“Women’s Voices: The Lived Experience of the Path to Menopause” is a chapter in the book Each Woman’s Menopause: An Evidence Based Resource For Nurse Practitioners, Advanced Practice Nurses and Allied Health Professionals.
Published in 2022 by Springer. Edited by Patricia Geraghty
Nina Coslov was the author of this chapter.
The table of contents with links to the abstracts of other chapters is provided at the bottom of this page.
Abstract
Each person’s experience of the menopause transition is unique. Individual voices offer valuable insights about the lived experience on the path to menopause. Inadequate anticipatory guidance about changes that can accompany this transition leads to surprise, confusion, and sometimes concern. Many who seek healthcare are dismissed; told they are too young for perimenopause or that “it’s just part of getting older” by clinicians who aren’t educated about this transition either. A lack of research underlies why women aren’t better prepared and why clinicians aren’t equipped to validate their experiences, particularly when symptoms begin before cycle irregularity. Until the Stages of Reproductive Aging Workshop (STRAW) in 2001/2012, the absence of a defined way to demarcate the progression through the menopause transition (MT) hindered a more complete understanding. Slow knowledge translation means recent research isn’t a part of provider training or shared in the popular press. However, when a woman knows what to expect during this sometimes disruptive, many-year transition and is able to connect with a knowledgeable, empathetic clinician, it has an enormously positive impact on how she navigates this transition and manages her health for the coming decades.
2.1 Author Perspective and Chapter Context
The first half of this chapter will follow my path through surprise and confusion at changes I noticed before my cycles became irregular, the various types of sources I came across as I attempted to figure out what was going on, and my experience seeking healthcare. I will weave in other voices with my own. I’ve learned from listening to women over the past five years that my experiences are all too common. My personal investigation led to the creation of an online resource, Women Living Better (womenlivingbetter.org) to share my learning with others. I want to acknowledge that my story represents some people, but not all. Some are not symptomatic as they approach menopause. Some who seek healthcare find a provider that is knowledgeable, supportive and able to validate their experience. As a result, their path to menopause is very different. Every facet of this transition is a reminder of the uniqueness of each person’s journey.
The second part of the chapter goes beyond my personal experience to cover women’s experience with the Genitourinary Syndrome of Menopause (GSM), the broader impact that a symptomatic transition can have on relationships, caregiving and career, and what might create more successful health care interactions from a patient’s perspective. Lastly, I focus on the importance of better understanding and recognition of the symptoms some women may experience during the STRAW late reproductive stage (LRS). My hope is that all of this will help health care professionals better understand those in perimenopause who come through their door seeking information and support.
2.2 Lack of Education Leads to Misattribution, Confusion and Fear
Most women assume that menopause-related changes will happen at age 50 or later. When asked to think back to when they were 30 about at what age they assumed changes associated with menopause would begin, 59% of women anticipated changes at 50 or later and another 28% said 45-49 years old. Only 13% assumed changes would begin before age 44. (Coslov, 2021). Because they haven’t been given anticipatory guidance to expect changes in their late 30s or early 40s as ovarian follicles begin to decline and reproductive hormone patterns change, when the first changes occur, most don’t know what is happening to them or within their bodies. It can be frightening. Women commonly describe, “feeling like they are going crazy” or “I’m just not like myself”. Women are prepared through curricula for puberty and childbirth, but where is the education about this transition to menopause?
In 1996, a paper by LeBoeuf and Carter (1996), stated that, “the worst thing about perimenopause for most women is not knowing what to expect”. In 2003, a study reported in JOGNN designed to understand how well women ages 30 to 50 could attribute symptoms to perimenopause and how often they discussed symptoms with a health care provider, concluded with, “the results of this study suggest that education and anticipatory guidance for perimenopausal women should begin with women in their 30s. With many symptoms occurring as early as age 35, recognition of symptoms can greatly reduce the discomfort and fears that women experience during the perimenopausal transition”. (Lyndaker, 2004).
A 2014 survey of Korean women concluded, “that comprehensive education which is delivered as soon as possible on knowledge, attitude, symptom and management of menopause should be regarded as crucial for Korean midlife women. Education and intervention programs on menopause symptoms are thought to be essential in middle-aged women”. (Kwak, 2014)
Despite these repeated calls, the lack of preparation for and education about this normal life transition persists and as a result, women don’t know when to attribute symptoms to hormonal changes. For many this creates fear about other than hormonal causes. In a 2016 Women Living Better (WLB) online survey, half of all women who possibly had hormone-related symptoms said they didn’t seek help from a healthcare provider. When asked why, their responses reflected a lack of awareness about what experiences are related to changing hormones and the age at which this process can start:
“I believe my night-waking and trouble falling asleep after waking, have to do more with stress than menopause.” — Beth*
“I honestly have never thought about these ‘symptoms’ or ‘annoyances’ as symptoms of menopause that could or should be discussed with my doctor.” — Elaine
“I didn’t really perceive the increase in anxiety and mood swings etc. being linked to hormones, and being only 39, I felt they can’t be linked to menopausal symptoms as I’m too young! I feel that I don’t really have the forum to talk about these changes with a health care provider but having discussed with friends I realize we all are experiencing greater extremes of moods etc. in our cycles.”
