Portland-born Menopunks movement advocates for better menopause care

The Menopunks movement started as a documentary. The goal was to debunk claims about hormone replacement therapy through interviews with doctors and hear the stories of Portland musicians who have benefited from HRT. But it’s now grown into a broader effort to advocate for more comprehensive and accessible menopause care.

A benefit concert series this weekend aims to raise money for the documentary and awareness around hormonal therapy through a resource fair and panel conversation with doctors and healthcare advocates.

Alicia J Rose is a musician, filmmaker and the founder of Menopunks. Gilly Ann Hanner is a participant in the documentary and a founding member of the band Calamity Jane, which will perform this weekend with both of its founding members for the first time in 35 years. They both join us with more details.

Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.

Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. My next guests are calling for a revolution. They call it Menopunks. It started as a documentary, which spawned a podcast and then a benefit concert this weekend. The goal, though, is consistent: To destroy debunked claims about the dangers of hormone replacement therapy, and to advocate for a more comprehensive and accessible version of menopause care. Or as they put it, “we are turning a whisper network into a scream, shattering decades of misinformation to stage a full throttle hormonal revolution.”

Alicia J Rose is a musician, filmmaker, and one of the founders of Menopunks. Gilly Ann Hanner is featured in the documentary. She’s a founding member of the band Calamity Jane, which will perform at the Menopunks benefit this weekend for the first time in 35 years. They both join us now. It’s great to have both of you on the show.

Alicia J Rose: Thanks for having us.

Gilly Ann Hanner: Thanks for having us, Dave.

Miller: Alicia, I mentioned all these things that now fit under the big Menopunk’s umbrella, but what was the starting point for you?

Rose: Well, the starting point for me was feeling like absolute hot garbage three or four years ago and realizing that the powerhouse individual that I have been and have been known as, I couldn’t participate the way I was. That really began a journey of figuring out how I could feel better, [which] led me to hormone therapy eventually, after being shut down by my doctors. Most people who try to get hormone therapy can relate to that. But eventually, I self-advocated hard enough to finally get hormone therapy.

Then at one point, I was hanging out with Gilly and my friend Jen Sbragia in front of a rock show. We’re all in our 50s and we’re like, “Let’s play shows together. Let’s do this stuff.” I was like, what is going on? Why are we in our 50s doing this? Thirty years ago, we were in our 20s. And I realized, oh, all three of us are actually accessing hormone therapy. That’s an interesting story. So that was the seed that kind of led into everything.

Miller: Gilly, what do you remember about that first conversation?

Hanner: Well, I remember it being right after the election, and we were all pretty depressed. Party Witch, Alicia’s band, had played a show at Books with Pictures, a comic book store in Southeast Portland. It kind of saved me. Music saved me again, and Alicia and I were talking about our whole journey. We’ve known each other for a really long time, been in bands and worked together. We were like, let’s keep doing it, why should we stop?

We did all find out that the reason was because we all had health crises in the last few years before that, where we were unable to perform or we’re in a lot of pain. I was in a lot of pain performing before that, before I got on HRT.

Miller: Alicia mentioned feeling like hot garbage.

Rose: [Laughter] One way to put it.

Miller: So what were you dealing with before you got on hormone replacement therapy?

Hanner: I was having intense joint pain in my knees, hips, in my shoulders, my elbows. I’m also a hairdresser and working was painful. I was playing bass in No. 2, the other band I’m in. We were doing recording and I just was in agony, except for when I was on stage.

Miller: Where you had adrenaline and excitement.

Hanner: Exactly. I felt fine on stage.

Miller: But that was only what, an hour-and-a-half every couple of days?

Hanner: Yeah, no, not even that much. I had digestive issues. I was just weak and skinny, and just felt very old.

Miller: We asked folks on Facebook what information they wished they’d had before going through menopause.

Dunja Marcum wrote: “That your symptoms are real and you don’t have to suffer just because the medical system decided a while ago that menopause was just a thing every woman just has to go through.Thankfully, Gen X is here to shake things up and provide tools to live well through this major life change.”

Adrienne Hass wrote: “There needs to be more education of bone health and regular bone scans beginning, say, at the age of 45, as mammograms and Pap smears are promoted for women’s health. As an invisible disease, it’s really too late once symptoms present.”

