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The European Journal of Contraception & Reproductive
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The difficult journey to treatment for women
suffering from heavy menstrual bleeding: a multi-
national survey
A. L. da Silva Filho, C. Caetano, A. Lahav, G. Grandi & R. M. Lamaita
To cite this article: A. L. da Silva Filho, C. Caetano, A. Lahav, G. Grandi & R. M. Lamaita (2021):
The difficult journey to treatment for women suffering from heavy menstrual bleeding: a multi-
national survey, The European Journal of Contraception & Reproductive Health Care, DOI:
10.1080/13625187.2021.1925881
To link to this article: https://doi.org/10.1080/13625187.2021.1925881
© 2021 The Author(s). Published by Informa
UK Limited, trading as Taylor & Francis
Group
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RESEARCH ARTICLE
The difficult journey to treatment for women suffering from heavy menstrual
bleeding: a multi-national survey
A. L. da Silva Filho
a
, C. Caetano
b
, A. Lahav
c
, G. Grandi
d
and R. M. Lamaita
a
a
Department of Gynecology and Obstetrics, Faculty of Medicine, Federal University of Minas Gerais (UFMG), Belo Horizonte, Brazil;
b
Bayer Consumer Care AG, Basel, Switzerland;
c
Bayer AG, Berlin, Germany;
d
Department of Medical and Surgical Sciences for Mother,
Child and Adult, University of Modena and Reggio Emilia, Azienda Ospedaliero-Universitaria Policlinico, Modena, Italy
ABSTRACT
Purpose: Up to 30% of women of reproductive age experience HMB, which has a substantial
impact on their quality of life. A clinical care pathway for women with HMB is an unmet need, but
its development requires better understanding of the factors that characterise current diagnosis
and management of the condition.
Materials and methods: This observational, survey-based study assessed the burden, personal
experiences, and path through clinical management of women with HMB in Canada, the USA,
Brazil, France and Russia using a detailed, semi-structured online questionnaire. After excluding
those reporting relevant organic pathology, responses to the questionnaire from 200 women per
country were analysed.
Results: Around 75% of women with HMB had actively sought information about heavy periods,
mostly through internet research. The mean time from first symptoms until seeking help was 2.9
(Standard deviation, 3.1) years. However, 40% of women had not seen a health care professional
about the condition. Furthermore, 54% had never been diagnosed or treated. Only 20% had been
diagnosed and received appropriate treatment. Treatment was successful in 69% of those patients
currently receiving treatment. Oral contraceptives were the treatment most commonly prescribed
for HMB, although the highly effective levonorgestrel-intrauterine system was used by only a small
proportion of women.
Conclusions: This study provides insight into the typical journey of a woman with HMB which
may help patients and health care professionals improve the path to diagnosis and treatment,
although further research with long-term outcomes is needed.
ARTICLE HISTORY
Received 11 December 2020
Revised 21 April 2021
Accepted 30 April 2021
KEYWORDS
Heavy menstrual bleeding;
menstruation; hormonal
contraceptives; diagnostic
delay; access to treatment;
clinical pathway
Introduction
Heavy menstrual bleeding (HMB) is defined as excessive
menstrual blood loss that affects a woman’s physical, emo-
tional, social, and material quality of life [1]. The prevalence
of HMB among women of reproductive age ranges from
10% to 30% and is influenced by the approach to assess-
ment and the clinical setting, as well as cultural, social, and
age-driven perceptions of what constitutes ‘normal’men-
struation [2,3]. The condition has a huge impact on the
quality of life of those affected and accounts for 20% of all
referrals to gynaecology outpatient departments [4].
Moreover, it is the most common cause of iron-deficiency
anaemia in healthy fertile women [5].
There are many challenges to gauging what women
perceive as HMB [2]. There is a poor correlation between
women’s assessment of blood loss during menstruation
and their actual blood loss [6]. There is also a low level of
awareness of and understanding about HMB, and a ten-
dency to adapt to the condition, which can prevent
women seeking medical help [5]. When women do access
services, clinicians lack detailed information about the
problem, as well as acceptance of and understanding
about it [3,7].
