The following are my views and opinions about IC and topics that relate to the disease. They are only my opinions and I don't believe them to be the tell all and end all. Nor are they written in stone. These are my views as of today, and if my views or your views for that matter change tomorrow than that is perfectly OK. Opinions about IC can change based on new experiences and medical breakthroughs. It is perfectly acceptable for people's feelings to change. I am allowed to change my opinion and so are you. I have added my views to this website because they are things I have pondered on and I feel it is healthy for me personally to share them. Also, I feel that some of us are probably thinking along the same line and it might be nice for people to know they are not alone in their thoughts.
There is a lot of debate on the validity of bacterial testing. The difference in the opinions out there can be quite confusing. I know that I found it painfully confusing while trying to make a decision about antibiotic therapy. How was I to know that it was really Enterococcus that was infecting me? Some will argue that a urine sample that is un-refrigerated and sent in the mail overnight to a lab (which is practiced when sending in a sample for a broth culture) would have to be contaminated and that all sorts of bacteria will multiply in warm temperatures. The counter argument is that it is not the amount of bacteria that matters in regards to broth cultures but the organism that is present, and also that Enterococcus would not consistently show up if contamination were the issue. If contamination were the issue than there would be a variety of different organisms present in all of our different samples. Another argument is that Enterococcus should not be found in urine samples at all and if it is present you have an infection. The counter argument is that there is still no proof that you are infected since Enterococcus can be found in the urine samples of those who have no symptoms. Many of us who have done antibiotic therapy still show Enterococcus even after we have gotten better. Then there is the colony count verses the broth culture. The argument goes that the broth culture is an inaccurate test because it amplifies bacteria and allows it to grow too long, thus leading to a false result of positive. Some believe that the colony count does not detect our infections because it lies deep in the bladder and only a small amount will spill out in the urine, thus leading to a false result of negative. According to Dr. Wonderful's view all urine tests are contaminated if not taken from a catheter. He did not even bother to take a sample from a cup. He felt that there was no such thing as a "clean" catch. The first dipstick test that I took in the doctors office determined that I had an infection, everyone I took in the doctor's office after that showed that I did not have infection, then my cultures determined that I did not have an infection. However, before taking antibiotics, whenever I took the AZO home test it always showed positive. That stupid thing was always purple and yet I was told I did not have an infection. Today when I take it (as an experiment) it is negative. If your head is spinning you are not alone, so is mine. To this day I still don't fully understand it. I bet you are wondering how the heck I ever came to a decision based on the nightmarish confusing information that I printed above about bacterial testing. The answer is that I did not make my decision solely based on that information. I just used my test results as a measure to help me decide. I felt that I was infected because I had symptoms in conjunction with the test results and that there was a high probability that the organism Enterococcus was the culprit that was making me sick at present since it showed in tests from two different labs. Then of course there was the fact that a lot of people had positive results from antibiotic therapy, and the fact that short- term antibiotics had helped me in the past. All this told me that this therapy was worth a try. Regardless of all the logic that I came up with the fact of the matter remained that I would never really know without a trial. Only then would I find out what would really happen.
I was concerned that Michael and I might be passing an infection back and forth to one another so I sent his sample to Dr. Fuggazoto and United Medical Lab. Dr. F's sample came back positive for Micrococcus, which is a totally different organism so we could not be infecting one another. United Medical came back with Enterobacter Cloacae. Two inconsistent test results, a different organism to mine and the fact that Michael had no symptoms convinced me that it was not necessary for him to go on antibiotics so he did not, and I feel it was a wise decision. Through my writing it may sound as though I made these decisions easily but I did not. They took hours and hours of long hard thinking and debating in my own mind. I had a lot of "brain burn" during that time. My feeling about bacterial testing is that medical science is a long way away from accurate tests that can pinpoint a result, which is 100% accurate all the time. Scientists did not even have the ability to see bacteria until a mere 120 years ago. It seems to me that there is a huge gray area. I know that someday that will change that and medical science will become far more advanced in this technology, however that is tomorrow and this is today. So I decided that I had to do my best to work with the testing techniques that are out there now. I did not feel I had much of a choice. Some people would think I was crazy and until the day comes where those tests can tell you "this is exactly what you have and we are sure of it" they will not touch an antibiotic. They are very uncomfortable with my logic and I understand it and respect the decisions that they made for themselves. Me, I decided to work with the best technology had to offer today and at the end of the day it still came down to chance. There are a lot of things that are not understood about either bacteria or IC. If there is one thing I think I finally came to acceptance with it is that sometimes decisions have to be made and chances have to be taken in the midst of a huge gray area.