— Amari
Although some women take these changes in stride, others describe feeling scared and alone.
“I searched the internet, talked to my doctor, talked with my husband and felt completely alone and desperate for answers. I was 43 when I first experienced many of these side effects and perimenopause never crossed my mind.”
— Susannah
“Doctors do not have the time or interest in this crippling phase of life leaving women feeling scared and alone until finding your site.” — Kim
“Because I have to admit I feel a little overwhelmed and scared by it.” — Mia
And others share feelings of loss of control, not like themselves, and unwell.
“About to turn 43 in a couple of weeks. I’d say I’ve been feeling ‘different’ now for about a year & I do seem to be experiencing symptoms common to perimenopause, mainly mood swings, anger, anxiety, forgetfulness (brain fog) & night sweats. Everything kicks off about 5 days before period is due. Sometimes there’s a feeling of out of body experience- almost like I feel drunk & out of control.” — Lisa
“Over the last 6+ years I haven’t been feeling well but the GP hasn’t been sure what the problem is. Over the last 12 months I have had lots of new symptoms such as joint pains, headaches, occasional night sweats, receding gums, anxiety, feeling tearful, hair loss, dry skin, cycle changed from 32 days to 25 days and feeling generally bleugh!” — Toni
“I’m 47 (next month) and I’ve been “unwell” for a long time (approx. 2 years) with fatigue, joint pain, anxiety but not every day, brain fog, brutal periods – pain and heavy bleeding. I’ve suspected it may be perimenopause causing the symptoms but the delightful doctors I’ve seen wave their hands and dismiss my concerns. I think they think I’m a paranoid, hypochondriac middle-aged pain in the arse….” — Colette
Some women, in hindsight, express anger about the lack of guidance.
“The menopause symptoms that I experienced were ridiculous, and I was incensed that there had been no pre-warning about these… the fact that I was learning about them first after suffering for a year (and having them impact my relationship and my self-esteem) so greatly, was inexcusable.” — Carlotta
Not only do women believe menopause-related changes will begin at 50 or later (Coslov, 2021), but they assume they will skip a period before symptoms occur. In fact, early changes in experience often come before a skipped period or cycles that are dramatically different in length, but most people don’t know this. The hot flash is the hallmark menopausal symptom and when something else arises first, such as waking in the middle of the night or mood changes, most women assume something else is going on. This is the case especially when periods are still regular.
* Note: All names have been disguised to preserve privacy. Quotes were sourced from submissions to the Women Living Better website and posts from The Menopause Chicks and the Perimenopause Hub Facebook Groups with permission from moderators.
My Story
This was true for me. When I was 42, I began waking up at 2 am with lots of energy. I was often unable to get back to sleep for several hours. It seemingly came out of nowhere. I had no idea what could have caused it. My periods were still coming every month. Nothing in my life had changed.
Others echo similar confusion about new symptoms with regular periods and have no idea the cause.
“My period just started to be unpredictable in the last 6 months. This is my main symptom. Before that started though I’ve had anxiety, weight gain and heart palpitations over the past 2 years that felt like they came out of the blue – not related to changes in my life or my behavior.” — Rochelle
2.3 A Broader Range of Symptoms than Commonly Recognized
In addition to sleep disruption, another early symptom for many is mood changes. Commonly women describe increased irritability resulting in sudden anger, mood swings, flying off the handle easily or feeling rage towards others (often loved ones).
“I think I am on the cusp of perimenopause or just beginning, I haven’t missed a period yet, but I have had some irregularity (period 2x a month). I get very bloated, more bloated than when younger, very irritable, I feel almost unhinged.” — Leela
Other common mood changes are anxiety-related, feeling less able to cope with things, feeling more worried, and having panic attacks. On the Women Living Better website women have described their feelings; “I feel like I’m in fight or flight all the time,” and “I’m jumpy and have a sensitive startle reflex”.
In a 2005 NIH State-of-the-Science Conference Statement on management of menopause-related symptoms, only vasomotor symptoms and vaginal dryness were linked to the hormonal changes of the menopausal transition. Sleep disturbance was noted as, “having some positive evidence of a menopausal link”. (NIH State-of-the-Science Conference Statement on management of menopause-related symptoms, 2005). In a 2020 WLB survey aimed at creating a better understanding of women’s experience during the menopausal transition, participants were queried about 61 symptoms gathered from a variety of sources, that are sometimes associated with the menopause transition. Only two symptoms, vaginal pain in the absence of sex (3%) and more interest in sex (9%) were reported by fewer than 10% of women, all others were reported by more than 10% of people surveyed (Coslov, 2021). Most people associate the menopausal transition with hot flashes, but lesser-known symptoms are also common. These include middle-of-the-night waking, mood changes, palpitations, dizziness, cognitive challenges, changes to the gastrointestinal system (such as nausea, heartburn, bloating or constipation) changes to hair and/or skin and joint and/or muscle pain and have been investigated with respect to hormonal fluctuations in a few research studies to date (Freeman 2007, Woods, 2007).
