Today I’d like to share Kathleen and Roy’s story about how they beat interstitial cystitis. I found this story very moving and inspirational – it shows once again that interstitial cystitis can be overcome.
The cause of interstitial cystitis may be different for each of us and the only way to overcome this debilitating condition is to keep searching for that root cause.
Together with her husband Roy, Kathleen finally found the root cause of her interstitial cystitis and this empowered her to overcome this condition.
This story is an account of Kathleen’s journey with interstitial cystitis, written by her husband Roy.
I hope this story will be an inspiration for you to keep searching for answers… Healing is possible!
Kathleen’s Story: A Personal Story of our Recovery from the effects of Monsanto’s RoundUp and the Scourge of Glyphosate. A Ten Year Journey to Hell and back.
We are not Medical Doctors and we are writing this account as a personal story that will hopefully give
encouragement and a path to recovery for the many people, primarily women, of the world who have
suffered and are currently suffering from the “Chronic Condition” known as Interstitial Cystitis.
We will leave it to others to define and give their best descriptions of this “Chronic Condition”. We will
focus our writings on the view from the perspective of the suffering patient and her family as they adjust
their lives to, in the words of one of our Urologists: “Live with it!”
Our story begins approximately 10 years ago, in 2006, although the build-up seems to have begun nearly
20 years ago, when, unbeknownst to us, the farmers were first learning the benefits of using Monsanto’s
patented product, RoundUp, containing Glyphosate to increase their yields and production of many of the
grain products that are contained today in everything we eat.
Our first encounters with “Interstitial Cystitis” were with an unknown disease or condition that totally
changed my wife’s life as she had initially begun experiencing increased needs and urgency to be near a
bathroom or other such accommodations as we rode bicycles, hiked, or rode motorcycles for even short
periods of time.
We began accommodating the condition by selecting certain types of motor vehicles and
adding portable toilet facilities to them in order to travel virtually any distance at all. Our Ford E-150 Vans
and in 2008 our Mercedes-Benz R-350 had suitable back seat space to allow us to make these
modifications and offer some flexibility of longer distance travel.
As the Condition progressed, the continuing urgency became the lessor problem and the increasingly
occurring Intense pain became much more of a lifestyle changer.
Visits first to our General Practitioner and then to a series of Specialists led us to a path of searching for what exactly was causing the intense pain and, for starters, where exactly in her body was it occurring!
While the pain was isolated in the abdominal area, it was not at all obvious whether it was involving the Stomach/Intestinal tract, the Urinary Tract, the reproductive organs, or something else. Words like “Pelvic Sling” , IBS (Irritable Bowel Syndrome), Bladder Infection, Kidney infection, Bladder Cancer, Bladder Distention, etc. entered and lived in our vocabulary as we searched for a Definition, a Cause, and a Cure.
We consulted with Doctors who examined all of what we thought to be possible causes and it was in 2011, following a surgicalmprocedure to do a biopsy of the bladder looking for signs of cancer and doing a Bladder Distention (which
actually gave relief for 6 weeks) that we were recommended to contact a Doctor at The Ohio State
University Medical Center as he is a specialist who was treating our friend for some strange new condition
known as “Interstitial Cystitis”, a name we would become painfully knowledgeable about over the next 7
We learned of the others who had been battling this disease/condition, read books such as “The Healing
Path” by Catherine Simone, learned a long list of foods and beverages that must now be excluded from
our lives, etc.
We learned that the only prescription Pharmaceutical Product that could actually give some
relief after a period of 6 weeks was called “Elmiron”, an Orphan Drug that cost in excess of $500.00/
month for the prescribed 3 doses per day. This drug combined with an over the counter product “Prelief”,
Marshmallow Root Tea, Herbal Teas, zero alcohol, began to give some relief but the periodic Intense
Recognizing the extreme nature of her case, our Specialist had even given us literature to consider a kind of implant that would actually reduce the intensity of the pain by stimulating more frequent minor episodes. (A Pace-maker for Bladder Pain? Really?). We declined to seriously consider such a device and continued on this path for over a year when we learned that our Insurance Plan was no longer covering any part of this drug Elmiron. This prompted us to look for a new Insurer and forced us to find a new “In-Plan” Specialist.
One visit to the new Specialist, who was also well recognized in the Medical Doctor rich environs of
Central Ohio, had my wife returning from her visit telling me about a new option to consider, treating the
Bladder with Botox Injections every three months. Sounded quite Desperate to us!
It was at this point that I began more serious research via my newly acquired Smart Phone App called
“iTriage” which recommended a long string of YouTube videos on the topic. I viewed every Video I could
find, spending hours viewing the many women who were so totally desperate to find a cure and who were
so willing to unselfishly share their stories of daily battles and short term triumphs wherever they could
Finally, after long last, my YouTube Video “Addiction” led me in March 2015 to view a conversation
between Jeffrey Smith and a Professor of Artificial Intelligence at MIT, Stephanie Seneff, PhD concerning
many chronic conditions and how they were being caused by something called “Glyphosate” in our food
supply: ”The Health Dangers of Roundup (glyphosate) Herbicide. Jeffrey Smith &
Stephanie Seneff” ( https://www.youtube.com/watch?v=h_AHLDXF5aw&t=2082s )
Finally, things were starting to make sense to my Mechanical Engineering mind. I viewed and reviewed
the video multiple times and then contacted Stephanie Seneff at MIT to see if our “Mystery Chronic
Condition” know to us now as Interstitial Cystitis could be related to what she described in the video as
“Leaky Gut Syndrome”. It seemed to me that the parallels between the Leaky Gut Syndrome and
perhaps a “Leaky Bladder Syndrome” could be having the same intense pain inducing effects on the
Stephanie Seneff acknowledged that she had not heard of Interstitial Cystitis, but then quickly via her
proficiency in Artificial Intelligence was able to analyze, correlate her resulting thoughts and give us
specific recommendations that were much less onerous than we had received from anyone over the past
10 years. She responded via e-mail with recommendations and PDF’s of several reference papers that
she had found relevant on the topic.