Among healthcare professionals (HCPs), the diagnosis of
HMB is hampered by a number of clinical factors. It is gen-
erally impractical to objectively measure menstrual blood
loss (MBL) in routine clinical practice, so diagnosis is based
on information provided by the patient [3]. This difficulty
has been further compounded by confusing and inconsist-
ent nomenclature and the lack of a standardised approach
to investigation [2]. There is also a wide variation in the
availability of services for the diagnosis and management
of HMB [5,8,9].
Choosing the right treatment for HMB is guided by a
number of clinical and patient factors, including effective-
ness, safety, tolerability, cost, and the presence of underly-
ing medical conditions or comorbidities [3,10,11].
Treatment choice is also influenced by a woman’s desire
for pregnancy and the acceptability of the method pro-
posed [3,11]. When counselling the patient on treatment
choice, the suitability, acceptability, availability, and afford-
ability of each option need to be considered.
CONTACT A. L. da Silva Filho agnaldo.ufmg@gmail.com Department of Gynecology and Obstetrics, Faculty of Medicine, Federal University of Minas
Gerais (UFMG), Belo Horizonte, Brazil
Supplemental data for this article can be accessed here.
ß2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-
nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or
built upon in any way.
THE EUROPEAN JOURNAL OF CONTRACEPTION & REPRODUCTIVE HEALTH CARE
https://doi.org/10.1080/13625187.2021.1925881
The effectiveness of clinical care pathways to improve
clinical outcomes is well established [12]. Defining a clinical
care pathway may enhance the quality of care by increas-
ing patient satisfaction, and can optimise the use of resour-
ces (services, possible medications, surgical options, etc.). A
patient journey can be used to gain insight into the inter-
actions and barriers in the process for the patient, and
allows a better understanding of the entire process in
order to improve it. Despite the significant burden of HMB,
a pathway for the clinical management of women with this
condition has not yet been developed. The aim of this
study is therefore to evaluate the journey of women suffer-
ing from HMB from the onset of symptoms to any even-
tual treatment.
Materials and methods
This observational, survey-based study assessed the bur-
den, personal experiences, and path through clinical man-
agement (i.e., the journey) of women suffering from HMB.
The target group was women with HMB who were aged
18–49 years and based in Canada, the USA, Brazil, France,
or Russia.
For the survey, a semi-structured questionnaire was
developed that used quality exercises and open-ended
questions to address the life experiences and disease man-
agement trajectories of women with HMB. The question-
naire was translated by native speakers and tested for
comprehension prior to use (see the Supplementary
Material for the survey questionnaire in English).
Study design and participants
Existing nursing and medical market research panels were
used to identify eligible members who had expressed an
interest in participating in research projects. Individuals
were selected by random sampling. Each woman was sent
an e-mail inviting her to take part in a survey that would
on average take 20 min to complete, but did not specify
the survey topic. No participant received direct payment
for answering the questionnaire, but respondents did
receive credits (e.g., account points) from their respective
market research panel participation scheme.
The distribution, administration, and data analysis of the
survey were undertaken in October 2019 by the independ-
ent research organisation Ipsos GmbH (Germany); the study
was funded by Bayer AG (Germany).
In an initial screening for HMB, those participating were
asked to consider the following seven statements sug-
gested by the Heavy Menstrual Bleeding: Evidence-based
Learning for best Practice (HELP) Group, a panel of inde-
pendent physicians with interest and clinical experience in
the management of HMB.
I experience periods that last more than 7 days
a month.
I need to change my protection during the night.
I worry about having accidents related to bleeding.
On the heavier days of my period, I have to change my
protection more often than every 2 h.
I pass large blood clots during my period.
I feel faint or breathless during my period.
I avoid social activities or plan my clothing around
my period.
