BlossThe menopauseReal life stories

I wanted to share my story with you on being diagnosed with premature menopause when I was just fifteen years old while growing up in Milan, Italy.

As a child I loved going to school and playing with friends, but from the age of five, my passion had always been singing. I was a child chorister in the leading Italian children’s choir “I Piccoli Cantori di Milano” which meant that I spent most of my weekends performing on stage or recording in the studio. After what was diagnosed as a “bad flu” that left me hospitalised for a week at the age of ten, I began to experience lots of different symptoms.

Undiagnosed symptoms

I began to notice nodules to my vocal chords. My voice range started to shrink and my voice thinned a lot. I went to see an ENT specialist who suggested this can sometimes happen to singers straining their voices, so I followed all the prescribed exercises including obviously resting my voice.

However, my singing voice didn’t return. Little did I know that my silence would continue for seven years! You can imagine my frustration, giving up the one passion during the peak of my singing highlight – I was performing many solos and was a leading member of the sopranos.

In the meantime, I started suffering from migraines, anxiety, insomnia and heart palpitations. For all these symptoms, I visited numerous specialist doctors who never found anything wrong with my health.

Since I couldn’t sing any longer, I decided to focus on sports. However, I kept getting injured. I was constantly on crutches and it became too much when once I dislocated my ankle by ‘jumping for joy’ after passing a test. I kept being told by orthopaedic doctors that this was due to growing pains and indeed I was growing very tall. 

By the time I was twelve years old, I was taller than any other girl in my class. Strangely, despite having some pubic and armpit hair, my breasts hadn’t started developing yet, nor had my period come. When raising this concern with my GP he  said it was ‘lovely’ that I was a late developer and to be ‘patient’.

Finding treatment

When I was fifteen and a half years old,  my voice still hadn’t recovered, my frustration was growing with my underdeveloped body and my sports injuries, and my period still hadn’t arrived. That’s when my GP referred me to a paediatric endocrinology clinic in Milan. I had always known there was something wrong with my body but no doctors had listened to me.

There I was treated like a guinea pig. Apparently what I was experiencing was not very common, and they ruled out any known genetic causes or any autoimmune disease. They discovered through X rays that my wrist looked like that of a twelve-year-old despite me being almost sixteen. 

While I was on holiday with my family, my mum received a call and doctors told her my ovaries didn’t work due to an unknown rare reason and that I wouldn’t have been able to have natural children in the future. They said I could lead a normal life through medication.

What happened after this was that they slowly replaced my missing hormones, on very low dosages to start with and after about a year, they put me on the birth control contraceptive pill, ‘like everybody else’. This induced my first withdrawal bleed – as if I was having a period – at the age of eighteen.

I was told I would have to be on ‘the pill’ for the rest of my life and I was not warned of any of the health risks that could be caused by my condition, other than osteoporosis, which is something I’d need calcium and vitamin D for and regular bone density scans.

Unfortunately, now I know that together with bone protection, hormones also protect my heart and my brain and it is paramount that I do not stop taking my medication to protect my organs. I was also never told about any symptoms to watch out for, or side effects of the pill.

Most significantly, I was never given a name for my diagnosis. I was told a long convoluted name explaining the absence of a period, which, if Googled, didn’t bring any relatable result!

Receiving a diagnosis

What I now know is that if ovaries do not work, this means that three hormones that they would normally produce need to be replaced: oestrogen, progesterone and testosterone. The best way to do so is through body identical hormones rather than synthetic ones.

Unfortunately in Italy, due to my young age at the time, I couldn’t be prescribed body identical hormones (HRT), so they prescribed me the contraceptive pill (synthetic) for my oestrogen and progesterone. However, they prescribed me a type to take cyclically, so left me for one week of the month completely without any hormones.

I reported particularly low mood and suicidal thoughts during that week to various endocrinologists but their solution was to give me a very small hormonal top up, something you would prescribe to a sixty year old woman with a few oestrogen receptors.

The reality was that I had and still have so many oestrogen receptors due to my young age and I would have needed much higher doses! They also never talked to me about testosterone.

For about ten years I have lived almost completely without it. The adrenal glands do produce some but ovaries normally produce four times more testosterone than oestrogen! And testosterone is a key hormone for energy levels, muscle mass, brain function and libido.

For almost ten years I thought that my illness was extremely rare and no one knew anything about it. When, at the age of eighteen, I moved to London, I asked my new GP to refer me to someone who may be able to look after me.

