October 20, 2023
Did you know that menopause can sometimes trigger or amplify lupus symptoms? Or that that it’s possible for lupus or your lupus treatments to cause you to start menopause early? Hormonal changes can affect both the progression of lupus and the management of menopausal symptoms.
I’m Dr. Suzanne Gilbert-Lenz, I am a board certified OBGYN menopause expert, and I’m also board certified in integrative and holistic medicine, and I’m really thrilled and honored to be here with the Lupus LA community today to talk about menopause and lupus. I want to start by just getting everybody on the same page, and I want to share with you a little bit about me and my practice and how came to be here with you today. I have had a full spectrum general OBGYN private practice here in Los Angeles, in Beverly Hills for wow, 20 oh my goodness – in June, I guess it was 23 years- which is kind of crazy to me, and as I mentioned, I also have been board certified in integrative and holistic medicine.
Very early on in my practice I became interested in indigenous health practices and specifically in Ayurveda, which is the ancient Indian modality of healing (very similar to Chinese medicine for those of you who are more familiar with that) and I really did it to enhance my own life and my own practice.
But I also was noticing that there were a lot of things that were happening in my practice that weren’t being addressed by conventional medicine. And in retrospect, you understand things better, right? So I think at this point in 2023 we’re a lot more aware of the fact that so many things that happen in women’s bodies, like autoimmune disease, which as you all know, is far more common in women than men) are somehow are mysterious and unaddressed, and we don’t have data, and we’re not really sure. We don’t know why. Hormones, right? There was a lot of that going on, and I think that probably informed my desire to go a little bit deeper. But I also know from practicing for a long time that some of what happens in medicine is not medicine. Or maybe what the medicine is, is the interaction between us. It’s the energy that is exchanged. It’s the creating space for people to have an experience, for people to feel safe, for people to be vulnerable, and for people to feel supported. Community is medicine, and it’s one of my favorite things that I do.
So, those are the things that sort of brought me to this point. My whole story is really, if you really want to read up on me, you can do that elsewhere. I don’t want to waste your precious time talking about me, but I wanted you to understand where I come from, I’m fully grounded in conventional Western medicine and practice in a conventional setting, and I believe in the power of Western medicine. But I also know that it’s a lot bigger than that, and again, I think as a woman who is now in menopause, I really do appreciate and understand this on a whole different level.
I do want to say one thing to you: If you are in the throes of perimenopause, and you are just trying to educate yourself so that you come into this stage of your life with facts, not fear, OR if you are done, and you are in that post-menopausal time, I want you to understand that menopause can be a wonderful gift and should be viewed as a wonderful gift!
When we are going through a transition, it is very stressful and there’s a lot of discomfort and there’s a lot of unpredictability. What I have found is that when people have facts and support, they just do better, which is exactly what the Lupus LA community does for all of you around your lupus. I want to remind you that those powerful medicines are available to you around menopause.
Now, I say this, because as I launch a little bit more into “What is Menopause? What are the terms?” “What are the definitions?” “What are you facing?” so that we’re speaking the same language. and so that you can educate yourself and advocate effectively, I want you to know that one of my biggest lessons in the last five or six years has been in community and community building. I was doing this work and moving more into the menopause space for a long period of time, and it became very evident to me that as a physician working one on one with my patients, I wasn’t going to be able to give you the information you needed in an encounter in the office. It just was not possible. There were a lot of questions, a lot of misinformation, a lot of fear, and a lot of concern that wasn’t being addressed.
So I created something called “Menopause Bootcamp,” and I was doing these Menopause bootcamps leading up to the pandemic. They were two to four hour sessions where we would really sit down and have the time to go through all this information that we’re talking about to make sure people understand what the tools are. And my toolkit, as I mentioned, is a little wider and deeper. So here, this is what hormone therapy is, this is what it could look like. This is why it is safe and more safe than you thought, and hopefully you all have been following along in the New York Times because there’s been a lot of information about dispelling fears, but also, here are the lifestyle options, here are the stress management tools, here are the pillars of health from the Ayurvedic perspective. Here are the plant based herbal medicines. Here are other things that have good data, no data, poor data to support their use in this journey – because it is a journey.
I thought people were coming for the education, but what I realized very quickly was that we were all leaving with community and not to beat a dead horse, but I really had a powerful lesson for myself personally in seeing that one of the most healing components of the Menopause Bootcamp was the community support that we create. So I want you to understand that there are a lot of tools here that you can use for your personal health, but also for community health, and that is really what I have found to be the most powerful medicine of all. So let’s just get down to some brass tacks and get some definitions out there for you!