Women who reported experiencing at least three of
these seven descriptors –considered indicative of HMB
based on the expert opinion of the HELP Group –were eli-
gible for the study. The International Federation of
Gynaecology and Obstetrics (FIGO) working group on men-
strual disorders developed a classification system for abnor-
mal uterine bleeding termed PALM–COEIN (polyp;
adenomyosis; leiomyoma; malignancy and hyperplasia; coa-
gulopathy; ovulatory dysfunction; endometrial; iatrogenic;
and not yet classified) [5]. This study focussed on the
COEIN group of aetiologies for HMB; women were excluded
if they reported having relevant organic pathology (those
with polyps, adenomyosis, endometriosis, uterine fibroids,
or endometrial hyperplasia/malignancy were excluded).
Women were also excluded if they responded that they
did not need help for their heavy periods. Responses to
the completed full survey from 1000 of those identified as
having HMB were then analysed and are reported here.
This sample of 1000 women consisted of the first partici-
pants meeting the study criteria to fill the country quotas
for age at onset of HMB, totalling 200 per country.
Statistical analysis
Questionnaire responses were analysed overall, by country,
and by subgroup according to when in their life HMB
began. Respondents were assigned to one of four life-
stage-related subgroups (young age; switch or end of
contraception; postpartum; or perimenopausal) according
to their answer to the question, ‘Please think back to when
your heavy periods started. Which of the following state-
ments best describes that time?’:
My periods have always been heavy, already from a
young age (i.e. since menarche).
My periods became heavier since I changed my birth
control, or
My periods became heavier when I stopped my
birth control.
My periods became heavier after giving birth.
My periods became heavier in the last 10 years or when
I entered perimenopause.
Analysis of the data was undertaken using IBM SPSS
Statistics software, version 20 (SPSS, Chicago, IL, USA).
Between-group comparisons used the chi-squared test, and
apvalue of <0.05 was considered significant.
Results
Demographic information
Of the 15,107 completed questionnaires, 6210 women
(41.1%) reported menstrual bleeding characteristics that
were indicative of HMB as identified by responses to the
HELP Group seven-item screening questionnaire. Of these,
2711 (43.6%) reported a diagnosis of a relevant organic
pathology, such as uterine fibroids, adenomyosis, endomet-
riosis, or endometrial hyperplasia/malignancy; these were
2 A. L. DA SILVA FILHO ET AL.
more common in older women. Approximately one-third
(n¼2011) of the women affected by HMB (according to
HELP Group questionnaire responses) reported a diagnosis
of HMB or menorrhagia.
In the sample of 1000 respondents with signs and/or
symptoms consistent with HMB (not due to self-reported
disease) who were included in the study analysis, the
majority of women (95.3%) fell into the predetermined
groups: 273 (27.3%) had had HMB from a young age; 219
(21.9%) experienced the onset of HMB after switching or
ending contraception; 238 (23.8%) had HMB that started
postpartum; and for 223 (22.3%), the onset of HMB was
perimenopausal. The 47 women (4.7%) who could not be
allocated to one of the four predefined categories for onset
of HMB were included in the analysis as a single heteroge-
neous ‘other’group.
Across the complete sample, the mean (standard devi-
ation [SD]) age of women was 34.3 (9.1) years; menarche
occurred at a mean (SD) age of 12.7 (1.6) years; and the
onset of HMB symptoms was at a mean of 26.5 (10.1) years
(Supplementary Table 1). The majority of sample respond-
ents (65%) were parous; and 42% needed contraception.
The characteristics of respondents across the five coun-
tries involved were generally similar, but some differences
were noted. Compared with the overall sample, women in
the USA were older and those in Brazil were younger;
menarche occurred later in life for women in Russia; and
the average age at onset of HMB symptoms was younger
for women in Brazil and older for those in the USA.
Average parity was lower for women in Canada and Russia,
and higher in the USA. The need for contraception was
more frequent in Brazil and less common in Canada and
the USA.
Diagnosis and treatment
Respondents identified as being affected by HMB by the
initial screening tool included a mix of treated, untreated,
diagnosed, and undiagnosed women: 54% had never been
diagnosed or treated; 13% had been diagnosed but had
never been treated; 14% had received treatment without
being diagnosed with HMB (based on the patients’know-
ledge); and only 20% had been diagnosed and had
received treatment.