One of the greatest mechanisms of support that we have is the advice and love of one another. I have gotten so much help from those on the IC boards who have shared my pain and I have learned a great deal. The experience of others has taught me so much from a patient perspective. I would spend hours sifting through different boards reading post after post, learning and absorbing more and more valuable information. Even if the topic of discussion did not pertain to my situation I would read it, absorb it and later pass the information that I read on to someone who may find it helpful. There have been countless times that I have watched people helping one another and it has brought me great joy. Unfortunately there have also been times where I have watched people say things to hurt one another. Usually that is because there was a difference in opinion. Antibiotic therapy for one (among many) can be a very hot topic for debate. Those who have been helped by antibiotic therapy want to preach it to the world because they genuinely do want people to get better just like they have. They want to take everyone with them because they don't want others to have to live in pain anymore. Those who are opposed to antibiotic therapy feel compelled to warn everybody because they fear that overuse of antibiotics are dangerous and someone out there may get hurt. These differences in beliefs coupled with deep concern for others can lead to some very nasty public discussions as well as anger and hurt for the two parties involved. It always amazes me that those same two parties who are so concerned about everyone else getting hurt don't think about the impact they are having on the feelings of one another. Not to mention that they are disrupting the same board that others are going to for solace. I don't feel that most of these people are purposely trying to be hurtful but that they are just not thinking about the repercussions before writing and posting. We are all human and it is impossible for us to all have the same view. Hey, I am human too. There has been many times where I have read posts that I totally disagreed with and I even got angry about it. However, I have realized that it is not my job to save the world from what I think is bad advice. We all have the right to share our views and opinions and who is to say what is the right or wrong advice anyway. It is up to the individual to decide which advice they do or do not choose to take and not up to you to pursued them to do otherwise. I am not saying that it is wrong to have an opposing opinion. Of course it is not, you have the right to speak your mind. It is just that we need to do it with kindness and tact. Think about all of the physical and mental pain you have been through. Would you like it if someone added to everything you are already going through by hurting your feelings or insulting you? Of course you do not, and I know that deep down you really would not want to upset the others that you share so much in common with. So the next time you are reading something that you disagree with, whatever the topic, give your perspective in a mature and respectful manner or keep your nose out of it and move on. You know what they say? "If you don't have anything nice to say don't say anything at all."
What is IC in the first place? Yes I know the text book definition for it as well as anyone else but to me that does not explain what IC really is. Since it is a disease that is not understood than it is questionable that any of us have this thing that they call Interstitial Cystitis. Sometimes I feel like saying, "will the real IC please stand up". To date you have IC if you find a doctor who says that you do and they all seem to have a difference in opinion about the criteria that should be used to diagnose this disease. For every doctor who says that you do have it there is one who says that you don't have it and that you have been mis-diagnosed. So which one is correct? I think that it is mind boggling that often the same doctors who say "YOU DO NOT HAVE IC" will give the same treatments that are used for IC and yet they can't tell patients what they do have. I have seen this dozens and dozens of times. I for one think that there is a strong possibility that IC has different causes and that perhaps it will be recognized someday that there are different kinds of IC. Bacterial, hormonal, allergies, autoimmune and muscular could be five of those groups for example. So for now I consider IC to be a disease where a large group of patients suffer from similar symptoms but the cause is unknown.
Do I think I have IC? Given what is actually understood as of today about this thing that they call IC, yes I think I do. Do I think so because my Urologist thinks I do? No, I think so because I had the same symptoms as others that have been technically diagnosed with IC as well as almost all the same symptoms which are described in the explanations to "What is Interstitial Cystitis". My symptoms seem to match what little is known about it. More importantly they can't find anything else wrong with me. I would love to believe that I just had a really bad bacterial infection and now it is over, however that would not explain the four years of frequency of urination that built up slowly before my onset of symptoms. Or the mild twinges and infrequent episodes of mild urinary frequency I still get today. A lot of people struggle for their diagnosis with IC and sometimes it can take years. It is in my opinion that if you can't get a technical diagnosis and you are experiencing all of the symptoms of IC you should not hold off on trying a treatment that those who are diagnosed with IC are recommended to try since it may help. I have seen people who won't try treatments that are used for IC (although they have all the symptoms) because they have not been told that Interstitial Cystitis is what they have for sure. To me there is no reason to suffer in the meantime since that treatment may help.
