I was 40 years old when I was painfully introduced to Interstitial Cystitis in February 2001. Up until that time I had been extremely healthy and athletic. I had always lived in Texas, first on a remote West Texas ranch in my childhood and later in Houston as a founder and owner of several small companies.
2001 was a big year in my life because it was also the year I married for the first time, and Interstitial Cystitis came within days of having intimacy with my husband. We had waited until we were married to be sexually intimate, and until I had married him, I had never been completely intimate with any of my previous boyfriends. This element of my story turned out to be a key factor in my battle with Interstitial Cystitis.
Within days of our marriage, I was in pain. First it was a yeast infection, which I treated with an over-the-counter remedy, and then some sort of problem started progressing throughout my entire pelvic region, including this strange feeling of pressure inside of my bladder especially during intercourse. It felt as if my bladder was not completely emptying. After that was a dull urethral burning when I urinated. I used cranberry juice for a week or two, but the symptoms began to escalate. So I called my doctor, and he prescribed Noroxin over the phone. After 24 hours on Noroxin, the symptoms worsened into something beyond my worst imaginings. I quit the Noroxin, cancelled a vacation with my husband and willed myself to survive hour by hour as my bladder seemed wracked with strange spasms and the burning in my urethra was almost unbearable.
Then came visits to numerous doctors whose specialties ranged from gynecology to urogynecology. There were absolutely no pathogens showing up on my lab tests. Yet two more months went by before I was diagnosed with Interstitial Cystitis. My symptoms were very severe. I was needing to urinate every 5-10 minutes, I felt severe fatigue throughout my body, my pelvic area seemed tender to the touch and there was a strange stiffness across the entire region below my belly button. Sharp, stabbing spasms convulsed my bladder all day and all night. Sleep had become nearly impossible. I read up on the disease at Interstitial Cystitis websites and learned strategies to reduce the pain, including trigger foods to avoid and how to pace the drinking of fluids. I researched all the treatments and consulted frequently with my general practitioner, who seemed to be the most proactive of all my doctors and, strangely enough, the most knowledgeable. He placed me on holistic remedies, mostly vitamins, that did seem to reduce the level of pain I was feeling.
Obviously, I was scared and frustrated. Interstitial Cystitis is a monster as disease goes. The fact that it is not credited with killing people is not such a positive attribute when one wishes eventually to escape the pain. I had never heard of it and I had never dreamed that my long-held dream of marriage and intimacy could bring something like this upon me. My saving graces in this ordeal were that I did have faith in God, and I did not believe my doctors. Common sense shouted to me that my condition was caused by an infection. The possibility that all this had come about as a completely separate event from first-time sexual intimacy was incongruous to me. I had "caught" an autoimmune disease just when I had become sexually intimate for the first time and this is not supposed to involve an infection? Yeah, right.
Even though I didn't believe my doctors, I wasn't sure where to look or what to do about finding an answer. All I knew was that I didn't want the solutions my doctors offered: painkillers, anti-depressants, instillations, and drugs that only addressed the symptoms. I wanted to be well, so I began to research on the internet, and to pray with a passion.
One morning in June, now four months since I had gotten married and plummeted into Interstitial Cystitis, I found myself praying on my living room floor, on my knees and desperate for God to hear me. I told Him that I could see why others deserved healing far more than I did, but I knew He loved me and that Jesus had died on the cross to atone for my sins, which included all those reasons why I didn't deserve healing, and would He please have mercy on me and give me the faith to be healed. Within fifteen minutes of desperate prayer, I sensed that God had heard my prayer and I would be completely well. But I also knew it would not be a quick healing. It was as if He had showed me that it would be a journey, and I got up off the living room floor more determined than ever to find answers and realizing in my heart that God was going to help me.
I researched and spent hundreds of dollars on supplements, most of which I couldn't tolerate because of the pain they caused my bladder. I worked only a few hours a day and only one person in my companies knew how sick I was. The others assumed I was taking a lot of time off and no one seemed to recognize that I went down the hall constantly. I was very fortunate to have great employees. They completely carried the companies during this ordeal.
