‘Specialists agree I need higher dose oestrogen, so why has it been such a fight?’

Wendy, 50, shares her struggle to get appropriate menopause treatment

Advisory: this article contains themes of mental health and suicide.

Newson Health’s new research on absorption, highlighting that some women need higher doses than others for adequate absorption through their skin, can be found here.

It’s taken me 17 years to learn how to manage my menopause symptoms. At 33, I began to feel exhausted, my body ached, I couldn’t think clearly, and I began to experience premenstrual syndrome (PMS). I went from being a hardworking, active woman, regularly travelling around the world as part of my job as a geologist to being completely debilitated.

I was diagnosed with chronic fatigue syndrome (CFS) but over the following year, I developed acne, blinding headaches, tinnitus, skin that was so itchy I would scratch it until it bled, palpitations, UTIs, allergies and my PMS escalated. My periods changed to a 21-day cycle and were so heavy I thought they resembled what the collapse of the Hoover Dam might look like.

My GP diagnosed perimenopause, and I was told if I wanted children, I’d need to get a move on. Fertility tests revealed I had premature ovarian insufficiency (POI) and through IVF, my husband and I successfully conceived our beautiful baby girl.

When I was 41, my headaches became worse and were accompanied by visual disturbances and vomiting. One time I abruptly became unwell with a migraine whilst on holiday in Wales – I threw up in a shop doorway and had to return to the campsite to be looked after by my four year old. By my mid-40s, I had a migraine for 16 days out of every month.

My mental health began to suffer. I’d been struggling with postnatal depression and PTSD after a traumatic birth and the depth of despair during PMS episodes was so uncontrollable it greatly impacted my ability to function.

RELATED: Postnatal depression, PMDD and menopause: Wendy’s hormone journey

RELATED: All about progesterone: PMS, PMDD, postnatal depression and menopause

During this time, I had retrained as a teacher, so life was stressful. I had also relocated so had attended a different doctor’s surgery – my GP never talked about perimenopause, instead I was given antidepressants. Eventually I was referred to a gynaecologist who suggested a drug to quieten down my ovaries – it left me so exhausted I wasn’t able to function, and the migraines became worse.

My blood pressure was high and I experienced my first major palpitation, whilst I was teaching. My colleague took me to the hospital where I had an ECG. Again, this was put down to stress.

After charting my migraines and discovering a cyclical pattern, I learned about the link with menopause and joined the dots. However, my GP didn’t agree as I wasn’t experiencing hot flushes.

RELATED: Migraines and menopause: what’s the connection?

In January 2020 I saw a locum GP who got it straight away. She prescribed HRT: 40mcg of Elleste Solo HRT patches and a progesterone tablet. It dramatically reduced my symptoms. However, this only lasted a couple of months, so my dose was increased to 80mcg of Elleste Solo patches.

During the summer of 2020 I was advised to stop HRT because I wasn’t experiencing hot flushes. After I stopped, I did experience hot flushes, so HRT was re-implemented.

I plodded on and between 2021 and 2022, my symptoms began to ramp up and I became extremely anxious. My career as a teacher, in a high pressure, high workload environment exacerbated the situation, but I felt like I was going insane. I thought I was having a breakdown and was signed off work for two weeks.

However, a week into the crisis, the acute anxiety and depression flicked off like a switch. I was suddenly normal again. It lasted for about three days, before the next cycle began. I had no doubt what I was experiencing was hormonal in nature. I asked my GP if I could be referred to a menopause specialist and asked about more HRT but was told that 80mcg was the highest possible dose and that I could not have vaginal HRT and transdermal HRT patches together. When they asked what I hoped to achieve by seeing a menopause specialist, I realised that I wasn’t going to get the support I needed so I turned to a private menopause clinic.

RELATED: HRT doses explained

The day I had my appointment at Newson Health in Easter 2021 was a moment of recognition and hope. I was clinging onto my life, career and sanity. After talking about my symptoms, I was prescribed 100mcg Estradot, testosterone and vaginal oestrogen (I already had the Mirena coil for my progesterone).

