More Questions Than Answers When Managing HIV and Menopause

Note: on this article, “women” refers to cisgender girls — those that establish as girls and had been assigned feminine intercourse at start. Menopause additionally impacts transgender males and non-binary folks, however revealed analysis on the menopause expertise has included solely cisgender girls members.

March 18, 2022 — Gina Brown was boarding an early-morning flight in 2016 when she out of the blue began to overheat.

“As soon as I stepped on the plane, I immediately was drenched in sweat,” she says.

Not realizing what to do, she stood nonetheless till a fellow feminine passenger seen her alarm and requested a flight attendant to seize her a cup of ice.

“Is this the first time this has happened to you?” the lady requested, and Brown nodded.

“It’s called a hot flash,” the lady continued, “and you’re going to be OK.”

As quickly as Brown returned from her journey, she visited her physician for bloodwork and discovered that that her hormone ranges had been lowering.

“I knew something was going on, but [my provider and I] didn’t have a conversation about menopause,” she says. Brown, 56, has been dwelling with HIV for almost 28 years and is a part of a rising group of ladies with HIV now coming into menopause.

In 1996, an individual identified with HIV at 20 may count on to dwell solely to 39. Because of antiretroviral remedy (ART), an HIV prognosis shouldn’t be almost so dire. Now, somebody with HIV who sticks to their therapy may dwell almost so long as anybody else.

For girls with HIV, this implies going via menopause. Though this transition may be difficult for any lady, having menopause with HIV provides one other degree of complication. On prime of staying with day by day ART plans, they have to additionally take care of the hormone adjustments of menopause and the signs that include it. And the restricted analysis on this space suggests that ladies with HIV and their docs will not be ready.

“Those of us long-term survivors who have been around for a while never expected to be here, and I don’t think providers or the health care system expected us to be here,” says Vickie Lynn, PhD, who’s 56 and has been dwelling with HIV for 37 years, since an AIDS prognosis in 1991. Her work focuses on well being take care of folks with HIV.

“So now that we’re here, I don’t know that we have enough information or research to inform some of our treatment options,” she says.

Instead, these girls are met with a sequence of unknowns as a result of restricted research and conflicting findings.

Earlier Menopause?

The begin of menopause may be troublesome to find out in girls dwelling with HIV, says Sara Looby, PhD, a researcher at Massachusetts General Hospital in Boston and an assistant professor of drugs at Harvard Medical School. Her analysis focuses on metabolic problems, together with bone loss, heart problems threat, and menopause in girls dwelling with HIV.

This inhabitants is at an elevated threat for what’s often known as amenorrhea, or lacking menstrual intervals, as a result of each behavioral and medical elements, and generally that is mistakenly assumed to be menopause, Looby says.

A historical past of smoking, low weight, methadone use, or use of different medication is widespread in girls with HIV and might result in missed intervals.

Some elements particular to HIV — together with a low rely of 1 kind of white blood cell and an AIDS prognosis — have additionally been linked to amenorrhea.

This is probably going why research that have a look at the typical age that ladies with HIV attain menopause can find yourself with completely different outcomes.

Some research counsel that ladies with HIV have a tendency undergo menopause 3 to five years sooner than different girls. Other research counsel no distinction within the age menopause begins.

But learn how to decide when menopause begins diverse from examine to review, Looby says. Future analysis wants to think about sufferers’ full menstrual and reproductive historical past, in addition to medical, social, and behavioral histories, she says, in order that the findings are constant.

If menopause begins earlier in girls with HIV, there may very well be extra well being considerations. Estrogen regulates bone mass, and a few analysis suggests the hormone could assist shield the center. Estrogen can be thought to extend manufacturing of the neurotransmitter serotonin, which may have an effect on temper and pondering expertise. Women with HIV are already at increased threat for bone loss, coronary heart illness, and emotions of despair, Looby says, and as estrogen ranges fall throughout menopause, these situations could worsen.

More Frequent and Severe Menopause Symptoms?

Women with HIV could not solely undergo menopause earlier, however their signs can also be extra frequent and extra extreme. In a 2017 examine of HIV-positive and HIV-negative Nigerian girls, these with HIV had extra menopause signs total and had been 3 times as more likely to report extreme signs, in comparison with girls with out HIV. A 2005 examine completed in New York City discovered HIV-positive girls had been 24% extra more likely to report menopause signs, in comparison with HIV-negative girls within the examine.

