“I’d heard in the media about how there are long waits, there are very few specialists for the public health care system, I felt really terrible that I’d like clogged up the system with my unnecessary problem then I panicked and cancelled.”
Even though this woman’s intention was founded in believing that by her not attending her appointment would enable someone else access to healthcare, this exemplifies how women did not think that AUB was a condition worthy of investigation, or did not want to “waste anyone’s time” (Participant 4). For some women this prevented them seeking care again (Table 2, quote 9).
One participant had been experiencing heavy bouts of AUB her whole life and had doubted the severity of the condition. The only reason she finally had medical investigation was because she was admitted to emergency and given a blood transfusion due to AUB induced anemia (Table 2, quote 10). Another woman recalled her experience of bleeding through her clothes and passing out at work, and immediately went onto put her own story down.
“I’m sure for other people they get it all the time and it’s probably a lot worse and it’s a lot more ongoing… So I’m probably not a dire case or I’m- this may not be useful for your study I don’t know”. Participant 9.
Her experience represents what all these women have become used to – that AUB is (now) their normal, and speaks to the severity of their AUB.

Health Literacy

Health literacy, and a general understanding around what constitutes normal gynaecological health influenced women’s decisions to seek earlier investigation for AUB. Many women identified stress as the cause of their change in bleeding. Nine of the fifteen women interviewed delayed seeking care up to as long as 3 years as they attributed their symptoms to other causes (Table 2, quote 11).
For others, simply figuring out that their bleeding was abnormal was difficult to work out:
“And it’s only recently looking at- after ((googling)) around I realised I’ve actually had abnormal bleeding for a really long time I just didn’t realise it wasn’t supposed to be that bad…I just wish I knew like the boundaries of normal for what periods were. ‘Cause I have another friend right now she’s going through a real shit time and she’s also had painful periods for a really long time and now it’s like she may have uterine cancer and she didn’t know…So like I just wish there was more education” Participant 5.
That women were seeking more information indicates that while they were keen to better understand AUB and suggests that they may not have had appropriate/accessible information or discussion with their GPs.

Commitments

Commitments such as looking after family and employment significantly impacted women’s ability to attended appointments. For many, juggling an extra day’s annual leave to attend clinical appointments picking up children from school, and generally finding time for one’s self. It was evident that women justified not prioritising clinical appointments (primary or secondary) which appeared to be related to previous negative experiences or a sense that a resolution wouldn’t be achieved (Table 2, quote 12-13). This shows the level of, and tolerance, of pain and bleeding and their incredible ability to continue their work, family and social life with the condition.

Taboo

Embarrassment, shame or shyness around menstruation meant that women were reluctant to talk to others about their AUB experiences with friends or family. This extended to work situations, for example, needing to take sick days (Table 2, quote 14-15).
One husband, who was present during the interview, interjected -“she can’t even say period most of the time to me” .
Some women believed they did talk to friends about menstrual experiences, however on reflection their AUB problems were not discussed in depth (Table 2, quote 16-17). These examples of menstrual taboo can be isolating and perpetuates a cycle of secrecy and limited discussion with others.

Discussion

Main Findings

With this qualitative study we aimed to explore the barriers and facilitators to seeking care for AUB in a NZ setting. It is clear that women do not experience a linear trajectory to a specialist gynaecological appointment. Rather, they face compounded systemic and personal barriers caused by the poor management of the complex and individual nature of AUB conditions.
The overall poor management of AUB and lack of informative discussion around the symptoms and treatments has lead women to form ‘learned hopelessness’, a theory of psychological behaviour exhibited by a person after enduring repeated aversive events, causing them to accept their condition (15). In this case, the chronic and complex nature of AUB, poorly managed by GPs, alongside family and work commitments, can lead to learned hopelessness, preventing women from care-seeking behaviour and normalisation of symptoms as seen here. This can be detrimental to their mental wellbeing (16). As with other conditions such as arthritis (17), learned hopelessness may lead to a worse outcome for women with AUB.

