Twenty-one women (25.6%), from among this larger study of 82 participants, reported having ever used compounded hormone therapy. Of these, eleven women (52.4%) were currently using CBHT, while ten (47.6%) were former users. While many other participants expressed interest in CBHT, our analysis focuses on the experiences and rationales of the 21 women who had actually used it. Table
1 summarizes the demographic characteristics of women in this subsample. Table
2 provides details about each participant. Compared to the larger study, the women using CBHT in this study were overwhelmingly well-educated and professional women, and they were active participants in their menopause-related information seeking and decision-making. Like the women seeking menopausal treatment in the overall study, those choosing CBHT said that the symptoms of menopause were disrupting their personal or professional lives. CBHT users, in particular, highlighted the value of managing their symptoms for their quality of life and for their ability to function with minimal disruption. It is important to note, however, that many women in the broader sample described experiencing only minor or intermittent menopausal symptoms that did not disrupt their lives in substantial ways.
Table 1
Summary demographics of sub-sample of current and former CBHT users
Menopausal Status | 9 postmenopausal | 6 postmenopausal |
2 perimenopausal | 3 perimenopausal |
| 1 hysterectomy |
Age | 49–63 (median 54) | 39–63 (median 54.5) |
Race/Ethnicity | 10 white | 8 white |
1 African-American | 1 African-American |
| 1 Latina |
Table 2
Participant Characteristics
Current CBHT Users | Liz | white | Teacher | Bachelors Degree | Perimenopause | Never | Current | CNM | E & P | 2 months | Trusted health care providers. Internet. Health food stores. Books (Christiane Northrup). | n/a |
Francis | white | Therapist | Bachelors Degree | Postmenopause | Never | Current | MD; Nurse Practitioner | E, P, DHEA | Several years | Social and professional networks. | n/a |
Kristina | white | Unemployed | Graduate Degree | Postmenopause | Never | Current | CNM | P | 6–7 years | Health care provider. Books (Susun Weed) | n/a |
Deborah | white | Preschool Director | Bachelors Degree | Perimenopause | Never | Never | Naturopath | E & P | 2 years | Friends. Trusted health care provider. Books. Health seminars. Media. Health food stores. | n/a |
Bev | white | Certified Nurse Midwife | Graduate Degree | Postmenopause | Never | Prior | Self (CNM) | E & P | 6 wks | Media. Medical journals. Friends. Other health care professionals. | n/a |
Dorothy | white | Manager | High School | Postmenopause | Never | Prior | MD | E, P, T, DHEA | 6–7 years | Friends. Health food store. | n/a |
Edria | African-American | Retired (researcher) | Graduate Degree | Postmenopause | Never | Prior | MD | E & P | 1 year | Medical literature. | n/a |
Sydney | white | Self-employed | Graduate Degree | Postmenopause | Prior | Current | MD | E, P, T | Several years | Internet. Podcasts. Friends. Health care providers. | n/a |
Sandra | white | Substitute Teacher | Graduate Degree | Postmenopause | Prior | Prior | MD (menopause specialist) | T (also using FDA-approved E & P) | 6 months | Books. Internet. Friends. | n/a |
Peg | white | Physical Therapist | Bachelors Degree | Postmenopause | Prior | Prior | Naturopath | E & P | 12 years | Friends. Books (Northrup). Media. | n/a |
Ann | white | Fitness Instructor | Some College | Postmenopause | Never | Prior | MD (anti-aging specialist) | E, P, T, DHEA | 1.5 years | Internet. Friends. Health care providers. | n/a |
Former CBHT Users | Kris | white | Self-employed | Graduate Degree | Hysterectomy | Current: FDA-approved BHT | Prior | MD | P | Several years | Internet. | Ineffective; Concern about risk of HT |
Mary | white | PhD researcher | Graduate Degree | Postmenopause | Never | Current | MD | P (also has unfilled Rx for T) | Briefly | Internet. Doctor. | Ineffective; Switched to herbal Progesterone cream. |
Rebecca | white | Retail | Bachelors Degree | Postmenopause | Never | Current | Nurse Practitioner | E & P | 1 year | Health food store. Books (Weed). | Negative side effects - stomach, skin, HPV diagnosis |
Joan | white | Behavioral Health Counselor | Graduate Degree | Postmenopause | Never | Never | MD | E & P | 1–2 years | Health professionals. Friends. Partner. | Concern about risk of HT |
