What
is normal blood loss during menstruation?
Scottish scientist, Dr Steve Campbell,
has created a website, which allows women to see if
their menstrual blood loss is small, average, or too
much. The concept behind the site is that most women
lack a visual reference (or calibration in scientific
terms) when assessing menstrual loss.
The website provides a reference using donated venous
blood on sanitary towels [napkins or pads]. There is
also an interactive blood loss calculator, record sheets,
information on tests and treatments and a section for
women with language difficulties, learning disabilities
or for use by learning disability nurses. The site makes
it possible use to improve research on dysfunctional
endometrial bleeding by helping the patients report
menstrual loss better to their doctors.
In the following article Dr Campbell tells the funny
tale about how he created the website and why.
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| Local
Research: a nurse’s experience |
During the course of research carried out here by my
medical colleagues it became obvious that a female research
nurse measuring menstrual blood loss in research studies
could very accurately estimate whether or not women
were suffering heavy periods without making measurements.
This was despite other studies, which suggest women
have difficulty scoring loss and reporting it accurately
to their doctors.
The reason the nurse was so good at estimating was
that she had measured loss many times and simply came
to know what 'heavy' looked like. The nurse, a fastidious
person, had never undertaken laboratory work before
and so kept a visual score to check that the results
of her chemical tests made sense. She tried 2 methods
a ‘rough score’ where she just looked at
the collection and made a guess and a more precise method
where she sorted the used tampons and towels into piles
of increasing loss then giving a score to every towel
or tampon. By attributing numbers to the visual score
she became confident that she could make a good tally
and so produce a very good guess about the volume of
blood loss. We used her notes to show that her system
produced very useful guesses and have presented these
findings at 2 small medical research meetings.
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| Can
other women also estimate accurately? |
We have also shown that a group of gynaecology nurses
can accurately grade a group of towels to which known
amounts of donated blood have been added (actually,
the same ones as those featured on the site).
The exercise was then repeated with female laboratory
staff and secretaries. These women could also grade
loss very accurately despite having no professional
medical experience. Indeed one woman later returned
and told me what level would be regarded as heavy. In
view of what I had read in research papers I found this
surprising. The reason she knew was that she had had
normal periods and then suffered a menstrual problem
that required treatment. Her experience and level of
knowledge did illustrate very clearly one thing that
doctors and gynaecologist are well are of: women know
when they are experiencing a menstrual change. It also
impressed upon me the possible usefulness of informed
estimation.
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| A
gynaecologist has the idea for the website |
One of my senior academic medical colleagues happened
to be in my office to ask a question about computers.
I said, “take look at this” and showed him
a graph of the nurse’s estimate versus the measured
loss. Being a bright guy, he instantly suggested that
if other women could be shown what loss looked like
then they could report it better to the doctors and
nurses involved in their healthcare. He stressed to
me how women would often tell him how severe their loss
in the toilet is and how concerned they become about
it. He immediately suggested having an Internet site
to explain loss. Ironically it was a man looking at
a graph, who felt that menstruation should not be a
taboo subject, although admittedly a gynaecologist.
|
| My
wife and mother’s reaction |
I discussed the gynaecologist’s idea with my wife
and mother, who also happened to be there at the time.
Neither saw any problem with what my mother, despite
her strict religious upbringing and socially conservative
views, referred to as ”a natural biological function”.
Encouraged by this I announced that when I was going
out that Friday evening to buy the food I would purchase
a large number of sanitary towels from the supermarket
so that we could add known amounts of blood to them
in the laboratory. Both my wife and mother immediately
jumped in saying that they would do that for me. “'Nonsense'”
I said, “after having to buy heavy duty sanitary
towels following childbirth, this is nothing to me'”.
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| My
embarrassment and the need for research |
I duly unloaded the food at the checkout then the small
mountain of sanitary towels and placed the 'next customer'
divider between them and the food. In as masculine a
voice as I could muster I asked for a "separate
receipt for the sanitary towels please". My face
started to grow crimson and felt if it was about to
catch fire.
