Women plunged into surgical menopause are being failed by our NHS, results from Menopause Support survey shows

No ovaries. No care. Women who have been plunged into surgical menopause are not receiving the fundamental care they need for their short and long-term health; that’s what the results from our new survey would suggest.

 “Betrayed”, “abandoned”, “struggling” and “alone”.

This is the experience reported by hundreds of women living across the UK who have been plunged into premature menopause, after having their ovaries removed, with women describing a significant and serious lack of care and support post-surgery.

The findings are from our survey conducted in August and September 2024, with 521 women sharing their experiences.

The survey results show that many of the women stated they did not receive the care or support they needed after having their ovaries removed. This is despite the fact that premature menopause has been associated with poorer short and long-term health outcomes, including an increased risk of depression, dementia, heart disease and osteoporosis.

The results from the online survey of 521 UK based women, aged 20-59, revealed that a staggering 74.5% of respondents were not made aware, by health care professionals, of the potential side-effects of having both their ovaries removed, including not being told that they would be plunged into premature menopause.

As well as not being made aware of the possible consequences of their surgery, women reported that they were also not informed about the recommended treatment – Hormone Replacement Therapy (HRT).

HRT is the first line treatment for menopause symptoms with NICE Guidelines recommending that people who have gone through premature menopause are offered HRT until the age of 50-51 – the time most go through menopause spontaneously – unless it is contraindicated.

Shockingly, the Menopause Support survey found that 62% of those who were eligible for HRT said it was not discussed with them prior to having their surgery and only 36% were prescribed HRT immediately after surgery.

Survey organiser and founder of Menopause Support, and the Make Menopause Matter campaign, Diane Danzebrink, says; “It is clear from the survey results that an urgent review of surgical menopause care is needed across the NHS, to ensure that all clinicians are aware of how they need to prepare their patients for surgical menopause, with all essential health information provided upfront, and that there is a plan in place, prior to surgery, for follow up care.”

The results of the survey prompted Diane to search for clinical guidance for surgical menopause via the Royal College of Obstetricians and Gynaecologists website. When she couldn’t find it, she contacted the college but was told that guidance doesn’t exist. Diane made a request for this guidance to be created but was told that the college does not feel that this is needed, as resources from alternative sources exist. Diane has requested that this decision be reconsidered.

Diane adds; “I find it difficult to comprehend how an organisation who state that they ‘push for a commitment to excellence in all O&G practices’ cannot have clinical guidance for the healthcare professionals that they represent, some of whom will be responsible for removing women’s ovaries.”

Diane launched Menopause Support following her own experience of surgical menopause, which resulted in her suffering psychological symptoms, and coming very close to taking her own life. For the past decade, she has been determined to use her own experience to make a positive change, and campaigns for mandatory menopause education for doctors. 

Diane says, “It’s shocking, but sadly not surprising, that women who have been plunged into  menopause, due to surgery, are not receiving the appropriate level of after care and support they need and deserve. Having worked to support those experiencing menopause for a decade now, it has become all too common to hear from those who have been failed, following surgery to remove their ovaries, putting them into surgical menopause.”

Other results from the survey showed that:

·       After surgery, 39.7% of women said they had no follow up appointment at all.

·       Just 36.5% were advised to see their GP following discharge from hospital to get further advice, support, and treatment.

·       When asked if they thought their GP was ‘knowledgeable enough about surgical menopause to provide appropriate care and support’ a staggering 83.5% answered ‘no.’

·       Only 23% of women who had undergone surgery to remove their ovaries were referred on to an NHS menopause specialist clinic.

The consequence of this failure of care is that many women (42%) said they had not received the help they needed from the NHS and many reported having waited many months, or sometimes years to access the help and treatment they need. Over a quarter, 26.3%, said it took between one and five years to be seen by a menopause specialist post-surgery.

One survey respondent said, “I am still waiting for an appointment in my NHS menopause clinic after being referred urgently in December 2022. I was just 40 when I had my total abdominal hysterectomy with bilateral salpingo-oophorectomy (TAHBSO) and feel like I’ve been abandoned by the NHS. My symptoms are debilitating and really affecting my quality of life.”

Due to a woeful lack of follow-up care, just over half of the respondents (52.8%) said they felt they had no choice but to seek support via a private clinic, incurring considerable personal cost. Almost 28% spent more than £1000 on private care, 3.3% spent more than £5000 and thirteen said they had faced a staggering bill of more than £10,000, costs that are simply out of reach for many.

Another survey respondent said: “I cannot afford specialist help so I have to continue as I am. I am now 37 and had surgery at 33. I struggle more now than before. So many symptoms were not explained to me that I am only just finding out are menopause related.”

And the impact? Women left feeling isolated and distressed about their long-term health.

“I have never felt so lonely and scared as I have through this process, and I am in my 40s,” one wrote. “I feel completely betrayed. … There’s no NHS menopause specialist clinic where I live. I’ve been left to get on with it and am now at risk of long-term problems,” added another.

Faced with a lack of information and follow up care, women are instead turning to social media for support with 60% saying they go to online groups and social media for the support they need.

Diane Danzebrinkwho continues to campaign for better menopause support for all, says: “It is an absolute disgrace that in the UK in 2024 women are undergoing significant, potentially life changing, surgery, without the right information, care and support. Nobody should feel that they have no choice but to turn to social media, or to pay for private care, to get the help and support they need and deserve.” 

“Urgent action is needed, to ensure that all health care professionals are counselling patients fully, prior to surgery, and providing them with appropriate, ongoing care and support.”