What is Menopause?
One of the biggest confusions I see is in terminology, the word menopause itself is becoming meaningless in many ways because nobody knows exactly what it means. So I’m going to tell you what it means. First of all, I may surprise you by letting you know that menopause is one day of your life.
That’s right. Menopause is the day that you have reached twelve consecutive months without a menstrual bleed between the ages of 45 and 55 for no other medical reasons. So you didn’t have a surgery that rendered you menopausal. Your uterus wasn’t removed or your ovaries weren’t removed. You didn’t have chemotherapy, you are not in a major flare, or on so many meds that your cycle has been suppressed either intentionally or unintentionally. We know that the reason in that age group that I mentioned most frequently is just physiology, because menopause is not a disease. It is a physiologic experience.
It is a developmental phase much akin to puberty, and so if you feel a little crazy going into it, kind of like anybody in puberty does, that may help you understand what’s going on. So Menopause is just that one day you don’t know you’re there until you’re there. It’s almost like a retrospective situation.
What is Perimenopause?
Perimenopause is the time leading up to menopause. And I think what’s going on right now in the culture is as we are having more conversations, which I welcome and I’m so glad, but the word menopause is being used to sort of “blanket” everything. And while it is not technically or medically correct, I don’t really care. I want people to be out there getting information. But just understand that if you’re confused by the terms, it’s because they are usually being used in a confusing way.
Perimenopause is really, I think, what people are talking about, or the menopausal transition, and that is that time, two to ten or more years leading up to that day of menopause, where so many fluctuations in your hormones and your experience in your body are occurring, you feel very unwell, and we’ll discuss a little bit more about how that affects people with autoimmune disorders and lupus specifically in a moment. That “peri” term is just a Latin term for the time surrounding or leading up to postmenopause is the rest of your life.
So you have that special menopause day, and anybody who follows me online saw that I actually posted my menopause date literally just happened almost exactly a month ago, which I was excited about. I hope you can learn to become excited about these things. Postmenopauses the rest of your life and since the average age of menopause in North America is about 51 or 52, and the average lifespan of the American or North American woman is into her early or mid 80s, that is a huge portion of time.
That is a good third to a half of your lifespan, which is another reason why ignoring this is very, very dangerous at a minimum, and just not nice. Because this is a huge part of who we are. We are not just our periods or a reproductive life. Trying to not reproduce, trying to reproduce. This is not who we are. This is a time in some of our lives – the rest of it – how are we going to thrive through it? How are we going to survive through the difficult parts? So that’s what I like to focus on.
Menopause and Lupus:
I want to talk a little bit about the specifics of how people with lupus are experiencing menopause and how menopause has an impact on lupus. I actually have a reading list (PubMed stuff, and it’s scientific literature, linked below). I want people to be able to be armed with data if they are interested in that, because that is the basis for the conversation that I want to have with you here. I always want to be based in reality and science. Empiric conventional science does not cover every thing, but it is an important way that we should be talking to each other so that we’re making decisions that have some evidence to support their efficacy, their outcomes and their safety.
We know, as I already mentioned, and you all obviously know all this, but the vast majority of people who are diagnosed with lupus are women. And we do know that menopause and perimenopause have a serious impact on the experience of lupus, primarily in flares. So any of you who have noticed that you seem to flare with your menstrual cycle with pregnancies, if you’ve had pregnancies, and that you have had a different experience of your lupus, that is not just your experience.
That is noted in the scientific literature, and I have seen that as a physician practicing for over 20 years, very, very clearly, the old rule with autoimmune disorders in pregnancy was always that a third get better, a third get worse, a third stay the same. Which is absurd, right? But my experience, in general, has been that the vast majority of my patients during a pregnancy will get much better. Why is that? Because they are not having a monthly cycle and the up and down fluctuations, even when it is predictable, will often cause flares. So that is why many of you may have noticed that if you’re on some kind of suppression, whether it’s a hormonal contraception or other medicines, that you will get it into a steady state, and you can be dealing with the lupus in and of itself without the flares that are superimposed by the menstrual cycle. Well, knowing what we know now about what happens in perimenopause, where you’re winding down for your ovarian function and those cycles are less predictable, we know that in general, across the board, that unpredictability creates an inflammatory response.
