Cystitis Patient Answers
My urologist told me that the internet has all the information I need to make informed decisions on any treatment – Here is a series of articles with information you may not find online, about IC:
Symptoms called IC can come from anywhere in the body.
A holistic approach to diagnosis and treatment is necessary.
Anne's Story
This first article is Anne’s story: Anne’s question is “How is it that human beings are allowed to do this to other human beings?”

To summarize, Anne was told by many urologists that she had IC, and she was “treated” with 31 extremely painful surgeries and the antibiotics required with surgery. (This happens to as many as 9 million Americans, and many more abroad, where foreign doctors follow the AUA Guidelines.) The result was pain that was off the scale, and narcotics that barely touched the pain. Also, she developed severe allergies, caused by all the antibiotics, including one allergy which is anaphylactic, and from which she easily could have died.

Finally, through a friend, the real cause of Anne’s so-called IC symptoms was discovered - damage from the hysterectomy she had in 1996. The damage was to myofascial tissue (which surrounds all our organs), and this damage is called myofascial stricture. With the correct diagnoses, Anne got the right treatment: myofascial stricture release physical therapy, MFR, for her pelvic pain, and avoiding the things she had become allergic to, which were caused by the antibiotics. A year ago, she was 95% percent free of the pain she’d suffered since 1996, when she had the hysterectomy. She told me yesterday, January 12, 1918, “I’m still doing amazingly well and have not had to have the physical therapy, MFR, myofascial release, for over 1 1/2 years.”

In short, Anne was a victim of what the AUA recommends to its 22,000 member urologists – 31 surgeries that “shouldn’t have been done in the first place.”

As many as 44% of women diagnosed with IC had a hysterectomy just before onset of so-called IC symptoms, according to a medical survey of 394 people diagnosed with IC. Doctors are supposed to get a medical history before any treatment. I have yet to find a urologist who asks patients whether they’ve had a hysterectomy.

The AUA tells us that the symptoms of IC are chronic urgency and frequency and bladder pain. They say that the cause of these symptoms is unknown, that there is no known cure, but that the trial and error surgeries they recommend (which they call “procedures”) will eventually bring some relief from symptoms. This is what Anne was told by several urologists.

The trial and error surgeries, with surgical CPT codes, that the AUA recommends for treatment of a diagnosis of IC/BPS are: hydrodistentions of the bladder, instillations of chemicals like DMSO (a wood solvent), Heparin and/or Lidocaine, implantation of neuromodulation devices under the skin , Intradetrusor botulinum toxin A (Botox), Cyclosporine A, and finally “diversion” of urine, which means either removal of the entire bladder (cystectomy) or part of the bladder.

Each of these surgeries is often done multiple times to the same patient, and in different ways by different urologists. E.g. hydrodistention, which some urologists for a couple of minutes, others for up to three hours under high pressure – which leads to severe shrinkage of the bladder and a cystectomy (removal of the bladder). See, our Letter to the AUA, Susie’s story.
And there are also many more surgeries which are not in the Guidelines, but still done. Anne had all of these surgeries, some multiple times, as the AUA recommends. Did they improve her symptoms?

My summary is not adequate to explain what AUA recommended treatment can do to your life. Please take the time to read Anne’s whole story.

As you read Anne’s story, consider whether the diagnosis of IC/BPS was correct, whether the urological surgeries she received for so-called IC/BPS were effective, and what, finally, was the actual cause of her so-called IC/BPS symptoms, and the treatment that actually gave her great relief from her pain?

“Anne’s story, as told to me by Anne, from 2012-2017; keep Anne’s question in mind: “How is it that human beings are allowed to do this to other human beings?”
“After the dilation of my urethra,” Anne said, “My husband had to come and get me. I went to bed and I was in shock for days. This urologist suggested that I have more dilations! I was not helped by the dilation because a narrow urethra was not my problem.