Sheree | African-American | City Government | Some College | Postmenopause | Never | Never | MD (women’s health specialist) | P | 1.5 years | Friends. Critical reading of medical literature. | Symptoms abated; did not refill Rx |
Patsy | white | Retired (nurse) | Graduate Degree | Postmenopause | Never | Never | Internet provider | E & P | 5 years | Internet. Books (Northrup). | Concern about risk of HT |
Karen | white | Naturopath | Graduate Degree | Postmenopause | Never | Prior | Self (Naturopath) | E & P | 3 wks | Internet (WebMD, Mayo Clinic). Medical journals. Medical conferences. Friends. | Negative side effects - lightheadedness |
Patricia | Latina | Federal Investigator | Some College | Perimenopause | Never | Prior | Naturopath | E & P | 4 months | Health care providers. Media. | Negative side effects - weight gain, breast tenderness |
Susan | white | Professor | Graduate Degree | Perimenopause | Never | Prior | MD | E & P | Several months | Internet. Friends. Sister. | Symptoms abated; did not refill Rx |
Kathleen | white | Self-employed | Graduate Degree | Perimenopause | Never | Prior | Naturopath | P | Several months | Internet. Books (Northrup). | Ineffective |
Although women’s individual motivations varied, several themes emerged across CBHT users that can broadly be categorized into two overarching categories: (1) “push motivations” that drove women away from conventional hormone therapy or from alternative therapies (e.g., herbal and dietary supplements), and (2) “pull motivations” that attracted women to compounded hormone therapy, in particular. Table
3 summarizes the key “push” and “pull” motivations voiced by the current and former CBHT users in this study, and their frequency based on number of participants [
78]. In the following section, we discuss each of these themes, and illustrate with exemplar quotations from interviews and focus groups.
Table 3
Summary and frequency (based on number of participants) of motivations for using CBHT
Push away from conventional therapies |
Fear and uncertainty about the safety of HT | 17 (80.9%) |
Distaste for conjugated estrogens, in particular | 10 (47.6%) |
Distrust of biomedicine and the pharmaceutical industry | 20 (95.2%) |
Push away from alternative therapies |
Ineffective symptom management | 13 (61.9%) |
Pull toward CBHT |
Effective symptom management | 16 (76.2%) |
Perception that CBHT is “safer” than conventional HT | 16 (76.2%) |
Desire for individualized treatment | 12 (57.1%) |
Enhanced clinical experience | 13 (61.9%) |
Push away from conventional therapies
To some degree, every one of the 21 current and former CBHT users in this study expressed distrust and frustration with the mainstream medical approach to managing menopause. Many framed their use of CBHT in terms of an express desire to avoid conventional hormonal approaches based on three key themes: (1) fear and uncertainty about the safety of conventional HT; (2) a strong aversion to conjugated estrogens in particular, and (3) and overarching distrust of a medical system that they perceived to be dismissive of their concerns and overly reliant on pharmaceuticals in place of greater clinical attention.
(1) Fear and uncertainty about the safety of HT
Seventeen (80.9%) of the 21 current or former CBHT users described their treatment decision within the context of fear or uncertainty about the safety of conventional (manufactured and FDA-approved) hormone therapy. Like those in the overall study, many women choosing CBHT were concerned about the safety of HT, and WHI results confirmed those fears. Susan,
3 a 56-year-old professor who sought CBHT from her gynecologist for a short period of time when she started experiencing more intense and more frequent hot flashes, put it this way:
Nothing was bad enough to want me to go to take HRT [hormone replacement therapy], or even consider [it]. … I knew several women who were on it. And I know people who are still on it, who are starting on it and taking it. But I never really, even if I had really bad symptoms, I don’t think I would have rushed for HRT. Just because of my thoughts about biomedicine. And especially natural biological processes, I am not sure that we need to change them.
Like other women in this study, Susan suggests that she was never inclined to seek out conventional HT to manage menopausal symptoms, and media coverage of conventional HT reinforced this belief.
