|
Petitioner's Opinions To Support For A Call For Fibroid Research & Education Act.
|
Signature No. |
Petitioner |
Locality |
Opinions |
2089. |
G.T |
Saltcoats
| Had a fibroid removed when my
children were small - 12 weeks to
recover was tough going as I was
raising them on my own. Suffered
from a hernia post surgery which
required further surgery to repair -
another 12 weeks recovery.
Unfortunately the wrong materials
were used by a young, inexperienced
surgeon and further surgery was
required. A further 12 weeks
recovery. Now have very fast
growing fibroid causing severe pelvic
pain. Research and advice would be
much appreciated |
2088. |
N.R |
Reading
| I think more research is needed into fibroids as a fibroid suffer recovering from a myomectomy needs to know how to prevent it coming back and why it happened in the first place. |
2087. |
B |
DAGENHAM
| |
2086. |
V.D |
Reading
| |
2085. |
M.K |
Brighton
| Far more needs to be done. I have
been in turmoil and still undecided
because of lack of understanding and
due to have hysterectomy this
weekend!! |
2084. |
J.T |
Leeds
| |
2083. |
H.T |
Norwich
| |
2082. |
S.G |
Birmingham
| |
2081. |
C.P |
Messingham
| |
2080. |
S.P |
Hovingham North Yorks
| |
2079. |
M.A |
Grays
| |
2078. |
D.A |
Essex
| |
2077. |
O.J |
Grays.
| |
2076. |
T.A |
Grays
| |
2075. |
C.V |
CHELTENHAM
| |
2074. |
M.Q |
Bolton
| SOMEBODY PLEASE HELP ME.
22.02.2015 woke up with
severe pain on my pelvic and
back and thighs. The pain
continued to increased and
normal pain medication did
not help,I was not on my
periods, so 24.02.2015 I
went to GP surgery was
turned away by receptionist
as no female doctor
available, as she only works
part time, and was told go
chemist or come back the
following day and see a
female doctor, so I told
them I will go to the A&E
instead as the pain was so
severe that I have been in
bed for the past few days
and couldn\'t seat up and
was
in constant pain when
passing urine, A&E could not
find anything wrong with me
as they did blood test and
urine test too and I was not
pregnant, so Dr Emily
Stratta from the Bolton
Hospital A&E, during the A&E
appointment wrote a letter
to my GP asking to refer me
to see a gynecologist,
because all the medications
she tried on me did not
work, (I have the copy of
that letter and of all the
referrals, appointments and
MR Disc). Cut the long story
short of the 24.02.2015,
between the journey I had
with my GP and everything
that transpired, lets just
say the referral was made
and I had to change GP\'s
and
also logged in a complaint
with the NHS England.
30.03.2015 Bolton Hospital F
Block Ultrasound appointment
I attended, after the
ultrasound I was told I have
a fibroid, they couldn\'t
answer my questions and said
to go see my GP and don\'t
research about it, which I
did, as I wanted to know was
that the reasons I am having
pains, is it dangerous and
what is a fibroid as I only
heard about it once on the
Real House Wives of Atlanta.