“This was when I realized I had to become my own health care advocate; I realized that I had the power to make the decisions about what I should agree to, instead of taking doctors’ views at face value. I asked a lot of questions of urologists after that. Still, the pain was so awful, and the doctors were so convincing, and I agreed to more.

“Finally, I told this urologist about the book I’d read, The Yeast Connection And The Woman by Dr. William G. Crook. I told this Denver urologist that I thought I had the IC/PBS that was described in the book, and I wanted a hydrodistention under general anesthesia because the book said this was needed for a diagnosis. (Dr. Crook was very right about Candida albicans infection, but unfortunately, the writer of this book had no idea how wrong the AUA has been, since 1871.) He said, ‘You don’t want IC – there is no cure.’ He didn’t want to do a hydrodistention. But I insisted because I was sure I had it and was desperate to get treatment for it.

“The hydrodistention was done in the hospital, along with a biopsy, and when he saw me afterwards he said, ‘I was wrong. You have one of the worst cases of IC I’ve ever seen.’ He handed me the IC diet sheet, a 30 day prescription for Tylenol with codeine, and he said ‘I don’t treat IC. Good luck.’

“A doctor who is a friend told me that he got a 15 minute lecture on IC in medical school. He was told that IC patients are middle aged women who were looking for drugs and complaining about womanly problems. He was told that IC is a psychosomatic illness, and to give patients a one month prescription for pain and get them out of the office.

“The Denver urologist who did the first hydrodistention did this to the letter.

• “In 1998-99 I saw a uro-gynecologist,” Anne says. “She told me that she treated IC.

There followed at least 12 surgeries: a second hydrodistention, a second biopsy, 10 instillations of DMSO (she wanted to do dozens), and several instillations of Heparin and Lidocain; this is a patient’s view of what this felt like.

“The urogynecologist wanted to do her own hydrodistention and biopsy. This was my second hydrodistention and my second biopsy. She said, ‘I see where the first biopsy was done during the first hydrodistention, and it looks as raw as if you’d just had it done.’ Wouldn’t you think this physician would have thought twice about doing a second one when she saw the damage the first biopsy had done, and that it still hadn’t healed? No. She did a second biopsy.”

Anne’s assessment of hydrodistentions is: “What these hydrodistentions did do was make me feel sicker than I did before I agreed to have them done. I likened them to chemotherapy treatments – all of the bad side effects with no therapeutic results. For example, bleeding. Nobody told me about the bleeding from hydrodistentions. I thought they had punctured something. I was sold a bill of goods regarding hydrodistention. It was necessary and good for me said my urologist. ‘All my patients feel better and have relief from pain for several months. Many women routinely have hydrodistentions every couple of months because it stretches out the bladder and you can hold urine longer.’

“I will never have another hydrodestention again,” Anne thought at the time. “There has to be a kinder, gentler, better way to diagnose and treat IC than by using hydrodistentions.”

But there would be more, because Anne was desperate, and because of the promises that urologists, a urogynecologist and a gynecologist had made, that the hydrodistentions would help. “In general they told me that we’d just have to keep trying several ‘options,’ and eventually we’d find something that would help me. Every patient is different, they said. We have to find out what works for you.

“Then, the urogynecologist told me that I needed instillations of DMSO; her plan was to do it once a week for a year. I had 10 instillations of DMSO, one a week for 10 weeks, and then I refused more. (This is the AUA take – dozens of trial and error surgeries, treatment treadmill, and very profitable for urologists.)

“I lost 15 pounds due to severe vomiting and diarrhea. I told the urogynecologist this and she said that my experience was par for the course; ‘DMSO takes out the toxins,’ she said. ‘ There are obviously a lot of toxins in your system – you have to give it time to work.’

“Frankly, it was hard to tell the difference between hydrodistentions and instillations of DMSO. I was expected to hold the DMSO for up to an hour. It was extremely painful. I guess the difference is the time and the volume of chemical or water that is put in the bladder.