Many CBHT users specifically mentioned increased cancer risk as a reason to avoid conventional HT. This concern stemmed from the media attention to increased rates of breast cancer among HT users, the FDA’s “boxed warning” required for estrogen products, and the overall salience of breast cancer as a major health risk for women beginning in midlife. For example, Patricia, a 54-year-old federal employee who used compounded estrogen and progesterone lozenges for about 4 months, explained, “the [symptoms of menopause] for me have not been severe enough to the point where I would consider taking hormone supplements on a regular basis. Because I don’t, I don’t trust the side effects. The risk of the damage I don’t think outweighs the benefit.” When we follow-up on this point, she continues, “I have personally avoided the synthetic hormones because of the side effects for cancer. And sought the bioidentical in as low a strength as I could have compounded.”
(2) Distaste for conjugated estrogens, in particular
Although many of the CBHT users in this study categorically ruled out using manufactured HT, nearly half (10 participants, 47.6% of CBHT users) singled out conjugated estrogens (CE) by brand name: Wyeth products Premarin (CE) and Prempro (CE and medroxyprogesterone acetate). In fact, many CBHT users referenced these
equine-sourced products as way to differentiate conventional, manufactured HT from the CBHT they used. Consider the following focus group conversation between Dorothy, a 61-year-old postmenopausal registered nurse, and Lisa, a 49-year-old manager just entering perimenopause.
DOROTHY: Well, I make a big distinction between the compounding, that’s not made from Premarin, it’s not made from mare urine, versus the pharmaceutical. And it’s very different, very different base, so I’m not afraid of that -- whereas I never wanted to go on the other, and refused for years to go on anything.
LISA: So, what’s the difference between them?
DOROTHY: Well, the base is just entirely different. It has nothing to do with animals whatsoever. […].
[T]he pharmaceutical ones that you would get from a regular gynecologist who just sends you to the regular pharmacy, are made from mare urine and all kinds of different things. And, not just for the conditions of the animals, is one reason I refuse, but also because the side effects are so much more horrendous.
As this exchange illustrates, for some women, CE becomes a symbol of all they perceive to be wrong with conventional HT—from its animal source, which carries both a visceral disgust and concern about animal cruelty, to its questionable safety and side effects. Further, by focusing their concerns about HT on their particular distaste for and avoidance of CE, women are able to make a distinction between conventional HT and the CBHT they use.
(3) Distrust of biomedicine and the pharmaceutical industry
Nearly every CBHT user in this study (20 women; 95.2% of CBHT users) expressed frustration and distrust toward biomedicine or the pharmaceutical industry that shaped their overall desire to avoid conventional HT. In particular, CBHT users in this study describe feeling like women had been repeatedly misled by a pharmaceutical industry that promoted HT as the route to longer, healthier, more youthful lives Bev, a 49-year-old certified nurse midwife who prescribes CBHT and uses it herself, put it this way:
It makes me really angry that they’ve pushed hormones for so long. I mean, for 30 years. And they touted it as “you must be young forever.” I think it had a lot to do with the way our culture is biased, maybe more now—much more now—against aging. And then they find out, “Oop! We were wrong!” It just pisses me off. It … confuses and frustrates me when they have conflicting things—three or four articles in a week that say different things. If I can’t sort it out, how can the rest of the world? It’s very frustrating. Get it together. Figure it out.
Although uncertainties are ever-present in medicine, these women express aggravation with a pharmaceutical industry that many feel has tirelessly promoted HT to women despite real concerns about its safety.
Other participants asserted strong critiques of an overly-interventionist medical system, too heavily dependent on pharmaceuticals as a “quick fix.” Embedded in this critique was the perception that many clinicians were too ready to prescribe conventional HT, rather than work more collaboratively with patients to identify a treatment approach that would effectively manage their symptoms in ways aligned with their overall approach to health and wellness. Women described being disappointed by clinicians who they felt were dismissive of their experiences, the particularities of their treatments goals, and their ongoing uncertainty about whether the risks of HT outweighed the clinical benefits. Sandra, a 50-year-old, highly educated immigrant to the U.S., had spent several thousands of dollars out-of-pocket seeking the “right” treatment for her menopausal symptoms. She says, “So, the health professionals, I’m not very happy with they way they’re doing it right now. I mean, all they do [is] give you medications and go, ‘Come back and see how you feel.’” Instead, Sandra says she’s looking for a clinician who considers her as an individual. She continues:
[My doctor], she’s really knowledgeable, but she’s not listening to what I want from her, and I emphasize, you know, what my lifestyle is. She doesn’t consider my lifestyle to what she prescribes to me. … She’s got a certain line of medication, and she prescribes that to every patient. She doesn’t change her therapy for different patients, I think.