25.03.2015 I visited my new
GP, Dr Newgrosh, who has
been an amazing doctor as he
has experience with polio
patients and was able to
change my medication on the
13.03.2015 as I also suffer
from neuropatic pains due to
polio from the age of 1 and
half, and the neurology Dr
Tarek Gaber had said to me
that there is nothing else
he could do for me, if i
want to conceive, I must
stop the Gabapentine or
reduce them, those were the
choice he had given me on
the 13.03.2015., however Dr
Newgrosh, he researched into
the situation further whilst
I was there, he looked in
the Books and that was
something Dr Gaber did not
do and he had the wrong
information or didn\'t
bother
to read the referral from
19.11.2014, which I have a
copy of. Anyways back to
25.03.2015, I went to see Dr
Newgrosh and he had the
reports of the ultrasound
and because I wanted to know
more, he referred me to a
Gynecologist Miss K Bancroft
and explained due to my
disability, I was concerned
about getting pregnant and
needed more information on
that too, I also asked Dr
Newgrosh for the copy of
that referral that was
written that day during my
appointment. 14.4.2015 my
husband and I attended the
gynecologist appointment at
the Bolton hospital, my
husband booked a day of work
and came as he felt he could
explain it better the pain I
am going through, we was
seen by a Dr C Bouchard, who
said If I wanted to conceive
to take 4 cocodamol and 4
ibuprofen together or if I
wanted to wait, they could
put me on birth control to
help the pain but would not
shrink the fibroid, despite
our attempt of expressing
the pain I\'m going through,
we was told an operation
would be the last stage
after trying everything
else, Dr Bouchard also
stated that she never seen
any case were the fibroid
are the source of the pain
and despite me telling her
that I was already on many
medications which included
cocodamole she insisted that
I can take Ibuprofen and
cocodamole together. At that
time I was already on heavy
medication and tried to go
back to work, to help me
with my finances, I worked
27 hours a week as an
Insurance Customer Adviser/
Sales Agent and I also
volunteered as a
Zulu/Portuguese Interpreter
and Children Advocate, as my
passion is to become a
children advocate and I
speak 4 languages English,
Portuguese, Zulu and Urdu,
but I had to put on hold on
my work, as I couldn\'t
work,
the pains was too much and
the more medications I am
taking the more unstable I
am on my feet and drowsy,
because of the polio, I rely
on two elbow crutches and a
left raised up shoe and leg
brace for suffer and falling
is common due to my
condition however this time
I was falling more frequent
and became harder for me to
pick myself up, like one
time whilst I went to work
in the call centre for the
insurance, because of the
fibroids I continuously need
the toilet,and the ladies
toilet was not on the same
floor that I worked in, so I
got the lift to the 4th
Floor and as I walked out of
the lift, I felt week and
fell, I tried so hard to
pick myself up and as much
as I kept trying the more I
became frustrated and upset
that my ability to take care
of myself is decreasing and
I was there for about 5
minutes until a colleague
was walking out and I asked
her for help and told her I
needed a chair to get up and
so she went in and came back
with another lady and a guy
with the chair, because I
cant get up with someone
holding me, as I normally
use both arms to raise
myself from the floor, but
this time I had to put my
upper body on the chair and
raise myself up, I felt so
bad and cried in the toilet
and when I went to lunch I
couldn\'t stop crying or
even
eat my food, so I tried
calling the Bolton hospital
again and they said if I
wanted to see another person
instead of Dr Bouchard, I
would need a GP referral, I
was upset that it took long
for me to get an appointment
with them and that the
appointment did not change
anything at all, so I
researched for private
gynecologist local and that
is how I found Spire
Manchester Hospital and I
told the caller my reasons
for calling and booked an
appointment with Mr Richard
Slade. 20.05.2015 I went to
my GP surgery to pickup the
records of regarding the
fibroid and that is when I
was handed a written
discharge letter from Dr C
Bouchard and I then saw that
the person my GP referred
for me to see Miss K
Bancroft and the person I
saw Dr Bouchard are two
different people, however I
was never told that at the
appointment and that Dr
Bouchard is a junior DR and
she never wrote that she
said I can take Ibuprofen
and cocodamol together and
that many things she had
said in the appointment was
never mentioned on the
letter and on the
appointment she never
touched on the subject about
my pelvis and disability and
the concerns I have to
conceive. Two of my friends
came with me to see Mr R
Slade at Spire Manchester
Hospital and I told him my
story and the first thing Mr
Slade did was explain to me
what a fibroid was and he
had this pop-up book, I was
never explained in Bolton
Hospital appointment about
the fibroid, Mr Slade also
did examine me, which was
the same exam I have under
gone many times since 2014
when I started going toilet
a lot to wee and when the
fibroid pains started,
basically the exam was
inserting two fingers inside
my uterus and he gently with
his other arm pushed my
tummy down and could feel
the fibroid and Mr Slade
said the first thing we need
to do was an MR Scan so that
we know the size and he
assured me that fibroids do
cause pain and I remember
shouting and same time with
teary eyes, I said so I am
not crazy then and he said
no you not, as we was
leaving the appointment I
felt a relief but at the
same time disappointment
that Private care and NHS
care are so different, even
when we was entering Spire
Manchester Hospital, my
friends and I were
commenting how clean and
serene the place is and how
polite and friendly the
staff are, even the toilets
are maintained clean and
hygienic. 27.05.2015 I went
back to Spire Manchester
Hospital for the MR scan,
this time I went on my own
and after the scan, I asked
for a copy of the disc,
which they kindly provided
for me and did not cost any
extra. 03.06.2015 went back
to see Mr R Slade and we
discussed the MR Scan and
how I have four fibroids,
that was a blow to me, as I
thought it was just one as
never previously was I told
under the NHS care, the MR
scan also explained why I
need constantly to wee,
because the largest fibroid
which is 7cm its pressing
against my bladder,
unfortunately when the
surgery price was mentioned,
my whole world crumbled
again and the could of
darkness returned, I am
astranged from my family due
to domestic voilence I flee
my untie\'s house in 2004
and
my father whom I last saw
2011 in Portugual we are not
on good terms as he takes
his sister side and doesnt
believe or even understand
the abuse and neglact I
suffered from his sister who
only took me for the money
my father was paying her, so
it is just me and my husband
and friends are my family.
