Premature Ovarian Insufficiency (POI): What it's like to experience menopause age 16
Menopause can happen at any age!
Jenny Grace, now aged 33, discovered she was one of the unfortunate 1 in 10,000 young women to be diagnosed with Premature Ovarian Insufficiency (POI) aged 16.
Jenny had no hesitation in sharing her experience with us in the hope that women understand that menopause doesn’t discriminate against age - you can never be too young!
Jenny’s Story
Being told at 16 that you will never have children is quite a surreal experience. I know I was in my doctor’s surgery when I was told but I have no recollection of that moment, and I had no idea of the impact my diagnosis would have on all aspects of my life.
‘Primary ovarian insufficiency’, ‘premature ovarian failure’, and ‘early menopause’; there are a variety of names for this relatively unknown condition. In recent years it is most commonly referred to as primary ovarian insufficiency or POI.
Using the word ‘failure’ in a condition was thought to add to the distress of women and it was also felt that it didn’t capture the condition properly, as some women (approx. 5%) do end up becoming pregnant naturally, so the term insufficiency is preferred.
POI affects:
1 in 1,000 women under 30
1 in 100 women under 40
1 in 10,000 women under 20
POI is defined as the loss of ovarian function before the age of 40. Women diagnosed with this condition experience infertility in addition to all the other symptoms associated with natural menopause: hot flushes, night sweats, anxiety, depression, fatigue, brain fog, low libido, insomnia, vaginal dryness, and osteoporosis.
There are also the psychological aspects of losing your fertility before your time and the identity issues that can arise from feeling you have lost the vitality and rites of passage that come with being a woman in her younger years.
Research on POI is limited and there is an absence of long-term outcome studies. However, it is thought that having reduced oestrogen from a young age poses an increased risk of cognitive decline and heart disease.
Many women with POI find out they will not be able to have children naturally before they have even considered having children.
Formally diagnosed at 16, I had only ever had one period at 13. Having a sister 16 years older than me and seeing her with her family, I always knew that was what I wanted. Being told that would not happen for me was something I could not even begin to process at that age. I did not have the resources or maturity to deal with what I had been told.
Between the ages of 13 and 16 I experienced hot flushes, insomnia, depression and anxiety and found it difficult to keep up with girls my own age.
When I was diagnosed I was advised that I would be put on the oral contraceptive pill to replace the oestrogen my body wasn’t making in the hope that the oestrogen might kickstart my body into having periods naturally. For me, unfortunately this never happened and going forward I will have to use donor egg IVF if I want to conceive.
After receiving the diagnosis I think I said ‘ok’ and left the surgery, prescription in hand. While I didn’t understand how the diagnosis would play out in my life at that time, I did have a strong sense of losing all autonomy over myself. I felt powerless and lost. There was an irony to taking the contraceptive pill to mimic a natural period, and I felt like the only person in the world using the contraceptive pill for a reason that most other women were not.
The oral contraceptive pill did however give me the boost I needed. I grew taller, I had more energy, I was more engaged in life. I slept.
However, I didn’t know it then, but I was suspended in limbo suffering from the blow of getting this diagnosis yet having no resources or information to manage it. I never spoke a word to anyone about it.
The first time I told a friend was when I was 23. Looking back on it now I feel if I had spoken about it during my teens I wouldn’t have gotten anywhere. There was so little information out there about it, even doctors seemed unsure and this led to a sense of stigma around having the diagnosis.
I felt shameful that my body didn’t work properly, that I was different to other girls and didn’t belong. While my symptoms had improved, I never had a lot of energy, spending most of my teenage years in a bit of a daze. I blocked out the condition, only reminded I had it when the contraceptive pill gave me what was coined a “fake” period once a month, or I suffered a hot flush or a restless night’s sleep, or when I made an excuse to leave if friends were talking about their periods.
While I am a firm believer that women are not defined solely by their fertility, there is something undeniably female about being able to have children. It’s our biological superpower. If it wasn’t built into our very fabric, we wouldn’t mourn its loss in the event of not being able to have children.
Research highlights that 90% of people with infertility experience depression, with 42% feeling suicidal.
Those are overwhelming statistics that show the impact of not being able to have children naturally. While there are so many aspects to my life that don’t involve fertility, there is something inherently at odds with your identity when it turns out your ability to have children is taken away.