Around July of 2001, I achieved a breakthrough when I found Dr. Fugazotto's website which described the Cystitis Research Center that he had founded in South Dakota. Dr. F, as he is affectionately referred to by patients, explained that he used a broth culturing technique in his laboratory that could detect pathogens involved in Interstitial Cystitis, and once those pathogens were detected, long-term antibiotic therapy would usually produce a cure.
My doctors initially didn't believe in Dr. F's theories. Several pronounced him to be a quack as they read the information I had brought from his website. But we were evenly matched in that I didn't believe my doctors and suspected them of being completely biased by misinformation they had received in medical school about this so-called disease. I had a feeling that they were completely wrong and I sent off for his kit anyway and paid the whopping donation request of $25.00, which was a financial drop in the bucket compared to the other money I had spent on those same doctors and lab tests and supplements. A few weeks later, Dr. F mailed back my results stating that he had found enterococcus and that the antibiotic that had tested most effective against it was augmentin. He explained the dosage I would need and I showed this to my general practitioner, who this time shrugged his shoulders and said "okay, we'll try it." This general practitioner probably knew that I would go to Mexico or buy the antibiotic on the black market if he didn't help me. We had been friends for some time and he knew I was quite determined to save my marriage and that I could be extremely single-minded when I wanted something.
I started on the antibiotics and within 24 hours I had 75% relief. I was stunned. Dr. F's website had led me to expect the relief could be weeks away. I called my doctor and could tell he was shocked. He hadn't expected the antibiotics to work at all. In his mind, Interstitial Cystitis was not caused by an infection, and my progress was unexpected.
Weeks went by. My bladder and urethral symptoms came and went. There were flares, but each flare was less severe than the one before it. I kept a diary and every month the good days climbed in numbers, and the bad days were fewer and fewer. My bladder was the first to achieve a complete cure, and the urethral symptoms still ebbed and subsided for four to five months. The pelvic symptoms and the fatigue took the longest to go away.
During this time, I sporadically took Diflucan to control yeast and I also took acidophilus. As the months went by, new symptoms started emerging. Urethral symptoms, slightly different than those in the earlier days, began to emerge. I suspected that I was getting out-of-control candida levels and began to read up more on candida. Sure enough, I wasn't doing nearly enough to control candida. When candida escalates throughout the human body, it can and does cause urethral and bladder symptoms similar to those caused by enterococcus. Many excellent physicians and researchers have written on this subject and clinical trials supported their findings. So I went into an all-out war with candida. As I came off Augmentin in the seventh month, I started taking rotating natural antifungals and went on the strict candida diet. Die-off was horrendous. I felt slightly drunk, my thinking was foggy and my ability to concentrate was almost non-existent. My urethral symptoms were constant for a few days when I started on the tougher antifungals, although there was no bladder pain. And finally, the urethral symptoms disappeared after about a week on the natural antifungals. The urethral symptoms were apparently caused by candida in these later months, not by enterococcus, and I had finally cleared the candida out of my body. Now I was symptom-free.
Things were great until I had intercourse again in which my husband did not use a condom. He had taken 30 days of augmentin after a test by Dr. F showed that he, too, had enterococcus in his semen. Evidently, 30 days had not been enough (and Dr. F had warned us it would take quite a bit longer). I came down with bladder and urethral pain again, but this time I hit it immediately with Augmentin and antifungals. They worked and 15 days later I came off of them. If they are taken early enough, it seems, long-term use is not always necessary.
The same incident was repeated a couple of weeks later and a relapse. This time I tried a German "isopath" type antibiotic called Penicillium Notatum. It can be found at www.purehealthsystems.com without a prescription. This particular remedy is derived from the same fungal source as penicillin type antibiotics but is processed and developed differently as a medication. Supposedly it does not harm the friendly bacteria in our stomachs the way synthetic antibiotics do, hence my great interest in it. It was described to me by a naturopath doctor on the internet as being highly effective against enterococcus and other gram positive bacteria's. It seemed to work, and I was off of it in 9 days. The only side effects were horrendous exhaustion. Penicillium Notatum causes severe fatigue when it encounters and attacks an infection, but this goes away after the infection is resolved.