Jennifer Hoofard said: “I wish someone had told me about the cognitive effects. I started losing my language retrieval ability, essentially expressive aphasia. My doctor sent me to a speech language pathologist. She didn’t know what to do with me. I pushed for a CT. It was normal. Had neuropsych testing, and it happened during the test: I couldn’t access the name Lewis Carroll as the author of ‘Alice in Wonderland.’ I have a PhD in English. I know who wrote ‘Alice in Wonderland.’ What gives?”

Alicia, you were making some noises through those various comments. What do you notice in these comments?

Rose: Look, the effects of perimenopause and menopause are beyond real. Not only that, they’re mysterious AF. So we go through life thinking, “oh, we’re fine, we know who we are.” Then we hit, sometimes 35, when it can begin. And things start falling apart, and often they’re really unrelated. Like Gilly said, she had digestive issues and joint issues. I was losing my teeth, believe it or not, because it affected my bone health so much. I also had so much joint pain I couldn’t stand for longer than 15 minutes. So it’s hard, I think, to understand that it is perimenopause. As Gen X women or generally just women, we want to just power through. That’s our MO. Let’s get through the day. So what, I feel crappy, it’s just aging.

But what if it’s not? What if actually what we consider to be menopause proper, it is known by doctors, they all know it as a “castration event.” Putting it into perspective that way really changed my mind. I was like, wait, so this isn’t just like me losing some hormones and having some symptoms. This is my body trying to survive without its most life-saving, quality-of-life-enhancing tool.

Miller: What does the word Menopunks mean to you? As opposed to, say, menopausal or perimenopausal women?

Rose: One, I think it really encompasses strength in the journey. But it came from me understanding … One of our participants is Dr. Aoife O’Sullivan. She’s incredible. And she invited me, at the very beginning of the filmmaking process, to something called the Portland Menopause Conference. At that conference, there’s like 200 people. I remember by the end of it, they were radicalizing me and everybody else in the room with the information about the Women’s Health Initiative and the misinformation that was seeded into the world in 2002 about hormone therapy causing breast cancer.

By the end of it, we’re all just like, whoa. It was like the Maxell dude with the wind blowing his hair back for those of us in Gen X that can remember that. We’re just like, what is happening? So you mean there’s misinformation, we’ve been lied to? And at the end of that, 80% of the people in the room raised their hands and said they were doctors or clinicians, and I was like, holy crap. The doctors are as misinformed and confused as the punks. So menopause specialists and punks got smashed together in my ADHD stim brain to Menopunks.

What I didn’t know in the moment was that as soon as I coined that, it became not mine. It became everybody else’s. The minute I started posting as Menopunks, people were like, “yes, I’m a Menopunk!” And I thought, oh my God, have I just accidentally rebranded menopause? [Laughter]

Miller: We’ve talked about this in the past with some doctors and researchers, but it’s been a little while. The fact that the results from this Women’s Health Initiative study were misinterpreted, misread, exaggerated in various ways in terms of the age of the participants, and then the relative risks of cancer as opposed to the actual risk was really trumpeted. Leading, among other things, in a regulatory way to this black box warning of the FDA put on some hormone replacement therapies for menopause.

So what were the results of that misinformation?

Rose: Well, the important thing to know is that it wasn’t some misinterpretation. The actual study itself released results that weren’t erroneous. If you were to go under the hood of the study, it really showed there was a non-statistically significant increase in risk of breast cancer while taking hormone therapy. The other important thing to understand is that this study wasn’t a hormone study. It was a cardiovascular study of postmenopausal women between the ages of 50 and 100 who had cardiovascular risks.

They brought in hormone therapy to basically see if these older women could take it forever, because up to this point in 2002, it was incredibly popular. In 1993, when the Women’s Health Initiative began, 23% of women and people assigned female at birth were utilizing hormone therapy. By 2002, after the regime change had happened – because 1993 was Clinton, 2002 was Bush, 9/11 happened – suddenly it went into a very different direction. They were like, “OK, women should not have access to this.” It was very, very intentional, the way they went about it. They decided to take these far outlying, non-statistically significant results, pull them to the front and go to press with them.

In fact, what was in the Journal of American Medicine didn’t even come into that. That was correct, what was in the JAMA. So it wasn’t a bad study. The results weren’t misinterpreted. We now, after doing research, have figured out that there were some pretty bad actors within the whole scope of the situation who decided to run that in press to achieve the goal, I believe, of systematically, systemically disempowering multiple generations of women – and it worked. We’ve had basically all hormone therapy under black box warnings and under prohibition for over two decades. Which I believe has really just done a number on the boomers, done a number on politics, done a number on culture. And it’s doing a number on Gen X, and we’re trying to stop it.