This is the research that hasn’t made its way to provider training or mainstream media. As a result, women don’t know to attribute symptoms to something possibly related to changes in hormonal patterns. Mood symptoms, in particular, can be frightening when they arise. Women start to question themselves and wonder what about their circumstances may be causing these sudden increases in irritability, anxiety, fearfulness, tearfulness and sudden rage. Those who have relatives with mental health challenges, worry they are following a family pattern. In addition, these changes often come when women are intensively caring for young children (or teenagers going through their own hormonal changes), when career challenges are peaking, and aging parents may require increasing attention. Uncertainty about the cause of mood changes, the fear about what they may be a sign of and the lack of time for self-care are all contributors to women’s distress at this time.
So, what does a woman living in the 21st century do to figure out what is happening to her?
At first, she will tell herself it’s probably caused by her busy life and try to ignore it, hoping it will pass. If she’s lucky enough to have an older sister, coworker or close friend, perhaps she’ll ask her. However, there is a surprising lack of knowledge sharing by mothers or between friends. Do mothers not want to break the bad news to their daughters about what is coming? Or like childbirth, do they forget once they are through it?
Is it because the path to menopause and menopause itself are stigmatized, and for many, undiscussable topics? Among friends, it seems that menopause is a topic that is either uncomfortable for the one who has questions, or the information seeker is concerned that they might make a friend feel awkward by broaching the topic.
I didn’t know what to expect with perimenopause and menopause. I wish it were a thing for mothers to talk to their daughters of what to expect so we’re not convinced we’re dying from something when it happens. I know so much of it is a social construct, but why do we not talk about this with women in their 40s, so they are prepared for it?? — Alanna
“I just want to say thank you. I am 45 years old, experiencing all the symptoms and NONE of my friends talk about it. We talk about everything else, but the word menopause / perimenopause is never brought up. No one expects it, and no one feels old enough for it. Thank you for a place where I can get real info.” — Monique
And there may be cultural norms at play. As part of a large 2007 online study of menopausal experiences, a secondary analysis was done with women in four ethnic groups. Women in these groups opted-in to join online forums that met for six months to discuss menopause-related topics. In the Hispanic online forum one participant shared, “I feel that historically the women in our culture have been less open about menopause as a whole which makes it difficult to get information from my mother or her peers. She will never share those types of issues because in her eyes, they are private matters.” And another, “I feel that our culture makes us a little less likely to ask questions or share our concerns with others. I was always told to not make a fuss if wasn’t feeling well…suffer in silence… A lot of patience is needed during this time. And don’t forget that silence is the golden rule in menopause.” (Im, 2009)
2.4 Seeking to Determine the Source of New Experiences is Hit or Miss
For the woman who doesn’t have a friend or family member with whom to compare notes, or for whom her midlife experiences are not culturally discussable, she has no choice but to “tough it out” as long as she can. At some point though she realizes her new symptoms are interfering with her life and that she just doesn’t feel like herself. At this point, if she has access to the internet, she will likely go online to research possible causes. Figure 1 below outlines the path that many women with internet access take to investigating and managing unexpected symptoms at midlife.
Figure 1. A Woman’s Aims, Actions and Feelings as She Tries to Understand and Manage Changes at Midlife
Online content increasingly has more to offer, both good and bad, related to the menopausal transition. A search today yields many more evidence-based sites in the first 10 offerings than just three years ago. Menopause-related content, diagnostics, products and programs are rapidly increasing in numbers. The word is out that there many perimenopausal women are suffering and looking for help. The menopause products and services marketplace is projected to be valued at $600BN by 2025 (Hal, 2021).
Online content available to those in perimenopause has many permutations. There are non-commercial entities: evidenced-based information-only sites created by medical institutions with affiliated research centers, professional organizations or public-funded research institutions. There are also multiple versions of commercial entities: ad-supported medically oriented consumer information sites and sites selling products or programs and educating along-side their offerings. There are also sites offering information alongside community interaction and support.
There is also content created by individual providers (e.g., Gynecologists, Pharmacists, Nutritionists, Naturopathic Doctors, etc.) who have their own sites, podcasts or social media platforms. Some of these are aimed at providing information only. Others are hoping to build their professional practice. And still others have their own formulation of a supplement, a hormone therapy product or a program for balancing hormones or weight management on offer. What type of site one lands on depends on what words are used to search online.
The following story highlights the potential hazards of searching online for remedies and using them without the guidance of a knowledgeable healthcare provider,
”I went to the internet, looking for answers, and I finally found Dr. John Lee and more recently, Smoky Mountain Natural topical estrogen and progesterone “bio-identical” creams. I thought these were safe to use, but recently, a friend using a topical cream came down with aggressive uterine cancer. I don’t want to stop using the cream, but now I’m concerned. Why is this such a completely unknown and unexplored territory when talking to doctors? Even an endocrinologist I talked with didn’t know anything about bioidenticals.”
— Lorraine
A provider can help patients be better consumers of online information by recommending high-quality, reliable sources and suggesting a critical lens when reading any information presented alongside something that is for sale.