“I can’t believe I believed everything the doctors told me,” said Anne. “DMSO makes you reek of garlic. My husband couldn’t sleep with me – I slept in the guest room. Once I was standing in a horse barn waiting for my daughter to saddle up and someone said ‘Who rubbed a horse down with DMSO?’ They use DMSO for joint pain and inflammation, on horses. I was mortified. I finally spoke up and said, ‘It’s me – I’m the one who smells like DMSO.’ She asked me why, and when I told her about the instillations she was shocked – she had never heard of anyone using it internally.

“I could barely stand up. The year that I had DMSO instillations was the year I lost fifteen pounds. I called it the DMSO diet. I really didn't have fifteen pounds to lose and I looked like I had been through chemo.

“But I had a 6 year old who I was trying to be a mother to and I had to keep it together until I got home.
“My pain level was still ten on a scale of one to 10. The Lidocaine and heparin didn’t help at all. I was desperate. Pain. My closest companion. I didn't think I could be in more pain, but I was.

• “In 1998 and 1999 I saw a compassionate internist. I showed him my medical
records, and he agreed to manage the pain. The urogynecologist didn’t want to prescribe pain medications. By this time I had 2 young children, and I couldn’t be a good mother with all that pain. My son says he doesn’t remember any time I wasn’t a good mother – ‘meals, practices, etc….what else could you have done to be a good mother?’ But I felt like there was a fog curtain between me and the rest of the world, including my children. The internist was a very kind man. He just wanted to make me comfortable.

“ I took non-narcotics during the day - anti-depressants - Elavil, and other things, because they didn’t make me so groggy. These drugs helped me to function during the day.

“And I took the prescription narcotics at night. The drug schedule revolved around rest and helping the kids and family – managing while taking these meds, pretending to be ok. I was so overmedicated – I can’t believe they gave me that much stuff. The pain so severe that I couldn’t have functioned without it. But I was still driving with the narcotics in my system. I was careful about when I picked the kids up, watchful of the level of medication, but when I moved here from Denver, a pharmacist told me I should be arrested for driving with these meds in my system. I was a menace and a danger with four or five things in my system at a time. I took the narcotics only very sparingly in the daytime, mostly Percocet, along with Elavil and Peridium, on and off. The drugs lowered my pain level from 10 to 7-8. Pain killers take the edge off, but they don’t begin to stop the pain. The side effects of the narcotics were horrible - constipation, foggy, dopey brain, memory problems. My emotions were on edge because of the pain; I felt like I was constantly holding a scream in. That’s where I’m still at, pain at 7-8 every day,” Anne told me in 2010. I also have urgency and frequency – the urge to urinate is so strong that I go to the bathroom 40-50 times a day. I started staying at home most of the time – from 1997 on. I didn’t leave the house a lot. And I dreaded the term ‘bladder cripple.’

• “We moved again in 2001, this time to California, and I had to find a whole new
set of doctors. A new urologist, my fourth, said there was nothing more he could do. The plan was that I would see him every 3 months, a requirement of the pain manager. It’s a game you have to play to make everybody happy. The urologist would check my urine and I’d pay him $100.

• “Because the pain was so severe, despite the drugs, I went to see a fifth urologist,
at the University of California, Los Angeles. He did his own hydrodistention. He was famous; he suggested an implantation of a neurostimulator device. However, he had only done 4 implantations – I would be his fifth. So I sought out a doctor who had more experience.