Miller: We asked folks, again, what information they wish they’d had before they entered perimenopause. A lot of people talked about the challenges in dealing with their own health care providers.

Michelle Downing Barnhart wrote: “I just learned this morning that reflux is associated with menopause. Why didn’t my female mid-50s doctor, who has a certificate on the wall saying she is a menopause expert, tell me this? I’m angry that I’m getting better info from social media than from my doctor.”

Kendall Leeper wrote that she’d wished she’d known that “losing estrogen affects every part of your body, like frozen shoulder, and that more physicians had expertise on the issue.”

Jayne Stravaig Cravens wrote that “most doctors are clueless about menopause and every experience is different.” There are other comments as well.

Gilly, you were nodding here. What experiences did you have in terms of getting menopause-related care yourself from your own doctors?

Hanner: I had a lot of seemingly unrelated – but it’s all related because you’re all in one body – but I had really bad digestive problems. I got endoscopy, colonoscopy, all this stuff, and it was like, well, everything’s OK, sort of. We’re not finding any cause for you not to be able to digest any food, to have lost like 40 pounds and look like you’re just a little skeleton.

Then I just lucked into finding a doctor, Dr. Dana Mozer, who is a friend of mine. She heard about my problems and was like, “Can I help you? Would you come to me and let me try to help you?” Because I was in a band with one of her friends, Neil Gust, and I wasn’t able to show up at practice because I was laying on my side just in misery.

Also my joint pain was so bad I had to stop doing kung fu. I had to stop running. I just was not able to be active. I could barely work as a hairdresser. The doctors I had been going to before were just treating each thing separately. There was no one that said, “oh, maybe your estrogen is so low that everything’s not lubricated in your body.” Dana Mozer suggested that I try HRT, and I was skeptical. I was very much like, “oh, I heard that was bad for you.” And my mom didn’t take it, so I was thinking I would never do that.

She was very knowledgeable and I trusted her. So I tried it and I had really quick results where I started feeling better all around. I’m just so grateful that I found her because my other doctors – who were great doctors – just didn’t suggest it at all.

Miller: Alicia, how much self-advocacy did you have to pursue to get help?

Rose: Well, I am with Kaiser, I’ll just say. My doctor – I will not name names – she said no to me. I went trying to advocate for myself during perimenopause, probably about four years ago, and I was told, “your period’s still happening, so not yet.” And I’m like, but I can’t live with like this many hot flashes and this much pain. And she’s like, “Mm, not suffering enough. Come back later when you’ve suffered a little more and you’re closer to menopause,” and I’m like, what?

But eventually, I basically kind of hacked my way through the system there. I tried all the herbs. I tried all these homeopathic things. Nothing worked. At least, nothing for longer than a day or two. So I decided to just contact telehealth at Kaiser, and I think that’s a thing you can do in general, and I just asked for what I wanted. Once I understood that the magic combination was estradiol and progesterone, and now I’m also utilizing testosterone gel. But those two particular things are the cornerstones of hormone replacement therapy.

I just called telehealth and I was like, “I feel crappy. I want these things.” And they said, “OK.” So I got those things. They weren’t quite right. Then when I went back to my doctor, she’s like, “OK, you’re on them now. How are you feeling?” And I was like, “I’m good, but I don’t feel that great on … ” I didn’t know I was on a synthetic progesterone. She said, “Well, I just took a seminar, so now I know … ” She didn’t know anything before, mind you. They don’t. None of the doctors do. [She said], “Now I know that micronized progesterone is much better for you than medroxyprogesterone.”

Now, here’s the thing that I’ve realized through doing 33 episodes of a podcast, which came as a spin-off of the film … I’ve talked to so many doctors. And those doctors are brilliant, I would trust them. But the problem is they didn’t get the education at all. Almost all of them, including the two heads of Planned Parenthood I just had on the podcast, both of them have said that we had, if lucky, under an hour in their entire education about menopause and perimenopause. I really believe it’s because of the effect of the misinformation that was put into the world in 2002 that effectively erased midlife care for over 20 years.

