Nicole's Story

“Well, to use your own words, it looks like your ovaries have ‘Quit’.”

These were the words of the endocrinologist (hormone specialist) I’d been referred to. I had missed two periods and my GP had explained that for some reason my ovaries weren’t working properly. Best case scenario, there’d be some way of fixing it, worst case scenario; well she didn’t want to go there.

So, now I’d heard it for real. My worst fear had come true. My GP had played it down telling me not to get too worried about it yet, but the endocrinologist had delivered the devastating blow. I was infertile. The term menopause wasn’t used at first. I was told I had fluctuating ovarian function, a precursor to premature ovarian failure.

I was in shock. So was my husband who held my hand through the entire appointment. I was only 30 years old. This couldn’t be happening. My mother went through menopause at 50 years old. There must be some mistake.

My endocrinologist explained there were a few tests she needed to do to rule out serious disease and to confirm her diagnosis. The tests all came back negative so that was good news, but the condition was confirmed. They haven’t detected a cause in my case and this can be frustrating at times. But I take comfort that I appear to be healthy otherwise.

After meeting with the endocrinologist, I decided I needed a second opinion. Maybe she doesn’t know what she’s doing, I thought. So my GP referred me to another specialist. He didn’t need to think about it for very long. He looked at the blood test results and agreed with the first specialist. So I was back at square one, but at least I knew it had to be right. This specialist focused on our desire to start a family and expanded on the idea of egg donation that the endocrinologist had mentioned. We hadn’t even started trying to get pregnant before all this happened and all of a sudden it seemed an impossible task. I certainly wasn’t prepared for that experience yet. We were grateful for the information, but we put it to one side while we sorted out my health.

It was now a few months since my last period and I still hadn’t noticed any symptoms (except a couple of what might’ve been hot flashes – but I couldn’t be sure). My specialist humoured me; she let me keep doing monthly blood tests to observe my FSH levels. The high results were my only concrete evidence that this was actually happening. They were pretty irrefutable. After a while, my husband could see I was using the blood tests as a way of building up false hope as I dreamed of the test result that would prove it was all some horrible mistake. He convinced me I should stop having them every month as the results never proved to be any different and this was hitting us both pretty hard.

As the information gradually soaked in I realized this could be why the laparoscopy earlier in the year hadn’t resolved all my problems with painful sex. My GP thought I might have endometriosis and, after a year of waiting on the public list, I finally had a laparoscopy which confirmed her suspicions. The tissue was removed and I was told it wasn’t a bad case and everything should be a lot better now. Well, it was better, but still not back to normal. I thought it was in my head; that I was so used to the pain I was pre-empting it. Now I know that vaginal atrophy is another symptom of low oestrogen levels, so that was probably contributing to my discomfort.

Another ‘symptom’ I hadn’t noticed was my loss of libido. As far as I was concerned sex meant pain. So no wonder my interest in it waned. But of course this could also have been affected by my natural oestrogen levels changing. Suffice it to say, our love life has suffered over the last couple of years. But we’re working on it!

I’ve always found the pill a convenient, hassle-free form of contraception. Little did I know how effectively it would mask the effects of my failing ovaries. I’ll never know if I would’ve had other symptoms that may have led to an earlier diagnosis had I not been on the pill. However, I’ve since learned that would’ve made little difference as symptoms simply mean ‘the change’ has begun and there’s no turning back the clock.

Over the two years preceding diagnosis my periods were getting shorter. Whenever I asked a health professional about this, I was assured it was a natural effect of the pill. So I stopped worrying about it. My endocrinologist explained that although the pill didn’t cause my ovaries to stop working, it masked the symptoms. It sure did! To date my only symptoms have been two missed periods, funny moods, some breast tenderness and a week of hot flashes. And I’m not even convinced the hot flashes were real, as I only started getting them after my specialist asked if I’d had any which was two months after I’d come off the pill. Surely they would’ve started sooner than that? I started taking HRT within a couple of months of diagnosis for the health benefits which is why I have not had any other symptoms.

Both specialists told me I should start HRT as soon as possible. They said I should view it as a medicine, much like the insulin diabetics take. Of course, the first thought that popped into my head was “breast cancer” (it runs in my family) after the much-publicised WHI trial in the '90s that was ended due to a higher than normal rate of breast cancer among participants taking HRT. But this was a trial done on normal age menopausal women and I was assured that there was no way you could compare a 30 year-old woman replacing the oestrogen that’s supposed to be in her body with a 50 year-old woman adding oestrogen that’s not supposed to be there. So I started it and I felt a million times better. The mood swings evened out, the breast tenderness stopped, my skin cleared up and I had much more energy. Needless to say both my husband and I were very relieved!

I’m still on it now – eighteen months later – and although I feel well, I still have a few nagging fears about the long-term health effects it may have. But I’m on a lower dose of oestrogen than if I was on the pill and I’d probably happily still be taking that if all this hadn’t happened, so I figure I’m doing more good than harm. I’d certainly like to stave off osteoporosis and heart disease as long as possible. I've also heard that the 4-7% of women with POF who do get pregnant naturally are usually taking HRT so that's another good reason to be on it. After all, you never know!

My husband has been to every appointment with me and has been my rock through this whole experience. He showed his true colours right after the initial diagnosis: rather than focusing on the family we now may never have, he thought of the spare time and money we'd have and took me in his arms and said, “Well, we can go on that big overseas trip now, can’t we?!” He made me smile in the middle of my shock, fear and grief. He has continued to do this to this day and I’m depending on him to continue doing that.

My message to other women is this: if you think something’s wrong with your body, find a doctor who takes you seriously. I was lucky my GP listened to me, ordered blood tests and referred me to a specialist very quickly. I’ve heard of women suffering for years with menopausal symptoms and GPs putting it down to just about everything except menopause. It’s simply doesn’t enter their heads. With 1% of the female population living with this condition, you’d think there’d be more awareness.

I’m still angry the pill masked what was happening to me and that my concerns were ignored for so long. But I now know that by the time premature ovarian failure is detectable it’s too late to do anything about it. I was always going to be in this position whenever I found out.

Despite all of this, I have many things to be thankful for:

I’ll always be grateful to whichever health professional once told me to keep track of my periods. This has proved very important in my diagnosis.

I feel so lucky to have married such a wonderful man. Without him I don’t know how I would’ve survived the last few years.

I’m glad I was already married when I found out. I certainly doubted my qualifications as a wife as a result of this diagnosis. After all, as the rhyme goes, “first comes love, then comes marriage, then comes babies in a carriage”. I didn’t fit that bill anymore. I struggled with that for a long time. I’m sure I would’ve found it very difficult to accept that my fiancé still wanted to marry me knowing the difficulties we would have attempting to start the family we’d always assumed we’d have.

It’s been a tough first couple of years of marriage and quite a learning curve. But we’re now closer than ever and our communication skills have definitely improved.

We’ve had one publicly funded cycle of IVF which unfortunately didn’t work out, but we’ll always be grateful to our good friend for donating her eggs to us. We are eligible for a second cycle when we’re ready. The first one was quite emotionally draining and we’re still working through a lot of issues now. We’re in no hurry, but we will probably give it another go later in the year.

I'm still sad that any child we might be lucky enough to have won't be genetically related to me, but it's a more distant pain than it once was. I've learned to accept the situation. I acknowledge the negatives but I'm determined to emphasise the positives. This is not a life sentence. We only get one chance at this life and I intend to squeeze all the good I can out of it.

Personal_Stories