Finally, several participants suggested that clinicians’ dismissal of women’s concerns and their reliance on pharmaceuticals should be understood as implicit gender-bias or racial-/ethnic-bias in health care. Peg, a 61-year-old physical therapist, who had been using CBHT for twelve years at the time of our interview, emphasized the relationship between implicit gender bias in medicine and the necessity for self-advocacy, saying:
I try to be as informed as I can, cuz I don’t trust the medical field to be informed... And I don’t trust them to necessarily care—unless I know the doctor personally, and I know that they’re really intelligent, and that they really have integrity. Cuz a lot of them will throw anything at you. And in this culture, they will still do it to women way, way, way more than men. And I work in medicine, and I know that.
Sheree, a 58-year-old working in city government, focused on implicit racial bias and its consequences for the quality of care for women of color. She explained:
The healthcare system creates doctors who have an arrogance about them, and so that arrogance translates into patient care. … [Substandard care] happens all the time, and that has to do with the arrogance. But also being a woman of color, racism is so ingrained, it is so innate, that a lot of times, people don’t even realize that they’re operating from that basis, because it is so much a part of who they are and their frame of reference. It’s just what they do.
The critiques levied by women like Peg and Sheree were not specific to HT, but they signified an overall mistrust of the medical system that has tangible effects on women’s willingness to seek care and trust the recommendations coming through conventional channels.
Although the particular critiques differed, nearly every woman who used CBHT in this study expressed some level of distrust and frustration aimed at clinicians, the broader medical system, or the pharmaceutical industry. Some of this frustration stemmed from ongoing uncertainties about the risk of HT, but they also voiced broader frustrations—about a medical system too quick to dismiss women’s concerns and resort to pharmaceuticals, thus serving up massive profits for the pharmaceutical industry. Together, women’s distrust of the medical system, along with their particular concerns about the safety of conventional HT, and distaste for CE in particular, provide a very strong motivation pushing them away from conventional HT—thus driving them to seek an alternative.
Push away from alternative therapies
Widely available over the counter, dietary supplements like soy, red clover, and black cohosh are a convenient alternative for women seeking to avoid conventional HT; nevertheless, for the most part, these products have not proven themselves efficacious in clinical trials [
79,
80]. Eighty-one percent of the CBHT users (17 of 21) in this study reported trying dietary supplements at some point to manage symptoms they associated with menopause. Many said that specific herbal or soy supplements (with brand names such as Remifemin or Estroven) had been recommended to them by their health care providers, while others reported receiving recommendations from friends or media sources, or reading the labels to find products to fit their needs. Like others who use dietary supplements [
81], many women in this study described supplements as more “natural” than pharmaceuticals, and thus perceived them to be safer. Sandra, who tried black cohosh during her search for the right treatment, put it this way, “I tried it. I tried it before I [went] on hormone therapy. Didn’t like it much. I don’t know about the safety of it, but it’s an herb, so very safe. …It didn’t work.”
However, like Sandra, many participants did not find long-term symptom relief from dietary supplements, and this pushed them to seek CBHT as a more effective alternative. For example, when Patricia first began experiencing symptoms early in her perimenopause, she tried a number of over-the-counter herbal supplements on the recommendation of a friend. When we asked her to tell us about that experience, she said, “I didn’t notice any positive effects with them. I didn’t have any negative effects but as far as assisting … the hot flashes during the day and the night sweats, they didn’t help at all.”
Patricia’s response was typical of the CBHT users in this study, many of whom had tried dietary supplements out of a desire to avoid hormones but eventually sought out CBHT as a more effective intervention. Thus herbal and dietary supplements, can begin as a kind of “pull” toward something perceived to be more “natural,” safer, convenient, and less expensive than biomedical and pharmaceutical interventions. However, if they do not provide adequate relief for menopausal symptoms, they become their own “push” motivation—away from an ineffective treatment and toward a treatment similarly framed as “natural” and often perceived as safer, yet something certainly more effective for symptom management: CBHT.