There has been a lot of debate about the choice of words that one who has gotten over the symptoms of IC chooses to use. Three words are frequently used. Healed, remission or cured. It is cured that seems to bring the most controversy. There are folks that are adamant that IC is not curable and anyone who uses the term cured is either a fraud or they never really had IC in the first place. I for one support those who feel that they are cured. It is their body and their experience and if they feel that strongly that they are cured then perhaps they are. Can any of us really prove that IC cannot be cured? If a person is feeling absolutely no symptoms of IC anymore, and especially if they have been feeling this way for a number of years, how can we criticize them for believing this? How can we say that they are wrong when they are the one's living inside their own bodies and know the way they feel? I for one chose to use the term healed. To be honest cured is too strong of a term for me and remission implies that I will definitely get sick again at some point. I liked to use the word healed because it is somewhere in the middle of those two. I feel that I have a right to say I am healed because that is the way I feel. It is a word I am comfortable with using and the choice of that word is up to me. I think it is OK for someone who does not have the symptoms of IC anymore to use the terms cured, healed or remission. It is up to the individual to describe feeling symptom free as they see fit. People don't have to believe that IC is curable but they also don't have to attack those who feel it is.
Let's face it, the majority of us have had some pretty bad experiences with doctors. We are afraid to even try a new doctor out of fear of having another bad experience. So much so that we tolerate our current doctor who is hardly doing anything to help us because we feel it is "better to deal with the devil you know" rather then go through the pain of seeking help elsewhere. It is in my opinion that there are a lot of average and even bad doctors out there. I also feel that there are some wonderful doctors out there. You just have to do your part in working hard to find them. I know, much easier said then done. Look at the experiences I have had with doctors. From my story you can see that I have had both good and bad. You will also see that it was a variety of different doctors who helped me in different ways and I am thankful to each of them for the role they played in helping me. For example, Dr. S for having an open mind. Dr. D for giving me piece of mind and running blood tests. My gynecologist for figuring out that I had dermatitis. In my case no one doctor helped me completely but they did help me. I guess the point I am trying to make here is that you have to responsibility for your illness by educating yourself on the subject matter and using your own thought processes to find ways to help yourself in addition to seeing doctors. If you can find a doctor who will take control of your whole situation and fix you then more power to you. I never could and I don't think most people can. Doctors tend to dozens of patients a day and I don't doubt that it is not long before you have left their office that they have forgotten about you completely. I think it would be quite rare for a doctor to go home to his/her family at night and kiss their spouse, hug their children and go straight into the study to do some research on IC to help you. They will not put the time into solving your problems the way you will because it is your body and your disease and you have to live with it. They don't. I am not saying never to see a doctor, I am just saying you will have to learn to rely on yourself and not completely on a doctor. Educate yourself and read every book and article on IC and related topics that you can find. Go to message boards and read all of the posts to learn from others (I understand so much more because I did this). Pay attention to your symptoms and think about what you think might help you or what may be hurting you. You can use doctors in your fight to regain your health but you also need to take responsibility in helping yourself and if you are unhappy with your current doctor leave and find someone else. I know that is easier said then done but it can be done and it will be worth finding the courage to do so in the end. Also, to me one of the most important things a doctor can have is an open mind. I was so much better off dealing with people who were willing to work with me and listen to my opinions and try some things I might suggest. If a doctor has no trust or faith in his or her patients and has a closed mind to their suggestions within reason then it is in my opinion that it is time to find a new doctor.
