What happens when a woman who has been happy, healthy and stable on HRT for decades is suddenly told her treatment needs to change? This is one daughter’s account of a decision made during lockdown that her mother still believes changed her life. It is also a reminder of just how important informed choice, individualised care and being prepared to question the “expert” can be.
One phone call changed everything.
It was 8.30 one morning, when we were still in lockdown, when the surgery’s “menopause specialist” called my mum to discuss her HRT prescription.
The doctor had never met my mum who was, at that time, in her mid-70s, glamorous and healthy.
Healthcare should not simply be about following a guideline.
Without any face-to-face consultation, she pressured her to change the HRT she had been taking for 30 years to something else.
The doctor said she had patients in their 90s who were still on HRT. My mum was resistant but she had been caught off guard and eventually gave in.
She regretted it immediately and spoke to her own doctor to try to get the decision overturned. He said she should try the new treatment and change back if it wasn’t right for her.
She tried it and immediately experienced what she believed to be withdrawal symptoms. She asked to be put back on her original Kliofem but was told that the guidelines had changed and this would not be possible.
My mother is convinced that the HRT she had been using for 30 years had helped to keep her body strong.
The “specialist” had reduced her HRT to a much lower dose of oestrogen and progesterone. My mum subsequently began bleeding and, because her cervix was closed, had to undergo an invasive procedure to check the lining of her womb.
She also began experiencing episodes of urinary urgency and bladder weakness. She went to a private consultant who told her that reducing her hormonal support so drastically had affected the receptors involved in her bladder function.
The lower urinary tract is sensitive to hormonal changes as well as neurological signals, which is one reason falling oestrogen levels can affect urinary and vaginal health.
Experts are not always infallible.
My mother is convinced that the HRT she had been using for 30 years had helped to keep her body strong. After the change, she deteriorated both physically and mentally and she holds this doctor responsible.
The doctor left the practice soon afterwards and set up as a private consultant. My mother felt as though she had been the victim of this doctor “clearing her desk”.
Given the choice, my mum says she would have accepted the risks associated with continuing her previous HRT rather than face being confined to her home by some of the symptoms she is now enduring.
We still need to ask questions, understand our options and advocate for ourselves
It is not unreasonable to expect that, after taking a medication for decades, any significant change should be carefully considered, discussed and managed around the individual.
It was bad enough to lose those precious years to the Covid pandemic but to feel that its effects had been extended by what she sees as poor medical care hurt all the more.
For me, her experience is a reminder that experts are not always infallible and that we still need to ask questions, understand our options and advocate for ourselves.
Because ultimately, healthcare should not simply be about following a guideline. It should be about finding what is best and safest for the individual and enabling us to live the best lives possible.
Flora, 57, Oxfordshire
Aphrodite’s Note
This is one woman’s experience and, as ever, HRT is not one-size-fits-all. Decisions about starting, changing or stopping treatment should take account of your symptoms, age, medical history, personal risk factors and, importantly, your own preferences.
Current NHS guidance says there is no fixed time limit for taking HRT. For women continuing HRT over the age of 60, the benefits and risks should be considered individually and treatment reviewed regularly. If HRT is stopped, the NHS says it can be stopped suddenly but it is usually recommended that the dose is reduced gradually over three to six months.
Menopause can also affect the bladder, urethra and vaginal tissues. Urinary urgency, recurrent UTIs and incontinence can form part of the genitourinary symptoms of menopause and there are treatments available.
If you are unhappy with advice you have received, ask questions. Ask why a change is being recommended, what the alternatives are, what the risks and benefits are for you and whether you can seek a second opinion.
For further reading:
- NHS – When to take HRT and how long to take it
- NHS – Benefits and risks of HRT
- NHS – Menopause and perimenopause treatment
- British Menopause Society / Women’s Health Concern – information on Genitourinary Syndrome of Menopause (GSM)
And remember: guidelines guide.
They shouldn’t replace a conversation.
