Belle's
Endometriosis Story
I was Diagnosed with Endo in 1992, but had been suffering
from ovarian cysts since I was 16 yrs old. After being
diagnosed by lap, I had a horrible experience; 3 weeks
after my Lap, I ended up back in hospital with PID
and a perforated bowel. I was septic and very ill.
It took a few years to recover from this and I would
not let a doctor operate on me, unless it was an emergency
and I had no choice in the matter. It was after this
experience and the fact that I am a Registered Nurse,
that I began my research into Endometriosis.
In 1992, I started with the Endometriosis
Association in Sydney and Victoria and I kept
going until I finally reached the internet in 1995.
I started researching the Internet and found some
information, but it seemed I really had to look hard
for it. In 1996, I was still researching and looking
for a doctor who I could trust in doing my surgery.
It was at this time I had an idea: to make a documentary
and have my surgery filmed. I knew I had to find a
doctor who knew about Endo and was competent in removing
it and who was willing to show the world what he knew
by performing my surgery while being filmed for the
documentary.
It was around 1997 when I met Harvey,
a filmmaker and writer, and he accepted my offer to
make the documentary
with me. He prepared a script with me and we interviewed
a few Doctors together to do my surgery. This made
my appointments so different, as you can imagine.
We found a Professor who had been
working with Endo for 30 years. He had all the qualifications
and was kind, caring and he knew Endo extremely well
(his wife has Endo also). This Professor agreed to
do my surgery and be filmed. I was so excited, as
we had flown an hour from Sydney to get to Melbourne
for this interview.
My surgery date was set for February
1998, but due to the fact that I got a viral infection
and was in bed for 3 months, the surgery was canceled
and we had to reorganize everything all over again.
My surgery was rescheduled for May 1998.
This is about the time I found Monica
on the Internet. She was in Austin, Texas - it seemed
like worlds away. She too was trying to make a documentary
but had stopped due to lack of funds. After many e-mails
and a lot of thought, we had the idea to do a joint
US/Australian production and join forces. We swapped
information and then we told each other how we saw
the documentary
and surprisingly our ideas were very similar.
Harvey and myself and Monica emailed
each other for about 6 months before I finally called
Monica and we spoke on the phone. Once we started
communicating on the phone, we kept it up, as it was
so good just to talk to each other. We did this quite
regularly. I had my surgery in May 1998. I spoke to
Monica the day it was canceled due to my latex allergy.
Monica just kept me going, by saying "it adds to the
reality of how endo effects our life." She truly helped
me stay focused and she was so right, even though
I had to go through so much, it made everything what
it was..."Real Life As an Endo Sufferer."
I must say the Victorian
Endometriosis Association was such great support
and some were even by my bedside, all of the way through
my surgery. Lorraine helped with the support groups
being filmed; in fact I don't know what I would have
done without them, particularly Lorraine Henderson.
My surgery was rescheduled, this
time to another hospital. The camera crew got to see
what it is really like to have Endo. I was sick for
about 50% of filming and we had to reschedule quite
often. (The documentary
ended up taking over 2 years to complete).
After 9 months of writing and talking
on the phone, in September 1998 after canceling my
flight 4 times (I was sick post-lap), I finally made
it to Austin, Texas to meet Monica. It was all very
exciting, as it had taken so long to arrange. The
film crew had been waiting 3 or 4 weeks for me to
arrive.
It was then that Harvey and Monica
finished joining the scripts together. We finished
a bit more of the filming (I was too sick too travel
to Oregon and was very disappointed, as I would have
liked to have met Dr
Redwine). By this time, we had nearly finished
all the filming. We had about 1/3 to go. I stayed
in Texas and Monica and I worked together as I lay
in bed (I had become ill again and was vomiting and
had chronic diarrhoea). Monica was like an angel and
brought me everything I needed. She just took such
great care of me. I will always be thankful. We still
accomplished a lot even though I was sick.
In February 1999, it was four months
later and Monica came out to Australia for the final
filming and to start the editing process. All up,
we had been working on this Project for over 2 years.
Monica's visit was everything we had hoped for. We
were finished: all we needed were titles and the rough
edges smoothed out.
It had been the most amazing 2 1/2
years. It had taken so long, and so much effort, but
it was worth every minute and every cent. I am blessed
with all the friendships I have made throughout this
documentary.
It definitely has enriched my life in so many ways
and continues to...even to this day.
(The Year 2000) Being a part
of online endo forums, such as The
ERC which is an Endo
Angel Network, these Endo Support Forums along
with AustEndo, OBGYN.net
and WITSENDO, have helped myself and many other women,
through some very dark and lonely times. These Computer
based support forums, are some ladies only communication
with the outside world and they must be recognized
as being a vital part in the support of endo sufferers
world wide, uniting us all together.