Estrogen, Menopause and Lupus Disease Activity:
We also know very clearly that estrogen mediates inflammation. Estrogen at an optimal level will diminish inflammation. When it’s too high, it can increase inflammation. And this is why we see that perimenopause can be a very, very difficult time for people with lupus, and other autoimmune disorders. So where does that lead us? Some of the data that I read showed that the time of your life in which you are diagnosed with lupus, we know has a long term impact on your health. Obviously, the way your lupus is managed and how successfully your management strategies work to decrease your long term health problems related to lupus will have an impact on your health as well. But it seems that women who are diagnosed much earlier in life, not surprisingly, may have a more difficult time at their menopause.
The other thing that is very interesting is there’s definitely an uptick in midlife women who get diagnosed with autoimmune disorders in general and with lupus specifically. These women, when their menopause is well controlled, seem to have flares, but those flares are less severe than their cohorts who have had menopause or longer standing lupus, or a more difficult time controlling lupus. This all seems like common sense, right? But the medical literature reflects these conclusions that I’ve come to clinically in my practice. The other thing that’s very, very important to note is that many of you, and perhaps most of you, are candidates for hormone replacement therapy.
Those of you who have very high risk factors or who have had blood clots as a part of your lupus are a separate conversation. But in general, as I discussed, because of the fluctuations in your hormones, flattening out those fluctuations with continuous hormone therapy. So estradiol and progesterone, if you have a uterus, will make those flares much less prominent and could potentially decrease or make those flares go away.
So it is very important to understand that the hormone therapy can be having an impact not only on the symptoms that you might be having. Classic symptoms of hot flashes and sleep disruption and vaginal dryness and brain fog and joint pain and fatigue, but that they may actually positively impact the course of your lupus by decreasing the number of flares.
How can you tell the difference between menopause, perimenopause and a lupus flare?
It’s pretty hard to tell. Your rheumatologist, of course, should be involved and there are certain markers that they’re going to be looking for that will fluctuate that may be innately due to a lupus flare. But, of course, estrogen’s fluctuations will have an impact as well. And just a note here, there aren’t lab tests that we do to diagnose perimenopause because, as I noted, it is a normal physiologic event. There are no reference ranges. It is a clinical experience. So you’re not always going to be able to distinguish between perimenopause and a lupus flare, but what I can tell you, is that treating the perimenopause is more than likely going to positively impact your day to day experience as a human being who is getting closer to menopause and who has lupus. I think that it’s really important to not be in fear and make the assumption, wrongly, that you can’t be treated for your menopausal symptoms, that it will somehow have a negative impact on your lupus.
I think my experience here in the Los Angeles community is that we work very closely with our rheumatologists. They’re very well educated and they are really team players. If you are having an issue that you feel requires better operation, make sure you have a conversation with your rheumatologist and with whoever’s treating your menopause. Hopefully it’s a menopause expert like me so that you guys can coordinate care, and get the best options available and be flexible, because things may really change during this period of time. What we see clinically and the literature again supports this, is that once you get into that steady state, no more fluctuations, no more periods – ovarian hormones are low and steady – a lot of times you’re going to feel a lot better, the flares are going to go away, and now you can just deal with the rest of your life.
There are it’s a lot of information in a very short period of time, but hopefully it gave you sort of a flavor for what’s to come or where you are, how to unpack the health impacts, and what tools are available to you. I would love to spend time on the less conventional lifestyle and herbal things, but there’s only so many moments in this talk. But I would direct you to my book and my social media where I talk a lot about those things. If you are not availing yourself of the lifestyle management options that all of us should be looking at, and that is:
I like to call this the essence of self care. These are at least five of them. Sex and spirituality are on those lists as well. These are things that we all should be trying to practice and bring into our lives on a daily basis. They have actual health benefits and they are evidence based practices, but they also just make sense in our hearts, right? So I’m going to leave you with that.
Q: What can someone with lupus expect menopause to be like? Is it worse for us?
I sort of touched on this in the conversation, but not necessarily. In fact, if we’re talking about menopause and post menopause, a lot of times it’s going to be better. But that is if you are being managed appropriately. So, if you have decided or you have been told that you have to “white knuckle it” and just kind of “get through it,” a lot of the symptoms of the menopausal transition and lupus really overlap. So things like joint pain, fatigue, and brain fog (in particular) are going to get worse if they’re not treated. So I do think that menopause can represent a huge relief because once you get through those fluctuations, you’re going to feel a lot better.
I’m not making a blanket statement that everybody should be on hormones, because I don’t think that’s true. But I think that if hormones have been helpful to you in that transition, I would seriously consider doing them for a period of time.
Q: How long should we be on hormone therapy for menopause?
There is no data showing that you have to come off. So, this is an ongoing conversation, but my long-winded response here is that I actually believe that people with lupus will probably feel better once they’re done with that transitional part of the time.