Following her recommendations, by September 2015 we eliminated as much as possible the GMO’s from
our diet, getting rid of all of Monsanto’s RoundUp (containing Glyphosate), which we had actually been
using to control the weeds on our 700 foot long Farm Property Driveway. My wife had actually been the
one doing the periodic RoundUp spraying during the immediately preceding 12 month period.
We switched to as much Organic Produce as we could, relying on our own Organic “Raised Bed” Garden
for much of our produce, while using Organic Producers for many of the other products we use. We
even followed one of Dr. Seneff’s “toss in” recommendations concerning Sulphate deficiency that she
mentions in her video. As she explains, there are reasons why we cannot make up this sulphate
deficiency via oral products but recommended Epsom Salt baths to do the job. My wife found that adding
Lavender to the bath water made this the lowest cost and most pleasurable way to get over IC!
Life goes on ….
In August of 2015, we encountered an un-related problem of Kathy’s Broken Leg (Tibial Plateau Fracture)
that took much of our attention off of the IC problem. In fact, it was one day in June of 2016 that I
actually thought to ask Kathy if she was still taking her Elmiron to which she replied: “I haven’t taken one
of those in ….. I don’t know how long, …. for months!”
The absence of her horrible bouts with the intense pain of Interstitial Cystitis could actually have passed?
INCREDIBLE! I was overjoyed to hear that my wife had experienced an over 90% improvement
without either of us taking specific notice of the gradual improvement, other than to be happy not to be
suffering any longer. We even found ourselves driving a hundred miles without a bathroom break!
It was at this point that I first wrote a letter to the Interstitial Cystitis organizations with copies to Dr.
Seneff, acknowledging what I believe is the way to overcome this Chronic condition.
Seneff’s efforts to point out the bad effects of Glyphosate on the lives of so many people have been invaluable to us
personally and we owe her a huge debt of gratitude. Overcome the “Chronic Condition” by preventing
the Glyphosate and GMO’s from entering our bodies in the first place!
For our friends in Europe who think they are safe from this due to Government actions to block
Glyphosate in European counties, I would reference the following YouTube Video: “Poisoned Fields –
Glyphosate, the underrated risk” https://www.youtube.com/watch?v=XDyI10Z8aH0&feature=share
We hope that by our writing this account of our own personal experiences, we can stimulate others to find
help for themselves in their personal battles with so many of the modern day Chronic Conditions that
Seneff and Smith mention in their YouTube Video discussion. We hope that the thousands of IC Sufferers
plus those suffering from Autism, Stomach problems, Parkinson’s, and so many other diseases can find
help by viewing and listening to the ideas and recommendations of this wonderful Professor.
Roy and Kathleen Wagner
Pin it for later:
Roy A WagnerDecember 8, 2016
Thank you so much, Layla. We hope that this story helps you and your readers overcome Interstitial Cystitis. I have also asked Dr. Stephanie Seneff to write a Technical paper on her findings of particular relevance to IC. We will advise you whenever we have additional information available at our side and hope to hear from you that some of your readers are able to be encouraged and helped by our story.
Roy A. and Kathleen R. Wagner Westerville, OH USA
LaylaDecember 9, 2016
Thank you for sharing! I am planning an article about ‘leaky bladder’ soon as well, but I could not find a lot of scientific papers on this issue. Stefanie’s input on this matter would be amazing and very much appreciated! Thanks again, Layla
Roy WagnerFebruary 5, 2017
Note: The “prescribed 3 does per day. ” in paragraph 8 should be: prescribed 3 doses per day.
Sorry for my error. roy
LaylaFebruary 5, 2017
Bernadette FrostMarch 8, 2018
Thank you so much for your story. My daughter 27 has just been diagnosed with IC which she has been trying through many many doctors to treat and diagnose for the past year. She is now in the process of going back to basics as far as foods she can and can’t eat but would love any input into suggestions etc that may help her. As a mother it is heartbreaking to see her going through it but I must say to have a diagnosis finally and something “concrete “ to work with is positive for her.
LaylaMarch 10, 2018
Hi Bernadette, so sorry your daughter has to go through this. I have diet suggestions in the ‘protocols’ section of the blog. Going back to basics is a good idea, especially removing inflammatory, processed and allergenic foods – i.e. processed vegetable oils, white flour products, sugar etc and replacing them with nutrient dense foods – vegetables, grass-fed or free-range meats, fruits, fish, fermented foods etc. I did a lot better when I removed grains entirely. Working on the gut flora is important too. Bear in mind that a negative urine culture doesn’t mean there’s no infection – these tests are outdated and miss many infections.
Roy A WagnerApril 5, 2018
Hi Bernadette Frost,
Sorry to hear that your daughter is experiencing IC, but I also remember our actual sense of relief when we finally received a diagnosis of the problem. I hope that you will view the Video I mentioned in our story as I believe you will find Dr. Stephanie Seneff to be a real resource to help overcome this condition. I still have the contact information as well as some of the reference files that Seneff sent to me if you feel that this would be as helpful as I do.
Roy Wagner 4-April-2018
Debbie PollockDecember 7, 2019
Just wondering if your wife had hunners Lesions as well in her bladder