What are the experiences of women with POI?

A systematic review involves a review of existing studies to find overarching themes and findings across multiple studies. In 2025, Dr Hammond and Dr Marczak found 10 studies that examined women’s experiences of POI. By looking for the common threads across all these studies (a process called “thematic synthesis”) the researchers identified three big questions that define the POI experience:

1) What is happening to me?

2) Who am I?

3) Who can help me?

What is happening to me?

The authors found two sub-themes here, in relation to making sense of the symptoms and of the diagnosis. For the symptoms, many women reported that the symptoms were disruptive and felt like “hell”. Whereas some women were unable to put into words how the symptoms made them feel, which added more confusion. To make sense of their symptoms, like irregular menstrual patterns, many women contributed symptoms to known experiences like stress as many thought they were “just too young” to be experiencing these changes.

Many women described receiving their POI diagnosis as a “devastating” and “traumatic experience”. Words like “loss”, “grief”, and “depression” were commonly used. Confusion over receiving a diagnosis in many women was exacerbated in idiopathic cases (where the cause is unknown), but some women reported a “sense of relief” as to piecing together their symptoms which were confusing and distressing. Women who were diagnosed with POI after a medical intervention (like chemotherapy or surgery) reported that the diagnosis was distressing but they felt they had time to process their emotional responses as they were advised by their healthcare professionals that a POI diagnosis would be possible. A largely shared experience was that with their diagnosis, many women received information that was tailored for older women in menopause, which left them wondering why it was relevant to them, and overall and isolating

experience.

Who am I now?

This was also divided into two sub-themes based on perceptions of self and how others perceived them. All women reported a change in their identity after POI diagnosis, it made them feel older than they were. It also drew on a lot of concerns about appearance and feminity, due to changes in skin or hair loss. Grieving for motherhood and a family that may never be there was also a huge part of changes to identity. But finding another identity was an important step, but was both difficult and emotional.

Many women worried about negative labels from society in relation to their age, and this meant many were unwilling to disclose their POI diagnosis for fear of stigma and shame. Someone’s cultural background also shaped women’s concerns about how others might view them, particularly when motherhood plays a central role in their societal expectations. How POI might impact women’s future relationships was also a difficult topic that many women were navigating.

Who can help me?

Personal support extended from partners, family, and friends. Many women reported feeling supported and accepted by family and partners, with many partners encouraging and help to cope and adapt. Some women felt that their family members did not always know how to show support. Friends were sometimes reported as showing a lack of interest in the POI diagnosis which may have stemmed from lack of understanding of the impact POI has on a woman’s life.

The responses about support from healthcare professionals (HCP) were very mixed. Some women felt let down and unsupported, and when discussing their symptoms their  experiences were invalidated, often making them feel like they were “going insane”. When receiving their diagnosis, many felt their HCP was uncompassionate and lacked knowledge about POI and treatment options. Access to counselling and psychological support was not often considered by HCPs, nor were privately available options affordable or tailored to POI experience. Support groups, although often hard to come by, provided vital experience for confiding, sharing, and supporting each other.

Overall, the emotional toll of POI, from the first confusing symptoms to the struggle for a supportive diagnosis, is undeniably heavy. However, these findings highlight that

while the medical journey is often clinical, the lived experience is deeply personal. Recognising these shared themes is the first step in ensuring no woman must navigate the “Who am I?” and “Who can help me?” stages alone.

Turning research into self-advocacy:

- Whilst POI can feel an isolating experience, it is important to know that support groups areavailable. The Daisy Network (https://www.daisynetwork.org) offer support groups and services. Research like this proves that if you feel unheard or overwhelmed, you aren’t “imagining it” your experience is shared by many. Use these findings as a reminder that your voice matters in the consulting room.

- If you are feeling that your mental health is struggling, it’s important to seek help. Samaritans: Confidential emotional support available 24/7. Call 116 123 or visit www.samaritans.org. Mind: A charity that provides support and information on mental health. Visit www.mind.org.uk or text 86463.

Daisy Network: A charity for women with POI. Visit https://www.daisynetwork.org for more information and support services relating to POI.

Link to paper: https://doi.org/10.1080/08870446.2023.2192738