Our guest writer today is Dr Nneka Nwokolo, an Honorary Consultant Physician in HIV and Sexual Health, Chelsea & Westminster hospital, she also runs a clinic within Chelsea and Westminster specialist menopause service for women living with HIV.
The Menopause and HIV
Finally, people can speak openly about the menopause! In almost every magazine or newspaper nowadays, there’s an article about this menopause support programme or that lifestyle adjustment, and it’s great!
For decades, no, for generations, menopause has been the last taboo – whispered about as a thing of shame, or not talked about at all.
But now, despite living in a world where youth seems to be valued over all else, older women are speaking up and saying, “We refuse to be ignored any longer”; “We’re not prepared to suffer in silence anymore”. And this is as it should be.
It’s taken a small number of high-profile women whose experiences of menopause were so unbearable, that they somehow found the courage to speak up about their terror of losing their jobs because their brains didn’t work anymore, about their constant panic attacks despite only a few months previously having been the most confident of people, and their worry that this was how it was going to be for the rest of their lives. And in speaking up and seeking help, these women gave hope to many, many other people who would still (and some still are) be suffering in silence.
But when you read or hear about these women’s experiences of menopause, there are others whose stories you may never come across, and this includes the stories of women living with HIV.
There are over 30,000 women with HIV in the UK and just over 12,000 of them are between the ages of 45-56, i.e., of menopausal age. Studies suggest that women living with HIV may be more likely to attain menopause earlier, and suffer more severe menopause symptoms, than women without HIV, but there’s very little published research on the experiences and health of this group of women. Despite high levels of education, many live below the poverty line, and many avoid or delay accessing healthcare because of fear of discrimination.
When you read about the effects of menopause on long term health, you discover that this “natural” effect of aging increases the risk of heart disease, osteoporosis and dementia; but HIV itself also increases these risks.
In the UK, the majority of women with HIV come from minority ethnic backgrounds. The disparities in healthcare that women of colour face compared to their white counterparts are well known, and these serve to compound the risk of ill-health for women living with HIV and are of particular concern for those who are unwilling or unable to access healthcare.
Women of perimenopausal and menopausal age often describe feeling as if they’re “invisible” to the rest of society, but women living with HIV feel this even more acutely for reasons including, but not limited to, those outlined above.
But thankfully, organizations such as The Sophia Forum (https://sophiaforum.net) provide tremendous support for women with HIV, including those transitioning through menopause. The “We are Still Here” campaign for, and by, older women living with HIV aims to highlight and share experiences, and advocates for holistic services and standards of care. I was privileged to be invited to speak about menopause at a WISEUP+ weekend where women were able to have their questions about menopause and HIV answered and to hear about and learn from their peers, while I gained a better understanding of, and valuable insights into what they were going through. Events such as this are really important.
The Sophia Forum has also produced the “Guide to Menopause for Women Living with HIV” booklet providing clear and practical information about menopause, its symptoms and how to manage them, as well as helpful online resources.
Menopause is starting to be discussed more generally among women with HIV, and importantly, also among HIV clinicians. HIV physicians are starting to be trained in menopause which should provide opportunities for risk factors to be identified and addressed where possible, but it’s also important that women are able to speak to their GPs about menopause and to have the choice to be managed in general practice. Collaborations between healthcare providers and organizations that support and advocate for women living with HIV are crucial for ensuring that the voices of women are heard, and that services are designed to meet their needs.
Research into properly understanding the intersection between HIV, the menopause and health disparities is critically important, as are promoting menopause awareness and supporting women and other people who experience menopause to feel empowered to share their experiences and access the help they need.
Most importantly, the silence that surrounds menopause must end and no one should be excluded from the menopause conversation.