2.5 Confusing Messages about Research
Mainstream media, health information sites and research intermediaries make the latest research available online to a mass audience. Too often, this comes with eye-catching headlines, terminology and explanations that are difficult for a layperson to decipher. Even the articles that are accurate come with terms that without explanation leave a reader to draw their own conclusions about the differences between different types of progestogens. When interpreting research about HT and breast cancer, that might be an important distinction.
The 2020 JAMA article titled: Association of Menopausal Hormone Therapy with Breast Cancer Incidence and Mortality During Long-term Follow-up of the Women’s Health Initiative Randomized Clinical Trials talks about the breast cancer risk associated with CEE alone and CEE and MPA. The lay reader is unlikely to know that CEE is an estrogenic product, but not 17-beta-estradiol. She is also unlikely to know that MPA is a progestin but not progesterone. These things of course matter in interpreting the results vis-a-vis therapies available to manage symptoms.
A BMJ study from October of 2020 titled Use of hormone replacement therapy and risk of breast cancer: nested case-control studies using the QResearch and CPRD databases was summarized by Science Daily, an advertising-supported site whose tag line is, “Your source for the latest research news”. The Science Daily title for this same study was: New estimates of breast cancer risks associated with HRT. Results add to existing knowledge and should help doctors and women make the best treatment choices.
Here the laywoman reads about “HRT” with no indication of which type of estrogen or progestogen was used. The article also uses the term “progestogens” as the causative agent for increased risk of breast cancer without explaining whether it was a progestin or progesterone or naming the agent used. How is a woman without in-depth knowledge supposed to interpret this in a way that will help her make a good decision for her? She can’t. Only the trained reader will understand that there are different estrogen and progestogens studied, the subtlety about the “timing hypothesis” and the importance of absolute risk versus relative risk, but for a woman this is all very confusing. If she asks her provider, she may not get the clarity she’s seeking either.
2.6 Online Support
A reassuring resource for many people are private Facebook groups. These are sites that offer community support and information. I connected with two activists who started private Facebook groups to help others after their own experiences of not being able to find good information or support when perimenopause started for them. Their stories echo many of the sentiments expressed previously.
2.6.1 Shirley’s Story
Even before she experienced changes related to the menopausal transition, Shirley Weir saw her older sister go through menopause early due to childhood cancer. At 36 years old, her sister was told, you better take hormones or, everything will “sag and dry up”.
Shirley was dismayed at the negative attitude her sister experienced but saw how hormone therapy was associated with her sister’s restored health and quality of life. She had a primary care doctor whom she loved to support her through it. She knew it would be a time of change, but she was ok with that. So, at 41 when she started experiencing PMS for the first time, brain fog and began raging with her kids, “the little people I loved the most”, she went to her doctor and hypothesized that this was the start of her menopausal journey. “I thought there would be a conversation about hormone therapy either now or down the road”.
She was taken by surprise when her doctor said, “Oh you are 41, you are too young, if you want to go back on the birth control pill, I can do that. Or I can give you sleeping pills or low dose anti-depressant. “You are too young for menopause”. Neither perimenopause nor the late reproductive stage (LRS) was mentioned.
Shirley felt disappointed. This wasn’t how she thought it would go, but then as she related, “I quickly went to curious. I thought, there is no way I am the only one who is feeling like this”. That curiosity and certainty that she couldn’t be the only one, led to the creation of Menopause Chicks, a private Facebook group that has 30,000 members as of March 2021. The active rate is 80% which means that 24,000 people are active every month. Menopause Chicks is a social learning platform that offers both community and educational guides by topic.
2.6.2 Emily’s Story
Emily Barclay was 39 when symptoms began. She was gaining weight, experiencing new fatigue and her moods felt extreme. She was worried something was really wrong. As she explains, over the next three and a half years she saw five different GPs — all at the same surgery in the UK. Each had different ideas about what might be wrong and sent her for a different test. None had answers.
A painful memory for her was the appointment where she had a sticky note with her list of symptoms to discuss and the GP took it and handed her a requisition for a “managing stress” group. Emily felt dismissed and assumed her doctor was chalking it all up to mental health symptoms when she was sure there were physical changes too. But she did go to the group and her biggest takeaway was, “you should sleep more”. Looking back, she recalls that the very first GP she saw said, “this could be related to the menopause”. But Emily thought, “I’m only 39 and I’m still getting regular periods”. She reflected, “How I wish I knew then what I know now!”
At the end of the three and a half years of tests and medical appointments, she ended up back with that first GP. “I love her”. Emily relates, “She and I together concluded it was the path to menopause and just having an idea of what it was provided so much relief”.
Other women share this relief at finally understanding the source of their symptoms:
“I’m 43 and haven’t had a period in a number of months. My doctor kept telling me I was too young but here I am. I am a bit relieved because perimenopause helps explain a lot about what I have been feeling for the last year or so.”
— Tanita
This overwhelming sense of relief was something Emily wanted others to feel. She felt sure that her journey with all the worry and fear must be happening to other women.