Pull toward CBHT
It is within the context of the “push” motivations discussed above that participants framed their attraction to CBHT. In short, for many of the CBHT users in this study, CBHT represented a therapeutic approach that was both mainstream and alternative. Four key themes emerged in the way women characterized their attraction to CBHT: (1) it is effective in managing their menopausal symptoms, (2) they perceive it to be “safer” than conventional HT, (3) it is tailored to their individual bodies and needs, and (4) it was accompanied by enhanced clinical care and attention.
(1) Effective symptom management
A key draw for CBHT users was simply that it worked. As a hormonal approach, most women found that CBHT was effective in managing their menopausal symptoms. Although a large number of women in the overall research project were able to weather menopausal symptoms without hormones, other women—including those using CBHT—found their symptoms disruptive enough that they actively sought remedy. And for those who wanted to avoid conventional HT, finding a way to effectively manage disruptive symptoms was no easy task. Over three-quarters of the CBHT users in this study (16 out of 21; 76.2%) emphasized that one of their primary reasons for using CBHT was that was effective in managing the symptoms they associated with menopause, where lifestyle approaches, herbal remedies, and sometimes other pharmaceuticals fell short.
For example, in an effort to manage the symptoms she associates with menopause, including hot flashes, short-term memory loss, and insomnia, Peg tried a number of over-the-counter products, including hormonal creams, Black Cohosh dietary supplements, and soy products. She also tried CE—despite a strong aversion to the very idea. Both the soy and the conventional HT made her sick, and nothing alleviated her symptoms. Eventually, Peg found a naturopathic physician who prescribed CBHT. Within a week, Peg felt that her symptoms were manageable: her short-term memory improved, her sleep improved, she felt calmer, and she regained bladder control. She’s been on the same dose ever since—for the last twelve years. Peg says that she’s “afraid to try anything else because this works.” At the end of the interview, when we asked what helped her best cope with menopause, Peg says, “the natural hormones!” She continues, “Without them, I think I’d be dead. I mean, I’m not kidding. I really don’t think I’d be alive. I think I’da become so psycho from not sleeping, my brain might’ve exploded, or I might’ve thrown myself in front of a truck, I don’t know.”
Similarly, Deborah, a 53-year-old pre-school teacher in perimenopause, describes her transition to menopause as a “scary time” marked by a number of physical and emotional symptoms, including anxiety, memory loss, insomnia, and night sweats that made her worry that something was “seriously” wrong with her. She says,
I mean, I was depressed for a couple months. I was like, “This isn’t me. This isn’t me. This isn’t who I am. I’ve never been like this.” But once [my naturopathic physician] started me on the [CBHT], the very next day I felt better. It was just like the cloud had lifted. It was amazing. And I don’t think it was in my head, either. I’d been so, just like, [sharp intake of breath] and I had energy and I was happy.
In short, for women like Peg and Deborah, who are facing severe symptoms they associate with menopause yet wish to avoid conventional HT, CBHT becomes a compelling approach to treatment because, as a form of hormone therapy, it is very effective.
(2) Perception that CBHT is ‘safer’ than conventional HT
Over three quarters of the CBHT users in this study (16; 76.2%) described CBHT as safer than conventional HT. The remainder either characterized the safety as equivocal, or did not make any statements about safety. No one characterized CBHT as less safe than conventional HT. Participants based this perception on a couple of key qualities of CBHT: (a) because it is plant-based, it is “natural”; (b) because it is “bioidentical,” it is a more precise chemical match to their bodies’ endogenous hormones; and (c) because it is tailored to their individual needs, they could use the lowest dose possible to achieve their treatment goals.
