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Re: AS Requested Belle's Story.From: Penelope (anonymous@obgyn.net)Mon Jan 31 21:38:03 2000
Belle Thanks for sharing your story. You really went through alot to make the video and I am sure it helped many people understand this disease better. Love,Penny
>----- Original Message -----
> I have been sent a request to tell my story to you all. -- > -------------------------------------------------------------------------- > -------------------------------- > -------------------------------------------------------------------------- > Heather Guidone, OBGYN.net EndoZone Coordinator, conducted an informal > interview with Belle Browne, RN, the Australian Producer of "Endometriosis - > The Inside Story" This is Belle's story in her own words about her Endo > experiences and how she came to be involved in this groundbreaking video > production. > > "I was Diagnosed with Endo in 1992. It was a horrible experience, and 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 Endo 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 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 cancelled 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 cancelled 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 Endo 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 > cancelling 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 diarrehoa). 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. > > I am still in pain, although the surgery helped for a period of time but it > was only brief. I am still taking narcotics and I am seeing a pain > specialist. There is a limit to how much they can take out of me. I am > presently taking herbs and I'm looking into trying acupuncture again. I > still feel I will find my own remission one day (I have no idea when!) but I > still have to keep searching for my own cure. > > At present I have stopped taking the pill (bcp's) and have not had a period > yet. I am trying to give my body a chance to balance itself and I want to > try it naturally and try and avoid hormones, at least until I bleed and have > a period. > > Making the Documentary has been one of the most rewarding things I have ever > done, and I have learned so much and have met some of the most amazing and > wonderful human beings, I think, that I will ever meet. Each and every one > of these people were amazing, having something of value to add to this > devastating disease. > > If this Documentary helps one person, then it has been a success." > > Belle Browne, RN. > Australian Producer of "Endometriosis: The Inside Story" > > The Documentary has it's own website at: http://www.endometriosis.org > On this site you will find a lot of valuable information. You can purchase > the Documentary "Endometriosis: The Inside Story" online, on the "Video" > page of the website. > > This information is provided for educational purposes only. Please read > the disclaimer. ©1996-1999, all rights reserved. Do not reproduce without > permission of Elecomm Corporation >
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