I had one other problem that seemed somewhat apart from my interstitial cystitis, and that problem was bacterial vaginosis. The creams and antibiotics given to me by my gynecologist and my urogynecologist, including the unpleasant examinations preceding these prescriptions, all seemed to fail. Bacterial vaginosis is a common problem with long-term antibiotic usage, because the friendly bacteria normally prolific in a vaginal area will suppress these hostile microorganisms except when antibiotic usage has killed off the friendly bacteria, leaving hostile ones to thrive. I sent out a desperate plea over the internet, and on my web support group at www.ic-hope.com, a very capable medical researcher named Ron faxed me a report, which identified my bacterial vaginosis as probably being caused by mycoplasma. Anyway, I asked my general practitioner doctor for azythromycin and it worked. Again, I was amazed at how many answers I had gotten that had come from the internet and not from physicians that were supposedly specialists.
Since then I have not had a relapse of any kind and it has been six months. I feel good again and never wake up with fear and pain. I take olive leaf extract, flaxseed oil, multi-minerals, antioxidants, amino acids, probiotics to rebuild friendly bacteria in my body, and psyllium seed husk fiber capsules on a daily basis. I jog again about 2-3 miles, several times a week, and I stay on a sugar-free diet. I enjoy coffee again and occasional wine in the evenings, and no foods seem to bother me although I generally stick to a healthy diet with almost no processed foods.
My experience with interstitial cystitis is far better than most sufferers because it only lasted a year, and perhaps this swift recovery is because I found answers so quickly compared to many others who had been ill for years.
My husband and I had eventually separated, in large part because of the illness which in some ways devastated him more than it had me. He was also dealing with mild prostrate issues that seemed to flare with intercourse, and he is not the kind of man who wants any part of doctors and research and treatments. At the time I write this we are trying to work things out, and my plan is to help him get answers to his own situation and keep penicillium notatum and augmentin handy when we attempt intimacy again. Others in the same condition as myself have success at keeping I.C. away, and I have learned enough from them to believe my outcome will be as good as theirs.
As to whether all interstitial cystitis involves infections, my opinion is that a great many cases of interstitial cystitis involve one or multiple infections, and a lot of research supports this. Because that research has not made it into the hands of urologists does not mean it does not exist. I found many studies from medical universities that supported the infection theory behind many hard-to-diagnose urological illnesses, and hospitals around the country all know that enterococcus passed by catheters or other types of transmission can trigger severe bladder infections. Yet lab tests used by urologists don't culture for enterococcus or other gram-positive bacteria, even though in hospitals it is almost always suspected!
Also, it seems apparent that most interstitial cystitis sufferers generally have high levels of candida as an added complication or even as a component of the condition. I probably had a high level of candida before I was ever exposed to the primary pathogen enterococcus, because I loved chocolate, sugar, and coffee, plus had had prolonged antibiotic treatment for mild pneumonia as a teenager. These conditions are ideal settings for candida to become a systemic problem, and I have never yet found an Interstitial Cystitis sufferer over the internet who does not have a candida problem. Almost all of them seem aware that the problem exists, either because lab tests confirmed it for them or because their own research led them to the conclusion.
For anyone seeking to get well, my best advice is to pray knowing that God WILL help you, don't trust any doctor who tells you that interstitial cystitis is an autoimmune disease or that it is incurable, and take your health into your own hands because most of the medical community does not seem to be equipped to help this illness. There are a number of individuals tackling Interstitial Cystitis through natural antibiotics and supplements, and doctors like Matia Brizman who successfully treat some patients without antibiotics. But the main point is do your own research and don't quit until you are well.
Your best friends will often be other patients making the same journey. I knew five others using antibiotics when I attempted antibiotic therapy. Three are now well and two are making steady progress. I know two others who are taking the route to healing through natural means, and both of them are much better. The fact that all their stories are not posted does not mean these success stories don't exist. And, I have heard of others who have long since gotten well, and as a result had gotten their lives back. I pray that every reader suffering from Interstitial Cystitis will gain renewed hope from the stories posted on this website, and I owe many thanks to websites such as this for my own recovery.