Raising awareness of surgical menopause

Summary

World Menopause Day is held every year on 18 October to raise awareness of the menopause and the support options available for improving health and wellbeing. In this blog, I want to raise awareness of surgical menopause, which affects over 4000 young women a year, specifically around the lack of information and support received before and after surgery.  

Content

The All Party Parliamentary Group (APPG) on Menopause published its final long-awaited report following a year-long inquiry into the menopause. The findings demonstrate that widespread action is needed to improve the situation for those going through the menopause.

The report makes for a sobering read; women are facing obstacles to good menopause care and are often left feeling frustrated and unheard, with severe symptoms that impact on their careers, home life and relationships.

This is particularly so for those women who undergo a hysterectomy or oophorectomy (a surgical procedure to remove one or both ovaries) which immediately sends a woman into surgical menopause. Unlike natural menopause, the onset of surgical menopause is often very sudden and abrupt. 

The British Menopause Society states that all women undergoing surgical menopause should have counselling and be provided with information about the hormonal consequences of surgery and the role of hormone replacement therapy (HRT), both before surgery and before leaving hospital, with clear communication to the primary care team. But many women, myself included, have said they received little or no information about the menopause before undergoing surgery.

I had breast cancer and during treatment found out I had the BRCA1 gene mutation which made me high risk for developing ovarian cancer. I was advised to have an oophorectomy. I was referred to a gynaecologist and whilst I received all the appropriate information about the surgery itself, the benefits and risk of having surgery, I received no information about the surgical menopause it would put me in after. When I asked about this, I was told that I would naturally be going through the menopause in a few years anyway and that I was ‘lucky’ as I would miss out the years of perimenopause that most women go through. I felt my concerns were dismissed, but having gone through cancer once I wanted to lower my risk of going through it again so decided to go ahead with the operation.

What I was not told, and didn't find out until after my surgery, was that women who enter premature menopause due to surgery (or chemically induced menopause due to treatments such as chemotherapy) tend to experience a severe and wide range of symptoms.

As one woman on a surgical menopause support group I belong to put it:

“A surgical menopause is like standing on the cliff edge and someone just pushing you off so you hit the ground below at full speed with a thud. There’s no parachute as in natural menopause to slow it down.”

Due to the sudden loss of ovarian function in surgical menopause, pre-menopausal women might experience more severe consequences, including increased rates of overall mortality, coronary heart disease, stroke, cognitive impairment, osteoporosis and sexual dysfunction because of the lower levels of oestrogen and testosterone. It’s quite different from natural menopause, which is gradual and leaves some residual hormones in the body.

Surely this is a patient safety issue if women are not being given all the information about surgical menopause? How can they make an informed decision on whether to have the surgery or not?

I was followed up a couple of months after my surgery with a call from my gynaecologist to discuss how I was recovering from the surgery, but still was given no information on where to get help with the menopause. I was told I probably couldn’t take HRT because of my cancer but if I wanted to discuss this further to see my GP. After doing my own research on surgical menopause and joining some support groups online, I realised I was not alone in this, and many women currently receive zero post-surgical aftercare from the NHS for the menopause.  

“Women often enter surgical menopause with an urgent surgery and no time to prepare. This leaves them scrambling for information once they are already in the throes of menopause. They don’t know who to turn to and are often passed from oncologist/consultant, to gynaecologist, to GP.”

There is a huge amount of misinformation and different opinions – even among medical professionals – that often lead to women being given incorrect information or no information at all. Oncologists will often advise against HRT for women, however they offer them no alternative or support.

“In the aftermath of my surgery I was numb. I had not been warned of the symptoms of the menopause I’d feel, only the surgery. I didn’t know where to turn to. My oncologist wasn’t interested as I’d finished my breast cancer treatment. I was referred back to my GP but they didn’t know what to recommend.”

Many women post-surgery end up in a crisis situation due to being so chronically hormone deficient. Some are left unable to work and unable to function, having experienced a severe deterioration in both physical and mental health. Their symptoms are not acknowledged by healthcare professionals and they are left with no aftercare or support. This is often on top of the physical and psychological toll of going through cancer treatment.

“My life changed. I felt suicidal. If I’d known this, I may have taken the risk of not having surgery as my quality of life has deteriorated.”

The APPG report has made a number of recommendations around access to HRT. However, there are currently no specific supporting NICE guidelines in place to help healthcare professionals manage and support women in surgical menopause and those who need closer management due to hormone sensitivities and when mainstream methods of HRT fail.

Whilst I’m encouraged that the APPG report highlights alternatives to HRT for those who choose not to take it or who are not recommended to, it acknowledges that the evidence on the effectiveness of CBT, complementary and holistic treatments or herbal therapies is unclear and often disputed within the menopause community. Alternative treatments are unable to treat a wide range of menopause symptoms in the way that HRT can.

GPs must be educated on social prescribing, and greater collaboration between the complementary therapies sector and GPs is needed to make them aware of the range of options they can offer women to treat and support them during menopause. 

Many women are forced to seek specialist private care in order to regain any form of quality of life, however ultimately this comes at a financial cost which not everyone can afford.

Although I welcome the APPG report, more needs to be done for women who find themselves going through surgical menopause, often at a younger age than natural menopause. Here's what I'd like to see available for all women:

• Information pre-surgery about the hormonal consequences of surgery.
• Information on the risks and benefits of surgery, so that the patient can make an informed decision.
• The option of counselling before or after surgery.
• Follow up after the surgery specifically on the menopausal symptoms patients may be facing.
• More information on the risk and benefits of HRT for women who have had cancer, and alternative options if the woman cannot take HRT.
• A key specialist contact post-surgery who has had the appropriate training and expertise to advise on the menopause.
• Access to a specialist menopause centre.