Improve care for women in surgical menopause

Women in surgical menopause require a standardised and updated protocols across the board to improve their quality of life.

Natural menopause marks the end of a woman's reproductive life. It's a gradual process over time but for many women, menopause happens overnight following the removal (or damage) of their ovaries for a variety of reasons (cysts/tumours, cancer prevention, ovarian torsion, severe endometriosis, etc.). These women face the additional challenges of surgical menopause. The wide array of menopause symptoms affecting joint, muscle, mood, skin, sleep, hair, digestion, vagina, memory, libido, etc. are often more severe and long lasting, especially for women under 45. Hormonal deficiency also comes with widely documented long term health risks for this population of women: osteoporosis, cardiovascular diseases, dementia/parkinsonism, etc.

Thanks to recurrent efforts of women’s health advocates, we witnessed over the last few years an increased visibility of menopause in the public sphere that created more awareness and broke outdated taboos. In 2022, widespread knowledge on menopause is still necessary in the general population and the medical profession to improve women’s health. Although things are becoming more public, we still have a long way to go. Surgical menopause benefits from this movement but also needs awareness of its own specificities.

Currently, the lack of awareness of the implications of surgical menopause puts the burden of education on the women themselves, and they are often unaware of this until after the fact. They then have to research and advocate to improve their best health outcomes. Outdated knowledge around treatment, lack of communication between medical providers, misconception about the risks of hormone deficiency on health and absence of follow-up care are not uncommon. All of which can be improved with standardised and updated knowledge on surgical menopause.

Recovering from a major surgery in itself is challenging, but dealing with acute menopause symptoms misunderstood by many healthcare professionals aggravates the experience, puts women’s health at higher risks and can seriously impair their quality of life and their capacity to fully take part in society.

To ensure best health outcomes, we need to work on:

  • Full disclosure of surgical menopause’s implications so patients can make an informed decision before undergoing surgery and during their recovery
  • Training of more menopause specialists
  • Introduction of standardised protocols and widespread awareness throughout the healthcare system where all healthcare providers, particularly GPs and gynaecologists, can clearly differentiate between the care for natural menopause and surgical menopause. These would include individual care plans (best practice informed with focus on maintaining quality of life and prevention of future illnesses):
    • Regular long-term monitoring and support (better communication between different providers)
    • Holistic approach (automatic referrals to menopause specialist, pelvic floor physiotherapist, nutritionist, counsellors, etc.).
  • Increase the access to broader treatment options (expand funding for hormone replacement therapy like Estrogel, Sandrena, AndroFeme) and fund more research

Why the contribution is important

Women cannot give informed consent to surgery without knowing the full range of consequences it may have on their quality of life and the ongoing care it will require. Unfortunately, many women are not receiving full disclosure beforehand on what to expect, in part because the surgeons themselves don't engage in follow-up and/or have no awareness of the daily impact surgical menopause has on the quality of life of their patients. We need to right that wrong and provide women with adequate information beforehand.

The younger population of women, plunged in surgical menopause before the age of 45, are at greater risk of severe long lasting symptoms and health problems. In their prime years professionally, they suddenly have to deal with severe symptoms that may greatly limit their capacity to resume their pre-surgery activities. Surgical menopause also comes with a financial burden (reduce incomes and increased costs due to limited funded treatments).

Many women are left to scramble with their GPs on how to better care for themselves and unfortunately their GPs also have variable/limited knowledge of the implications of surgical menopause.

We can remediate this situation by introducing mandatory training on surgical menopause and widespread documentation to support patients and healthcare providers. Women in surgical menopause require standardised and updated protocols across the board to improve their quality of life.

A better care for women means better recovery outcomes and less physical, emotional and financial struggles for them and their whānau. There are solutions for many menopause symptoms and disease prevention; however, healthcare professionals need to be well positioned to inform, treat and support their patients accordingly with relevant knowledge.

Emilie Joyal c/o Surgical Menopause NZ

by EmJ on December 15, 2022 at 01:09PM

Current Rating

Average rating: 5.0
Based on: 68 votes

Comments

  • Posted by JayAnaru December 15, 2022 at 13:46

    Thank you Emilie for voicing this idea. I agree 100% with you in that more work is required in this space. Not only have you identified problem areas but you've also detailed what should be achievable solutions to these very real problems within the healthcare sector.