I had to say something to the young female checkout
assistant, who was possibly in her mid 20s. "Its
for medical research" I said again in my most masculine
voice. "Well, somebody’s got to do it",
she said softly with a gentle and unembarrassed smile.
Of course! She was absolutely correct. It is a subject
where more research is needed.
|
| What
did my wife (a doctor with 3 post-grad qualifications)
know? |
In order to find out whether or not women did have a
visual reference for assessing loss I asked my wife
whether anyone had ever shown her used sanitary towels
either as girl, as a medical student or when she was
undertaking a post-graduate medical diploma in obstetrics
and gynaecology. No, not even when she was training
in the most medically relevant speciality. I then asked
my sister rather sheepishly, then my mother, and then
some of my female colleagues.
It was clear that the site of menstrual loss had become
a taboo, at least in this country. Even if a woman were
to show her doctor, gynaecologist or nurse what an example
of heavy loss looked like would they know? By consulting
www.menstrual-blood-loss.com
they would at least have a better idea.
|
| Loss
goes unreported |
Research has shown that 30% of women attending hospital
gynaecology clinics for other menstrual problems might
not appreciate that they have heavy loss (Referral for
menstrual problems: cross sectional survey of symptoms,
reasons for referral, and management, BMJ
2001;323:24-28).
We have therefore been motivated by the knowledge that
some women suffer heavy loss without even realising
it. On the other hand the research evidence suggests
that some women worry unnecessarily when their personal
loss is not likely to be causing a medical problem.
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| My
blood in the toilet |
Around this time I became aware of a research paper
that tried to include estimates of loss in the toilet
when assessing menses. We therefore simulated loss using
my own blood in the toilet. (Although I am now a bit
squeamish about needles I could not really ask for a
colleague to volunteer, as often happens when someone
needs blood in a research lab.) The very academic medical
immunologist who took my blood for this purpose said
it was the first time in her life that somebody was
going take the blood that she had just withdrawn and
put it straight into the toilet. She obviously found
the situation pretty bizarre, although understood why
we were doing this. Never having suffered blood loss
in the toilet myself, I was amazed what it actually
looked like. 5ml in a man’s hospital toilet looks
really alarming although this is not even half the volume
of a small bottle of nail varnish.
At this point a pharmaceutical company sales person
came into the toilet. He saw the medical photographer
and I jammed into the toilet cubicle and my blood in
tubes in a tray on the floor. “The mind boggles”
he said and left with the most perplexed look on his
face that you are ever likely to see. We burst out laughing,
had to stop the work and calm down so that we could
get steady pictures again. We then continued to add
more blood. As careful reading of the research paper
shows, it was difficult for us to see the difference
between 5 ml and more than that.
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| Did
my sister understand the volume of loss? |
Later, when testing an early version of this web site
on my sister it became obvious she did not really understand
what the volume of loss looked like, partly because
she baked and cooked in fluid ounces. She also did not
know how these small volumes related to the total amount
of blood in her body. I therefore returned to the supermarket
and purchased everyday household items on which the
volume was marked and had these photographed in the
elegant female hand of a trainee gynaecologist.
|
| Can
pictures really help: an anecdotal account |
Clearly a photo is not as good as the real thing. The
reason the nurse can estimate very well is that she
is very experienced, understands the significance of
dark staining and light staining and can also see and
feel the weight of the real thing. The obvious question
is: can pictures really help? I needed to find a volunteer.
One day my sister-in-law and I were chatting at home
and she asked me about how work was going? I explained
we had an early version of this site. “Interesting”
she said, “I think I have heavy periods”.