Q: I’m going through perimenopause. Why do my lupus flares often cause major anxiety attacks?
That is really interesting. So we do see a big uptick in specifically anxiety and panic as a new mood symptom or a symptom that people may had as a minor thing earlier in life. Like maybe you had PMS, maybe if you were pregnant, you had postpartum mood issues. Anxiety can be a big one, not just depression. So if you’ve had those experiences in your life, the chances the likelihood of you having perimenopausal mood issues is much, much greater. So it’s interesting. Perhaps this particular person’s flares are really perimenopausal symptoms, or as I mentioned, perimenopause superimposed on the lupus, either increasing the flare or as a response to the flare. So I think that is a really important time to be looking at whether or not hormone therapy would be appropriate, because I do see often this is a time of life where a lot of women end up on mood meds. I’m not against mood meds. I’m not against Prozac or Wellbutrin or Lexapro, as long as the person has been given the full breadth of options, because sometimes it’s really hormones. I have had patients in my office often who start on mood meds by their well-meaning primary care docs and they come in, they have really no history prior and we get them on the appropriate hormone therapy and they don’t really need their mood meds.
Again, I don’t want everybody to go out and throw their Lexapro out, right? And I don’t want everybody to be like, “forget my Rheumatologist, I’m heading to Dr. Gilbert Lens” – this is a team sport. But I’m not surprised by that, and I think that these anxiety attacks may be part of your perimenopause. The other thing to note is that there is a lot of evidence showing that hot flashes and mood symptoms can be correlated in this time of life. That is a very important thing to pay attention to. First of all, you deserve to be treated because you don’t need to be suffering. No one’s giving you a medal, right? But also, that can be a harbinger for other heart issues, and you probably have an increased risk of heart disease and we know that some versions of lupus also increase your risk of heart disease. So again, I’m not saying this to care you, but to educate you. Don’t ignore this.
Q: What can we do to prepare for menopause in advance so that it goes more smoothly? Are there any supplements that help with these symptoms?
Well, the most important supplement is education. And sure, pptimizing your general health is important. That’s straight up for everybody:
General good health going into menopause is your best bet. Having these conversations, understanding that things are going to change and change and change and change, and try not to freak out with every change, but have the support. I do think that there are better books out there for the lay public than there were even two to three years ago. I mean, obviously I like my book, but I’m not the only person who’s written a book. Mary Claire Haver is a wonderful gynecologist to follow. I think Jen Gunter’s books are far more conservative and a little more narrow than mine are, but they’re medically sound. So these are all opportunities to prepare yourself and create a bootcamp. Have the support system.
Q: Is there a diet that can help with preparing for menopause? Is there a specific diet that you often recommend to clients?
There’s not a one size fits all. That’s just not a thing. I mean, there’s generic things like we talked about, like good nutrition, plants first. A plant-forward diet for minerals, vitamins, blood sugar control, fiber. I’m not against animal protein. I don’t think that everybody should be keto or everybody should be vegan for health. I think that we don’t all respond the same way. But again, I think this idea that there’s going to be a prescription that I can give you, and this is the list and these are the things, and everybody go do it – I wish it was that easy. It isn’t that easy. But the basic lifestyle components that we talked about, including eating in a way that is joyful enjoying your food. I mean, I think everybody kind of knows at this point, I’m not against carbs, but a lot of sugar, alcohol – they’re not good for you. They’re just not. Alcohol, specifically for women, it’s just not good for you. So if you’re going to have a cocktail, a glass of wine, champagne, whatever it is, it’s a special occasion, just know that you’re going to pay for it. You know what I mean? And maybe give yourself a break with that as well. Because we’re not perfect. We’re human beings.
I want the people in this community to not feel sidelined, ignored or gaslit because there are so many tools available to you. And one of the tools that you have that often the random person without lupus doesn’t have – is community. So resources like this are so powerful. Make sure that you’re talking to each other, that you’re finding a group of people that you trust and know that that is really going to help you. And Menopause is not the end. It is a new beginning. It could be the best part of your life. So I want to hear back from others and see if they feel the same way!
To read additional Lupus and Menopause resources (referenced by Dr. Suzanne), please visit:
To learn about Dr. Suzanne Gilberg-Lenz, visit: https://thedrsuzanne.com
To learn about her book, MENOPAUSE BOOTCAMP, visit: https://themenopausebootcamp.com
To view Lupus LA’s Global Virtual Support Group Sessions, visit lupusal.org/supportgroups
To join Lupus LA’s Private Patient Community on Facebook, visit facebook.com/groups/lupusla