Strengths and Limitations

The major limitation with this study is biased towards women who attended their specialist appointment – we do not know the barriers women faced who were not able to attend. This study needs to be extended using a community based approach to hear more from those in need. In particular there were a number of women did not attend their specialist appoint and therefore were not included in this study, who had a history of non-attendance, and who were also scheduled for an ultrasound scan and had reported anaemia. It would be imperative to hear their story in order to identify why they did not attend, what areas of support they need. Perhaps, we may find that the compounded effected of all four described themes, heightened by emotional distress and traditional/cultural attitudes will impede the journey to a clinical specialist. Health care providers should aim to improve cultural competency to ensure they are addressing the needs of New Zealand people. In particular, a focus group study with Pacific people from Canterbury highlighted GP availability and flexibility, pacific presence, language/communication and rushed consultation to be the major barriers to accessing primary care (18).

Interpretation

Two recent studies specifically look at the experiences of women diagnosed with endometrial cancer. Both used a similar cohort size and used interpretive and descriptive coding to deduce common themes amongst participants. The first, also placed in New Zealand, reported similar stories of self-doubt and confusion around their symptoms (19). The second, placed in Canada, investigated morbidly obese women diagnosed with low grade endometrial cancer (20) and focused on barriers to surgery for this group of women. This study found that women with endometrial cancer were subject to stigma and poor provider communication and that many of the participants learnt about the link between endometrial cancer and obesity through their own reading (20). Participants also noted their reluctance to seek care due to prior stigmatisation experiences (20). These issues were similarly reported by a number of participants in our study.
It was clear from our interviews that GPs had difficulty in managing AUB. Many participants described dismissive nature of treatment including medication of symptoms rather than a thorough investigation of the underlying condition. This may be because AUB is a complex combination of conditions, experienced differently, classified by the PALM (structural)-COEIN (non-structural) acronym - polyp, adenomyosis, leiomyoma, malignancy and hyperplasia, coagulopathy, ovulatory dysfunction, endometrial, iatrogenic, and not yet classified. Unfortunately within the AUB classification, there are still underlying causes that are unknown, which occurs in approximately 12% of women (21). The Best Practice Advocacy Centre NZ (BPAC), which aims to disseminate and communicate practice guidelines to GPs, has an updated (2019) outline for AUB investigation. Whilst comprehensive, this guideline does not follow the NICE guidelines, that highlight the need for the recognition of AUB on women’s quality of life (section 1.1), and emphasise treatment addressing this rather than quantity of blood loss. The BPAC NZ guidelines do not include any such assessment. In our study, we found that women were treated with iron tablets or pain killers until symptoms worsen, patients return for another consultation, or change health care provider. A follow up study to gain a deeper understanding of the management of AUB from the GP’s experience, and implementation of GP workshops would be important to change these practices.
The 2018 audit of gynaecological cancer treatment pathway guidelines indicate a less than 14 day waiting period for a specialist appointment on the suspicion of malignancy (22). This target was met for 85% of women in this audit (22). This is possible when risk of endometrial cancer is obvious (post-menopausal and/or high BMI). However, given the complex nature of AUB in pre-menopausal women, this guideline may be overlooked. Furthermore there are no time standards for the pathway to a specialist for AUB. Most women in our study waiting equal to or greater than 4 months for their referral appointment. In cases where AUB is a sign of endometrial cancer in pre-menopausal women, this is of concern.
From our investigation and others (19, 20, 23) it is clear that there is a lack of evidence based information easily available to woman around AUB. Whilst there are successful cancer screening awareness campaigns for cervical, breast and colorectal (24, 25), there are none for endometrial cancer. From our study, women were confused about normality, and didn’t realise there were treatment options available, such as the Levornorgestrel Intra Uterine System (LNG-IUS, Mirena). Now that it has come under government subsidised funding in New Zealand, the Mirena is free for women, whether that be for contraceptive use or management of periods. The Mirena has also been shown to protect against and/or treat hyperplasia and early stage endometrial cancer (26, 27). We encourage our findings to be seen as a call to action for health care providers to ask about quality of life during AUB investigation, help women recognise AUB symptoms, discuss treatment options and arrive at a treatment decision together as outlined in the NICE guidelines. It would be particularly useful for information material to be based on, and include women’s experiences, as we have seen here, to help break down taboos associated with menstruation. Furthermore, we urge the use of digital and social platforms to equip women with the information they need to support care seeking activity.