MR Slade secretary helped to
reduce the price to around
£6000 for everything, I had
already spent my savings for
the second opinion and had
spent over £1000 including
transport and MR scan was
around £500 something, but I
still could not afford that
and Mr Slade kindly
suggested he will refer me
to his colleague at
Wythenshawe Hospital Dr
Wynn. 14.08.2015, the day
after my birthday, I went
with one of my friend and
saw Dr Wynn at Wythenshawe,
it was a cold rainy day,
because I live in Bolton, we
got the train to Manchester
and then got a taxi from
Manchester to Wythenshawe
hospital, which wasn\'t
cheap, but it was faster and
more convenient, Dr Wynn
appeared to be a nice Doctor
with experience and wise
too, so I explained to him
why I got referred privately
by Mr Slade instead of my
GP, Dr Wynn even agreed that
I should have not been seen
by a junior doctor at Bolton
hospital and my friend
explained to him how much
pain I am in, so Dr Wynn
explained to me that I need
to go to my GP for a
referral so that I can be
covered through the NHS and
he explained I would need a
Myomectomy surgery and that
it may be best for me to
come a couple of days before
the surgery so that they can
stop the blood flow down
that area so there is not
heavy bleeding as it can
result to me loosing my womb
and since I want to have
kids. Dr Wynn also explained
how we going to need an MR
Scan and that he would need
to refer me to his colleague
Dr Tuck and I explained that
I have the MR Scan Disc copy
at home. That day I was
happy and felt for a while
that everything was going
the right step, so I went to
see my doctor 24.08.2015 and
he had received the letter
from Dr Wynn for referral
and Dr Newgrosh tried to
telephone to give permission
but they were on holiday so
he wrote a referral letter
and gave me a copy,
including a copy of Dr
Wynn\'s letter. I let a week
go by and then I phoned Dr
Wynn\'s secretary to find
out
if they received my letter
and they had done so and she
reminded me that she is
referring me to Dr Tuck as
discussed in the meeting
with Dr Wynn, and for me to
wait two weeks and then call
Dr Tuck\'s secretary, which
I
did, now so that I don\'t
confuse anyone with what
took place, let me put it in
a short version for you,
from August until 24.11.2015
I was being passed around
between Dr Tuck and Dr Wynn
secretary regarding the
referral that Dr Wynn had
written to Dr Tuck,
basically Dr Tuck secretary
kept telling me they did not
receive and on the other
side Dr Wynn secretary
assured they faxed it and
was promised various
occasions a call back which
did not happen, so on the
24.11.2015 I finally broke
down as I had enough being
massed around and I spoke to
Dr Wynn secretary who
assured that she faxed it
and even posted a copy of
that referral to me and even
called me back after she
spoke to Dr Tuck secretary
and I also received a call
back from Dr Tuck secretary
and said she passed the
referral to Dr Tuck but he
is on holiday now and I was
fine with that as long as I
was on the system and was
going to get an appointment,
and so I waited. January
13th 2016 I got a call from
my manager at work and she
wanted to know what was
going on as I was off by now
from end of April, so I told
her I am waiting to hear
from Wythenshawe Hospital,
after that call I decided to
find out what was happening
and so when I phoned
Wythenshawe hospital that
day, lets just say there
were some incorrect
information given to me by
Dr Wynn secretary, who later
on said its not her fault
she is new there and when I
made a complaint with the
complaints manager she was
making excuses for them and
as for Dr Tuck\'s secretary
who pick up the call she was
trying to dismiss me by
saying we waiting for your
referral and I stopped her
by reading word for word
notes from my dairy dated
24.11.2015 saying that they
had received the referral
and so Chlowe put me on hold
and check and came back
saying yeah Dr Tuck cant see
you until Dr Wynn sends him
the MR Scan, I told her I
have a copy of the disc and
I went in rage as I was
upset and so she passed me
to Karen who I told her how
I was tired being passed
around and then she told me
the same that it has to come
from Dr Wynn, so I went to
see my GP Dr Newgrosh and I
asked him to please speak to
Dr Wynn and find out what is
going on. 4.02.2016 I phoned
Dr Wynn secretary and she
spoke to Dr Tuck secretary,
as I was insisting on
speaking to Dr Wynn or I