Looby’s personal analysis has additionally discovered the same sample. In a examine evaluating 33 girls with HIV to 33 girls with out HIV — all near menopause and matched for age, race, physique mass index, and menstrual patterns — girls with HIV reported extra extreme sizzling flashes and extra days with sizzling flashes. These girls additionally mentioned their sizzling flashes interfered to a a lot larger diploma with day by day actions and high quality of life, in comparison with these within the examine with out HIV.

But research of ladies with HIV who’re coming into menopause are uncommon, and most embrace solely small numbers of ladies. As a outcome, many ladies with HIV have no idea what to anticipate. “I at all times say, ‘I wish somebody would do some real research on HIV and menopause, because I want to know if it is worse for us or if it is same,” says Brown, the director of strategic partnerships and community engagement at the Southern AIDS Coalition in Powder Springs, GA, outside Atlanta. “I would think it’s worse for me.”

More frequent and extreme signs can produce other results, with some proof suggesting that ladies with HIV and extreme menopause signs are much less more likely to stick with their HIV remedies.

“There’s a clear picture emerging that menopausal symptoms in this group really matter,” says Shema Tariq, PhD, an HIV doctor-scientist on the University College London Institute for Global Health in England. “They really impact women’s well-being, as well as impacting their ability to look after their long-term condition.”

Providers Wary of Treating Menopause in Women With HIV

The little analysis we do have about girls with HIV who’re in menopause suggests they might drastically profit from the identical sorts of therapy supplied girls with out HIV, together with hormone alternative remedy (HRT). Women with HIV often have night time sweats and sizzling flashes throughout the menopause transition and should have extra extreme signs than girls who don’t have the virus. If girls with HIV usually tend to enter early menopause (outlined as coming into menopause earlier than the age of 45), then this group meets two situations for hormone alternative remedy.

Despite the potential advantages of HRT to girls with HIV, some research counsel not sufficient girls are getting it. In Tariq’s examine, which explores how menopause impacts greater than 800 girls dwelling with HIV, solely 8% of respondents mentioned they used hormone alternative remedy. In a Canadian examine that has not but gone via peer assessment, 11.8% of ladies who’re transitioning to menopause and girls who’ve already been via menopause reported ever utilizing HRT, about half the speed of ladies in North America with out HIV.

Doctors’ discomfort with managing menopause-related care in girls with HIV is one purpose for such low use of hormone remedy, Tariq says. In a survey of 88 basic practitioners within the United Kingdom, greater than 95% mentioned they had been comfy managing menopause in a basic inhabitants, however simply 46% mentioned they felt comfy managing menopause in girls with HIV.

Their prime considerations included the potential for drug-to-drug interactions between sure HIV medication and hormone alternative remedy, lacking an HIV-related prognosis, and the dangers of menopausal hormone remedy in HIV. Nearly half of respondents mentioned solely specialists ought to be offering menopause-related care for girls with HIV.

But specialists can also really feel conflicted about treating menopause in girls with HIV, says Tariq.

“If you’re looking at people who manage HIV, you’re looking primarily at infectious disease physicians and HIV physicians. We’re not trained as gynecologists. We’re not used to prescribing HRT,” she says. “And the problem is gynecologists aren’t used to managing HIV. They get nervous about prescribing anything when they see antiretroviral medication [a type of HIV drug] because all that people think of is a drug-drug interaction.”

This leaves girls with HIV in search of care and therapy for menopause in a troublesome scenario, the place they’re “just being ping-ponged around between different health care providers,” says Susan Cole-Haley, 53, an HIV activist in London who has been dwelling with the virus for 23 years. “So many women with HIV have multiple health conditions and multiple health care providers, which can just make it really problematic and really exhausting in terms of getting help.”

Many Unknowns

Providers can also be uncomfortable with prescribing hormone remedy due to alarming analysis within the early 2000s that discovered that hormone alternative remedy elevated the danger of breast most cancers and coronary heart illness. More current analysis discovered no elevated coronary heart illness threat in girls youthful than 60 or lower than 10 years past the beginning of menopause. Still, the “media frenzy” across the early findings “has put off a whole load of patients and a whole load of clinicians from even thinking of HRT,” Tariq says.

