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Hell in a Hot Flash? Facts and Perspectives on Menopause and HIV

Summer 2016

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falling leaves

Credit: Angel_1978 for iStock via Thinkstock

Who would have though that medical advancements would defy single-digit T-cell counts and the expectation of death, allowing numerous women aging with HIV to experience the challenges of the "change of life"?

After a week of waking up in the middle of the night with drenching night sweats, I ran to my doctor in a panic reminiscent of the days when my T-cell count was 8. I just knew something major was wrong with me, despite my undetectable viral load. Imagine my surprise when my doctor explained that I had entered perimenopause.

Thirty-five years into the pandemic, HIV is no longer a death sentence, and women living with HIV are aging straight into menopause and beyond. However, information about the impact of menopause on positive women is clouded by limited research, with mixed results from the few studies that have been conducted.

Menopause, often known as "the change of life," is the changing of a woman's hormone levels. Basically, a woman produces less estrogen as she grows older, causing a hormonal imbalance and ultimately eliminating a woman's menstrual cycle. Perimenopause is the time of transition from the beginning of hormonal changes to the ending of the menstrual cycle, when a woman is no longer able to have children.

So what's the big deal? No more "periods" is a dream many women have had since their teen years. If only it were that simple. In reality, perimenopause is often a long, daunting process for women.

One desirable aspect that many women experience in this stage is lighter and fewer menstrual cycles. Less attractive symptoms can include:

  • Hot flashes
  • Depression
  • Sleep deprivation
  • Weight gain
  • Irritability
  • Mood changes
  • Drenching night sweats
  • Vaginal dryness

Of these symptoms, hot flashes tend to be the most intrusive in a woman's daily routine. Women often describe hot flashes as being akin to spontaneous combustion: a sensation that suddenly emerges from the inside out, leaving you feeling as if the inside of your body has been set on fire. While perimenopausal symptoms, and their severity, vary from woman to woman, a 2014 study in the journal Menopause found that women living with HIV have more severe hot flashes than HIV-negative women.


For me, the most disconcerting finding of the study was that the distress of hot flashes could interfere with healthy life choices, and even HIV medication adherence, for women living with HIV. The fact that hot flashes can impact quality of life is no secret to women who have experienced them. La'Donna Boyens of Norristown, Pennsylvania, diagnosed with HIV in 2000, concurs. She explained that her hot flashes are so intense that she no longer wears socks with her boots in the winter, and carries perfume to combat the smell of sweat. "I never want to go to hell," La'Donna said, "if it feels like a hot flash."

Hot flashes while sleeping can be the cause of night sweats -- and sleep deprivation. Waking up in the middle of the night with soaked pajamas has become the norm for many perimenopausal women with HIV. For example, my night sweats are so extreme that I now sleep with the heat off in my bedroom -- on Chicago winter nights. "Sleeping at night, I feel like a zombie in a sauna," Tiffany Quinton, an AIDS activist living with HIV in Houston, said. The Menopause study concluded that irritability and loss of sleep from hot flashes were part of what diminished quality of life for HIV-positive women. La'Donna agrees: "Some days I don't want to leave the house," she said; "That's just not me."

Studies have revealed conflicting results as to whether women with HIV enter perimenopause earlier than HIV-negative women. Women's Interagency HIV Study (WIHS) results presented in 2004 by lead investigator Dr. Helen Cejtin found no significant difference between HIV-positive and HIV-negative women -- the mean ages were 47.7 and 48 years, respectively. Another study, published in the International Journal of STD & AIDS, concluded that women with HIV who had T-cell counts of 200 or below, had a history of injection drug use, or were of African descent tended to experience earlier menopause. Other factors, including tobacco smoking, have also been linked to earlier menopause in some studies.

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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.

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