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My Story

My journey with POI

By Amy Bennie / 15th Oct, 2016

When I was younger I knew more than anything else I wanted to be a mum. I assumed it was an inevitable event in my future that I wouldn’t have to think about until I was an adult. Little did I know my fertility would become a huge part of my life from the age of 15…

After failing to get my period, blood tests showed that I had developed Premature Ovarian Insufficiency (POI), which in layman’s terms meant that my ovaries weren’t responding to my hormones and had stopped working. POI can happen for many reasons; in my case, after numerous tests, an official cause has never been found, but it has been suggested that at some point in my teens I might have developed an autoimmune disorder that attacked my ovaries

At the time of the diagnosis, I remember my mum crying when the doctor told us, and my dad and sister being confused as to how this had happened when I hadn’t been ill or had any other related health issues. I on the other hand didn’t really comprehend the extent of the diagnosis, assuming that, yes, it may be difficult to have children in years to come, but I had my GCSE’s to deal with which was much more important at the time. It was only after my yearly endocrinologist appointments that the realisation of the condition would hit home and I would often have a few days where I would break down and wonder why this had happened to me and the worry of what my future would entail. I didn’t tell any of my friends, and every day when I took my hormone medication, it would be a reminder that the reason I take it, is because I can’t have my own children.

The reason I didn’t tell people was because I didn’t want pity, I didn’t want people to feel sorry for me, or be afraid to discuss children around me, so I decided to keep it between me and my family.

The reason I didn’t tell people the truth was because I didn’t want pity, I didn’t want people to feel sorry for me, or be afraid to discuss children around me, so I decided to keep it between me and my family. It was only aged 24 that I started to become more open with close friends, luckily most of whom are in the nursing profession, so they approached it from a medical viewpoint, rather than being sad for me, which I appreciated. My boyfriend didn’t even flinch when I told him, and in fact he calls my ovaries, square-varies because they aren’t working how they should be. Humour I have found, really helps to deal with the condition.

In terms of my fertility options, I have been attending two clinics; one an endocrinologist who deals with making sure my hormone levels are that of a ‘normal’ woman of my age, which I have been going to since the diagnosis, and only this year, to the Centre for Life Fertility Clinic in Newcastle. Here they went through my most likely fertility option; IVF with egg donation. Although on my current medication there is a chance of spontaneous ovulation where I could get naturally pregnant, that would be an extremely rare and unlikely case. Luckily for me I have a sister who had her family young, and has told me without a doubt if she is suitable, she would want to donate her eggs to me. This means, although not my own, my child would still be part of me genetically. Whilst I still have doubts about whether I want to put my sister through the turmoil of being a donor, it is the most generous and wonderful offer. I was informed that the success rate of egg donation is high and if it is a known donor, like my sister, the turn around can be within months and that I would get three rounds of IVF on the NHS. Knowing that I have an actual plan of action for if and when I want to have a child, has really given me peace of mind and a more positive outlook, rather than previously when it was an unknown to face in the future.

I have known for ten years now that I will struggle to get pregnant and have come to terms with it, taking the steps already to investigate my options. I used to think I could never have a child, but I now know it isn’t so black and white.

For a long time I have been in denial about my fertility issues and have tried to ignore it and not face the facts. It is only now aged 26 when surrounded by friends who accidentally fall pregnant, or who decide to try for a baby and get pregnant straight away, that I actually realise the difficulties I will have ahead of me when it is time for me to want a child. A personal matter like having a baby is something that I will have to discuss and plan with many other peoples’ involvement. I will never get to surprise my family with an announcement that I am pregnant, and I might never get to have my own biological child. However I am in a much better mind set about my condition and I am on more suitable medication which will help my future fertility. I know that when the time comes if I am still in my current relationship he will undoubtedly support me, and I know that if I need to, my sister would be more than willing to donate her eggs to me the second I said I was ready. Living with this diagnosis for so long, I have had one advantage that many others don’t get, which is time. I have known for ten years now that I will struggle to get pregnant and have come to terms with it, taking the steps already to investigate my options. I used to think I could never have a child, but I now know it isn’t so black and white. Whether through egg donation or adoption, I don’t have to be childless if I don’t want to be. I no longer live being held back POI, I have accepted it is a part of my future and dealing with the ups and downs of it over the years, has shaped me into a much stronger person.

Written by Amy Bennie

Amy Bennie, 26. After studying journalism I then went into primary teaching. I currently run the social media account and write for The Daisy Network, a charity dedicated to offering support to women with Premature Ovarian Insufficiency. I am a hugely passionate in raising awareness of the condition which isn’t very well known, and talking about women’s health. I am a yoga obsessive, my favourite place is the beach which I am lucky enough to live right beside and I think everything can be made better with a cup of tea.

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