Miller: I wanna read one more comment we got on Facebook because it gets to some of the intergenerational issues here.

Nicole Lane wrote: “So much, really any [education] was not there. It’s complicated and our moms didn’t tell us about it. Super weird shame stuff, I think. I bring it up in conversation all the time with women and men. That process was not easy for me. For some women, it is. I’m conflicted about HRT. For me, it can’t work. But I’m really glad you’re putting this topic out in the open for a straightforward conversation.”

Gilly, what kinds of conversations are you hoping will come from this movement?

Hanner: At my work, I talk to people. I do hair and a lot of people are in the age range of being perimenopausal or menopausal. So we get to have a lot of like hour long conversations where we talk about symptoms. So many people have frozen shoulder, you mentioned that, like so many people get that. And having osteoporosis, bone health and these things that we all are like, “OK, this is just part of getting older and I guess I just have to suffer through this.”

Just to be able to sort of offer, no, maybe there’s definitely an alternative care that you can feel a lot better, you can be very productive and do things you want to do in your life when you’re … I’m 59 and I’m playing a rock show. I mean, it’s amazing. I hope people can sort of gain a little insight and just feel empowered by it.

Rose: I feel like the thing about menopause … our parents, our mothers knew nothing, and almost all of them will tell you they didn’t go through it, which is absolute BS. Now I’m calling it menopause blindness. Generational menopause blindness. I get it. They had hormones ripped out of their hands. The one thing that could have really given them extended quality of life, that could have avoided dementia, Alzheimer’s, bone or hip replacements, all of that stuff, they had it taken away unceremoniously based on disinformation in 2002. That’s wild. So they were the victims of this crime that occurred, and we are the daughters of the victims of that crime. So why would they know, right?

When you ask about their menopause stories, they’re like, “I don’t remember.” But also they put it out of their memories. It was miserable for most of them. At a certain point, all those symptoms go away. You can live. The problem is your body’s working around not having estrogen, which means that it’s sort of crumbling and falling in on itself. That’s what we consider aging. What if aging didn’t have to be that way? What if the secret, and not even the secret, but what if the way to better, healthier, stronger, smarter, more dynamic aging where we can keep playing concerts and keep being creative – the creative process is a big part of this film as well – is actually through a natural medication that matches what’s in our bodies that’s almost like a vitamin, but was cruelly restricted from our parents and they’re still trying to make it miserable for us? Though the FDA made a big announcement in November, which kind of changed everything.

Miller: Right. Removing that black box warning, saying we made a mistake 23 years ago.

Rose: Yeah, and a mistake is a real … go for it, say mistake. It’s like the estimate of how many women died during that period of time, the low estimate is 100,000 women at least that we know of who died of hormone deficient related illness. The number of women that just suffered and continue to suffer is innumerable.

Miller: Gilly, you’ve been making music your whole life, but Calamity Jane has not. It has been frozen in time for over three decades, until this weekend. What’s it like to be making music again that you wrote in your early 20s?

Hanner: Yeah, it’s intense. It’s really fun. Lisa Koenig is the original drummer. We started the band in 1988 in Olympia and she’s playing again too in another band, so us getting together and playing these songs we wrote together when we were 21, 22, 23, is just electrifying. It’s incredibly exciting. At first, it was like, “oh my God, how am I going to sing like this?” There’s so much energy. I was so energetic and angry. I mean, it does help that what’s happening politically right now is definitely filling me with rage. So it’s a good outlet.

Miller: You have rage and estrogen now.

Hanner: Yes, great combo, great combo. [Laughter]

Rose: Hormonally-optimized rage, it works.

Hanner: But it’s been really awesome playing. Then we’ve got Mandy Morgan, who is a local musician who’s just wonderful, also a Menopunk. She’s playing bass for us because my sister is not able to do it. She lives in Southern Oregon and she’s got stuff going on. But it’s really fun. We just went to Olympia and did a two day practice retreat and we had a great time. So we’re looking forward to it.

Miller: Gilly Ann Hanner and Alicia J Rose, thanks very much.

Rose: Thank you.

Hanner: Thanks for having us.

Miller: Gilly Ann Hanner is a founding member of Calamity Jane, one of the participants in the Menopunkapalooza events that are happening this Friday and Saturday. There’s a lot more information on our website. Alicia J Rose is a musician, a filmmaker and one of the founders of Menopunks.

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