Ann best illustrates this perception—and how this pull motivation is embedded in the push motivations discussed above. When describing her experience of perimenopause, Ann described experiencing hot flashes, heavy bleeding, and most significantly, insomnia. Because of her work as a fitness instructor, Ann feels a responsibility to keep her body fit as she ages—for her business, but also because she is a role model for her clients who are aging along side her. Nevertheless, she entered perimenopause with a positive attitude, “I figured, ah, it’s not gonna be such a big deal, and it wasn’t until the lack of sleep … because when you don’t sleep, you’re really cranky.” In response, she tried several herbal and soy supplements, which she says “worked for a while, probably.” Finally, she says, “the lack of sleep … that was what prompted me to seek other treatments.” She continues:
I knew I didn’t wanna take chemical hormones, you know, and so some friends of mine were telling me that they were taking the bioidentical hormones, and you know, so I started researching it online, and reading books, … and you know, I know hormones are hormones, but it just seemed to me that if you could take something that was plant-based and more easily recognized by your body, that that would be a safer alternative.
Here, Ann echoes the push motivations discussed above: dissatisfaction with alternative therapies and a desire to avoid conventional HT. She worked with a local physician specializing in “anti-aging” medicine, and takes a compounded regimen of estrogen troches, progesterone pills, and DHEA and testosterone cream. Although she recognizes that “hormones are hormones,” she believes that CBHT might be “a safer alternative” because it is “plant-based and more easily recognized by your body.” When we follow up on this point, Ann indexes the idea that her compounded regimen is safer because it is a closer chemical match to her body’s endogenous hormones. She says, “Well, the way I understand it is that it’s plant based and that it seems to be identical to the hormones that your body produces, or at least that’s the way that your body recognizes it.”
Nevertheless, it is important to point out that Ann—like several of the CBHT users in this study—is not uncritically confident about the safety of CBHT. She continues, “like I say, hormones are hormones, and if you’re not supposed to be on hormones for long periods of time, it probably doesn’t matter whether it’s bioidentical versus the chemical, the manmade, whatever.” In the end, however, Ann has stuck with CBHT because it works—saying, “Within a month I was sleeping. You know, no more mood swings, no more hot flashes, no more night sweats.”
(3) Desire for individualized treatment
CBHT users in this study were also attracted to a treatment approach that they perceived to be tailored, or individualized, for their bodies and their treatment goals. Twelve (57.1%) women made this point, framing it in several different ways: First, women indexed a kind of biological tailoring in CBHT—both in terms of a chemical match to their bodies’ endogenous hormones and in terms of tailoring hormone dosages based in either blood or saliva tests for hormone levels, or symptom profiles. For example, when we asked Peg whether the naturopathic physician she found was familiar with compounded HT, she responded:
Very familiar with all of this. Very knowledgeable. Did the saliva test. In a week, I had what my body needed—you know, what level it would actually need, so that they didn’t just throw a bulk amount at you. They actually calibrated it for your system, the levels that were in your system or not in your system.
Here, Peg makes a controversial point, one frequently raised in our interviews with women and in the literature on CBHT, about the value of blood or saliva testing for determining CBHT doses. Overall, women in this study held varied perspectives on the value of blood and saliva testing—often reflecting on conflicting ideas picked up through media, or from their clinicians. Susan illustrates this point:
[My gynecologist] said, doing blood work and all that doesn’t work. Because, she said, there’s so much fluctuations, daily fluctuations … [She said,] “I want to start you on the lowest dose and then see if there’s any change. And then go up from there.” And then … I got that feedback from the compounder [that the dose was too low to be effective], and then there they have tests that you can buy and send in to some lab. … And so then it was very confusing to know is she right? Are they right? Is there anything such as a bioidentical hormone anyway?
Despite their uncertainties about the value or accuracy of these tests for calibrating hormone dosages, many women were enticed by the idea that compounded hormones were tailored to accurately supplement deficits in particular hormones.