In May of 2019, Emily launched Perimenopause Hub — a private Facebook group for those on the path to menopause. Her vision was to create a resource with hubs of experts. The hubs include Fitness, Nutrition, Acceptance, Medical and Holistic. In September 2019, after recruiting her first few experts, she launched the companion web site perimenopausehub.com where the hubs live. As Emily puts it, “Each woman has her own set of challenges during this time, and each is going to want to tackle those challenges in different ways. I wanted to provide [options] for all women.” Within eighteen months, in March of 2020, her FB group had 8,000 users and as of March 2021 it as 15,500 members, 14,925 of them active in the past month. She now has 40 experts contributing. Clearly these groups fill an unmet need.
2.6.3 The Challenges of Monitoring Online Support
In both Menopause Chicks and the Perimenopause Hub Facebook groups people are admitted to the community once they’ve agreed to a set of ground rules. They can post freely and the impact of a post/comment format in absence of clinical monitoring has been a challenge. Both Shirley and Emily use “post approval” so they can review each post before it’s live. Shirley reads every post submitted and is the first one to comment sharing relevant content from either one of her educational units or an interview she’s done with an expert. In this way, she aims to guide the conversation. After that, she lets it evolve.
Emily has two ground rules: 1. No multi-level marketing and 2. No diet speak. She leans towards letting most posts through, as she doesn’t want to silence any women’s experiences or feelings but will remind women of the rules when necessary. She has other moderators helping now that the group has grown, and they manage members who are treading close to violating community rules. Even still, people try. They join the group, make a few innocuous posts, and then begin to subtly market their product or program. Emily and her co-moderators find these people and promptly remove them. People find these groups highly affirming. One doesn’t have to scroll far before finding someone struggling with something very similar. Being a member drives home the critical message: “You are not alone!”
2.6.4 Benefits of Online Support; Shared Experience is Key
The network of shared experiences may be the single most valuable outcome of these communities. Women express incredible relief at realizing they aren’t alone or going crazy.
“To realize I’m not going mad, I’m not alone in my situation and to be given such fab advice has made a world of difference to me.” — Corinna
“I don’t need answers, because I know there aren’t any and whilst my hubs is fab, he will try to fix what he can’t. But I know you ladies understand and can help to cheer me on, because I’ve seen lots of that here and that’s what we all need, encouragement, cheerleaders, chocolate and wine. Thank you for reading this and for being there, even though you don’t know me.” — Marta
“Hello, glad to have found this group as after reading posts, I realize I’m not alone.” — Julia
“Brand new member here popping in to say that I’ve been dealing with my body and brain changes pretty much alone for the past year or two and am exhausted and depressed. I’m so happy to have found this group and its sisterhood for commiseration, advice and learning.” — Sandy
“Hi Ladies and thank you for letting me join this group . I would like to say hallelujah I’m not alone! Have felt like a complete basket case thinking this can’t all be just menopausal.” — Priya
“… because I was experiencing the symptoms earlier than friends and colleagues, I felt very alone.” — Dominique
The Perimenopause Hub has 67 posts a day and several comments in response to each of those posts. These private groups are providing connection and support for so many people.
However, there are many like Emily or Dominique whose symptoms begin earlier than they were expecting so they don’t know what could be causing them. They don’t connect with a close friend or family member. And they don’t seek an online group to help since they aren’t thinking perimenopausal changes might be at play. Their next step is often seeking healthcare. It was Emily’s next step and mine as well.
My story continued
I made an appointment with my excellent, experienced primary care physician to tell her about my new pattern of sleep disruption. I also attempted to describe a new feeling of not being able to cope as well as I used to, a feeling of increased fragility that was most definitely not like me. I followed with, could it be hormonal? Her question back to me was, “are you still getting a regular period?” When I responded, “yes,” she observed that I was busy with three kids under 6 and offered me a sleeping pill and an anti-anxiety medication. With regular periods, she concluded the changes I was experiencing were not hormonally based. I left feeling misunderstood, disappointed, concerned and certain that something else was going on.
2.7 Dissatisfaction with Healthcare Interactions
Many women report similar experiences of disappointing healthcare interactions and being told they are too young.
“I’m now 41 and have been going to the doctor with peri symptoms for 2.5 years yet she (yes, female doctor) won’t acknowledge perimenopause and says I’m too young to be menopausal. I don’t know where to go now.” — Yudy
“I spoke to my GP about perimenopause, but she thinks it’s unlikely as I’m too young (at 43 I don’t think so) I don’t really know what to do at the moment. I’m unsure where to go for advice on what to take (supps or meds) and what to do next!” — Amira
“I’m 44 and have been experiencing symptoms of what I’ve assumed to be Perimenopause since about age 40. I’ve experienced similar rejection to others by GPs on the basis of being too young, so I’ve been trying to manage the symptoms on my own.” — Katrina
“At one point, I was told by a male physician that I just needed to deal with it with a very dismissive manner.” — Stella
From the aforementioned 2007 online study of women’s menopause experiences across ethnic groups, “women wished for better treatment by their physicians regarding their menopausal symptoms”. Findings from the White, non-Hispanic group cited that women were largely dissatisfied with their health care interactions. “Many of the women had a surprisingly similar desire: they wanted health care providers to start ‘listening to what the women report’. The women tried to justify their perception of not being heard. They identified their belief that physicians rushed into a decision for treatment without listening to what the women were reporting partially because of busy clinic schedules.” (Im, 2008). This phenomenon has been corroborated by submissions to the WLB website, in the WLB 2020 survey and confirmed in other online communities.