There is a dual aspect to POI. Due to physiological mechanisms, lower levels of oestrogen can lead to anxiety and depression.
Dealing with the effects of POI on your life and struggling with infertility can also cause anxiety and depression, so you’re dealing with a double load. I’ve often felt like the condition was at odds with my personality, but yet it was hard to distinguish myself from it. Where did it end and where did I begin?
Identity issues are a significant part of POI.
You are a teen or a woman during your reproductive years, yet you experience symptoms that women going through natural menopause experience.
You can’t relate to women your own age when they talk about getting periods or having babies, yet it’s very hard to strike up a conversation about your hot flushes and vaginal dryness with women going through menopause.
To look at you no one would think that you experience those symptoms. Many times I have longed to jump in on a conversation about hot flushes with colleagues, to have someone to relate to, but didn’t want to open myself so vulnerably or burden anyone with my condition in the middle of the workday.
The fact that it can be hard to talk to people about it perpetuates the shame that having POI makes you flawed. The taboo surrounding infertility and menopause also stops you from seeking help, and this can be detrimental to your ability to live your daily life.
I generally ignored the fact that I had POI until my late 20’s when it was harder to ignore. I was in a long-term relationship and thinking about the future ahead, in terms of my fertility. I was also finding it harder to maintain my lifestyle as I had started a high-pressured job and it was causing my hot flushes, insomnia and anxiety increase. I also found I couldn’t burn the candle at both ends and socialising at the weekends became incredibly draining.
I withdrew from my friends and family and after a few years I left my job as I had come to a place where I could no longer function properly.
Lack of sleep meant I couldn’t get up easily in the morning. Brain fog meant I couldn’t focus on my work. My anxiety increased so much that I began to stammer, I found it difficult to even project my voice to speak to people.
I had lost all confidence in myself, in my ability to simply function. Even something as simple as walking up a hill would cause a hot flush and dizzy spell. I became quite socially anxious and felt that quitting my job because of my condition meant I was a failure in some way.
I was embarrassed to say I was taking a break from my career, because I couldn’t tell anyone that I had POI. I couldn’t talk to my friends about how POI was affecting me. It changed the way I lived my life and it was hard to communicate that because of the shame and grief I was feeling.
I have many fears for the future. How I will have children is one very big concern.
I do grieve the loss of my genetics. Will donor egg IVF work for me? How will I afford it? What about the impact on a future partner?
The impact of POI on my professional life has meant that I had to take a lower-paying job with less stress to strike more of a work/life balance. This is hard as there are many things I would like to pursue but the fear of facing burnout again makes me feel restricted in terms of potential careers.
I often think about the long-term implications for my cognitive health; will I develop dementia? Will I be one of the women affected by the increased risk of heart disease?
I am constantly wondering what path to choose; the path I want or the path that might keep my symptoms at bay. I am constantly thinking about how will things work out for me.
While it’s worthwhile sharing one’s experience, equally it is important to highlight that women with POI require specialised & monitored care.
Correct dosages of HRT are needed to manage symptoms and provide protective benefits for our brain, heart, and bones. Referrals to mental health professionals should be a core part of the care pathway for women with POI.
A network to share our experiences and support one another through this diagnosis is incredibly important as isolation is a key aspect of POI.
Nearly every woman I’ve spoken to with POI has not met another woman with it. We need funding for more research into this area, both the long-term psychological and health outcomes.
Despite published guidelines on the management of POI, there is still a lack of standardised care.
I found it very difficult to get information about POI, I felt I had nowhere to turn. Culture plays a huge role in creating barriers to care. I have spoken to one young woman living in a culture that will not take her oestrogen levels because she is not married. She is now going without the oestrogen she needs, which ultimately comes down to a human rights issue.
There needs to be a joined-up collaborative approach among clinicians, mental health professionals, and women with POI in order to create a standardised holistic care pathway accessible to all women so we can live a full life to the best of our potential, aware of all that POI entails.
Jenny Grace
October 2020
Follow Jenny on Instagram @the_poi_guide
Jenny has her own POI support group - DM her on Instagram to join.
Daisy Network is a charity that supports women with POI
