-->"Elle Sera is helping me with Neurofibromatosis 2 " @Amyversuslife – Elle-Sera

"Elle Sera is helping me with Neurofibromatosis 2 " @Amyversuslife

"Elle Sera is helping me with Neurofibromatosis 2 "      @Amyversuslife
I’ve just purchased a subscription to Elle Sera for the first 
time, after following its founder Elissa's journey from the second she started to share her idea. So why has it taken me so long to join the chicest girl gang known to man? Well, long story long (yesI said that right!), chronic complex disease is why. I’ll try and briefly share the 24 year journey, and why now at 34 am I
starting to deal with my hormonal lady problems.

When I was just 10 years old, despite being a little lady who
could dress herself and write really well, I began to struggle to
do those things (and more). After a bit of a battle with A&E
had my very first MRI scan where I was diagnosed with a
large benign tumour in my spine which was forcing its way to
my brain.

A giant surgery, one damaged nerve, some mix ups and a
repair job later I had some genetic tests completed. At 12 years
old I stood completely naked in front of a female nurse and a
male specialist for them to see what signs I had of a condition
called Neurofibromatosis 2 (NF2). Blood tests and the skin
checks confirmed I do indeed have NF2. NF2 causes (usually)
benign tumours to grow on the nerves, primarily in the central
nervous system (brain and spine).

I was told at an appointment when I was just 14 that it would
be very unlikely that I could have children of my own. At the
time it didn’t bother me, and I didn’t know why or care to ask.
It’s only through growing up and a great mum that I have
discovered a lot about NF2.

I’m getting to the point about my Elle Sera journey, promise!
Over the years, I began to question the “baby thing” because
naturally I wanted a baby (or 4) of my own. I quickly had to accept the fact that would not be in my life path.
The reason being that NF2 is more common in women than in
men. Although the specialists that I see dispute that fact, it’s
undeniable when you join an NF2 forum and women are
finding themselves completely paralysed following a
pregnancy because the tumours have grown so fast and large.
This is not true for all women with NF2, however it is known
that puberty, pregnancy, and menopause can cause significant
changes in tumour growth.

For that reason, I’ve been sadly cautious to avoid pregnancy
and only dabbled with using the contraceptive pill and the
copper coil for a while. So very little is known about the
relationship with NF2 and female hormones (to my knowledge
anyway) I’ve had to just “play it safe”, and make my own
informed decisions on many health related issues.
In my teens and as a young adult, I suffered with heavy,
painful periods which I just put up with because that was
“normal”. The older I’ve got, and the better my diet has
became, I have a really regular cycle, with little pain and a
manageable flow.

I think the surgery to remove a benign brain tumour in 2018, a
surgery in 2021 to remove a malignant brain tumour, a surgery
in 2022 to remove the regrown tumour, and 33 days of
radiation may have some influence on why I took the leap to
start taking Elle Sera. Given that the brain controls our
hormones in many ways, it is not surprising that I’m having
some changes. Sadly, the neurologists offer very little
information on just how wide of a scope a brain can be
damaged and impact life outside of my vision, my hearing and
my walking.

Until recently, my 22 years of having periods has been pretty
manageable, the symptoms of PMS were always normal
comparable to my peers. After keeping a close eye on myself
since the most recent surgeries, I am absolutely certain I am
living with PMDD. I usually cope really well with the PTSD
(caused my many mix ups and health woes) and other
symptoms associated with my NF journey, but around 10 (!!)
days before the flow happens, I just can’t cope. It has been
unbearable for me and my loved ones, my energy sinks, the
absolute worst thing is the apathy, the spiteful things I say,
catastrophic thoughts, the depressive thoughts of dying (not
SH) darken my days. It’s absolute torture I am loosing at least
two whole weeks a month between the pre menstrual
symptoms and the flow. The mental symptoms do begin to
wind down on day one of the flow, by the time that’s over 4/5
days later I’m my absolute best self again for a fortnight, if I’m
lucky. I can handle the symptoms of my PTSD so much better,
I feel physically stronger, I am my normal hopeful self, I am
grateful for this traumatic life I have and more. The drastic
difference is like night and day, or Jekyll and Hyde - really
horrible to live with.

It just makes sense for me to dive in to Elle Sera now - I trust
natural medicines, my body is crying out for help, a hormonal
imbalance will make many symptoms worse for me, I have
nothing left to lose! I have to take a chance on balancing my
hormones with Elle Sera because I do not get any advice from
the Geneticist who is the top dog when it comes to NF. The
usual answer from the GP would be the contraceptive pill
because isn’t that the answer women get for any female related
situation that they’re dealing with?

I will be keeping track of how Elle Sera works for me, from
when I start to notice the benefits which many women are
experiencing. I really can’t wait! I might be asking too much to
expect an improvement in the next PMS cycle, but we will see!
My name is Amy, up until I was diagnosed with the third brain
tumour in November 2022, I regularly shared my health story
on several platforms. I really haven’t felt like I have had much
to say about that this year until now. Going forward, I hope I
can share my Elle Sera and health journey regularly on
Instagram. If you’d like to know a little more about me you
can find me on @amyversuslife
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