• “This doctor was at UCLA. I’m not sure if he was a urologist or an
internist/pain manager. He required his own hydrodistention also, to verify IC! A psychological assessment was also required, to make sure I could handle the implant process. I passed the assessment with flying colors. You have to sign a paper saying you won’t do anything like go on a roller coaster, ride a horse, or do anything else which might unseat the device.
“First, there was a trial of the device. A slit was made in the skin, so that an electrode with a small wire could be threaded to the nerves. The main part of the device was outside the body. I felt some relief, so I opted for implantation of a neurostimulator device, yet another surgery.
“The neurostimulator looks like a pacemaker and they put it at the upper portion of my right buttocks, with wires threaded to the bladder area and nerve endings there. There’s a tapping sensation from the neurostimulator, at the nerve endings, and the device supposedly intercepts the messages of pain and frequency. At first you say to yourself that you have to get used to it and you adjust the frequency of the tapping, with a remote control which you lay near the implanted device. Then data is entered. You can’t change this original setting – only the doctor or the Medtronics representative can do that. And neither the Medtronics representative nor the doctor are allowed to claim that the neurostimulator will relieve pain - they are not allowed to say ‘pain.’ They are supposed to advertise less ‘frequency.’ The federal Food and Drug Administration, FDA, has approved the implantation of the neurostimulator only for frequency and urgency.

“The neurostimulator gave no relief from urgency and frequency or from pain. There were continual readjustments of the programs. The doctor or representative would say ‘turn it off for 3 weeks, then reboot the computer.’ At this point we all agreed that the neurostim was a failure. Then the representative from Medtronics said I should wait until the battery died.
“In the beginning you want it to work so badly that you convince yourself that it’s working. But I kept up pain management medications, because I wasn’t getting any relief from the neurostimulator.
“After a couple of months you see it’s not working – and there was this incessant tapping that drove me insane, and there was still pain. Finally there was the realization that ‘holy shit – what have I done!’
• “At this point I went back to the doctor in Arizona and asked him to take out
the neurostimulator that he had implanted. It had been in for 4 years by then.

• In 2005 Anne and her husband moved to Arizona. With the move to Arizona I had
To find all new doctors - pain manager, urologist etc. and pharmaceutical pain medication was continued.
• “Still desperate, in November of 2008, I flew to Denver, to see a neurologist who
was working closely with my first pain management specialist. He specializes in chronic back pain, and he thought I was a candidate for a second neurostimulator, which had 4 electrodes instead of 2, a different Medtronic device, the ANS device. This time they had to remove bone at the base of the spine in order to make room for the electrodes attached to the wires of the device.
“In February of 2009, this second stimulator, ANS device, was implanted. With my pain and frequency at an unbearable level, 7-8, even with pharmaceutical narcotics, I was beyond desperate. And with these symptoms, and the medication, I was operating in a dense fog.

“But the second Medtronics device didn’t work either. I kept turning the device on and off, and hoping that with reboot I’d get a little relief,” Anne told me.

“A year later, in 2010,” Anne said, “I haven’t found the courage to admit that I have to have the ANS device taken out. Admitting that it didn’t work the second time was very hard. It was an expensive surgery. And I have a huge gash – a 4 inch diagonal scar – where they slipped the device into a pocket of fat at the top of the buttocks. When you sit down, you feel it. Also, there are two small incisions at the base of my spine, required to get the wires to the bladder. Unfortunately, the two electrodes at the base of my spine were enmeshed in muscle and couldn’t be removed. I’m tired, discouraged, despondent. I keep turning the device on and off, and hoping that with reboot I’ll get a little relief,” Anne told me.

• “Shortly before the second neurostiumulator was removed,” Anne told me, in 2010, “I went to see a urologist whose book I had read. It took 6 months to get an appointment. Finally, while I waited to see him, 3 women slammed out of his office, throwing their pocketbooks down, etc.. My father said, ‘Let’s leave.’ But I had read the urologist’s book on IC. He seemed to understand the disease and I wanted to know what he thought. I too left his office in disgust.

Some days it’s just so bad I’d almost rather not live anymore. When someone gives you a glimmer of hope, you do it. I still urinated 50 times a day. No sleep.

In e-mail shorthand, Anne told me, “I am so classically ic it's scary. chronic uti's as a teen, followed by chronic bladder infections and pelvic inflammatory disease followed by lots of gyno problems ending in a complete hysterectomy followed by the onset of ic at age 42.