After years of referrals around London, I was finally referred to a gynaecologist clinic that I now know specialise in menopause and primary ovarian insufficiency (POI).  Even there, despite their specialisation, they did not tell me that what I have is actually premature menopause. 

Dealing with the symptoms – primary ovarian insufficiency

Throughout my late teens and early to mid twenties I have experienced all sorts of menopausal symptoms and have been to my GP and specialist doctors including endocrinologists, who should be familiar with hormones, to help on so many occasions.

Symptoms included: anxiety, mood swings, depression, acne, joint pain, broken bones, stomach ache and more. Now looking back, I also had very little muscle mass despite all the exercise I did and my hair was so thin and weak.

At the time, I worked part-time as a fashion model while studying and the excruciating pain when wearing heels was due to something I thought was ‘just how I was’. And this is also how I felt about my fine hair, joint pain and, most importantly, my anxiety and mood swings. Because I’d never been a healthy adult before my diagnosis, I assumed this was my normality. 

Two years ago, when I was twenty-four, my health worsened and joint pain increased and I started having some new symptoms including bladder problems, low libido and vaginal dryness. Given the link with reproductive organs, I thought this may be somehow connected to my ovaries not functioning.

Luckily, checking through each record at the age of twenty-five, I found a letter from the clinic that I now know is also menopause focussed ‘POI’ as my diagnosis. POI means premature ovarian insufficiency and it the same as premature menopause or the beginning of it, when the ovaries stop functioning. In my case, they have never worked.

1 in 100 women suffer from POI/premature menopause before the age of 40. 1 in 1,000 before 30 and 1 in 10,000 before 20. 1 in 100,000 before puberty. This last statistic is me. 

Coping with early menopause

While researching my condition ten years after my original diagnosis, I found the Daisy Network, a charity supporting women with POI, who offer information and support to women with POI and premature menopause.

I joined their support groups and learnt what to ask my doctor, who promptly changed my synthetic pill to body identical HRT and testosterone as soon as I asked for it. I was lucky to be in a clinic that understood the menopause.

In order to get my dosage right, it took a long time, as there is still a lot of misinformation around the risks and benefits of HRT, especially for younger women who need much higher doses to have symptom relief as well as protection for their bones, heart and brain against premature damage.

I have had to educate myself on everything POI and menopause-related to manage my own condition while living a healthy and – hopefully – long life. I run my own business called CocoRio and had I not had my hormones back in full, I would never be able to have such a busy, fulfilling life.

I am also starting to re-train my voice now, and I am so frustrated that for such a long time I was not given the correct hormones, especially as a teenager and young adult, meaning that my body has not been nourished properly and is now responding to the replaced hormones by continuing to develop as it should have done a decade ago.

Today at the age of twenty-six, and with the awareness I now have, I find it really incredible how I never linked my symptoms or original diagnosis to the menopause, a natural phenomenon that happens to all women, so 51% of the population at some point.

And how is it possible that doctors were as unaware as I was? Dr Louise Newson, founder of Balance App and Newson Health Clinic, a menopause clinic, is a champion in raising awareness around the lack of GP and medical training around female hormones, the menopause and peri-menopause and in making changes to achieve more educated doctors.

How is it possible that there is still so much shame around women’s bodies and that people don’t talk enough about the real problems that hormonal issues cause? And that at the same time, it takes on average eight doctor’s appointments to diagnose the menopause? 

Getting the help you need for the menopause

Now, I am struggling to get the medication I need because so many more women are starting HRT and pharmaceutical companies cannot keep up, so there are shortages in the UK. This is a wonderful sign of more and more women knowing the benefits of having their missing hormones replaced, but this needs to become a priority, as the menopause is a social issue.

When women are feeling better, they can do their jobs better, be better friends and family members, as well as, of course, feeling themselves! It is no coincidence that the highest population of people who commit suicide are women between 45-54 years old, the average age of peri-menopause and menopause.  

One-third of women say that they consider leaving their jobs because of the menopause and there is a lot of data showing concerning stats around women who may finally have reached senior positions after perhaps raising a family, now needing to drop out of work because of their symptoms.

And yet hardly any workplaces have menopause awareness programs or training. I believe that this menopause revolution can and should start in the workplace and then positively impact all parts of society.

I am now a volunteer for the Daisy Network myself and a passionate advocate for premature menopause and the menopause, organising support groups, fundraising events and coaching people one-to-one and in groups, as well as leading menopause awareness workshops for organisations with boss.

You can explore details of my workshop, Menopause in the Workplace, here on my bloss profile, but feel free to contact me for further information about my workshops, or anything you have read here in this article.