Occupational Therapy and OF – guest blog

OHF_FacebookCoverHere is another informative article from the World Wide Fistula Fund on OT and obstetric fistula ‘Occupational Therapy and Obstetric Fistula’. The guest writer for this blog was Dr. Cambey Mikush, a recent graduate from Washington University in St. Louis with a doctorate in Occupational Therapy.


Whilst not related to whats really happening in developed countries, it is interesting to see that the younger generation are highlighting the plight of women with OF.

As always I will continue to advocate for women in developed countries and contact the guest writers to let them know we exist.



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Worldwide Fistula Fund guest blog

OHF_FacebookProfileAlthough the World Wide Fistula Fund is for women suffering from obstetric fistula in developing countries, there are still some great guests who blog on a regular basis.

Loran Hollander is a WWF Fund Rehabilitation Officer and she has recently written a blog on ‘Overcoming patient fear to improve fistula recovery’. Well worth the read. The plight of women suffering from obstetric fistula is no less different regardless of whether you live in developed or developing countries.

Loran is a seasoned Physical Therapist and clinical instructor at Laguna Honda Hospital and Rehabilitation Center in San Francisco and an International Women’s Health Consultant for Women’s ACTION Initiative nonprofit organization.

Thanks Loran for highlighting the difficulties of the often forgotten psychological impact of the surgery itself and the fear  that comes afterwards.

While you are there have a look at the work that WWF Fund does for women worldwide at http://worldwidefistulafund.org


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Fistula barrier salve



One of our lovely members has created a natural barrier salve perfect for ladies suffering from  painful skin conditions as a result of an obstetric fistula.


Fistulas are not only are a nuisance for those suffering with a fistula, but they can be very painful due to the effect the fluid has on the skin over a long period of time. To help alleviate this and to protect your skin from further burning, a barrier salve is recommended. Amy’s salve has essential oils to cool and sooth your skin, as well as preventing further skin damage. Even better it is natural!

Her business name is AmandaRoseSoaps and she has a shop on Etsy. You can go direct to her page by clicking here.

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Introducing our new social media memes

Designed to be shared amongst social media networks… please share xxSky_Jan_SM meme_2015

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American Bill HR2888 – ‘The Obstetric Fistula Prevention, Treatment, Hope and Dignity Restoration Act of 2010’

American Congressman Carolyn Maloney from New York City has just introduced legislation, “The Obstetric Fistula Prevention, Treatment, Hope and Dignity Restoration Act of 2010,” H.R. 5441, which would authorize funding to prevent and treat women suffering from obstetric fistula in developing countries.

We are concerned that the legislation is almost a word-for-word copy of the 2012 United Nations report which incorrectly stated that obstetric fistula is eradicated in developed countries.

Christy (USA) Founder of the ‘Living with Obstetric Fistula’ group on Facebook


Quite clearly this is incorrect. OperationHopefistula is testament to the 100’s of women from USA, UK, Australia, Canada, New Zealand, South Pacific and Indonesia who continue to suffer recto-vaginal and vesico-vaginal fistulas by their doctors/surgeons/obstetricians/midwives.

In fact, America leads the way with the highest number of women suffering from obstetric fistula (statistics taken from all members past and present of Living with Obstetric Fistula group).

More than 3/4 of our members come from the USA. So tell me again Congressman Maloney, why create a bill to assist obstetric fistula patients overseas when 100’s of American residents suffer on your very own doorstep?


Light at the end of the tunnel

DSC_0005Here is an article written by Business Chicks in 2012 about my experience with Obstetric Fistula. You can read it here: http://businesschicks.com.au/articles/featured/light-at-the-ned-of-a-tunnel

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Top six developed countries with Obstetric Fistula

In 2012 the United Nations put out a report stating that Obstetric Fistula has been eradicated in developed countries. It was a pretty arrogant statement considering the women I had met and spoken to since 2011 who have suffered this debilitating condition and the fact that the UN offered no explanation as to how they came to this conclusion.

So it was for precisely this reason that this website was born. As a journalist and OF sufferer I was pretty incensed by the UNs comments, so much so that I created this website as a result. Since then I have been gathering data on women with OF in developed countries – where they are from, how the OF occurred – and compiled this information into a spreadsheet.

Today I am releasing numbers on the top six developed countries with Obstetric Fistula. You be the judge as to whether this condition has been eradicated or not.

OF in developed countries_Top 6_2014

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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.




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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