And in an e-mail in July of 2010, Anne wrote to me about trying to carry on, despite everything. Life has very difficult, painful jobs to do, like taking care of ailing parents. The pain interferes, to put it mildly:

“I am so overwhelmed with caring for my mom now that she is home. she shouldn't be home because she is an accident waiting to happen. she is at risk for severe falls and has dementia so doesn't know she's not safe to move unattended. it's exhausting. my father is angry and yells at me constantly because he can't yell at my mother. he is deaf in one ear and partially in the other, has no peripheral vision so he can't drive, and he's just miserable and constantly acts it out with me. I am so stressed out which of course makes the ic flare and it's just a big hot mess!
“help is finally coming tomorrow - my sister, and my husband is coming tuesday night. my father expects me to be with him and my mom 24/7. I will do anything for my mom, but my father makes it so unpleasant.”

Anne’s daughter’s graduation also happens around this time, certainly a joy. Also experienced in pain.

• The urological treatments – surgeries - hadn’t worked. At this point, many patients turn to other specialists, other health care providers, for help with unrelenting, horrendous symptoms. So did Anne.
-When we next e-mailed, Anne told me, “I saw a very interesting rheumatologist last week who spent over an hour with me and asked me so many questions. I thought these questions had nothing to do with the pain in my hands that I think are arthritis. His initial thought is I have Sjogren’s syndrome, which is an auto-immune disorder. He ordered 8 different blood tests and x-rays of my hands. I go for a follow up on November 9th. He has an acupuncture clinic, yoga and uses lots of supplements. He is the first guy I have been impressed with in a very long time. He seemed to have a good working knowledge of ic but was not jumping to offer me anything until all test results were read. I’ll keep you posted.
-“The rheumatologist was one of many blind alleys. I tried some other things also. I went to a clinic, a spa, hoping that would help with the pain. I was there for three weeks of detoxification, exercise, education, colon cleansing with wheat grass. Hard to tell – detox is awful, and I didn’t go off meds because I would have gone into withdrawal. You barely eat, and I lost 15 pounds, but there was nothing different in the bladder.
-“I also tried an elimination diet every other year – the version advocated at the time. I was going to homeopaths, naturopaths, Chinese herbalists, acupuncture, acupressure, trigger point injections, and elimination diets.
-“I’ve tried everything, and almost ended up in the hospital twice because of over the counter (OTC) supplements that weren’t good for me. I think you have to be as careful with OTC as with allopathic prescriptions. I have been on 45 different medications, both over the counter and prescription. My husband always has a list of what I’m on in case there’s an emergency.

“The only thing I haven’t done is have my bladder out. I won’t do that. Urologists told me it was the only thing left that they could offer.

• Anne finally did have the second neurostimulator removed, in 2011, 2 years after it
was implanted.

• In March of 2011 Anne e-mailed me, hopefully, about her plans to have Botox
injections: “Having Botox injections for pelvic floor issues tomorrow. I saw a new doctor in Phoenix who seems to be the go to guy for chronic pain. I have known about him for about 6 months, and it took 4 months to get an appointment. Several reliable sources had treatment from him. Some say they have had miraculous results and some go every 3-6 months for maintenance injections. I am so desperate and my pain is so bad I’ve resorted to crawling around the floor in agony. This is no way to live. Will keep you posted, Anne.

In late summer of 2012 I called Anne again – I had not spoken with her since 2011.
Anne had been through the Botox treatment, at this point, and it had turned out to be not only ineffective but a miserable ordeal. Anne told me, “The result was that I lost my hair. There was no improvement of symptoms.”

Anne had very good news also, but she wanted to tell me about the Botox and steroid injections first.

