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Follow up to Sarah’s story

You may remember Sarah’s story and her visit to Uganda in my previous blog posts.

She recently revisited ‘The Doctors’ about her rectovaginal surgery results and chatted about Rectovaginal Fistula surgery.

You can watch the video here.

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Blog to read: Sarah with a fistula

Read what it is like to live with an Obstetric Fistula. A blog written by one of our members.

http://sarahwithafistula.wordpress.com/2012/05/02/hello-world/

 

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Emma’s story

One of my Obstetric Fistula ladies recently underwent surgery #20 in the hopes of a repair.  This is her story and I thank her from the bottom of my heart for sharing it with us.

Emma – I first noticed a pea-sized lump on my perineum about 6 years ago. It seemed to come and go, but was never sore so I largely ignored it.

Then in May 2010, the lump became bigger and painful. I went to my local GP who diagnosed it as a Bartholin’s abcess and lanced it in his rooms. I remember him commenting on how deep it went but didn’t think much else of it.

2 days later, my entire labia swelled up as the infection tracked along the opening of the vagina. I had fevers and was very uncomfortable. I went to the emergency department and had it diagnosed as a labial abcess and this time had it surgically drained and laid open by a gynaecologist. Two weeks later, the original lump was back and I saw another gynaecologist who thought it was coming from the bowel. I was taken to theatre where a general surgeon found a hole in the bowel that was feeding the lump and flushed it with saline, declaring me cured.

Unfortuately in the course of this surgery, the lump opened up and stayed open, creating a true fistula tract. This was the first time I experienced the leakage of bowel contents out through the fistula. Horrified, I found the name of a new surgeon, Prof Carson, who performed a EUA and fistulotomy and diagnosed it correctly as a high, complex,. This first repair attempt failed and so started a long list of failed repairs.

I have had numerous fistulotomy, fistulectomy, advancement flap, labial fat pad grafts, anal sphincter repairs and seton placements. All failed. It was then decided to give me a temporary colostomy and try a repair then. I had the end colostomy for  12 months and each repair failed. I developed a parastomal hernia and kept getting partial bowel obstructions which were debilitating. The final straw came when I deveolped a parastomal abscess under my base plate and a reversal was performed. I am still upset that I spent a year of hell with a colostomy and it achieved nothing.

It got to the point when Prof Carson did not know what else to try and so he referred me to a CRS on the other side of the country. He performed 3 advancement flaps, the final one, in August 2013, has worked.

My total of operations on my bowel in the 3 years has totalled 20. It has been a long road. Constant abcesses and infections in the tract has kept me exhausted and the emotional strain has left me with severe depression. The financial toll has also been considerable. I am just lucky that I have a very supportive husband, family and friends who have supported me throughout the ordeal.

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Sarah’s visit to Uganda, Africa

Recently one of our Living with Obstetric Fistula members travelled to Uganda to visit the Fistula clinics.

Last year Sarah was instrumental in highlighting our plight on American TV when she and her surgeon talked about Obstetric Fistula on the American Doctors show. As a result of this, she was given the opportunity to travel with a group of volunteers who were taking over medication and surgical equipment to the fistula clinics.  Like all volunteers these people take time out of their own life to help others less fortunate and we thank them for the work they do for other  women like us.

Sarah kindly shared some of her photos with us.

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Australia wins seat on UN Security Council

This week it has been announced that Australia has won a seat on the UN Security Council starting on 1 January 2013, the entire process of getting this seat took five years and cost $25million.

Australia was one of the founding members of the UN and played a big part in drafting the articles of the UN Charter that deals with the Security Council. We haven’t held a seat on the council since 1985-86 but are still the 12th largest contributor to the UN regular and peacekeeping budgets and currently have 3,500 peacekeeping staff deployed around the globe.

At the moment Federal Foreign Minister Bob Carr is overseeing the process but it is rumoured that Kevin Rudd MP, Federal Member for Griffith is considered highly likely to be offered the posting for a two-year period.

The recent release of the 2012 UN General Assembly report Supporting efforts to end obstetric fistula – Report of the Secretary-General has raised many questions about the validity and research into obstetric fistula (OF) sufferers worldwide with such statements as “obstetric fistula has been eliminated in industrialised countries” not once but numerous times throughout this report.

Whilst the UN first recognized the problem of OF in 2005 in its resolution 60/141 on the girl child and then officially acknowledged OF during the General Assembly in 2007. This was sponsored by 172 States “calling for renewed focus and intensified efforts for eliminating OF” and included the global Campaign to End Fistula.

In 2012 apparently it still hasn’t filtered through that women in developed (industrialised) nations suffer from OF and the numbers are growing.  I simply cannot understand how the UN General Assembly can put out a global report that baldly states such inaccurate statements with no basis or research.

FACT: Women do suffer from obstetric fistula in developed nations.

FACT: This occurs through surgical error (ie: 4th degree tears, episiotomy) or Crohns disease.

FACT: Women struggle to get diagnosed and then struggle to find a surgeon who has the experience to do the repair. Some women have to go across the world to find a surgeon to repair them, if they have the money.

FACT: Incontinence has no borders. Urine or feces running down your leg is the same wherever you live.

FACT: Women with obstetric fistulas cannot work because they wear catheters or colostomy bags yet do not qualify for disability payments because it is not a recognized medical condition and is not reported to the World Health Organisation.

So what does this mean for Australians?  It means we now have a voice at the UN and gives us some power to make changes affecting not only Australians but others globally suffering from obstetric fistula.

I am now campaigning the Australian government to get the UN to acknowledge the plight of women in developed nations and give these women the recognition they deserve along with sufferers in developing nations.  Will you join me?

Gaby

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Welcome!

Welcome to this site. It has been set up for women who have suffered from an Obstetric Fistula in a developed country.

The mantra for this website is Empower – Educate – Eradicate.

Rest assured you are not alone.

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