After we went over the site together I told her that
it seemed very likely she was having a very heavy loss
and emphasised that she could probably get effective
treatment by seeing her doctor. Despite this knowledge
she did nothing about it at first. The problem became
worse; she became short of breath and eventually felt
that she had had enough. Hopefully she felt more confident
about talking to her doctor after having looked at the
pictures. Now she has seen her doctor and has had an
effective treatment. These personal experiences lead
me to believe that is was worth pursuing the development
of the site and that photographs could help. The programmer
who has worked with us then produced a script to create
printable (PDF) pages of roughly life size in the hope
that this would add a touch of realism (for examples
click
here). The gynaecologist who worked with me then
had then had the bright idea that an interactive online
calculator (click
here) might help women to make a decision about
whether or not they had a problem.
|
| Would
the pictures help women who can’t read? |
When my wife, a psychiatrist working with those with
a learning disability, saw the pictures of household
items she felt it would be helpful if women with a learning
disability could get access to the site. She felt that
the very visual aspect of the site would be useful to
those who could not read and pointed me to an excellent
series of “books without words” used for
medical education. This is why drawings appear on the
site. A speech and language therapist, who my wife introduced
me to, explained that when helping those with a learning
disability it is best to start with the real thing (she
suggested an unused sanitary towel for example), then
in order of preference a photo, a drawing, a symbol
and last of all writing. Not surprisingly there were
no female volunteers to be patients in illustrative
photographs, such is the taboo of menstruation, although
one female gynaecologist who has carried out laboratory
research with me offered to play the doctor.
|
| Hopes
for this site |
The concept of the web site is a simple one. If the site
helps women to understand when they are having heavy loss
then my embarrassment will have been worth it. The subsequent
effort we have expended in producing the site might also
help medical professionals know when they are confronted
by heavy loss. The non-public research-oriented part of
the site will hopefully help research studies involving
women with menstrual problems.
Treatment is available and for many women can be very
effective. Recent medical developments have made effective
treatment less invasive and should therefore give women
even more reason to go to www.menstual-blood-loss.com.
Hopefully a visit to the site should help them find their
way around a subject their mother never taught them.
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| AN
ACADEMIC VIEW: the pathologist's view |
I did have another more academic reason for wanting
to create this site that partly sprang from a conversation
with a (male) pathologist with whom I collaborated in
research. We were discussing why so many histopathology
reports concerning the endometrial lining of uteruses
removed at hysterectomies are described as ‘normal’
despite the complaint of heavy periods.
He explained that, often little or no clinically useful
information is provided by the pathologist except when
there is cancer (to simplify slightly). In other words,
after examining microscope sections of human uterine
tissue the pathologist usually does not send back a
report to the gynaecologist that helps to explain why
the patient had heavy bleeding. This might be partly
due, he suggested, to the fact that pathologists and
gynaecologists usually do not work together either on
an individual patient basis or systematically in research
on groups of patients to define what is normal and what
tissue appearances are associated with particular clinical
conditions.
The classic, but still relevant, paper on the human
endometrial cycle (Noyes,R.W., Hertig,A.T. and Rock,J.
(1950) Dating the endometrial biopsy. Fertil.Steril.,
1, 3-25.) even includes infertile patients collected
together with other women who have other types of complaints.
|
| What
is normal? |
|
In addition, there might possibly be a great range of
what is normal in terms of tissue appearance. The differences
that cause problematic bleeding might also be so hard
to detect that simple morphological observation alone
might not be productive, even with ideal communication.
There have been many research studies on normal changes
that occur in the endometrium (lining of the uterus)
during the course of the menstrual cycle and others
that have sought to investigate the causes of bleeding
between periods and heavy periods. Currently there are
research groups studying blood vessel development and
structure in the uterus.
Like the pathologist, I would hope that one day the
efforts of these doctors and scientists will pay off
and help explain, diagnose and improve treatment for
menstrual bleeding problems.
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| What
do patients tell their gynaecologist? |
The other more obvious reason why it might be difficult
to equate what the pathologist sees with what the gynaecologist
deals with is the lack of accurate menstrual loss reporting
by patients and their referring doctors. There is, and
not surprisingly, a resistance amongst women to collect
used towels and tampons so that chemical blood loss
measurements can be made in hospital laboratories. However,
even if women were to make such collections there are
not routine services for measuring loss.
