Soula Mantalvanos, Founder of pudendalnerve.com.au here is my story: My name is Soula, I literally fell into the land of pelvic chronic pain, specifically Pudendal Neuralgia (PN), on March 1, 2007 when a fitball I was sitting on burst and I fell to a concrete floor whilst working at ooi, my art & design studio that I run with my husband Theo. I am an artist and creative director and now I also advocate for pelvic chronic pain through a website I built, www.pudendalnerve.com.au. Since 2007 I’ve had an overwhelming emotional journey, one even a creative like myself could ever have imagined. I am the founder of www.pain-train.com.au, a communication tool for people in pain, have self published Art & Chronic Pain – A Self Portrait, that I felt could be of comfort, support and an education to those who treat pain. I have presented my story to 200 professionals at AIM Pain 2014 with an immense response, appeared in a Television commercial for the Australian and New Zealand College of Anaesthetists (ANZCA), been interviewed by pain organisations and had The Hurting Strings documentary made in the hope of creating awareness for those who live in daily pain. I have presented my story to 200 professionals at AIM Pain 2014 with an immense response, appeared in a Television commercial for the Australian and New Zealand College of Anaesthetists (ANZCA), been interviewed by pain organisations and had The Hurting Strings documentary made in the hope of creating awareness for those who live in daily pain. But, first and foremost, and what I would like anyone with chronic pain to read, is the fact that I’m conquering PN. Since my diagnosis 4.5 years after my fall, I’ve had appropriate treatment that has been slowly chipping at the PN glacier. And yes, I was living with unbearable pelvic chronic pain that made me feel I had my finger stuck in a power point, it had me sleeping my life away and when not sleeping, in so much pain it was impossible to achieve much at all. I was existing, not living. |
Fabia Brackenbury, Founder, Worldwide Lichen Sclerosus Support, web manager, education/information coordinator. Visitors ask who runs the site and where does the information come from. This is a fair question. There are now any amount of people giving information on the internet about lichen sclerosus. The aim is to offer responsible and medically sourced information, arising from association with many international doctors, the BSSVD and ISSVD, the BAD and various other dermatology, gynaecology, gynaecology oncology and genito-urinary bodies.
Fabia has been living with LS since 1994. Her Dermatologist suggested starting a group. At that time, there was no information about LS in any medical book and nothing at all on the internet. It was suggested that a book be written but Fabia felt she lacked the skill. She wrote to well known public figure and feminist author, Germaine Greer, to ask her for help in writing a book. Germaine Greer kindly wrote and suggested a website would be more helpful and easier to publish than a book. The first website in the world for LS was born in 1997. The group was once known as National Lichen Sclerosus Support Group. Fabia has supported patient contacts around the world since 1997 and also works with those who have VIN, vulval cancer and any vulva condition that does not have a specific support network. In 2000, she was made an honorary member of the British Society for the Study of Vulval Disease. For four years, she served on the committee of the BSSVD as the patient About Fabia Brackenbury, Founder, Worldwide Lichen Sclerosus Support, web manager, education/information coordinator. Visitors ask who runs the site and where does the information come from. This is a fair question. There are now any amount of people giving information on the internet about lichen sclerosus. The aim is to offer responsible and medically sourced information, arising from association with many international doctors, the BSSVD and ISSVD, the BAD and various other dermatology, gynaecology, gynaecology oncology and genito-urinary bodies. Fabia has been living with LS since 1994. Her Dermatologist suggested starting a group. At that time, there was no information about LS in any medical book and nothing at all on the internet. It was suggested that a book be written but Fabia felt she lacked the skill. She wrote to well known public figure and feminist author, Germaine Greer, to ask her for help in writing a book. Germaine Greer kindly wrote and suggested a website would be more helpful and easier to publish than a book. The first website in the world for LS was born in 1997. The group was once known as National Lichen Sclerosus Support Group. Fabia has supported patient contacts around the world since 1997 and also works with those who have VIN, vulval cancer and any vulva condition that does not have a specific support network. In 2000, she was made an honorary member of the British Society for the Study of Vulval Disease. For four years, she served on the committee of the BSSVD as the patient representative. She has attended every meeting of the BSSVD since 2000. Meetings always include presentations by doctors who have an interest in studying vulval disease. LS. lichen planus, VIN and vulva cancer and the more rare vulval diseases are discussed. She has been privileged to hear some of the most eminent doctors who study vulva disease and to meet with them. Her work has inspired the Nederlands and Italy to form their own national societies. In 2012, a close alliance with the Italian support group was made and regular contact with Italy is maintained. Her work is accepted and recognised by medical professionals all over the World. |