would commit suicide, which
I was not joking at all and
I am suicidal and on anti
depressant, which I will
state at the bottom all the
medications I am on, so Dr
Wynn secretary said that Dr
Tuck is waiting for the MR
Scan from the Spire
Manchester Hospital as they
requested, I called Dr Tuck
secretary and asked to
confirm if it was true and
karen confirmed to me, and I
burst out in frustration
crying and asked why did
Chlowe not check with Dr
Tuck on the 13.01.2016 when
I said I have a copy of the
disc and she dismissed it
and I explained how tired
and painful I been and
suicidal and she kept
repeating I cant talk like
that and passed the phone to
Claire a manager and I
explained to claire how I
have on my dairy all the
calls I have done, and how I
have been the one chasing
things up and making sure
the secretaries are doing
their job right and how
sometimes I go over 48 hours
awake and cant sleep due to
anxiety and depression and
how confined I am as I cant
go out much because I need
the toilet and sometimes I
even piss myself if I don\'t
get to the toilet on time
and so Claire said they
should receive the scan on
that day or the following
day and as soon as Dr Tuck
looks at it, I will get a
call from him, but before
that they were saying
appointments now will be in
march, she did say once he
sees the scan he will tell
me if he can or cannot
operate, well I never got
that call. Because of my
health deteriorating, I also
suffer from constant
headaches, dizzy spells
which resulted me to shave
all of my hair as I
couldn\'t
comb my hair or even touch
my head, without suffering
from achy scalp, in April I
had woken up with a terrible
headache, runny nose and
sneezing and later started
getting mouth ulcers, Dr
Newgrosh gave me hey fever
medications for the sneeze,
however I continually kept
getting mouth ulcers on my
tongue and it would pass,
but then I noticed they
would come back after a week
or two, and then recently in
January I had one big ulcer
on the inner part of my
bottom lip and I spoke to Dr
Newgrosh again and said it
is an ulcer but I didn\'t
know what was causing them
and he then established that
they are caused due to
stress. Friday 13.02.2015 I
had a disagreement with a
friend on a subject that we
both see feel differently
about, which sadly I can not
mention, out of respect for
my friend and it was also
the first argument we had,
later that evening my work
manager called so that we
can write my record of why I
am absent from work and as I
was talking about it all
over again, I became
emotional and wiping my
tears off as they kept
falling and Saturday an
event took place that
terribly upset me as it
involved my husband and my
friend arguing because she
did not clean the shower and
left her and a banana peal
as she was in a hurry, I was
fed up of both of them
telling me what they want to
say to each other and I felt
that they were taking out on
me so I ended the girls
sleep overs and get together
at mines, however I did not
see how much stress I was
going through and on
Saturday when I woke I i had
a small ulcer on the left
side of my tongue and then
on Sunday I had four ulcers
spread on my tongue and my
throat is sore and hard to
swallow and two ulcers
insider my bottom lip and
one ulcer inside my upper
lip, so I went to the Doctor
on Monday 15.2.2016 to find
out if the was anything I
could take to help with the
ulcers and well I expected a
simple and short
appointment, however I had
never imagined or expected
what the doctor was about to
tell me, he told me last
week Thursday, Dr Tuck\'s
secretary phoned him, this
was not a big deal for them
phoning him as they did so
on the 13.01.2016 and told
Dr Newgrosh that I was
expressing that I am
suicidal and he replied to
them, what do you expect
after all that they were
putting me through, anyways
going back to my 16.02.2016
appointment with Dr
Newgrosh, so he said Dr
Tuck\'s Secretary called him
last week Thursday and told
him that Dr Tuck said the
fibroids are not big enough
to operate, however they
haven\'t sent him a letter
yet, hearing those words was
like a sad joke, how they
took a long time to only
dismiss me and say they cant
operate on me, tears started
to roll down my eyes and I
kept trying to remain calm
and breathing heavily so
that I don\'t burst out
crying and cant breath, but
unfortunately it was too
late, as I got up and got
the written prescription and
headed to the door I became
