Nine in ten women living with HIV aged 45 to 60 have hot flushes and other somatic symptoms of the menopause, but often have difficulties getting advice and care to manage them, according to an English study released today. Only 8% of women with these symptoms were currently using menopausal hormone therapy (MHT).
Thanks to effective HIV treatment, increasing numbers of women with HIV are reaching the years when women usually go through the menopause. It is a natural part of ageing that usually happens between the ages of 45 and 55. Periods usually become less frequent over a few months or years, before they stop altogether. The menopause is a gradual process and is linked to a range of symptoms that can affect women’s quality of life, work and relationships.
There are now over 10,000 women living with HIV aged 45-56 in the UK – five times the number a decade earlier.
However, there are very few data on the menopause in women living with HIV. Dr Shema Tariq of University College London and colleagues designed the PRIME Study (Positive Transitions Through the Menopause) to address gaps in our knowledge. The study combined quantitative and qualitative methods – a questionnaire survey of women attending HIV clinics across England, a survey of 88 GPs, in-depth interviews with 20 women and three focus group discussions with a total of 24 women. PRIME is one of the largest studies of the menopause in women living with HIV ever conducted.
The main questionnaire survey of women aged 45 to 60 years recruited 869 participants, 81% of those who were approached. Just under half the participants were university educated and two-thirds were employed, full or part time. In terms of ethnicity, 72% were black African, 8% white British and 19% mixed or other.
While 98% were taking antiretroviral therapy, 12% had a detectable viral load and 7% a CD4 cell count below 200 cells/mm3.
The median age of participants was 49 years. The sample included 21% of women who were pre-menopausal (regular periods), 44% who were peri-menopausal (irregular periods within the last two years) and 35% post-menopausal (no periods for at least a year).
There was a high prevalence of symptoms that are often related to the menopause (but could have other causes):
- 89% reported somatic symptoms: hot flushes, palpitations, joint and muscle discomfort or sleep disturbance.
- 68% reported urogenital symptoms: vaginal dryness, urinary tract symptoms or sexual problems.
- 78% reported psychological symptoms: depression, anxiety, irritability or exhaustion.
The survey included four questions to assess psychological distress. Whereas 26% of women without somatic symptoms had psychological distress, 53% of women with these symptoms were distressed. Similarly, while 19% of those without urogenital symptoms were distressed, 58% of those with these symptoms had psychological distress.
Having a sexual problem that lasted for more than three months in the past year was reported by 69% of participants (higher than the 54% reported in a general population survey of women in the same age group). The most commonly reported problems were a lack of interest in sex (52%) and vaginal dryness (28%).
Qualitative interviews showed that women had difficulties in distinguishing menopausal symptoms from HIV-related symptoms and side-effects of HIV treatment:
“It leaves you feeling ‘what is going on here’? Is it HIV? Is it the menopause?”
Symptoms could have a significant impact on quality of life:
“My menopause is now interrupting my life quite seriously. I think I have gone into a depression. My sleeping pattern is so horrendous and so chaotic that I feel very emotional.”
However, women often reported being under-prepared for menopause: 47% said they did not have sufficient information about it. This was especially the case for women from sub-Saharan African communities, where the subject of periods and menopause was often seen as taboo.
“Mostly in our culture, we don’t talk about these things, so we sometimes experience things without knowing exactly what’s going on.”
“It would be good to hear about [menopause] earlier, then we would start noticing it in our bodies. It would be a thing that we know. Not a kind of shock. You don’t know what is happening to you.”
Although advice and care on the menopause is usually provided in primary care, the survey of GPs showed that many have concerns about managing menopause in women living with HIV. Over 95% said that they were confident in managing menopause in general, but only 46% were confident when the patient was living with HIV. The overwhelming majority (96%) felt that menopause in women without HIV should be routinely managed in primary care, whereas just over half thought that menopause in women living with HIV should be managed in primary care.
Particular concerns were drug interactions (79%), missing a diagnosis of an HIV-related illness (51%) and the risks of menopausal hormone therapy in women with HIV (48%).
Use of treatments to alleviate menopausal symptoms was strikingly low in women who completed the survey. Just 8% of those with somatic symptoms were currently using menopausal hormone therapy (MHT, previously known as hormone replacement therapy). Only 3% of women with urogenital symptoms were using vaginal oestrogen.
However, some women said that they did not want to take another medication, in addition to their HIV treatment.
“I don’t want to take anything else. I don’t want to be a slave to something else.”
Shema Tariq and colleagues recommend that HIV clinical services, GPs and HIV support services should be aware of the potential impact of the menopause transition on the health and wellbeing of women living with HIV, and ensure that services are able to support women during this time.
In particular they recommend that HIV clinical services should annually assess women’s menstrual cycle and, in women over the age of 45, menopausal symptoms. Treatment and support should be provided by primary care, in liaison with HIV specialists.
Accessible information about the menopause should be provided. Peer support for women living with HIV transitioning through the menopause is likely to have an important role in building self-efficacy and resilience, they say.
By Roger Pebody
Tariq S et al. Menopause in women living with HIV in England: findings from the PRIME Study. www.ucl.ac.uk/prime-study