  • Posted by lindadear December 15, 2022 at 17:24

    Emilie - you have described all the important issues for surgical menopause and the ways to improve them all, so well here.
    As you know, I am keen to help you in this mission :-)
    Let's make things better!
    Linda

  • Posted by nardia_joy December 15, 2022 at 19:20

    I wholeheartedly support this very thorough and well articulated proposal. Thank you Emilie. I agree with Linda let’s make things better.

  • Posted by LM December 16, 2022 at 16:51

    Emilie - I'm with you on this mission. Better care of women, full disclosure and exploration of all options is a necessity.
    Leanne

  • Posted by sewsable December 16, 2022 at 21:26

    I totally agree, this is an area with a lack of support which impacts greatly on the women who are affected as well as their families and wider support circles.

  • Posted by SarahStevenson December 19, 2022 at 16:17

    Please action the initiatives expressed in this idea. I had a hysterectomy aged 32, was told my ovaries would just keep working. One ovary was removed 24 months later, no info was given about ongoing impacts. Almost immediately I embarked on an emotional roller coaster. No monitoring or hormone-related oversight was offered until I went looking 19 years later. 19 years of damage - increased heart, bone, brain risks. Lost productivity, impacted parenting, failed marriage, career impacts. The system owed me and all other women MORE!

  • Posted by NikkiTaylor December 29, 2022 at 08:30

    I strongly that the ramifications of surgical menopause need to be discussed in depth prior to be procedure being carried out. Had the impact been fully explained to me at the time, I may have made the same decision but, at least, I would have known what to expect. I was offered this as an alternative to having zoladex injections every 4 weeks, for 5+ years as I had a strongly ER positive breast cancer. When the option was discussed with my Oncologist, she said that "it made no difference to her" what choice I made. I was not provided with any information or things to consider. Of course, I now understand what a life changing decision it was. Surgical menopause has affected every part of my life for the last 6 years, and I can honestly say that I would not make the same choice again.

  • Posted by Aimeeb42 December 29, 2022 at 08:32

    I whole heartedly agree with this idea and hope it is acted upon. I had my ovaries removed this year as a form of hormonal treatment for breast cancer and was told I would experience “menopause symptoms you know like hot flashes”. That was the only information I received and there was no follow up. I am under 45 and was unaware of any long term risks, or even the many symptoms I am currently experiencing such as joint pain. I have had to do my own research and advocate for myself to get any help. If there was a standardised care model my situation could have been greatly improved or perhaps even avoided. Please don’t let anyone else suffer the way I do

  • Posted by Jackilmua23 December 29, 2022 at 08:46

    Agree. Fully supportive. Particularly as the issue affects half the population. Wholistic and ongoing support, follow up care after hysterectomy is critical to ongoing wellbeing.

  • Posted by KWightman December 29, 2022 at 16:39

    I fully support this proposal. As someone who went through surgical menopause at 28, I found it to be a confusing and scary process. There was limited information made available to me and I was required to research the impacts and alternatives on my own. It would be great to see support and information available to all women going g through this in future.

  • Posted by PHodgson January 04, 2023 at 19:28

    I absolutely support this very important proposal. I had a hysterotomy four years ago after being diagnosed with two different conditions. After my surgery I suffered with severe depression and suicidal thoughts. There was no follow up care, no suggestion of hormonal replacements and I was left feeling very disregarded by my specialist. To date, I have been requesting help from my GP only to be told none of it will make much difference and losing some weight would be my best option. I have only recently found out that my condition is very likely to spread to my ovaries. A year and a half ago I was diagnosed with high blood pressure which was dangerously out of control. NZ needs to do better for all women, as we will all walk the path of menopause and a lot of us have had to have surgery which has potentially forced us into early menopause, even though some of us were told there would be no side affects due to still having ovaries. I have very simply "never" been the same person since my hysterotomy.

  • Posted by Dempsey January 05, 2023 at 09:18

    I fully support this proposal. Woman need access to information in order to make decisions about their health.

  • Posted by DaniT January 05, 2023 at 10:07

    This proposal has my full support, as someone who is experiencing surgical menopause and all that comes along with it. It has been a scary and confusing process for me. As someone who has sensory processing disorder, the side effects of surgical menopause are very often crippling and distressing.