more sad and couldn\'t stop
crying, even the doctor came
to open the doors for me, as
he always likes to do that
for his patient as they are
heavy doors, I was on the
hallway trying my best to
calm down and wipe my tears
as I was about to passed the
reception room were the was
patients waiting to be seen,
when Dr Newgrosh expressed
how bad he felt and that it
broke my heart I continued
to cry more but thanking him
as he has done more than any
other GP\'s have done for me
throughout my life, and Dr
Newgrosh said he will speak
to Mr Slade and see if there
is anything else we could
do, I couldn\'t stop crying
or even say goodbye to the
lady in the waiting room who
I had sat next too and was
shocked when I asked her in
urdu if she would like the
magazine I was reading as I
knew I am next to see the
doctor as number 9 had gone
in a while ago and I am
number 10, I tried to not
cry out loud but was still
breathing heavily and could
see eyes and heads rolling
and towards my directions as
I passed the room with my
head looking down and when I
got outside the waiting area
I stood there crying so bad
but had to wipe my tears and
get myself together to go
outside and had to go cash
machine and get some money
for the taxi but when I was
there I was still crying and
saw one woman buying scratch
cards and I asked for some
too, asking the lady at the
counter which one people win
on as I needed money badly
and I bought couple of lucky
dips for lotto and euro
millions as I want to so
badly to win enough to cover
the surgery, the woman asked
me if I wanted to talk, but
I didn\'t want to burden her
or and was worried that
other customers may come and
so I said its fine as she
held my hand and said pray
to GOD, well since the
fibroid problems have
happened I had lost even
more faith in GOD as I felt
its not fair that I have
been through so much to get
to where I am and yet I am
the one punished and not my
evil untie and that I am the
one isolated without a
family and how lonely I get
in the flat on my own when
my husband is out at work,
all I have are my 5 gold
fish and TV and the
internet. Ever since I was
young and going through the
abuse and neglect, what kept
me going was the hope of
having a family of my on one
day, and I believed in
getting married first and
then start a family which is
why when I was young and
lived in hostel, street and
friends homes I practiced
safe sex. My husband and I
have stopped being intimate
since April and sleep in
different rooms, however I
did try in January 2016 but
intercourse was painful so
no more until the fibroids
are removed and constantly
argue as he feels I should
keep pushing the doctors and
even friends keep phone and
texting on what I should say
or do, however non of them
are in my shoes and don\'t
see how much my GP does, so
I decided on weekends to put
my phone on silent and after
business hours during the
week so that I do not deal
with friends and even had
sent a message saying I will
keep them updated once I get
information but for now I
need my space. Because of me
crying hysterically after
the appointment with Dr
Newgrosh, I came home and
immediately telephoned my
manager on her mobile as it
was her day off and felt I
could speak to her as she
has been following it as we
kept in contact, so when I
woke up the next day my
throat was even more tighter
and painful as if I
swallowed razors and they
cutting my throat and when
my husband called me from
work I couldn\'t even open
my
mouth and speak properly and
I couldnt even eat and ate
once the whole day bread,
backed beans and plain
ommlett and it took over an
hour as it was sore as I was
chewing the food and also
painful to swallow, so I am
now taking time off to calm
myself so that the mouth
ulcers can clear instead of
it getting worse like it has
done the past few days and I
continue to take Benzydamine
to help, even though I am
not doing nothing but rest
in bed and watch tv and
taking my medication, I can
not shut it out of my mind
not even for a minute and
that is why I decided to
come here and tell my story
in the hopes that someone
can help me, I also need to
search for a medical
advocate to help me, so that
way I don\'t feel alone in
this fight and stressed. I
just don\'t understand how a
second opinion says one
thing and yet NHS is saying
a different thing, and with
regards to Bolton Hospital I
had a long conversation with
a manager, which I have