Currently, many providers aren’t aware that symptoms can begin before cycle irregularity. As a result, women’s concerns are often met with a dismissive response. The most common of these is that they are too young for perimenopause. This causes mistrust or lack of confidence in the provider, and sometimes with healthcare as a whole. This may leave a woman searching for alternative help and open to other, possibly less evidenced-based, remedies to mitigate symptoms or to practitioners offering unapproved and potentially unsafe products.
2.7.1 Confusion over the Value of Testing Hormone Levels
Many people seek certainty about whether they are perimenopausal and they push for testing. They are further frustrated by the healthcare provider that doesn’t offer it or tells them their results are in the normal range.
“My doctor is invalidating. Can’t be bothered with testing. He told me a couple of years ago I was too young.” — Sumiko
“Dr. isn’t interested, he says I’m too young and still having periods so that’s it. He’s agreed to do a blood test next month but said ‘when it comes back normal, will you accept you need counseling for anxiety?” — Alicia
Women don’t understand that testing in perimenopause tells you little to nothing due to wide fluctuations in hormone levels during this part of the female lifespan.
2.7.2 The Challenge for Healthcare Providers Who Care for Midlife Women
Healthcare providers are in a tough spot. The woman in the menopausal transition often has a range of symptoms — too many to cover in an 8–15-minute appointment. Women come to that appointment confused and looking for certainty on what is going on. A short amount of time and no method to definitively diagnose perimenopause set this interaction up for failure. Furthermore, some symptoms such as heart palpitations, headaches or dizziness elicit concerns about causes more serious than the MT and lead to the need for medical testing.
Those clinicians who work in a menopause-focused clinic, those who see lots of 40ish women in their practices, or those who have entered this phase themselves are perhaps best equipped to support women through this transitional phase.
Many factors contribute to why many clinicians aren’t equipped to validate women’s experiences, particularly when symptoms begin before consecutive cycles differ by 7 days. There is a historic lack of research about midlife women’s health. Until the Stages of Reproductive Aging Workshop (STRAW) in 2001 (Soules, 2001) and 2011 (Harlow, 2012), the absence of a defined way to demarcate the stepwise or erratic progression through the MT hindered a more complete understanding. Even since STRAW, many studies haven’t incorporated the staging framework, making it hard to harmonize findings (Woods, 2021). Further, knowledge translation is slow (Morris, 2011) so recent research about the MT hasn’t made its way into training curriculum (Christianson, 2013).
And healthcare providers admit this. A respondent to the 2016 WLB survey commented:
“As a women’s healthcare provider, I am embarrassed to admit that I know very little about this topic. I am surprised by the limited number resources relating to menopause”. — Natalie
A comment on the Women Living Better website by an emergency nurse was similar:
“Just wanted to drop a line to tell you how appreciative I am of your website and the info. it offers. I am 53 and so many changes are happening. The funny part is that I am an ER nurse of 20 years and you would think I would know a thing or two about women’s issues at this stage, but that is proof of the lack of education out there for this life changing human transition, it has put things into prospective…This information and shared thoughts from other women is a comfort and has changed my perspective of this stage of my life, I have devoted my life to caring for others, it is comforting to know that there are others who give me tools to better care for myself…Thank you.” — Celine
Another physician, a family medical doctor, made the following comment to Shirley Weir of Menopause Chicks, “I have 6-7 minutes with a woman. My waiting room has a backlog of patients. I know how to write a prescription, but I don’t have the education around this [menopause]. The women in my community need someone to talk to”.
A member of a community site shared:
“I love my doctor too, but she has admitted knowing very little about menopause. That’s why I have two people I work with.” — Faith
2.8 Cycle Tracking Yields Information About the Beginning of Hormonal Changes and is a Source of Empowerment
Women can gain important knowledge and a sense of empowerment by tracking their cycles and symptoms. The recent explosion of menstrual cycle apps is making this easier to do and increasingly common. This information can also be helpful to the provider who is trying to understand and offer support.
My Story Continued
When I saw my health care provider, I hadn’t known that while regular, my cycles were shortening. I had had a 33–35-day cycles for many years but I had stopped tracking my cycles as I wasn’t trying to get pregnant and pregnancy prevention was no longer a concern as my partner had had a vasectomy. I was still getting a period every month, but when I started tracking again, my cycle had shortened and was now 29-30 days. Had I known then what I’ve come to learn, I would have been able to link my sleep and mood changes to fluctuating hormones. Some health care providers don’t know that a shortening cycle is an early sign of changing hormonal patterns so I’m not sure my physician would have attributed my experience to the MT even if I had told her my cycles were regular but shortening.
For those who do learn they have cycle irregularity through tracking, it’s comforting to connect their experiences of disrupted sleep and/or mood changes or cognitive to fluctuating hormones but it still comes with some shock and surprise that this is happening much sooner than expected.