Across the predetermined life-stage categories, between
32% and 37% of respondents had been diagnosed with
HMB (Table 1). When analysed by country, a diagnosis of
HMB was significantly more frequent in Brazil (40%), France
(39%), the USA (32%), and Russia (32%) than in Canada
(23%; p<0.05) (Table 2). Overall, one-third of women had
been treated for HMB, and treatment was more common
for women whose onset of HMB had been when young
(38%) than for perimenopausal women (29%; p<0.05)
(Table 1). There were also differences in the frequency of
treatment across the countries involved, with the propor-
tion of women receiving treatment being significantly
higher in Brazil than in Canada, the USA, France, Russia, or
overall (Table 2).
Path to action
HMB affected women both socially and medically (Figure
1): 80% were worried about bleeding-related accidents;
70% avoided social activities because of their heavy peri-
ods; 40% had experienced embarrassing situations related
to HMB; 69% reported blood clots; 68% reported needing
to change sanitary protection more frequently than every
2 h; and 64% suffered from tiredness.
Instinct (86%) and comparison with previous periods
(87%) were the main reasons that led many women to
question their heavy periods (Figure 2), particularly among
perimenopausal women. Three-quarters of women had
actively sought information about HMB (76%), 60% had dis-
cussed their heavy periods with family and friends, and
61% had searched the internet for information to try to
understand their condition better.
Many women with HMB coped with their symptoms
without medical support despite needing help, with 40%
not having consulted an HCP about their heavy periods.
Nearly half of respondents (48%) thought that their periods
were ‘just one of those things’, and more than one-third
(36%) felt that it was something they should manage
themselves. On the other hand, 60% had sought medical
help and advice, and 47% had visited their gynaecologist.
Women endured the burden of their heavy bleeding
symptoms for a long time before taking action: the mean
(SD) time between onset of symptoms and seeking help
was 2.9 (3.1) years. Needing to understand whether their
symptoms were normal (66%) or why they were occurring
(58%) were the most frequent reasons for women to seek
help for their condition; other reasons included embarrass-
ment (40%) and an unacceptably high impact on their
social life (32%).
Path to diagnosis
Heavy bleeding was the main reason a woman visited an
HCP, but the need for contraception was also important,
particularly if the symptoms of HMB started at switch or
end of contraception.
There was a strong unmet need for information about
heavy periods: 53% of the women would have appreciated
more guidance on managing their periods, and others
struggled with not knowing whether their periods were
normal (40%) and what the cause of the HMB was (41%).
In consultations with HCPs, the topics most asked about by
women were menstrual pain, length of periods, and fre-
quency of having to change sanitary protection. HCPs typ-
ically asked about family history, contraception, and
family planning.
Even if heavy bleeding was discussed with an HCP, not
all women were tested or received a formal diagnosis of
HMB; the condition was undiagnosed in a mean of 67% of
women reporting HMB symptoms (ranging from 60%
undiagnosed in Brazil to 78% undiagnosed in Canada).
Blood tests and taking a family history or asking about
contraception were the most common steps taken by a
physician (Figure 3). Patients were asked to track their
future periods by 40% of HCPs, and 32% recommended
further investigation by ultrasound scan. Women were, on
average, 29 years old (SD 9.9; range 11–47 years) when
THE EUROPEAN JOURNAL OF CONTRACEPTION & REPRODUCTIVE HEALTH CARE 3
Table 1. Diagnosis and treatment of HMB in 1000 women with subjective complaints according to life stage.
When HMB occurred
Characteristic Young age End or switch of birth control Post-partum Perimenopausal Other Total
N273 219 238 223 47 1000
Diagnosed with HMB:
n(%) 100 (37) 69 (32) 78 (33) 73 (33) 7 (15) 327 (33)
Age at diagnosis, mean (SD), years 19.8 (6.1) 26.8 (7.9) 31 (7) 40.2 (4.4) 27.1 (8) 28.7 (9.9)
Age at diagnosis, median [range], years 18 [11, 45] 26 [15, 46] 31 [16, 44] 41 [30, 47] 27 [19, 38] 28 [11, 47]
Treated for HMB:
n(%) 104 (38) 72 (33) 78 (33) 64 (29) 17 (36) 335 (34)
HMB: heavy menstrual bleeding; SD: standard deviation.