We all have ideas as to where our IC may have come from or at least what may have finally pushed our already vulnerable bodies over the edge. I of course have mine too. I believe it was Catherine Simone who talked about toxins and the change of the environment in your body possibly causing the onset of IC symptoms. Before my onset of symptoms in January of 1999 when I just had frequency I had wondered if birth control pills had anything to do with it. I had been on the pill for six years and had frequency for four. It was and still is hard to tell if it was just a coincidence or if the pill caused this. I once asked Dr. S if the pill could have anything to do with my problems and he said no. However, it has been documented that birth control pills can cause you to have yeast infections. I often wonder if the birth control pills had caused yeast overgrowth, which in turn is documented to cause urinary frequency as well as toxic body. It may very well have been a toxic environment in my body that was originally caused by birth control pills that eventually pushed me over the edge and brought out my symptoms by causing an infection. Even if it was not the origin it may have pushed my already prone to IC body completely over the edge. I have often tried to find some negative documentation about the pill but most of the articles about birth control talk about how safe (and even good for) you the pill is. I am not so sure that is 100% true. I find it hard to believe that synthetic hormones won't do a human being any harm at all. I mean medical science is kind of messing with Mother Nature here. It stops something that is very natural for a woman and that is ovulation! I don't doubt that will cause some woman problems even if it is rarely seen or talked about. I did read once on the ICA website a statement written by Susan Keay that birth control pills can raise the risk of urinary tract infections. Of course this caught my eye because I struggle to find evidence to support my suspicions. Alternative healthcare practitioners are the only group I can seem to find who are also skeptical about the pill. Mainstream medicine still continues to praise it and regard it as safe for most women. I am sure that there are plenty of people who can take the pill for a number of years and never have any negative effects from it. I am sure that there are a number of people who are helped by the pill (ie. reduction of painful periods and ovarian cysts). However, I also think that there is a high probability that long term use can of the pill can have negative effects on woman that are not yet understood. I am not saying that woman should not take birth control pills but my advice to them would be to take acidophilus everyday and other precautions against yeast overgrowth. I would also take breaks from the pill rather then taking it for years and years without stopping like I did.
There is a lot of hype about the overuse of antibiotics and it's potential dangers. That is why so many people are against the use of long term antibiotics for the treatment of IC. I for one did not consider long term antibiotic therapy to effectively treat an infection as overuse. They are made to treat bacterial infections and an infection is what I had. It has been stated that there is no proof that Interstitial Cystitis is caused by bacteria but it has also been acknowledged that there is a very strong possibility that there is a bacterial connection with IC that is the cause of symptoms for many of us. Given that evidence I don't see anything wrong with long term antibiotic therapy being a treatment option that is acceptable to the IC medical community, like treatments such as Interstim and Elmiron. Elmiron is so widely accepted and used yet most of the people that I speak with on the IC boards have little success with it. I have spoken to more people who have had success with antibiotic therapy and yet the medical community still continues to refuse to acknowledge that fact. So those of us who wish to try antibiotic therapy are forced to wander around from doctor to doctor, being viewed as nutcases by some, until we finally find a doctor who has enough of an open mind to give the therapy a try. If we had some documentation that was published in a medical journal acknowledging that long term antibiotic therapy was an effective treatment for some patients of IC it would be a lot less painful for us to try the therapy instead of being treated like freaks in the process. To me there is a problem with the overuse of antibiotics in regards to taking them for things like the common cold and acne. However, I do not consider them to be overused when it comes to treating a bacterial infection, which again, bacterial connections to IC have already been acknowledged. Believe me I have learned more about antibiotics since having IC and will never take them again unless I have to. If the doctor tries to prescribe me antibiotics for a cold I throw that prescription away. But I would take antibiotics again for an infection if I had to. I don't see antibiotics as the cure for IC but until that cure comes along I would like to see the practices of long term antibiotic therapy as a treatment option for IC that is properly taught and practiced. Practiced and monitored in a safe way, such as the way that BJ Czarapata uses it. There are so many of us out there who have been helped by this therapy. How long are those with IC using antibiotics going to be denied proper monitoring by a medical professional who is educated on the subject, and the precautions that come with the therapy such as treatment of yeast? If not for this therapy I would still be sick today and I would not be leading the normal life I deserve to lead like most people are privileged to do.
If you are experiencing "weird" symptoms along with your IC and think that those symptoms are related to the disease you're not crazy. They probably are. There are a lot of feelings and symptoms that are never documented that come along with IC and other diseases. I had zaps and feelings of electricity and pain running through my fingers and toes. Sometimes I would be writing and my wrists would just cramp up. These were things that never happened to me before I had IC. When I had bacterial vaginosis I had some urinary frequency and that old familiar feeling of pressure on my bladder. When I asked my Gynecologist if this had anything to do with the vaginal infection she said no. Well of course she said no because in her medical documentation urinary frequency is not a symptoms under bacterial vaginosis. For normal healthy people it probably is not a symptom, but for people with abnormal bladders such as myself it is a symptom. I know this because once the infection was cleared and things settled back to normal down there those symptoms disappeared. Things that may not effect other people's bladders and bodies in a negative way can effect ours. So when you have these kinds of experiences just know that you are not crazy. Trust yourself.