“Finding it so hard coming to terms with the reality of my situation, changing body, feelings. It’s so hard, its end of era, yet in my head I’m young. All the symptoms, taking my body for granted. Sex, moisture, no flush, no moods, just me. Hit me like a train today. Feeling useless, what’s the point! It’s like, “that’s it, you had your time” done. Sad. Sorry to be negative Nancy, but it’s kind of overwhelming.” — Jade
2.9 Optimizing the Health Care Visit
After listening to lots of women, what becomes evident is the wide range of what they want in terms of support. Some women want confirmation that what they are experiencing is normal, some want to know that it’s linked to hormonal changes. Others want to learn about remedies to relieve symptoms. Here again, there are varied desires; some want non-hormonal remedies, and some want hormonal remedies. What we hear from many women is, “I want to know the root cause of my symptoms”. And when they don’t know the root cause, they are hesitant to follow through with their provider’s recommendations.
At WLB, we created a tool called The Perimenopause Snapshot for women to use before their healthcare visit. This guide allows women to gather their cycle data, list a history of symptoms and note their most bothersome ones. It further encourages them to think about what will constitute a successful outcome of their visit. Do they only want to understand the cause of their symptoms? Or do they also want to mitigate them? Which remedies would they consider: lifestyle changes; hormomal, non-hormonal options? The tool is available on the WLB website for anyone to use. Perhaps if healthcare providers sent something like this out and got it back in advance of the appointment, it could facilitate enhanced shared decision making, better patient-provider discussions, increased adherence to a treatment developed jointly by patient and provider. This would ultimately lead to better care and patient satisfaction.
2.10 A Later Symptom: Largely Undiscussed and Yet Treatable
All of the symptoms mentioned previously happen earlier in the menopausal transition sometimes before significant cycle changes or more frequently as cycles become irregular before the final menstrual period. The genitourinary syndrome of menopause (GSM) is a cluster of symptoms related to the decline in estrogen, which happens closer to the final menstrual period or in the years just after. GSM can include vaginal dryness, itchiness, and pain with sex due to less lubrication and, or anatomical changes. GSM is estimated to affect 30-90% of women in studies in the US, China and Europe (Geng, 2018, Palacios 2018). GSM has been shown to be a topic that most healthcare providers don’t ask women about during healthcare visits (Kagan, 2019) and most women don’t raise it either (Angelou, 2020). GSM symptoms are the only ones that can be progressive rather than transitional and there are remedies that can help.
The lack of discussion is a huge, missed opportunity. As stated in the 2020 North American Menopause Society’s GSM Position Statement, “Clinicians can resolve many distressing genitourinary symptoms and improve sexual health and the quality of life of postmenopausal women by educating women about, diagnosing, and appropriately managing GSM” (NAMS GSM Position Statement, 2020). Women with untreated GSM symptoms can experience anatomic changes that are difficult to reverse. Some women express anger that they weren’t made aware of potential vulvovaginal changes and/or of treatment options (personal communication with Geraghty, P. MSN, FNP-BC, WHNP 2021).
2.11 Impact of Symptoms on Relationships and Work
After the surprise of symptoms earlier than expected and a possibly unsatisfactory interaction with the health care system, a woman has to contend with the broader impact her symptoms may have on her ability to be a good partner, parent, caregiver, employer or employee, collaborator and leader. This is an additional source of stress during a time when less stress is called for.
In the workplace:
“I had been running global projects for years and I suddenly found myself struggling to make decisions, I was filled with self-doubt. Lost so much confidence in myself. Also had this underlying fear of so many things.”— Sabrina
I’m starting a new career (at 46) and seem to be unable to take criticism without starting to cry! This has never been a problem before. I seem to be taking everything so personally and getting upset in front of managers etc. It really annoys me because I don’t do that! — Tania
“How does everyone cope at work dealing with the symptoms? I’ve been off work with stress overload the last 3 months. Now recognizing a lot was to do with being perimenopausal leading up to a complete burnout!!” — Ruth
“So, I had my appraisal in work yesterday and mentioned about my perimenopause clouding me for the last few months, I know I haven’t been on my A game. Was offered counseling- aww that’s so nice but I don’t need counseling I just need a little more time than normal – I think??” — Malie
With children:
“I explained I can’t concentrate, VERY intense mood swings that scare me and my children.” — Selma
I need help with my temper never really had a problem before, but I’ve noticed I have a really short fuse with my daughter and then last night my hubby really wound me up I shouted he shouted back he threw the milk across the side and I smacked him on the back and swore at him. I know I’m out of order for hitting him and I am angry with myself for doing it he is fuming with me and we had a huge argument. — Anita
With partners:
“4 weeks ago, I went to my GP as I realized something had to change. My symptoms were getting worse, and I was regularly on the verge of punching my husband in the face.” — Sharon
“Husband has accused me today of being distant and weird and not caring about his feelings. He cannot accept how I’m feeling these days and tells me to pull myself together…like it’s that easy.” — Orli
“How do I get my husband to stop blaming me and my hormones for everything? …Husband not been very understanding and saying I need therapy! Any suggestions how I can him to understand and support me through this awful time that could go on for years gratefully received not sure I can cope anymore with the constant blaming me and my hormones…. it’s making me even more tearful… thank you in advance.” — Tamiko
“I’m only perimenopause and it’s like someone turned the power off. Sometimes not interested and he can’t get me to climax, and other time not interested at all.” — Heidi
“It’s been almost a year since my husband and I (who have been married for 17 years) had sex and I don’t miss it an ounce. I have absolutely no desire. “
— Angela
While mood-related symptoms affect many kinds of relationships, GSM symptoms sometimes coupled with lower libido directly impact intimate relationships.