reordered and the manager
was telling me, Miss
Bancroft could not see me
that day as she was in an
operation, however she did
leave a clear written
instruction for Dr Bouchard
and it was Miss Bancroft who
decided not to operate on me
and the manager at that time
was then given me an option
to see Miss Bancroft and
this time I wouldn\'t need a
GP referral, by then I was
referred to Wythenshawe and
had already gone through the
MR Scan so I said no. But
what puzzled me is that when
I asked why didn\'t they do
an MR she was saying that
not all cases get an MR as
it is very costly on the NHS
and that is why they have to
choose the seriousness of
the case that gets an MR
Scan and I even had asked
how many Fibroid does the
ultrasound show and she
couldn\'t answer that and
when I said the MR shows 4,
she then explained that the
ultrasound does not detect
that as they go by sound
wave. Basically she had an
answer for every excuse,
also she said I could write
in to request my record and
when I did, I got a letter
and an application saying so
we can release your NHS
record, I must pay a fee, I
felt that is a way of the
NHS making it harder for
patient\'s to log complaints
and because I was focusing
on my health, I decided to
let it go. I have come up
with two ideas and one is to
get an advocate and fight
the NHS for the surgery and
the other one is to find a
way to fund the private
surgery, so maybe raise
money through a charity
page, I am not sure yet, as
I am still research online.
Ever since I started having
periods they have always
been heavy and inconsistent,
sometimes I get two periods
in one month and a lot of
blood clots too, as for the
rest of the medication I am
currently on are:
Paracetamol 500MG TWO four
times a day, Naproxen 250MG
2 Three Times a day,
sometimes I take it four
times a day, due to dizzy
spells when I seat up or
walking, even when lying
down. Mefenamic Accide 500MG
one Three times a day when I
am on my period, Setraline
100MG, one at night before
bed, for depression, Codeine
Phosphate 30MH 2-4 Four
times a day, depending on
the day how painful the
fibroids are, Omeprazole
20MG One daily when I take
mefenamic acid, Tranexamic
acid 500mg when on periods,
to reduce heaviness of the
periods, as its so bad that
I leak on my bed and in 2014
at work I leaked on a chair
and ruined it and had to go
wash and dry my clothes,
Amitriptyline 10mg two at
night, they help me with the
neuropatic pains, and I was
also give oral morphine to
help with the pain, but Dr
Newgrosh became concerned
with my depression that I
was miss using them, as they
knocked me out to sleep, so
one worst days I would drink
two or three caps full of
them and only have a little
bit left in one bottle, that
is almost finished. If
anyone knows in here what
other steps I can take to
get some results please do
not hesitate in contacting
me as I fear that one day I
will do something drastic as
right now I have been
contemplating of going to
Wythenshawe hospital and
demand to see Dr Tuck whilst
I take all the medications
and die in front of the
person who dismissed me
without even seeing me or
giving me a chance to
explain myself, however I
have my husband to think of,
because I can not just think
of myself, and my husband
has just gone back to work
after taken long leave to be
with me, as he feared I may
take my own life, because of
my condition, he had to take
more of the responsibility
of the chores and even
cooking and he would come
from work at 8pm and cook
for us, put the clothes in
the washer and then wake up
at 5:30 for work. |
2073. |
N.S |
Keighley
| I have suffered from fibroids for
about 7 years after having continuous
blood transfusions my doctor decide
to do something about them she said
if left untreated you\\\'re heart will
stop
with the amount off blood loss
because I\\\'ve collapsed a few times
and been very poorly with them I had
a uae about two years ago now
although the bleeding a not as heavy
but the pain is still unbearable I
don\\\'t
think I can go through this amour off
pain every month I will probably have
a hysterectomy eventually |
2072. |
K.D |
South Queensferry
| This is such a debilitating
condition with a real lack of
research into causes and
treatment. More research is
necessary to ensure so many
women can lead normal, pain
free lives |
2071. |
E.G |
London
| |
2070. |
K.R |
Hove
| |
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