Table 2. Diagnosis and treatment of HMB in 1000 women with subjective complaints according to survey country.
By country
Characteristic Canada USA Brazil France Russia Total
N200 200 200 200 200 1000
Diagnosed with HMB:
n(%) 45 (23) 63 (32) 79 (40) 77 (39) 63 (32) 327 (33)
Age at diagnosis, mean (SD), years 28.3 (10.2) 30.5 (10.6) 26.7 (9.5) 28.9 (9.7) 29.1 (9.4) 28.7 (9.9)
Age at diagnosis, median [range], years 26 [15, 47] 35 [11, 45] 25 [14, 46] 30 [14, 47] 29 [13, 45] 28 [11, 47]
Treated for HMB:
n(%) 54 (27) 55 (28) 108 (54) 70 (35) 48 (24) 335 (34)
HMB: heavy menstrual bleeding; SD: standard deviation.
Figure 1. Frequency of difficulties caused by heavy periods for women with heavy menstrual bleeding. Data are frequency of responses to the HELP Group
seven-item screening questionnaire in the survey sample of women experiencing at least three of these seven signs or symptoms (n¼1000).
Figure 2. Triggers and information sources that prompted women with heavy menstrual bleeding to understand their condition better. Data are frequency of
responses in the complete survey sample of women experiencing at least three signs or symptoms of heavy menstrual bleeding (n¼1000). Respondents were
asked to agree with statements describing triggers and/or information sources and were not restricted in the number of statements they could agree with.
4 A. L. DA SILVA FILHO ET AL.
diagnosed with HMB; this age varied depending on the
time of life at onset of HMB (Tables 1 and 2).
A total of 19% of women felt that they were not taken
seriously by their HCPs, and 20% were told that their peri-
ods were normal. Findings varied between countries how-
ever, with 25% of women from Russia reporting that HCPs
did not take their complaints seriously, compared to 12%
of women from France. Women from France were also
more likely to be satisfied with the openness of their dis-
cussion with their HCP, with 4% wishing for a more open
discussion in comparison to 16–18% of women from the
other surveyed countries.
Receiving a diagnosis was generally reassuring, but
could cause worry if it was not explained adequately by
the HCP; some women still felt that they were coping
alone despite visiting their HCP. The proportion of women
who were worried by their symptoms was higher among
those with a diagnosis of HMB than among those who
remained undiagnosed (26% versus 11%). Women with
HMB who had visited their HCP but not been formally
diagnosed often managed well because serious problems
had been excluded and they had found ways of coping
with their heavy periods.
Path to treatment
Although 29% of respondents were not aware of any treat-
ments for HMB, 60% knew that oral contraceptives (OCs)
were a treatment for it; only 20% were aware of hormonal
intrauterine systems (IUSs) as a treatment for HMB.
Some women had tried self-medication (such as non-
prescription analgesics [51%]), increased fluid intake (38%),
iron supplementation (35%), made changes to their diet or
nutrition (34%), or used herbal teas or natural medicines
(32%) to manage their HMB. Family and friends were the
main influencers in self-medication.
On average, women attended two consultations about
their heavy periods, and many had switched physician; the
mean (SD) number of different HCPs contacted was 1.5
(1.6) before treatment was initiated. Only 34% of women
had received any treatment for their HMB. Overall, 19% of
women would have preferred their HCP to provide them
with more treatment options; this ranged from 14% in
France to 23% in Russia and Brazil.
At the time of the survey, 16% of women were using
hormonal contraceptives as treatment for HMB. OCs were
the treatment most commonly offered: 41% of women had
used OCs at some point and 11% were using an OC at the
time of the survey (with 3% of women using a combined
OC, 2% taking a progestin-only pill and 6% unsure of their
OC type). On average, women tried approximately three
OCs before finding the best option for them. With regard
to the use of other methods of hormonal contraception as
a treatment for HMB, 2% had received a contraceptive
injection, 1% were using a levonorgestrel-IUS (LNG-IUS), 1%
had received a contraceptive implant and 1% were using a
vaginal ring. Surgical procedures, such as endometrial abla-
tion and hysterectomy had been used in 1% of cases
(Figure 4). For those who were receiving any treatment for
HMB at the time of the survey, treatment was successful in
69% of patients.