2.12 What Would be Game-Changing in Menopausal Care: Recognition of the LRS Woman
According to the STRAW framework, entry to the MT begins when cycles differ by seven days. The stage immediately preceding this is the Late Reproductive Stage (LRS). There is much room for improvement in the care of midlife women by better understanding, educating and supporting women in this earlier stage.
The LRS is a single stage within the STRAW framework. However, there are at least three groups of women represented in this phase. There is the LRS woman who is hoping to extend her fertility. There is the LRS women who aims to prevent pregnancy. And there is the LRS woman who is starting to experience symptoms related to the MT and seeks support managing those. And these three aims are not mutually exclusive as figure 2 shows:
Figure 2. The Late Reproductive Stage — at the Intersection of the Reproductive and Non-Reproductive Years — Represents 3 Groups, Each with Different Aims
2.13 Conclusion
Women need three things to best navigate this transition. First, they need to know how to access reliable information that is not conflated with commercial motivations around selling a product or a program. Second, they need healthcare providers who understand the very broad range of symptoms that can arise, that these can begin while cycles are regular, and who stand ready to listen, support and provide access to available remedies. And third, women need to know they are not alone. When these needs are met, it will be beneficial not only during the path to menopause but for the years that follow.
The final part of my story
As mentioned earlier, after all that I had learned investigating my own experience with symptoms before cycle irregularity, I knew I had to share it with others. I co-founded womenlivingbetter.org, an evidenced-based website to educate women about how our bodies change on the path to menopause.
I’ll close with this message exchange from the Women Living Better Facebook page as it represents so many women’s voices.
FB communication, Feb 2021. Shared with Permission.
RL: Hi I just wanted to say thank you so much for the website. It has helped me to feel sane again. I’ve read some articles from other women that explain perfectly what I am experiencing, and I don’t feel so alone! and like I’m losing control of myself! I’m very grateful that I managed to stumble across this site while searching the Internet aimlessly like a blind woman with no idea of what I was searching for but needing someone to reassure me that what I’m going through can be perfectly normal for 40-year-old women. Thank you. Thank you. Thank you.
WLB: Thank you so much for reaching out. Your message perfectly explains why we created WLB. Please share with anyone you think might be helped.
RL: I will definitely be telling everyone about it!! I’ve even told my husband to have a look because it can help him understand some of what I’m going through.
WLB: Absolutely! Partners (and kids if you have them) definitely need to understand what we are going through. Isn’t it hard to believe that we don’t know about this until we get here and do our own research? I’m hopeful that we can change that. We all need to talk about it! Thanks so much for helping to spread the word.
RL: There definitely needs to be more awareness about it. I started noticing changes 12/18 months ago and I honestly thought I was going crazy. Thank god there is a website like yours to help us along this journey. And I’ve been talking and tell anyone that will listen to me about what’s been going on because I’d hate for other women to feel that way… taking about it is definitely the way to go.
Health care providers could use more training in this area. When I went to the doctor, I went through all of the changes I’ve been experiencing over the last 12 months, but he would only say I was in the perimenopausal stage if my periods became irregular! Disregarding everything else I’d mention! That can be very hurtful and damaging to a woman who’s not feeling herself.
ACKNOWLEDGEMENT
With gratitude to all those who share their personal stories. Together we can collectively fill the research gap and let each other know we are “not alone” and most definitely “not crazy,” just perimenopausal.
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Each Woman’s Menopause: An Evidence Based Resource
Editor: Patricia Geraghty, MSN, FNP-BC, WHNP
TABLE OF CONTENTS
Part I: Women’s Perspective and Physiology of the Menopause Transition
1. History and Overview of the Menopause Experience
Patricia Geraghty
2. Women’s Voices: The Lived Experience of the Path to Menopause
Nina Coslov
3. Communication with Women in the Menopause Transition
Juliette G. Blount
4. Physiology of Menopause
Patricia Geraghty
5. The Interaction of Menopause and Chronic Disease
Patricia Geraghty
6. Menopause Hormone Therapy
Patricia Geraghty
Part II : Menopause Symptom Management
7. Abnormal Uterine Bleeding
Patricia Geraghty
8. Vasomotor Symptoms
Patricia Geraghty
9. Sleep Disruption
Natalie D. Dautovich, Dana R. Riedy, Sarah M. Ghose, Ashley R. MacPherson
10. Mood and Cognition
Eleanor S. Bremer
11. Genitourinary and Sexual Health
Jill Krapf, Ann Nwabuebo, Lucia Miller
12. Nutrition and Weight Management in Midlife
Maya Feller
13. Musculoskeletal Health in Menopause
Kathleen A. Geier, A. J. Benham
14. Breast Health
Michelle Frankland, Trish Brown