Jill Heidi Osborne’s life was changed the day she first experienced bladder pain. Her first diagnosis was chemical cystitis, the result of exposure to pool chemicals that had been improperly used in her local swimming pool. Within a year, and with no relief to her bladder pain, she was diagnosed with interstitial cystitis. Just 33 years old, she was laid off from work, lost her health insurance, lost her boyfriend and struggled to perform simple life functions. Walking was painful, driving almost impossible and quality sleep time was few and far between. Her doctors had little in the way of treatment. In fact, she went a year without any pain care. About a year into her diagnosis, a doctor said “This is your life. You will never get better. You will always be on disability and a burden to your family.” For the first time, she got angry. She said “Wait a second. I still have my hands. I still have my brain. I still have my intelligence. I still have my degrees (a BA in Pharmacology and an MA in Psychology). I will prove you wrong.” Shortly afterwards, she started IC-Redwood Empire, a support group for patients in Northern California and had the opportunity to work with hundreds of patients, as well as to chair the regions first formal conference on IC. But, there was a problem. The patients who needed the support the most were just too ill to leave their homes. She was challenged to find a way to bring support to them. Though quite new in 1993, the internet held promise. She tested her idea first on America On Line by starting the first groups for patients with bladder symptoms and the model worked. Patients were very comfortable participating on line and, not surprisingly, they often gave each other support and encouragement in the middle of the night when their symptoms were the worst. Men were also far more comfortable participating on-line rather than in a community group often dominated by women. In 1994, Jill pitched her idea for the “first” website on IC to the national organization who scoffed at the idea. They saw no value in working on the web thus she chose to begin it on her own, as the Interstitial Cystitis Network. (http://www.ic-network.com) For twenty years, the ICN has thrived as the gathering place for IC and bladder pain patients. More than 36,000 patients participate in their online support forum and another 26,000 receive e-newsletter. About 200,000 patients use the ICN website each month, all at no cost to them! The ICN has twice been recognized as the most credible, reliable and accurate website covering the topic in studies by Harvard Medical School (2011) and the University of London (2013). An internet pioneer, Jill built the first iPhone app for IC, moderated the first live guest lectures, created on-line conferences as well as the annual IC Awareness Month campaign. She has also appeared on several national and regional TV and radio shows. Jill is a passionate advocate for all patients who struggle with bladder and pelvic pain and is happy to join the advisory board of the Bridge For Pelvic Pain. |
Tsuyoshi Sakaguchi, lives and works in Japan and holds a medical license from Japan. His practice focuses on helping men and women with Interstitial Cystitis (IC) and chronic pelvic pain patients in his clinic Sakaguchi Clinica Urologica. His focus in treatment is utilizing an integrative approach of Western medication as well as Traditional Chinese Medicine techniques including herbs and acupuncture. Mr Sakaguchi's work has been very successful utilizing this combination as well as his ground-breaking idea to use drugs to treat IC pain and urinary frequency that normally were only prescribed for radiation cystitis. Additional information about Mr. Sakaguchi's work with IC patients can be found on his website: http://www.kcc.zaq.ne.jp/prostate/eng.html#inter |
Stephanie Yeager has personally experienced chronic pelvic pain. After her own road of misdiagnosis, confusion, frustration, and near hopelessness she and a team of professionals created an educational DVD specifically for those suffering from genital, sexual, and pelvic pain. She is passionate about spreading the word of hope and healing for those like her, influencing a paradigm shift in the medical community toward greater understanding of these disorders, and prevention initiatives that may protect young women before onset can occur. Stephanie's soon-to-be-released DVD, "Healing the Pain 'Down There'" is set to be released later this year. More information about Stephanie and her DVD project featuring Dr. Robert Echenberg and Karen Liberi, MPT, can be found at her website: www.paindownthere.com |
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