refuge in my journal and eventually I felt so passionately that no one should have to face something so significant alone, that I set up a website, The Lotus Network, to try to help others.
It is a simple site that enables people to read my blog and also participate in the forum should they choose to share their story with others or ask any questions. The very act of writing about my experience was the catalyst for my healing. I respond to everyone who posts on the site and I know from others that it has helped them too.
How did (and does) your condition affect your day to day life?
From the outside looking in I don’t think many people would have guessed that I was struggling. It was social situations that were hardest from me, especially gatherings of family or friends with children.
I’m of an age where there aren’t usually many other single people at functions and it may surprise some people to know I would gravitate towards the children as I knew I’d be safe and none of them would care why I wasn’t there with a partner or children of my own.
I realise now I created a lot of the angst for myself; most of the time people didn’t mind about the sort of issues I was concerned about. But I felt like I had a sign on my head that said I was damaged goods. As time has passed I can recognise that no one else sees me that way; it was simply how I viewed myself.
How are you today?
Today… I am happy and finally at peace with myself. In July 2014, a little over four years on from discovering I was infertile, I finally allowed myself to grieve. I didn’t push it away and I took the time to really face how I felt and how it had affected me, finally taking steps towards healing. It took a while but I truly feel I’m out the other side of it.
Everyone will find their way that works for them; for me, being outside around nature, meditating, seeking counsel both spiritually and in the more conventional sense have all contributed to helping me find myself again.
I was a lot of things before I was diagnosed and I forgot for a while that I am still all those things now. The sum of who I am does not lie purely in my inability to conceive a child; that is only a part of me. I’m not less of a woman now, I am whole.
Fair enough, I have my ‘thing’ that may make me different from some others, but we all have those, don’t we? We are all unique and I think along the way, my faith in a ‘grander plan’ has helped me accept and let go of what I thought my life should be.
I can only assume it will be brilliant, but in a different way than I planned. There is a way through the shock and grief; I have been there and I know that it is possible to feel positive about the future again.6645 Views