Perhaps more importantly, women reported feeling like their CBHT regimen was tailored to meet their individualized treatment goals—that is, to specifically address the symptoms women found most bothersome (e.g., whether women were most bothered by hot flashes vs. low libido might result in a different hormone cocktail). Bev describes this from her dual perspective of certified nurse midwife and CBHT user:
OK, here’s how I do it. Somebody comes to me and tells me that they’re having these symptoms, and I offer them … a range of options, and it depends on whether they’re perimenopausal or postmenopausal, as well. If they decide they wanna go to [a local compounding] pharmacy, as an option, I draw their a detailed [blood] hormone panel, … [then] send you to [the compounding] pharmacy with a referral form, where they take, like, two trees’ worth of paper of a history and a symptom diary, and [the pharmacist] there talks to you for-- I mean she spends a hour and a half with you. And then they decide exactly what your goals are. I mean, not only just, here are my symptoms, and here’s, you know, what my hormone levels are, but, “What are your goals?” Which I just find awesome. And, like, my goal was never to have a period again. And she said, “Well, if I do this right, you won’t.” I mean, but some people do want to. They like that up and down thing. And they-- she can compound that, too. And they figure it out, and then they check in with you once a month for several months to make sure everything’s good, and if it’s not, then they reformulate, and they give you something a little different. They tweak it until you’re happy with what you have.
We discuss the importance of this kind of clinical care in the section below, but here we highlight the attention to women’s treatment goals and women’s attraction of the idea that CBHT regimens are tailored to meet these goals.
Women also liked that administration method for their CBHT could also be individualized to their preference (e.g., pill, lozenge, cream). Sheree good-naturedly makes this point during a focus group, while also indexing her critique of the quality of mainstream medicine and the biological tailoring of CBHT:
[Most doctors] essentially give all women the same dosage, which I think is like, what, .625 [mg CE]? And, you know, they give us all the same, but what Dr. C was saying is that we’re not the same. So, by looking at our hormone levels, that gives you an idea of what it is that you are deficient in, and so, the compounding formula is specific to your hormonal levels. So, I was over there taking those blackberry and cream troches-- [group laughter]… Yeah, yeah, they do, they make ‘em taste good.
Although the delivery is clearly less important than the safety and efficacy of treatment, it demonstrates that women feel like CBHT (in contrast to conventional HT, which they negatively perceive to be uniform) is finely tuned—both to their bodies’ needs and to their personal preferences.
(4) Enhanced clinical experience
Many of the CBHT users in this study (13; 61.9%) described clinicians and compounding pharmacists who were willing spend significant time establishing and building trust with women, listening to them as they describe their symptoms and often intimate experiences with menopause, counseling women around their treatment options, and enlisting them as partners in treatment decisions. Above, Bev described this kind of enhanced clinical experience in which the compounding pharmacist takes significant time to talk with women about their menopausal experiences, work with them to identify treatment goals and preferences, and provide follow-up care to ensure that women are satisfied with their CBHT regimens.
Similarly, Liz, a 51-year-old high school teacher, describes the central roles played by her clinicians and compounding pharmacist in assuaging her concerns about hormones and addressing the symptoms she associates with menopause. Liz described her symptoms as a vicious circle of hot flashes, night sweats, insomnia, and anxiety, saying, “It was so awful, it was insane.” To help break the cycle, Liz tried a series of over-the-counter products, including vitamins, herbal supplements, and progesterone cream; she eventually sought treatment from her midwife and primary care provider (PCP) from whom she requested sleeping pills. When we asked her why she requested sleeping pills rather than something to stop the hot flashes, Liz indexed a common push motivation, saying she was avoiding estrogen because “I’m terrified of getting cancer. … My grandmother died of cancer, and my sister-in-law died of breast cancer. My mom had [cancer and] a mastectomy. … It’s a horrible way to die and I don’t want to do anything that would be conducive to inviting that dysfunction to my own body.”
After a consultation with a compounding pharmacist, Liz refused estrogen but decided to try compounded bioidentical progesterone. Nevertheless, when we asked Liz if there is anything she is reserving in case the symptoms become unbearable again, she indexes another push motivation, stressing that “horse estrogen” is completely off the table but that she might be persuaded to try plant-based estrogen. Liz says that she prefers a “holistic kind of approach” to taking a pill. In the end, however, it is the clinical experience (in this case, with several providers) that matters. Liz says, “I guess it really basically comes down to this, I want to be able to describe my experience to somebody who has a vested interest in our relationship continuing, and have them know like anything there is to know and be able to offer that without agenda.”