“In 2010 I began seeing a gynecologist who specializes in women's pelvic pain. It took months to get an appointment. When I went in for the appointment, I did not see the doctor; his nurse practitioner determines on the first visit if you are ill enough to see the doctor. Lucky for me, I thought, that she decided I was ill enough, and he came in to do a quick internal exam. He told me I had pelvic floor dysfunction(PFD) and possible pudendal nerve entrapment, along with IC. He was sure that the majority of my pain was caused not by the IC, but by the PFD and pudendal nerve entrapment. He recommended 3 series of 20 Botox injections, each series combined with hydrodistentions, and then 3 weeks later 2 series of steroid injections. I agreed to a total of five sessions under general anesthesia. There were Botox injections, 3 separate series of 20 injections each, into the supposed ‘entrapped nerve’ each time. And two series of steroid injections . with one vial of Kenelog. The result was that I lost my hair. There was no improvement of symptoms.

“Both Botox and steroid injections are done on an outpatient basis. General anesthesia and spinal block is used for the Botox injections, and a spinal block anesthesia for the CT guided steroid injections. I was told I would have minimum pain with both types of treatment. The doctor insisted I have a 30 minute hydrodistention with the first set of 20 injections of Botox, for diagnosis and because he thinks that long hydrodistentions are therapeutically beneficial for the treatment of IC symptoms. The next two series of Botox injections would be done with 10 minute hydrodistentions. I was in so much pain and so desperate and he was so sure that it would help me that I agreed. I know I had stated earlier that I would never have another hydrodestention, but after a few years of chronic 8-10 level pain and living my life in bed, I was once again so desperate for pain relief that I gave in. He was so convincing. But this was another big mistake.

“After the first session of 20 Botox injections, accompanied by a 30 minute hydrodistention and 7 hours in recovery, I could not urinate on my own. So they inserted a catheter and said I’d have to have it in for 7 days. No one had mentioned the possibility of this happening. I was devastated, in miserable pain from the injections and the hydrodistention, and was also peeing blood. This continued not for 7 days but for 14 days. They did warn me that I would be peeing some blood for a few days, but not that I would be unable to urinate without a catheter and peeing blood for 14 days. They were very calm and matter of fact about all this, saying it happens all the time, the bladder just goes to sleep with the anesthesia, and it would be fine in another week. I was also so black and blue in my vaginal and rectal areas from the Botox injections, that I was forced to sit on a doughnut with ice packs - another side effect that they failed to mention before the procedures.&

“Finally after 14 days I could pee on my own and the urine was a fruit punch color. But there was still no pain relief. They said it would take 3-4 weeks before the Botox kicked in. It finally did kick in and I had some pain relief for 6 weeks – but then the pain level went back to 10 again. I did two more rounds of Botox, each with a 10 minute hydrodistention, because they said I needed more.
“Then they did two sessions of CT guided steroid injections. The anesthesia was a saddle block. These were Kenalog steroids. There were 2-3 injections in each session, between vagina and rectum, where the pudendal nerve was supposedly entrapped. These steroid injections didn’t improve my symptoms either!

“Botox and steroid injections did nothing –there was only that short term relief after the first 20 injections of Botox. The people who had recommended the doctor who did the Botox are no longer seeing him either.

“Also, these treatments were not covered under my insurance as they were deemed “experimental.” Each set of Botox injections was about $5000, which I had to pay up front, a total of $15,000. Each set of steroid injections was about $5000 also. The grand total of the 5 sessions was $25,000., out of pocket. This gives you an idea of how desperate I was.

• FINALLY, by accident, the mother of Anne’s daughter’s roommate heard Anne’s story. She recommended that Anne run, not walk, to a physical therapy clinic in Sedona, Arizona, the John F. Barnes “Therapy on the Rocks” clinic, which has been helping people with myofascial stricture for 50 years. Anne told me, in 2012, that her first three weeks of myofascial stricture release physical therapy in September of that year, had cut her pain in half. Anne was and is ecstatic. And I was so happy to hear her good news! At this point, the end of March, 2013, Anne says her pain is down 75%. By 2017, Anne’s pain would be 95% gone.

