My story: Why can’t anyone help me?

Monica has lived in Perth, Australia, for 27 years and loved her job as a clinical nurse specialist in Emergency and Intensive Care departments. In her mid-40s she experienced most of the classic signs she was starting perimenopause and she realised what was happening to her. Little did she know this marked the start of an ongoing battle to get the right diagnosis and treatment in order to feel better and carry on living a normal life. It has been six years and counting and she’s not quite there yet.

“It didn’t take me long to realise I was entering perimenopause. As well as my periods going haywire, I started getting terrible fatigue, and hot flushes. I hadn’t realised this was probably also why I was getting more tearful in the run up to my periods, my memory was getting worse, and I started to worry I was going completely mad. Having recently split up with my husband, I was getting used to being a single mum and I put these symptoms down to life changes, stress and having a busy job.

“I went to see my GP, who decided the medication I had taken for 28 years for anxiety – which had always been well controlled – was now not working and he switched me, overnight, to a different tablet. Of course this didn’t suit me, and within a few weeks I became so unwell with anxiety I could barely leave the house. I was off work for 8 weeks while the doctors tried to tweak the medication further. In the meantime, I was now having horrendous sweats, worsening anxiety, and sore joints which was all put down to ‘depression’ (which I have never had) and my stressful job (which I hadn’t been able to do!).

“I eventually saw a wonderful psychiatrist who told me very simply that it’s all down to the menopause and I needed HRT. Wouldn’t it be lovely if that was the end of my story?”

“Unfortunately, my GP disagreed with the psychiatrist’s opinion and refused to prescribe HRT for me. I did eventually manage to see a female doctor in the practice who was willing to start me on a very small dose of an estrogen tablet and gave me the Mirena coil. And then followed months and even years of more and more symptoms, and ongoing barriers to getting the help I so desperately needed.

“After a hospital admission because of heavy vaginal bleeding, I thought I would finally get somewhere. I was transferred to what I thought was a women’s hospital, only to discover when I got there that I had been moved to a psychiatric hospital. This terrified me, I saw so many women my age in there, and I couldn’t help but wonder, ‘how many of them were there primarily because of their hormones changing?’ I had all my meds stopped, and was diagnosed with bipolar disorder. I was desperately trying to do my own research and eventually left the ward after three days when I refused to go on yet more antipsychotic medication for my (non-existent) psychiatric condition.

“As the years passed, I read so much about the menopause and HRT, and I was regularly in contact with menopause experts from the UK who were so kind and supportive to me, but couldn’t offer me any HRT because I lived in Australia. And COVID meant I couldn’t travel to the UK to be seen as a patient there. I was desperate. Any time I went back to my GP with another symptom, I kept getting referred to cardiologists, endocrinologists and so-called menopause specialists that just wanted to give me unregulated, compounded HRT and I collected quite an array of other ‘diagnoses’. I hadn’t been able to work for years now due to crushing fatigue and uncontrolled anxiety.

“I spent thousands of dollars trying to see the next specialist I always hoped would solve it once and for all.”

“I quoted the UK’s NICE guidelines, only to be told they follow Australia’s guidelines which don’t say the same thing! I knew I needed a higher dose and/or a different type of estrogen to feel better, but all I was told was “nobody ever needs that much HRT”.

“In the end I have managed to get hold of prescriptions for estrogen gel and testosterone, and I am learning how to manage my symptoms as best as I can. My physical symptoms have mostly improved, my skin and hair are better, and I’ve lost weight and enjoy socialising and exercising again. But I am still getting sudden bouts of extreme fatigue which have happened when I’m driving so unfortunately, they won’t let me drive again until I have been cleared by a neurologist, who can’t see me for another 3 months! This means I still can’t work. The financial toll has been huge, and I lost my house recently. The anxiety still rears its head for about 1 week in 4, and I worry that I won’t ever get completely better. The psychological impact is definitely the worst part, along with the effect this has had on my grown-up children, who just want to see a return of their old mum. My life has been on hold, and I have lost all my independence. My saving grace is my new partner who is so supportive and encouraging and has tried to learn and understand about the menopause as best he can.

Images showing the difference in Monica’s good and bad days

“My aim now is for my HRT treatment to further help my fatigue and manage the anxiety, so I can drive and get back to work. This will help me feel myself again and give my confidence a much-needed boost.

“When I do get back to work, I am going to be so much more understanding towards the female patients I see who have anxiety, depression, or come in with any other symptoms that could be down to their hormones, and I’m going to remind and encourage all my colleagues not to neglect this important aspect of a woman’s health.”

“I did come across one or two fantastic healthcare professionals that understood the impact the menopause could have but their voice was always shot down by louder voices and this is why so much more needs to be done in Australia to raise awareness and train doctors and nurses. I have seen pamphlets in hospital rooms and GP practices on every subject under the sun – but never one on the menopause. This has got to change.”

Dr Louise Newson’s online menopause education programme, ‘Confidence in the Menopause’ is free for all healthcare professionals across the globe and can be accessed via www.fourteenfish.com/menopause

Would you like to share your experience of perimenopause or menopause? Write to us at shareyourstory@balance-app.com