In a follow-up conversation, Liz reported that she had started using CBHT (estradiol, estriol, and progesterone) soon after our original interview. When we asked her how she decided to use estrogen despite her concerns, she told us that had been “feeling psychotic from nights and nights of not sleeping.” Her PCP told her that “you have to sleep. You cannot function without sleeping.” Liz discussed her reluctance to use estrogen, her family history of cancer, and her overall concerns with her midwife, who explained that compounded estrogen was “different from pharmaceutically-produced hormones.” Like her PCP, her midwife also stressed that Liz needed to get some rest. While she still has some concerns about the safety of using estrogen, Liz says that the time, attention, and care the compounding pharmacist brought to their interaction was “important in feeling like my decision was OK.” The other factor was pragmatic: the CBHT worked immediately. Within two weeks the hot flashes were gone and the sleeping followed.
Central to this point is that women sought clinicians who take time to listen and to develop trust with their patients. Across the broader study, the most satisfied women regardless of treatment type were those that felt that they had a trusting relationship with a clinician who they felt was personally invested in their well-being. This is a lesson for all clinicians.
Discontinuing CBHT
As of 2004, the FDA has recommended that HT be used at the “lowest effective dose of for the shortest duration to reach treatment goals” [
34]. With the notable exception of Peg who says she plans to continue to use CBHT “until the day I die,” the CBHT users in this study view CBHT as a temporary response to symptoms that requires regular re-evaluation. Although they generally perceive the benefits of CBHT to outweigh the risks, they have no interest in extending their exposure beyond what is necessary.
As we discussed above, nearly half (10; 47.6%) of the CBHT users in this study were former users—meaning that they had discontinued CBHT use prior to participating in this study. The former users tried CBHT for the same push and pull reasons discussed above. What is different about the former users is that they generally described menopause symptoms in less distressing terms than the current users, and many only used CBHT for a short period when symptoms became more disruptive to their lives. The motivations that women described for discontinuing CBHT were largely same reasons women in the overall study gave for discontinuing conventional HT: the treatment was ineffective or had too many side effects, they were concerned about the risks of HT, or their symptoms abated and did not return.
The most common reasons women gave for discontinuing CBHT were that they were either ineffective or that the side effects of treatment did not outweigh the benefits. For example, having prescribed CBHT for her patients, Karen, a 52-year-old naturopathic physician, tried CBHT when she noticed her mild hot flashes increasing in frequency and intensity. She also started having night sweats. Karen tried a compounded bi-estrogen (estradiol and estriol) and progesterone for only three weeks before discontinuing the therapy due to the side effects she was experiencing. She explained:
The hot flashes disappeared; the light-headedness came. And at first I was just concerned maybe … I wasn’t doing it correctly, or I need to up the dosage, or lower something. I talked to the pharmacist because then I had the spotting and I thought, oh, well maybe this is because I missed a dose and-- But I didn’t like the feeling of light-headedness.
After discontinuing the CBHT, Karen’s light-headedness subsided. At the time of our interview, minor hot flashes had resumed, and she was trying to manage them through dietary changes and stress management techniques.
A few women discontinued CBHT in response to research highlighting the risks of long term HT. Joan, a 56-year-old behavioral health counselor, started using CBHT in 2000 to be proactive about her sexual health and osteopenia; she quit two years later, along with a wave of women who discontinued hormone therapy when the risks were in the news. She explains, “I think that when that study first came out, it was alarming, and I was part of that trend of women that were deciding don’t do that anymore!” As we saw with Ann, above, and as Joan illustrates here, although the CBHT users in this study perceive CBHT to be a better choice than conventional HT, they do not view it as wholly different when assessing risk. In light of new information, women reconsidered their CBHT use, just as women were reassessing HT overall.
Finally, several women described passively discontinuing CBHT simply by not refilling their prescription, only to find that their symptoms were bearable without treatment. Sheree said, “So, and I did that [CBHT] probably for about a year, maybe a year and a half, and then … it was time to go back and you know, I didn’t … and you know, there really wasn’t a need for me to go back.” In other words, many women have taken the FDA admonition to use hormones at the lowest dose for the shortest period seriously, and thus it was common for women to report experimenting with reducing hormone dosage or frequency, or stopping altogether to determine whether they could manage symptoms with less. This kind of experimentation, which we saw among women using CBHT as well as those using conventional HT, is similar to the trend we previously identified among dietary supplement users [
82], in which individuals become attentive to, and then privilege, their own embodied experience with treatment over professional and clinical prescriptions.