“As I get older, I often feel isolated. I am at an age now where my friends have begun to have children… I know that I will never get to have my own.”
Premature menopause, or premature ovarian insufficiency (POI), is a condition that is estimated to affect around 110,000 British women between the ages of 12 and 40.
Menopause usually occurs at the age of 51-52; however, sufferers of POI can begin experiencing menopausal symptoms in their teens. Just like menopause, POI means that a woman’s ovaries have stopped releasing eggs; the difference is that, for women experiencing POI, this has happened abnormally early. It also means that the ovaries no longer produce oestrogen and progesterone, both hormones that play vital roles in a woman’s health.
Unlike with typical menopause, a woman affected by POI may retain some level of ovarian function, which may increase and decrease over time. This can sometimes result in a period and even pregnancy. Some of the symptoms of POI include irregular or absent periods, hot flushes, poor sleep, weight gain, fatigue and breast tenderness.
“[The doctors] didn’t really know what to do with me at all. I was just dismissed; I felt pretty isolated. It was heartbreaking, I didn’t really understand it and at the time I thought I had done something wrong.”
Those were the words spoken by Amanda as she recounted the moment she was diagnosed with POI at the age of 13. But Amanda isn’t the only young woman to go through the POI diagnosis. And that’s why The Daisy Network’s work is so important.
The Daisy Network is a charity based in the United Kingdom, who offer information on the signs and symptoms of POI, as well as emotional support for sufferers. To get a better idea of what life is like with premature ovarian insufficiency, the IPF spoke to a young woman, Amy, about her diagnosis, treatment and symptoms of POI.
What symptoms did you have that led to your diagnosis, and was it difficult to get a diagnosis?
I didn’t have any of the physical symptoms that are associated with POI. The only symptom I had was that, at aged 15, I still hadn’t got my period, so my mum mentioned it to the doctor.
They took blood tests to check my hormone levels and found that my ovaries weren’t working.
I was told that I had got POI before I had even finished going through puberty.
Because I wasn’t producing eggs, it meant that I wouldn’t be able to have children and would need to take hormone tablets.
I had tests to try and find out the cause of why my ovaries stopped working but they never found a reason, putting it down to a possible autoimmune condition that must have attacked my ovaries at some point in my life without my knowing.
How does POI affect you and your life?
POI has affected my life in many different ways.
Learning that I will never have children altered my whole view of life and what I imagined my future to be.
In terms of my day-to-day life, the trial and error of different HRT [hormone replacement therapy] medications has caused anxiety and various side effects. I also have the worry of my future health as the condition can cause osteoporosis and increased risk of heart disease due to the lack of oestrogen.
As I get older, I often feel isolated. I am at an age now where my friends have begun to have children… I know that I will never get to have my own biological child and can often get down about my situation.
What kind of support have you received, whether from medical professionals or online?
I’m lucky that I live in a place where I was sent to a specialist for POI, so I have had good care in terms of monitoring my medication and routine scans.
However, I have also found that the specialists are straight to the point and focused on the numbers of hormone levels and data, rather than on how I actually feel on the tablets or how I cope with the infertility.
Through my own online research, The Daisy Network was the place where I found most of my information.
I thought I was the only twenty-something taking HRT like an old lady, until I joined the website and realised that it is a common treatment.
There were others facing the same issues I had, and it was a place where, if I had any queries, there were other women who could share advice and experiences.
Are there any changes you would like to see made in regards to the diagnosis or treatment process of POI?
I think if you get diagnosed with POI, you should automatically be given counselling and also a link to The Daisy Network.
At 16, it was a lot to be told that I couldn’t ever have children…without an explanation or cause…as to why my ovaries stopped working.
I felt a lot of the time that it was, “Take these hormone tablets and go on your way”, without the chance to ask questions and discuss which treatment I would prefer.
For example, I was originally given the contraceptive pill as my hormone replacement, which I was really happy with, but then I was changed onto HRT and wasn’t given the choice. So in terms of changes, I think more help with the emotional side of the diagnosis and also to be given more explanation and choice with the treatment.