When Vicky Lynn found out she was HIV positive in 1991, at the age of 21, she thought she had been executed. She certainly never imagined she would live long enough to see a major event that would affect women later in life: menopause.
Now 57 and firmly postmenopausal, Lynn still remembers how difficult it was to find a health care provider (HCP) who would take her menopausal symptoms seriously.
“I had symptoms that no one really understood, or they didn’t associate them with menopause,” Lynn said.
Dealing with the stress of working on a PhD while still in menopause didn’t help matters, and Lynn herself struggled to figure out the cause of her symptoms.
“Is it HIV, menopause or graduate school? There was a lot going on and no one could give me any straight answers,” Lynn said. “It was a very difficult time.”
Thanks to a type of treatment called antiretroviral therapy (ART), more people are living longer with HIV. Almost half of people living with HIV in the US are 50 or older.
For women, aging with HIV can present unique health challenges, including during the menopausal transition. And a lack of research on how menopause affects women living with HIV, as well as a lack of providers who understand how to best care for these women, can make it difficult to get needed support for menopausal women living with HIV. and finding care.
Check out The 3 Stages of Menopause >>
When does menopause start and why is it important?
For women living with HIV, it can be difficult to tell when menopause begins. That’s because many women with HIV experience abnormal periods because of HIV-related medical conditions, says Sarah Luby, Ph.D., ANP-BC, a researcher at Massachusetts General Hospital in Boston and a professor of medicine at Harvard Medical School. assistant professor
“It’s really important for doctors not to assume it’s true menopause when periods are absent,” Luby said. “They should also assess factors other than menopause, including psychosocial, behavioral and physical health changes that women living with HIV may experience that may lead to menstrual loss.”
However, some research suggests that HIV-infected women begin menopause three to five years earlier than other women. This is worth noting because the earlier a woman enters menopause, the sooner she begins to lose estrogen’s protective effects against heart disease, mood swings, bone loss, and other health problems. Because women living with HIV already face more of these problems, menopause can make them even more vulnerable.
The researchers also found that the drop in estrogen that occurs during menopause can affect a woman’s CD4 cell count. CD4 cells are white blood cells that play an important role in immune health, and your CD4 cell count is a good indicator of how well your immune system is working. The lower your CD4 cell count, the weaker your immune system and the greater your risk of developing serious illnesses.
Living with HIV can mean worse menopausal symptoms
HIV-infected women may not only start menopause earlier than other women, but their symptoms may also be worse. “There have been conflicting results, but there are many studies to date that show that HIV-infected women may experience more frequent and severe hot flashes compared to women without HIV,” Luby said.
Luby has been involved in research on the topic. he and a group of researchers conducted a study involving 33 HIV-infected and 33 HIV-negative women who were similar in age, race, and menstrual patterns. They found that women with HIV had worse hot flashes and that those hot flashes were more likely to disrupt their lives.
Another study found that menopausal symptoms potentially affect a patient’s ability to take antiretroviral therapy (ART) as prescribed. And a third study looked at 714 women with and without HIV in Nigeria and found that menopausal symptoms were generally worse in women living with HIV, and that these women were three times more likely to have severe symptoms.
Finding care can be a challenge
As difficult as it is for women to cope with the dual challenges of HIV and menopause, it can be even more difficult to find help.
Even HIV specialists who specialize in menopause may not have experience treating women living with HIV, and many HIV specialists are also menopause specialists.
“For women in the United States who have been living with HIV for a long time, their primary care physician is often an infectious disease provider,” Luby said. “These providers are phenomenal at managing their patients’ HIV and many aspects of their primary care, even though many are not necessarily trained to assess, diagnose and treat menopause.”
Providers who treat menopause in women living with HIV may be reluctant to prescribe treatments such as hormone therapy (HT), also known as hormone replacement therapy, or HRT, because they are concerned about drug interactions and other problems, and patients may be reluctant. take them In one study of more than 800 menopausal women living with HIV, only 8 out of 100 said they used HT during transition.
This is true despite the fact that under the right circumstances, HT can help some women living with HIV manage menopausal symptoms and improve their quality of life.
“I think there’s a lot of fear of prescribing menopausal hormone replacement therapy to specific populations, including HIV-infected women, because there’s a lack of data showing safety and efficacy in this population,” Luby said. “More research and education about both menopause and hormone therapy is needed for HIV-infected women and their providers to support shared decision-making.”
Loby also noted that HCPs for HIV-infected women should carefully consider individual health risk factors and existing guidelines for menopausal hormone use in HIV-negative women. This careful consideration plays an important role in helping patients and their providers make informed decisions together.
Information is key to coping with menopause when you have HIV
When Lynn was going through menopause and trying to understand what was happening to her body, she was frustrated by the general lack of information about HIV and menopause.
“Not even being able to find research literature on what I was going through was very frustrating for me,” Lin said.
So where should women living with HIV turn to cope with the ups and downs of menopause? Lin, a public health and social work professional who has spent the past three decades advocating for HIV issues, suggests reaching out to organizations like The Well Project, which can provide information and connections to other people. who understand what they are. is passing.
“I wish every community organization serving people living with HIV had a menopause or aging specialist,” Lynn said. “There are so many of us growing old and so little known. We’re still learning.”
This resource was created with support from Gilead.
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