  • Posted by Jcha9225 January 05, 2023 at 11:19

    So many of the comments made above are direct experiences and similarities to my own story.
    While I would probably make the same decision again re: removal of uterus, it is unlikely that I would go down the path of oophorectomy again. My life has not been the same since this surgery, while

    I’m glad for the positives it has brought, but there are many, many negatives which I was unaware of & when discussing with specialists and some GPs either were/ are just dismissed with some flippant comment about losing weight (gee why didn’t I think of that), or obvious lack of knowledge in relation to current therapy available, and generally being taken seriously when I discuss my health concerns.
    I would add that my education gives me a strong knowledge of medical procedures, diagnostic techniques & pharmacology, and even armed with that knowledge I still struggle to be ‘heard and seen’ by human medical professionals.
    I really feel for people without this background trying to navigate their health care needs.
    Things really need to change.

  • Posted by katiebee January 05, 2023 at 14:05

    For so long, we've been a voiceless entity, being prescribed antidepressants and told to just get on with it. I'm so grateful to finally be heard.

  • Posted by HessJS January 05, 2023 at 15:28

    I fully support Emilie's proposal around surgical menopause; I have not personally been affected but for all the women who are it must be very difficult time and these clear and practical suggestions could make a huge difference to their physical and mental health

  • Posted by RebeccaTaiaroa January 06, 2023 at 17:00

    I had a full hysterectomy at 44years, and while it was entirely necessary, I might have made very different decisions about my own care post-surgery if I fully understood the ramifications of it. The most demoralising symptom to happen was anxiety/panic attacks. Something I had never experienced before in my life. Given I thought I had nailed how to manage the bad times when they come along in life , this just put me back to square one. I've tried to manage the last 5 years without HRT, and frankly I deserve a better quality of life. But a big stumbling block has been the dismissive attitude of GPs, and so I suck up my pride and have an appointment with my GP next week. It's only taken five years, for MY health! I sincerely hope they are up to date on all things surgical menopause. At least I am now in a good place to be able to stand up for myself should it not prove helpful. But should women have to go through this just to get some basic care? I don't think so. I fully support this submission.

  • Posted by Skz January 13, 2023 at 17:36

    I fully support this proposal. Women deserve better.

  • Posted by Atera February 08, 2023 at 16:09

    just wanted to add that my daughter has been experiencing heavy haemorraging ever since her periods (suffering 12yrs now) and intermittently 'no show' from 1-3 months
    After many visits to the doctors, specialists, pills, x2 failed insertions of the copper Mirena, depression, recommendation to remove uterus from doctors ......We felt that alternative medication and treatment eg. acupuncture be sourced and researched Women should be supported by doctors to seek remedial treatment, not necessarily clinical western medicine but also any alternative remedies

    You get the impression doctors actually dont know and/or are bewildered due to limited solutions and support for improving overall wellness for women with these types of symptoms and experienced pain

  • Posted by anneogorman February 20, 2023 at 08:34

    we really need to see more advice and appropriate education regarding surgical menopause

  • Posted by Shiftingpeaks March 05, 2023 at 06:10


    Even as a health professional with some knowledge and having worked in theatre recovering women having these type of surgeries I didn’t know the long term implications and I was very scared about what I DID know once it happened to me. And I didn’t know WHAT to do post surgery. I had to join an American post hysterectomy support group.
    There needs to be a complete overhaul of this process starting with women being empowered to make a fully informed choice.
    During their hospital stay women need adequate pain relief, the length of stay to be appropriate and the follow up process to begin before they even leave hospital.
    Follow up by a health professional fully educated in surgical menopause should be common practise. It shouldn’t be down to women to have to google what to do, to suffer endlessly and swim around in the sea of uneducated contrary advice and suggestions.
    Thankyou Emilie Joyal for your submission which I fully endorse. An overhaul is long overdue. I am grateful for being heard, and have hope that in the future women are given the care and support they need instead of being disenfranchised and neglected in this area.

  • Posted by Kimsm March 05, 2023 at 07:48

    Thx for bringing this topic up.
    It really does need more attention for all concerned

  • Posted by Avendell March 05, 2023 at 08:47

    Menopause should be a part of health education that people have from chil

  • Posted by Avendell March 05, 2023 at 09:06

    *continued from above…

    Childhood onwards. It’s such a life altering process that up until very recently has gone mostly unexamined and unacknowledged.