These days many hospital laboratories are filled with
very fast robotic machines measuring complex biochemical
features on small blood samples. There is simply not
the scope for rooms full of large receptacles hydrolysing
blood on towels on tampons and then technicians later
squeezing them out by hand wearing protective clothing.
The experience behind this web site suggests that there
is perhaps no need for such procedures if reliable estimates
can be made by a trained nurse or by women themselves.
Presently however, about fifty percent of women, recruited
to some research studies on heavy menstrual loss, have
less than 80 ml blood loss per cycle. In one local research
study where women only had their menstrual blood loss
measured if they felt they had heavy or very heavy bleeding
or where their general practitioner had referred them
with heavy menses, about 40% had more than 80 mls loss.
The picture is further complicated by the fact that
factors other than blood loss volume are important.
A summary graphic from an earlier study shows the main
symptoms women have for seeking hospital-based treatment
(click
here)
Could there be a way to improve research on dysfunctional
endometrial bleeding by helping the patients report
menstrual loss better to their doctors? Perhaps www.menstrual-blood-loss.com
is one step on the way forward.
|
| What
do family doctors tell hospital gynaecologists? |
It is possibly not just patients who misreport. Research
done by interviewing patients from hospital clinics has
suggested that community based medical general practitioners
over-report menstrual blood loss as a major problem when
referring women to hospital-based gynaecologists. Or at
least the women report other symptoms such as pain and
cycle irregularity as important when they arrive at the
hospital. See the discordance table of Warner et al (click
here).
|
| What
range of losses are found in research studies? |
Women who feel that feel they have a problem sometimes
become involved in research studies concerned with menstrual
problems. When women bring collections of towels and tampons
to the hospital laboratory as part of research studies,
an enormous range of loss is encountered. I am aware of
values ranging from 4 ml (just a spot) to a massive 1300
ml. The women at the bottom end of the range possibly
have another (menstrual) problem that needs dealt with.
The women who suffer torrential loss clearly need urgent
help and deserve to have their accounts taken seriously
(rather than just being prescribed Prozac for the associated
depression that they might suffer). The diagnostic problem
is how to distinguish one extreme from the other and reach
some sensible decision about those in between.
Many gynaecologists regard eighty millilitres of blood
loss per cycle as the level at which menorrhagia (heavy
periods) can be diagnosed and should be treated, although
others suggest a higher figure. In reality all figures
used for treatment decisions are arbitrary as they merely
correspond statistically to some percentile in the range
of values that can be encountered. Sometimes these figures
and have known risk factors associated with them and
so can be used as the basis for rational treatment.
Clearly other features need to be taken into consideration
when deciding whether or not to treat.
|
| Can
women make clinically useful blood-loss estimates online? |
The blood loss calculator on this site applies the nurse’s
scoring system when she makes real measurements in the
hospital. When a choice is made in the calculator her
numerical score is attributed to each value and a simple
total is produced. It might be that woman who use the
blood loss calculator after seeing the online images or
printed photos either overestimate or underestimate. The
latter is more likely. If it was the research nurse who
was doing the scoring based on pictures, the score number
might roughly corresponded to the loss in millilitres.
Our data suggest that she can easily and reliably discriminate
heavy and light loss in real life. Clearly there will
be uncertainty around what some would regard as the crucial
80 ml threshold for treatment. (I hope however that you
have already been persuaded that any figure is arbitrary).
As yet we do not have clinical research evidence to
know how reliably other nurses or women can make clinically
useful estimates based on the online images or pictures.
Until then we hope that this site, if used wisely, will
be helpful.
Perhaps gynaecology nurses, gynaecologists, community
based doctors, or the nurses who work with them might
also benefit from even a brief look at the site. Those
interested in the research background can follow the
hyperlinks on the ‘Other information’ pages.
© 2005 Dr Steve Campbell
Reprinted with permission
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| SEE
ALSO |
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