“The sixteen years of urological treatment I’ve had made my symptoms worse; it was also extremely expensive. My husband and I, and our health insurance company would have saved thousands and thousands of dollars if I’d known, in 1997, when my symptoms began, that what I really needed was myofascial physical therapy. Myofascial therapy is also expensive, but not nearly as costly as all that urological treatment; the first three weeks of intensive myofascial therapy was not reimbursed by my insurance, and I don’t know if the rest of the program will be or not. I hope my story will help change things.”

I asked Anne to describe her experience with this therapy and how it helped her. This is what she wrote:
Anne’s myofacial release physical therapy (MFR) experiences
I began Myofacial release physical therapy April, 2012, 16 years after the onset of IC, pelvic floor dysfunction and severe chronic pelvic pain. Receiving bi-weekly Myofacial physical therapy treatments, practicing yoga regularly, reducing high oxalate foods from my diet and drinking alkaline balanced spring water has significantly helped to reduce my pain level. I would like to share with you my experiences and insights with Myofacial Release Physical Therapy as it relates to my own journey towards health and healing.
My first experience with Myofacial release therapy (Mfr) was with an intensive 3 week program at the John F. Barnes “Therapy on the Rocks” (tor) clinic in Sedona, Az. It was recommended to me by my daughter’s roommate’s mother, who had attended the program years before. As my daughter was describing my health issues and pain level to her, she said, “Tell your mother to run, not walk, to Therapy on the Rocks clinic in Sedona for Myofacial release physical therapy”. So I did just that. I Called Therapy on the Rocks (tor) that day and got the last slot for the intensive program starting the following week. I booked myself for only two weeks initially, but a week and a half into the second week, I had a major breakthrough, so wisely stayed for the third week!
Therapy on the Rocks (Tor) is not a fancy spa. It’s a warm and inviting healing center. It’s housed in a creeky, old wooden building perched on the side of Oak Creek Canyon in beautiful Sedona, AZ. Upon entering, I felt this place, these therapists and this process was going to change my life if I was willing to surrender and commit myself to the healing process. At 4 thousand dollars a week and my positive attitude, I dove in head first!
With each surgery, it creates its own set of adhesions and with each new surgery casme more adhesions and restrictions – so instead of making myself well, I was making myself sicker.
The John F. Barnes Mfr (myofascial release) intensive program includes 3 hours a day of mfr therapy and several other group classes. The three therapists who worked with me were all incredible people; knowledgeable, caring, supportive, encouraging, skilled professionals who sincerely want to help me heal. Feeling that instant relationship with a therapist for me is very important, as it becomes a very intimate relationship very quickly, especially when you’re having internal work done as I did. For me, Mfr is the therapy I had dreamed about for years. Finally I had found therapists knowledgeable enough to work on the epicenter of my pain, which in my case was internally on my urethra, pelvic floor, bladder and rectum. The work was and still is painful and intense, but getting those restrictions released makes it all worthwhile.
The process the body goes through during Mfr therapy when facial restrictions, trapped energy and trauma within the fascia are being released is called “unwinding” in the John F. Barnes Myofacial world. When I finally unwound for the first time, which wasn’t until day nine in the 2nd week of my intensive program, it was earth shattering. My entire body shook uncontrollably; my arms and legs were moving in all directions and I was making primal noises that I’d never heard before. That first unwinding session lasted 2 1/2 hours, with 2 separate therapists. It was exhausting. I had never cried that hard or deep in my life. My eyelids were turning inside out with each sob. I was in mourning.
Yes, mourning. Mourning the loss of my former self, before all the labels, all the pain, all the surgeries, procedures and years of disappointments and failures with no sustained improvement. I mourned the wonderful, exciting life I led before illness: long walks with my children, daily work outs, working full time, skiing, horseback riding, Friday night happy hours with my girlfriends and hosting dinner parties for friends and family. I truly mourned the loss of the fabulous sex life my husband and I had shared before I became ill. I mourned it all, and still am.
In almost every Mfr session I have, I unwind. It’s like having an out of body experience while being fully conscious. In my most recent therapy session I truly experienced the shedding of a major layer of my pain. If anyone watches the tv series Dexter, he talks about his “dark passenger” his demon that forces him to kill. My dark passenger is pain. It’s a heavy, weighty, all encompassing, deep, dark, exhausting, almost go insane, incessant kind of pain, my dark passenger. During these sessions I writhed and cried and moaned and screamed while my therapist encouraged me to go deeper and rid myself of that heavy passenger who is the burning pain. All this is happening while my therapist has two fingers in my vagina, releasing my urethral facial restrictions, and maneuvering a plunger on my back, releasing the restrictions in my lower back from surgery and the scars and adhesions that it left behind.
This is what I call exquisite release. During these sessions I feel on the edge of insanity from pain, but then the facial restrictions release and I find sane relief. I am in complete control of the process at all times and can ask my therapist to stop completely or simply ease up. I never choose those options however. I want this over with. I want to go through this pain so I can come out on the other side and I don’t want to waste another moment getting there. I have suffered for 16 years and I’m sick of it, so I go full guns. But that’s my own personal choice. Each patient is totally in charge of their own healing process.
I feel reborn after the last few sessions. I experienced a healing crisis for a few days after (feel worse before you feel better), but by the third day I realized that my pain had been significantly reduced. Talk about feeling empowered. I was elated!
My pain level has stayed consistently lower and I have significantly reduced my pain meds. Although I still experience pain, it’s at a much lower level. I truly believe that with continued MFR treatment I will be completely healed.
I hope by sharing my story and the trials and tribulations of my healing journey that I may be able to save someone the years of suffering that I have endured. If I was diagnosed with IC or any other illness today, my first course of treatment would be the John F. Barnes method of Myofacial Release Physical Therapy. It is the least invasive of all the other treatment options available, and should be the first treatment offered. Unlike the 30 other treatments and surgeries that I put myself through over the years, this one is really helping me. I pray it will help you too.
Anne continued, “These therapists also taught me about oxalates. Some of the foods I ate the most often were blueberries, pears, and other things on the list of foods “friendly to patients with IC.” However, these foods have a high level of oxalates, and oxalates can make IC symptoms much worse.