    Given that 50% of the population will go through menopause the health system should have a comprehensive and robust support system in place.

    I went through a surgical menopause in my early 40s that resulted in suicidal ideation, as well as debilitating mental and physical symptoms, until I finally got help and started with HRT. I don’t want anyone else to go through that isolating and overwhelming experience.

    Menopause affects not only that person who has gone through it, but partners and other family members as well. If the health system could provide holistic support for everyone around menopause, there would be positive outcomes for all.

  • Posted by Kiwijock March 05, 2023 at 09:10

    Prior to my surgery much of the source of my surgical menopause information came from Emilie Joyal. I will be forever grateful for the words written down online by her and other women who had experienced surgical menopause. The lack of information is totally unacceptable and unfair for people who no choice but to experience the removal of their organs.

  • Posted by abradley6 March 05, 2023 at 09:29

    Agree, and would like to see this extended to medical menopause as well. As a cancer patient the most traumatic aspect of treatment was menopause, both the physical symptoms and the psychological impact of losing my fertility. I had no idea, was given no support or information.

  • Posted by Georgie23 March 05, 2023 at 18:11

    Dont women just need better - yes to all the above - more information and support. The pain these women go through is unacceptable.
    Medical research really needs to lift its financial budget into researching womens health and better outcomes .

  • Posted by CathDodd1974 March 06, 2023 at 09:25

    I wholeheartedly support all the initiatives this idea proposes and agree that improved awareness of, and care around, post-surgical menopause is long overdue.
    When I think of women under the age of 45 who have been placed in this situation, my heart breaks for them. It was hard enough being plunged into surgical menopause following cancer treatment at age 44. Shrugged shoulders and the comment of "a few hot flashes" was all I got from my surgeon. She would be facing menopause herself and I would have thought there would be more than this dismissive comment.
    The long-term effects of menopause, both emotionally and sexually, are often ignored or downplayed in my opinion. Is this a bias in women's health and sexuality generally and men seem to be able to be prescribed Viagra with very little trouble whilst I have to jump through hoops to be taken seriously. As is the case with my depression, brain fog, irritability and general moodiness. In counselling, there has been very little awareness or acknowledgement of the toll menopause takes on your mental health and relationships with others. The impact of the loss of oestrogen in the female brain on brain function has never been discussed. All I want is some validation and recognition.
    As far as the longer-reaching health impacts of menopause, I do try not to think too much about them but am aware of its impact on my weight (I am now severely overweight), heart health and insulin resistance but there is no discussion of this in my GP's office. I can't imagine how this limited access to information and support would affect someone in their 20s or 30s but I could only imagine how alone you would feel. At least being middle-aged, I have been able to find some resources on menopause. There is nothing for younger women.
    I think we need a re-evaluation in the administration of women's healthcare as so much seems to be still taboo and unspoken. These antiquated ideas are weird - here we are in the 21st century where manners are for Nanas and yet we still can't say the word "period" out loud.
    Women are suffering unnecessarily and dying in some cases because of this. That is shameful.

  • Posted by KimStevens March 06, 2023 at 16:22

    I whole heartedly agree with this idea. A friend of mine is going through medical menopause and it has been horrendous, she has only just started the HRT process after watching a BBC documentary on menopause. Why is it ok that she only just learnt about the patches from TV and UK TV at that.

  • Posted by Mariawilson March 08, 2023 at 19:34

    Yes to all of this- so important I can’t believe it’s not already happening!

  • Posted by ricksan April 28, 2023 at 08:09

    Thankyou! As someone who had their ovaries removed with no idea on the ramifications, I thank you. This proposal is on point.

  • Posted by nardia_joy April 28, 2023 at 13:15

    As this consultation is nearing its conclusion I wanted to add my voice and personal story to those shared here. Thank you to everyone for your courage in sharing these experiences so we can make a change for women in the future, I supported Emile’s proposal early on but didn’t share my experience and now want to remedy that.