The journey of women with HMB: an overview
The findings of this survey are summarised and the journey
of women with HMB is illustrated in Figure 5. For many
women, the journey from onset of symptoms through
diagnosis to treatment of HMB is long and characterised by
barriers, delays, misdiagnoses, and missed opportunities for
effective treatment with the majority of women remaining
undiagnosed and untreated.
Discussion
Findings and interpretation
The most significant result of this survey is the insight it
offers into the patient journey from diagnosis to treatment.
In the present study, the majority of women intuitively
realised that their bleeding was very intense compared
with previous periods. The initial step taken by these
patients was actively searching for a cause of their heavy
periods. Some patients discussed their heavy periods with
family and friends, but, in this digital age, people fre-
quently turn to digital resources to find out more about
Figure 3. Action taken by healthcare providers in response to patients consulting for heavy periods.
THE EUROPEAN JOURNAL OF CONTRACEPTION & REPRODUCTIVE HEALTH CARE 5
health concerns, as noted elsewhere [13,14], and in this
study many respondents did initially look for information
on the internet. A wide variety of information sources are
available there, some of which may be low quality or unre-
liable –contributing to the spread of misinformation and a
delay in patients seeking help from health services, as well
as illustrating the importance of reliable digital resources
for patient education.
The lack of information regarding periods and HMB may
be a barrier for many women needing access to appropri-
ate treatments for this condition. Many women do not rec-
ognise HMB as a problem or realise that a variety of
treatment options is available. This study confirms the low
levels of awareness, knowledge, and understanding of HMB
among women affected by the condition.
Patients need to be encouraged to take action sooner
by increasing awareness that treatment is available for
HMB. In this survey, although most women did seek med-
ical help, it took an average of nearly 3 years for them to
do so. The most common reasons for waiting to consult an
HCP were thinking that the blood loss was normal or that
they could manage the symptoms themselves.
When women did visit an HCP about their condition,
they faced a lack of information, acceptance, or under-
standing of the issue, as well as diagnostic delays. Women
in the present survey were likely to have two consultations
about their period symptoms and to have consulted more
than one physician before treatment was initiated. The
presence of diagnostic delays was apparent in all countries
included in the survey and affected patients in multiple
ways, including ongoing and progressive symptoms, wor-
sening health and quality of life, and a deterioration in the
patient–physician relationship. Factors such as
‘normalization’of symptoms and misdiagnosis by the HCP
are likely to contribute to diagnostic delays and patient
frustration.
HMB was undiagnosed in a large proportion of the
women in the present study. More than half the
Figure 4. Treatment options ever or currently used by women with heavy menstrual bleeding (HMB). IUS: intrauterine system; HRT: hormone replacement
treatment; unsure: unsure of type of contraceptive pill.
Figure 5. An overview of the journey of women with heavy menstrual bleeding from onset to treatment. BC: birth control; Hb: haemoglobin; HCP: healthcare
professional; HMB: heavy menstrual bleeding; IUS: intrauterine system; ObGyn: obstetrics and gynaecology professional; OC: oral contraceptives.
6 A. L. DA SILVA FILHO ET AL.
undiagnosed patients had discussed their heavy periods
with an HCP, but had often been told that they were nor-
mal. This indicates that many physicians may not be aware
of how to identify HMB, and indeed there are few resour-
ces available to HCPs that provide credible, up-to-date
information to facilitate effective identification, counselling,
and treatment of HMB. This study demonstrates the need
for diagnostic criteria that accurately reflect patients’sub-
jective experiences with HMB, because the prevalence and
impact of HMB are high and diagnosis is often delayed.
Identification of HMB based on impact on quality of life
should be prioritised over identification based on quantifi-
cation of menstrual blood loss because the latter is hard
for patients to relate to and may result in many women
who would benefit from treatment remaining undiagnosed.