For me at the moment, I am working
on Part 2 Of the documentary,
which has been taking up a lot of my time, besides
trying to create Endo Awareness every way I can. As
far as my health goes, I am still taking narcotics
and I am seeing a pain specialist. I have another
chronic pain state to deal with, after being hit by
a car in Oct 1998, just 5 months after my laparoscopy
surgery for the documentary.
My last Surgery was January 2003.
I must say that I arranged with my pain specialist
to have a PCA ( patient controlled analgesia) machine
so I didn't have to deal with nurses and waiting for
pain relief; it made my recovery and surgical experience
such much less traumatic and I suggest all sufferers
discuss it with your endo specialists or pain specialists.
Before my last lap my pain was not
controlled like it should be and I was experiencing
terrible pain episodes...sometimes I wasn't able to
walk at all and it was then after my lap that I was
diagnosed with adenomyosis, which later all
made sense. 12 months ago thankfully I stopped taking
the methadone, which I must say I disliked immensely
(I felt like a zombie). I had tried just about
every narcotic there seemed available. Then finally
I was begun on the Duragesic or Fentanyl 5 mg patch..which
did nothing in the beginning ..I was then increased
to the 7.5mg and then not long after the 10mg patch
which helped a lot. I am still on it today and
along with the Oxycodone 20 mg for break through pain
and I also take Lamictal 200mg and Deptran 200 mg
and although I still suffer a lot of pain, thankfully
it is so much better controlled than it ever
was before.
After my surgery in January, I was
begun on Synarel for the second time (the last being
1994). I chose to take Synarel against my doctors
advice and the only reason he prescribed it was because
I was traveling for 3 months; anyway, I have responded
very well to the Synarel which has put my adenomyosis
nearly into remission but unfortunately my endo didn't
respond as well, the adenomyosis responded so much
so that when the course was finished in July 2003,
I begged my endo specialist for another 3 months worth
until I can get a bone density test in Sydney..which
is now 3000km from where I live and if I have bone
loss I will stop it immediately. Of late the pains
been getting worse again and I am worried that the
Synarel may not continue to do its job, which will
disappoint me greatly. I will do anything to not have
a period except taking chemically made hormones...which
doesn't leave me much choice.
I may still believe that sometimes
it is better to wait and observe, than continuously
operate on an endo sufferer, causing more adhesions
and damage to surrounding structures. I could have
easily had over 15 -20 surgeries by now but being
a nurse I have been conservative and not allowed the
doctors (who were NOT endo specialists ) to operate
on me at the drop of a hat and believe me they tried
many times, but I was lucky and able to refuse.
I know this isn't always easy, especially if emergency
surgery is really needed and the endo specialist may
not be available and we get who ever is on call. The
pain can be endless and this is where some times,
for instance a Pain Specialist or clinic or even a
Pelvic Pain Specialists can be of great benefit.
Even though I am not advocate for
hysterectomies, now that I am almost certain I have
adenomyosis ...which can only be diagnosed 100% by
actually cutting the uterus and looking into the muscle
wall ... by visual means and pathology. Even though
this is the case, I am almost 99.9% sure I have adenomyosis,
firstly because of the way my uterus looked (soft
and boggy and asymmetrical) as seen in the pictures
taken during my last laparoscopic surgery in January,
secondly because of the heavy uterine pain and thirdly
because of my successful response to the Synarel this
time. I am now contemplating on having a hysterectomy,
which is a huge decision for me to make.. I know I
can never have children and I am hoping a huge part
of my pain will be removed a long with my uterus.
I can not have the surgery for at least another 12
months due to have 2 other surgeries (not endo related)
I am having both these surgeries under general, one
in October 2003 and the other in January 2004, which
means I wont have it till the end of 2004. I just
don't want to deal with having my periods again and
I don't respond well and have extreme side effects
to chemical hormones like the BCP or plain progesterone,
the Synarel being the exception. Along with the Synarel
I have been taking Promensil to combat the side effects
of hot flushes/flashes and the migraine headaches,
which have all been decreased marginally..
I have found through researching
and making the documentary
and talking with some of the worlds leading Endo Surgeons
and Specialists, I have learnt that there are many
different paths that an endo sufferer may take and
each of us being unique human beings, we all need
specialist care which some times means. Combining
other specialists...like Pain specialists working
along side the Endo Specialists. It all just
depends on the person's needs...sometimes a team of
doctors is needed, which can include naturopaths and
some times acupuncturists and herbalists and pelvic
floor physical therapists, it all depends on the sufferers
needs. I believe this is the key to better health
and care and control of the pain and suffering, that
goes with this incurable and ongoing and painful disease
called Endometriosis.
To email me click
here.
In health and happiness,
Belle
Endometriosis in a nut shell
| Endometriosis
- the Inside Story | Belle's
Pain Scale