Providers could also be much more hesitant as a result of folks with HIV have already got a better threat for coronary heart illness, as a result of behaviors like smoking in addition to HIV-specific elements. (Research has but to tease out whether or not these coronary heart results are a results of the virus, a results of the antiretroviral remedy, or each.) In addition, there have been no research wanting immediately at how nicely, and the way safely, hormone alternative remedy works in girls with HIV, so suppliers typically depend on the rules for the usage of menopausal hormone remedy for girls with out HIV.

While researchers from Canada and the United Kingdom have compiled suggestions for HRT in girls with HIV, there’s a nice want for a large-scale medical trial to create constant pointers, Looby says.

While these unknowns do have to be mentioned with sufferers earlier than beginning hormone alternative remedy, they need to not cease docs from contemplating the therapy, says Elizabeth King, MD, of the Women’s Health Research Institute in Vancouver, Canada.

“If women are having extremely troublesome symptoms, then withholding therapy that is potentially beneficial because of worries about some of the things we do not know — I don’t know if that is any better,” she says.

Many girls with HIV could not wish to begin hormone alternative, as was the case for Lynn.

“I’ve taken a lot of medication in my time, and I really try to avoid it as much as possible,” she says.

Questions about drug interactions had been the primary concern for Dawn Averitt, 53, founding father of the Well Project, an HIV nonprofit targeted on girls and women. Averitt has lived with HIV for 34 years.

“What if some of the things that I’m dealing with could be managed by HRT?” she says. “Or what if taking it exacerbates problems in a way that nobody knows to look for?”

In this case, suppliers may match with sufferers to debate different therapy choices.

While some girls with HIV could not need hormone remedy, “It’s important that women have that option, and from what we are seeing right now, not a lot of women are even being offered the therapy,” King says.

There are non-hormonal remedies for managing menopause signs, together with widespread anti-depression medication and cognitive behavioral remedy, however these additionally haven’t been studied particularly in girls with HIV.

The Path Forward

Tariq and Looby agree the following step ought to be to higher have interaction girls with HIV in analysis and care round their expertise with menopause. This consists of research on the signs they often have and the way these signs have an effect on their high quality of life, together with their bodily, psychological, cognitive, and social well being.

These research may additionally assist researchers and others perceive what these girls with HIV need for his or her menopause care, whether or not that be treatment, psychotherapy, and/or peer help teams.

Another essential issue is growing schooling, for sufferers and well being care suppliers, Looby says. Many girls could not know what menopause is, what signs appear to be, and the way these hormonal adjustments can have an effect on their well being.

If suppliers preserve speaking with feminine sufferers about menopause all through maturity, that may higher put together girls for the menopause transition and alert them to widespread signs they might have. There additionally is a superb want to teach docs and nurses, Looby says.

Infectious illness specialists may have extra schooling on menopause administration, whereas girls’s well being specialists may have extra coaching on managing take care of sufferers with HIV.

Ideally, this info may very well be shared with a crew of suppliers — together with infectious illness, main care, and girls’s well being specialists — so docs and different suppliers can work collectively to prescribe therapy for girls with HIV, Looby says.

Lastly, there must be extra money for analysis to reply questions associated to menopause and HIV, together with the age menopause begins in girls with HIV, how extreme signs are, how HIV could have an effect on the transition into menopause and vice versa, and the way nicely remedies work.

“If we don’t have funding for these studies, then we won’t have answers to guide clinical care guidelines necessary to support the health, well-being, and quality of life of women with HIV,” Looby says.

And the variety of girls dwelling with HIV coming into menopause is anticipated to continue to grow, King says.

“It was only a couple of decades ago when women were being told they wouldn’t even live to experience menopause, and now we are at a point where this is the highest proportion of menopausal women ever that we have seen in our HIV clinics,” she says.

“It speaks to the success of antiretrovirals,” King says, however that additionally means figuring out new challenges and addressing acknowledged gaps in care. “We are charting a new course, in some ways,” she says. “There is a lot of work to be done.”