In addition, a lot of women did not discuss their heavy
periods because they felt they were not a serious condi-
tion. Many of the patients found it difficult to communicate
with their physician, and most felt that doctors needed to
focus more on symptoms. This highlights the importance
of providing education and information for patients so that
they may be empowered to openly discuss their condition
with their HCP and consider the most suitable treat-
ment option.
In the present study, OCs were most commonly used for
HMB treatment, with IUSs being used less frequently.
However, the proportion of women receiving any type of
hormonal treatment was low, despite nearly half the
respondents to the survey requiring effective contracep-
tion; a similarly low proportion had received surgical treat-
ment. This indicates that both medical and surgical
treatments of HMB are underused, and suggests the need
to educate HCPs about the diagnosis, aetiology, impact,
and treatment of HMB.
Differences and similarities in relation to other studies
The findings from this survey show that many women do
not know that HMB is a treatable condition. Prior studies
have also demonstrated this. Indeed, a global study of
more than 6000 women found that, of those diagnosed
with HMB, 35% knew nothing of the condition, 50% had
very little or no knowledge of it, and 39% were unaware
that treatment was available [2]. In addition, a previous
study indicated that fewer than half the women who have
HMB seek treatment, and showed that care is often sub-
optimal [15]. These findings and the results of our survey
demonstrate that women and HCPs must be educated
about HMB and the available treatment options.
The present survey demonstrated that most women
remain untreated despite the range of medical and surgical
treatment options available. Prior studies have shown that
oral tranexamic acid 3.9 g/day is able to achieve a 40%
reduction in MBL [16]. While OCs in general can achieve
reduction of 35–68% [17,18], a quadriphasic combined OC,
containing oestradiol valerate and dienogest, can decrease
blood loss over seven cycles by a median of 88% and is
the only oral contraceptive approved for the treatment of
HMB [19]. The 52 mg LNG-IUS is the most effective medical
treatment for HMB, achieving a greater reduction in MBL,
improved quality of life, and better long-term patient
acceptance than OCs [1,4]. The 52 mg LNG-IUS was
demonstrated to reduce MBL by around 95% over six
cycles [20,21]. For this reason, several studies and guide-
lines suggest LNG-IUS as the first-line medical therapy for
non-structural HMB [22]. The high level of women who had
not received treatment in the present survey, and the use
of oral contraceptives as the main method among women
who were receiving treatment highlights that more must
be done to ensure both HCPs and women are aware of the
most effective treatment options.
Relevance of the findings: implications for clinicians
and policy-makers/health care providers
The present study highlights two things: first, that HMB is
generally undertreated despite the available treatment
options; and second, the need for educational and counsel-
ling materials to support HCPs and patients, facilitate an
effective dialogue between HCPs and patients, and help to
reduce delay in the diagnosis and treatment of HMB.
Appropriate counselling and education can enable patients
and clinicians to share in informed decision-making. In a
clinical setting, this involves many factors, including prior
experience, existing knowledge, trust and confidence in the
clinician, personality traits, exposure and access to informa-
tion, satisfaction with the consultation process, and the
influence of family and others [23]. Patients’involvement in
their healthcare has increased in recent years [24,25], and
the inclusion of patients’preferences in the management
of HMB is crucial [26].
This study concentrated on the COIEN group of aetiolo-
gies for HMB from the PALM-COEIN classification of abnor-
mal uterine bleeding causes because these aetiologies are
more prevalent in younger women and are able to be
treated medically [5,10]. Thus it is important to raise aware-
ness among HCPs on this issue and the fact that it can be
identified and treated relatively easily.
Strengths and weaknesses
To our knowledge, this is the first study to evaluate the
experiences of women with HMB from onset of symptoms
through to treatment, thus capturing a picture of the
whole journey of women with HMB. However, this study
also has some limitations. MBL of >80 mL has traditionally
been used as the benchmark for HMB [27], but physical
assessment of MBL is difficult to achieve outside clinical
research settings [22,27]. As a result, the traditional
approach of defining HMB on volume of MBL has largely
been superseded by the more quality-of-life driven defin-
ition developed by the National Institute for Health and
Care Excellence [3]. This aspect of HMB has also been cap-
tured by items included in the HELP Group questionnaire,
which are based on clinical experience, and support its use
as an initial screening tool.