Within two weeks, I felt so much better, almost superhuman. I bounced back like Zebedee and was myself again for the first time in a decade. But it didn’t last. After a couple of weeks, the migraines and low mood began to re-emerge. I contacted the specialist who went through my symptoms and recommended increasing the HRT dose. I gradually reached a dose of 150mcg and remained well for several months. I went on holiday without struggling with symptoms and I climbed a mountain for the first time in ten years.

I began the new school year with vigour but in October 2021, I had a mental health crisis that resulted in more time off work. This time, however, I had immediate access to my Newson Health specialist who was brilliant. She recommended lowering my HRT dose over several months to ensure the mental health symptoms I was experiencing were not due to having too much oestrogen.

My GP recommended I take an antidepressant. It was horrific – I was anxious, jittery, and couldn’t sleep. I decided to stop when I started hallucinating.

RELATED: Am I depressed or menopausal?

My symptoms appeared to be uncontrolled, and I felt like I couldn’t do my job. I was concerned that if I didn’t take action to reduce the distress I was experiencing, I may have taken my life, so I resigned from my teaching role.

After investigating my HRT dose and testing absorption, it was decided that I needed more oestrogen, and my dosage was slowly increased. I began to get closer to myself again.

For the remainder of 2022, my medication was periodically optimised by Newson Health and I got better and returned to teaching part-time and an active lifestyle.

In 2023 the financial pressures of private care and the introduction of the HRT prescription prepayment certificate (a one-off prescription fee giving annual access to HRT at a reduced cost on the NHS in England), led me to transition my treatment back to the NHS. My GP expressed concerns about my HRT dose – I was on 350mcg oestradiol patches – and ordered an oestradiol blood test. The test showed that my levels were in the normal range so although I was on a higher dose, I still wasn’t absorbing it all.

My doctor’s surgery said it was seeking guidance on my dose as it was above the licensed levels. My prescription was reduced without consultation – I only discovered the change when I picked up my prescription in May 2024.

I raised concerns about the potential impact of this reduction on my mental health, including the risk of suicidal ideation, and was referred to the gynaecology team. They advised against the drastic reduction in my dose, initiated further tests, including a womb scan and DEXA bone density scan, and confirmed that I was a poor absorber of transdermal HRT. They recommended continuing the 350mcg dose.

However, my surgery refused to prescribe it, citing concerns that this would place their clinicians outside of NICE guidance, which could invalidate their medical insurance. This was frustrating as

NICE guidelines acknowledge that some women with POI may require high doses of HRT for symptom relief. Both private and NHS specialists had recommended a course of treatment that works for my individual circumstances, yet I was having to fight to receive it.

The financial burden of private treatment, combined with the loss of earnings due to sick leave and reduced hours, has left me in significant debt totalling tens of thousands of pounds.

Thankfully, I’ve now been referred to secondary care in the NHS and they are prescribing the agreed dose of oestrogen. I believe 350mcg is the optimum dose for me. I might still have the odd fluctuation of hormone levels, but I can recognise the signs when I need extra oestrogen, which I can apply through my pump pack. These fluctuations are becoming less frequent as I get older and I know I can call my specialist so I’m not alone anymore.

I am living again – I’m achieving things outside of my career that I could only have dreamed of, I’m a much more energetic and engaged mum, and am trying to make as much noise as I can about the impact of menopause.

Contact the Samaritans for 24-hour, confidential support by calling 116 123 or email jo@samaritans.org.

RELATED: What is the right dose of HRT for you? Hormones and premature ovarian insufficiency

Resources

Newson Health: HRT is not a “one size fits all” treatment

Glynne S., Reisel D., Kamal A., Neville A., McColl L., Lewis R., Newson L. (2024), ‘The range and variation in serum estradiol concentration in perimenopausal and postmenopausal women treated with transdermal estradiol in a real-world setting: a cross-sectional study’, Menopause. DOI: 10.1097/GME.0000000000002459