“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.