PERSONAL STORY: BELLE BROWN

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 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 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.

Presently, (The Year 2000) being a part of online endo forums, such as The ERC (Endo Research Center) 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 alot of my time, besides trying to ereate 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). Its been over 2 yrs since my last surgery (May 1998) and I know the only way to check my endometriosis and endosalpingosis is by another surgery and I am booked in for a laparoscopy in November but at present the methadone I am taking, may have turned my periods off, as they are over 10 weeks late now. My periods stopped while taking Ms Contin for 12 months. This can be dangerous as it can let the bones disolve and my endo specialist is keeping a close eye on me and will send me for another bone density test in the near future. In the mean time I am taking Calcium and Magnesium.

So if my periods continue to cease and as long as my pain doesn't get too much worse than it is,then I think I will wait and maybe cancel my surgery for the time being. Sometimes,it is better to wait and observe, than continuously operate on an endo sufferer, causing more adhesons and damage to surrounding structures. I could have easily had over 10 surgeries by now but I have been conservative and not allowed the doctors (who were NOT endo specialists) to operate on me at the drop of a hat, 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 Pelvic Pain Specialists can be of great benefit.

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 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 Pain specialists and Endo Specialists. It 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 ongoing and painful disease called Endometriosis.

Belle Browne,
RN. Australian Producer of "Endometriosis: The Inside Story"

The Documentary has it's own website at: http://www.endometriosis.org/