No, but your healthcare provider may not know that — voices of women and healthcare providers
We Expect Changes Associated with the Path to Menopause to Begin Later
Most of us assume that menopause-related changes will happen at age 50 or later so when symptoms associated with fluctuating hormones begin in our 30s or 40s we are caught off guard. Particularly when changes arise before our periods or cycles have changed in obvious ways. In the 2020 WLB Survey, we asked participants to think back to when they were 30 and recall at what age they assumed changes associated with menopause would begin. Fifty-nine percent (59%) anticipated changes at 50 or later and another 28% said 45-49 years old. Only 13% said before age 44.1
“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 my period is due. Sometimes there’s a feeling of out-of-body experience – almost like I feel drunk & out of control.” — Lisa
“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
“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!” — Samantha
We’ve heard from countless women who seek support and are told by healthcare providers that they are too young for their symptoms to be menopause-related or that they might be related but that it’s just part of life:
“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.” — Inez
“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!” — Sahar
“At one point, I was told by a male physician that I just needed to deal with it with a very dismissive manner.” — Joyce
“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 hand and dismiss my concerns. I think they think I’m a paranoid, hypochondriac middle-aged pain in the arse….” — Serena
A 2007 online study of women’s menopause experiences found that, across four ethnic groups, “women wished for better treatment by their physicians regarding their menopausal symptoms” .2
Due to a research gap in midlife women’s health, many health care providers aren’t aware that symptoms can begin before cycles change significantly. As a result, when we share our new symptoms with a healthcare provider, we are often met with a dismissive response about being too young for perimenopause. This leaves us feeling unheard, questioning ourselves or our provider as we are certain that something has changed. In some cases, when we’ve seen more than one provider and felt unheard, unhelped or dismissed, we begin to lose trust in healthcare as a whole. This causes some to search for alternative help and to be open to other, possibly less evidenced-based, remedies to mitigate symptoms. In some cases, we end up with practitioners that offer unapproved or potentially unsafe products or products or programs that just don’t work.
Confusion over the Value of Testing Hormone Levels
When we begin to experience these changes, we crave certainty about what is going on and whether we are in fact in a new phase, that is, whether we are perimenopausal. This often leads to a desire for testing for answers. When a healthcare provider explains that testing can’t confirm anything until you are close to your final menstrual period, it feels like yet another disappointment. Some healthcare providers go ahead with testing and when results are in the normal range, it feels like further lack of validation.
“My doctor is invalidating. Can’t be bothered with testing. He told me a couple of years ago I was too young.” — Tanya
“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?” — Sumiko
The truth is that single point in time hormone testing in perimenopause tells you little to nothing due to wide fluctuations in hormones during this part of the female lifespan.
Estrogen and progesterone are what are called pulsatile hormones and their levels change within a woman hourly and daily. Only daily testing at the same time of day over many weeks might be able to show how patterns are changing.
The Challenge for Healthcare Providers Who Care for Midlife Women
In the 2007 online survey women, “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.” 2 As women, it’s important for us to recognize that our healthcare providers are in a tough spot. Those of us in the menopausal transition often come to an appointment with many symptoms — too many to cover in an 8–15-minute appointment. We come looking for clarity, but that is hard to get in a short amount of time. And as mentioned, unfortunately, there is no way to definitively diagnose perimenopause, so we need someone to listen to all of our symptoms and help us figure out which to focus on with what remedies. In addition, many of the symptoms we experience such as heart palpitations, headaches or dizziness raise concerns about other causes more serious than fluctuating hormones, which can lead to the need for further medical testing.
Those clinicians who work in a menopause-focused clinic, those who see lots of 40ish women in their practice, or those who have entered this phase themselves, are perhaps best equipped to support women through this transitional phase. As Stephanie Faubion pointed out in the New York Times piece, Why Modern Medicine Keeps Overlooking Menopause, “Menopause gets about an hour of coverage in medical school.”
And healthcare providers admit this. A respondent to a previous 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 [of] resources relating to menopause.” — Natalie
A comment on the Women Living Better website by an ER 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 perspective. This info. 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 others give me tools to better care for myself…Thank you.” — Michelle
A Source of Empowerment: Cycle Tracking Yields Information About the Beginning of Hormonal Changes
You can gain important knowledge and a sense of empowerment by tracking your cycles and symptoms. The recent explosion of menstrual cycle apps is making this easier to do. Once you start to see whether and how your cycles are changing, you can better attribute your newly disrupted sleep or mood changes to these cycle changes. This information can also be helpful to your provider who is trying to understand what is going on to best provide support.
Optimizing Your Health Care Visit – The Perimenopause Snapshot Tool
After hearing lots of women’s stories, what has become clear is that the kind of help or support we want from our healthcare providers varies significantly. Some of us want confirmation that what we are experiencing is normal, some want to know that it’s linked to hormonal changes. Others want to learn about remedies to relieve symptoms. Some desire 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.” When they don’t know the root cause, they are understandably hesitant to follow through with their providers’ recommendations.
At WLB, we created a tool called The Perimenopause Snapshot for you to use before a healthcare visit. This guide allows you to gather your cycle data, create a list and history of symptoms, and note the most bothersome ones. It’s also designed to help you think about what will constitute a successful outcome of your visit. What are your goals? Do you only want to understand the cause of your symptoms? Or do you also want to mitigate them? Which remedies would you consider: lifestyle changes, hormonal, non-hormonal options?
For those that want to do more detailed tracking, take a look at the Daily Perimenopause Diary available at CeMCOR’s website. Dr. Jerilynn Prior, the founder of CeMCOR and creator of the diary said, “Women healthcare providers I know, when a 30+ woman came with new symptoms, sent them to CeMCOR to read about perimenopause and to track their cycles with the Daily Perimenopause Diary. A month later they would come back for an appointment with their data from the diary, new knowledge, clearer questions, and feeling empowered by what they’d learned.”
We hope in the future, healthcare providers might send out something to capture information in advance of your appointment, but in the meantime, give the Perimenopause Snapshot or the Daily Perimenopause Diary a try yourself. If you can fill it out and send it to the doctor in advance of your appointment, consider that. We hope it will facilitate greater shared decision-making between you and your provider, a better discussion, and make it more likely that you will stick with the plan you and your provider create.
Each of our journeys to our final menstrual period is different. Some of us arrive there with very little-noticed changes except the absence of a period for 12 months. For others, it can feel like everything has changed and you are not your old self. If you are in this second group and changes begin before you skip a period or have cycles that vary by 7 days in length, know that you are not alone, you are not crazy, and that your healthcare provider may not know to validate your experience. Keep track of your cycles and symptoms, find a provider that specializes in the menopause transition and pre-think your appointments, thereby increasing the chance that you will leave with a plan that works for you. It’s a tricky transition and things are constantly in flux. You will likely need to keep trying things until you find what works for you. Dr. Marcie Richardson really delivers that message in this short video.
References
1. Coslov ND, Richardson MK, Woods NF, Symptom Experience during the Late Reproductive Stage and the Menopausal Transition: Observations from the Women Living Better Survey, Menopause, September 2021. In press.
2. Im EO, Liu Y, Dormire S, Chee W. Menopausal symptom experience: an online forum study. J Adv Nurs. 2008;62(5):541-550. doi:10.1111/j.1365-2648.2008.04624.x