Participants in this online survey were identified from
market research panels. Although care was taken to ensure
that study recruitment was representative, this method-
ology might have introduced selection bias as a result of
including women who were more willing to discuss their
HMB and related symptoms and excluding women who
did not want to participate in industry-sponsored research
or who did not have access to the internet.
THE EUROPEAN JOURNAL OF CONTRACEPTION & REPRODUCTIVE HEALTH CARE 7
The proportion of women using OCs or LNG-IUS was lower
than would be expected and probably reflects the fact that
women receiving these therapies were being treated effect-
ively and so chose not to report or discuss HMB.
In addition, the questionnaire provided to women asked
whether they experienced the onset of HMB after switching
birth control, but did not ask them to specify which contra-
ceptive method they had previously been using or which
method they switched to. Some methods (for example, a
shift from condom use to tubal ligation) do not influence
the incidence of HMB, whereas others such as a switch
from oral contraception to a copper intrauterine device.
Thus, the questionnaire could have been more specific by
exploring whether a switch between reversible methods of
contraception, excluding barrier methods, was associated
with HMB.
Another limitation of this survey is that respondents
may not have recalled their experiences accurately, and
feelings may be subject to change over time, which could
affect the results. Furthermore, respondents self-reported
that they had been diagnosed as having HMB with no rele-
vant organic disease present, and the survey might there-
fore include cases where a diagnosis of organic disease
had been misunderstood by a patient; furthermore, diagno-
ses may vary according to the different standards of care
in the countries involved.
Conclusions, unanswered questions and
future research
In conclusion, the journey of a woman with HMB is typified
by a large burden of suffering, a delay in diagnosis, and a
gap in access to therapy. The insight into this journey pro-
vided by this study may serve as a basis on which to
enhance the quality of care, maximise clinical efficiency,
and optimise the use of resources. Further research with
long-term outcomes is needed to better understand the
condition, to help HCPs improve the path to diagnosis and
treatment for HMB, and to have a positive impact on the
quality of life of the women affected.
Authors’roles
A.L.S.F contributed to the critical discussion and analysis of
survey data, developed the initial manuscript draft and
reviewed all subsequent drafts. C.C. oversaw the design,
development and conduct of the survey, was involved in
critical discussion of survey data and reviewed all manu-
script drafts. A.L. was involved in the design, development
and conduct of the survey, critical discussion and analysis
of survey data and reviewed all manuscript drafts. G.G. con-
tributed to the critical discussion and analysis of survey
data and had input into the initial manuscript draft as well
as reviewed all subsequent drafts. R.M.L contributed to the
critical discussion and analysis of survey data and had
input into the initial manuscript draft as well as reviewed
all subsequent drafts. All authors read and approved the
final manuscript.
Acknowledgements
The authors would like to acknowledge Highfield, Oxford, UK for pro-
viding medical writing assistance with funding from Bayer AG,
Berlin, Germany.
Disclosure statement
A.L.S.F and G.G are members of the HELP Group whose formation and
ongoing work is supported by Bayer AG, Berlin, Germany. A.L.S.F and
G.G have acted as consultants to Bayer AG and have received consult-
ancy honoraria. C.C is an employee of Bayer Consumer Care AG. A.L is
an employee of Bayer AG. R.M.L has no conflict of interest to declare.
Funding
The study was funded by Bayer AG (Leverkusen, Germany) and the
distribution, administration, and data analysis of the survey were
undertaken in by the independent research organisation Ipsos GmbH
(Hamburg, Germany).
ORCID
A. L. da Silva Filho http://orcid.org/0000-0002-8486-7861
G. Grandi http://orcid.org/0000-0002-3567-3278
Data availability statement
The data on which this article is based will be shared on reasonable
request to the corresponding author.
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