    I had risk reducing surgery – as a BRCA2 carrier I had been advised by a number of doctors to have my ovaries removed in my 40s in order to remove the risk of getting ovarian cancer. I had a choice about entering early menopause and unfortunately I would say that this choice/consent for the surgery was uninformed. This should be a significant red flag and of extreme concern to Te Whatu Ora – that we are undertaking surgery on patients (I would suggest very regularly) that does not have informed consent. There should have been clear advice/warnings which informed me that there is not strong evidence based practice and guidelines regarding the precise parameters of hormonal treatment of surgical menopause for example – we don’t know the safe or effective ratio of oestrogen to progesterone to reduce the risk of womb/uterine cancer.

    The experience of menopause was massively downplayed and minimised – there was a suggestion I may not even need HRT at all – so I was sent home from surgery for six weeks without anything. I was certainly never told that I will need to be on hormones for the rest of my life. The ignorance of the experience of menopause is breath-taking – there was talk of possible “hot flushes” but no other potential side effects were mentioned or discussed. It was only on my review meeting that the surgeon asked whether I had had any symptoms – seriously thinking that I might not have any symptoms at all – would we ever do that to a man who had surgically removed testicles!? and despite extreme and severe symptoms I was started on the lowest possible dose and this has been a long, slow and very painful journey to my current dose which I believe is still not high enough as my joint pain remains significant and my stamina/energy/strength are still far below what they were prior to surgery. But this is the max ‘safe’ dosage.

    What I experienced within days of my surgery – it honestly was like driving off a cliff – I suffered chronic mood swings – particularly all consuming anger/frustration/despair towards loved ones , serious and debilitating insomnia/sleep disturbance, loss of memory/concentration/cognitive ability to problem solve (it felt like my brain had fallen out – it would just suddenly stop working), overwhelming fatigue/exhaustion, significant weight gain – I am now officially ‘morbidly obese’, loss of muscle strength/energy/stamina – I would love to know how much strength and muscle mass I have lost over the last two years – I believe it is significant as I can longer even open jars and my muscles ache and fatigue over short flat walks where I used to be able to go tramping for many hours, overwhelming anxiety and loss of confidence – manifesting as an inability to even get out of bed and start the day/go to work - I lost interest in my hobbies and lost confidence in my bodies ability to do exercise. My life because a shadow of its former self.

    If someone had said to me – having your ovaries removed will take away your joy, your motivation and your ability to do most of the things you love – I doubt very much I would have made the decision I did.

    I have had to battle for years to increase the level and type of HRT I am on – the patches don’t stick to me very well – but there are no other funded options available. There is no recognition by Pharmac that women even need their testosterone replaced – I have to get it off licence. The lack of comprehensive robust knowledge of women’s bodies and what they need hormonally post obstetric surgery is, as I said, breath-taking. This must change.

    I would like to see mandatory and appropriate screening and testing and wellbeing evaluation prior to surgery especially risk reducing surgery where there is time and choice to undertake these. I appreciate not all women have a choice but those that do should be aware of where they need to get back to retain their quality of life. I don’t know about the level of technology available but I think this would have been very helpful for me
    – Testing baseline hormone levels of testosterone so we know what needs to be replaced. I was told years ago that I had high testosterone levels for women but without recent evidence of this my doctor is not willing to increase my prescription despite still being unable to go tramping or exercise like I could before. No one even mentioned that I would need to replace this hormone prior to surgery – I had to find this out through my own research. If they had mentioned it I might have said what I knew and we may have been in a different situation entirely.
    – Development and use of continual hormone monitors (such as we use for blood sugar monitoring) for fluctuating hormones like oestrogen – so we know what level of replacement hormones are required and to have these placed on the body during surgery so we wake up without a gap in our hormones.
    – An evidence based plan for hormone replacement for the rest of your life and a recognition that this is very probable need – though the dosage will decrease with time.
    – Bone density scans so we can track the impact of hormone loss on our bones.
    – Mental health assessments of for example anxiety levels – so we can see deterioration and treat appropriately.
    – Strength/stamina/fitness tests and muscle mass scans – so we can prescribe ‘treatment/support’ to maintain this post surgery such as physiotherapists and fitness trainers skilled in rehabilitation post hormone loss.
    – Lifelong entitlement to specialist support from menopause specialists – until such time as GPs are informed and feel comfortable to prescribe all the HRT required by women in surgical menopause though I think the more we learn the more we will understand that this is a specialist area and therefore requires specialist knowledge and support for the rest of their lives.
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