“Oxalates are acid molecules that are found in many plant foods, which when ingested bind and convert into crystals. These crystals, when passed through the kidneys and bladder, irritate any damaged or inflamed tissue, (as is the case with IC) and exacerbate an already painful organ. Many foods that are high in Oxalates are ironically foods that have been said to be IC friendly foods, like blueberries, pears, green beans and spinach.
Lastly, I need to mention water and alkalinity. Water that is not alkaline is not good for IC symptoms. There has been research that suggests that alkaline neutralized water is better for those of us with IC. I am only using bottled spring water that I have treated with an alkaline neutralizer.

From 1997 to 2011 Anne had followed the advice of urologists, the same advice which is given in Statement 10 of the AUA Guidelines: “Patients should be educated about … the fact that acceptable symptom control may require trials of multiple therapeutic options (including combination therapy) before (acceptable symptom control)… is achieved.” In other words, dozens of trial and error surgeries, with antibiotics.

Anne says: “What benefit came from this 16 years of misery? Much worse symptoms is what Anne had. The financial cost just to her was probably over $100,000. What it cost my insurance company, I don’t know.

“There were 16 years of unnecessary misery – or about 3 decades if we count the 6 pelvic surgeries I had and the overuse of antibiotics.

“I am very grateful for the myofascial stricture release from physical therapists.

“How is it that human beings are allowed to do this to other human beings?”

Next article, the many causes of symptoms urologists call IC, according to people I’ve interviewed, and the successful treatments, including James’ story. Hopefully within the next two weeks.
For more information on the harm inflicted by unnecessary hysterectomies, you can go to the HERS Foundation: