I believe my IC is a highly resistant infection
Hello,
I came to this site in terrible pain about a year and a half ago and read many forum topics. Most of my readings were very helpful; they helped feel that I wasn't alone and that I could get better despite their being no "cure." Presently, I am on the mend and so I felt I wanted to give back what this site gave to me. It has been a long journey of different treatments and so I wanted share my experience, strength and hope.
My first partner in helping me heal was my spiritual faith. Without that, I would have lost hope.
My story is not unlike the many others I have heard--felt like I had a bladder infection, went to the doctors, it didn't go away. Went through the bladder distention, biopies taken, diagnosis confirmed--IC.
My first treatment was Elmiron, Atarax, and other medications which helped very little. Elmiron cause internal bleeding and gave me unbearalbe back pain. One day while laying in bed not able to get up, sitting on icepacks, I found some info on the internet that led me to Matia Brizman, an acupucturist in Los Angeles. She specializes in IC. I felt very desparate for help so I flew down to see her right away. I followed everything she said and began to get better. The biggest contributor to my healing was following her suggested diet.
I felt like her treatment was not enough so with the recommendation of other IC sufferers, I started see a physical therapist who specialized in pelvic floor dysfunction and that helped a great deal. She was able to find trigger points that helped release tension which helped me feel better as well.
But still, I felt like I needed more help. I saw my internal medicine doctor who started antibiotic injections in my vagina (no needle) and that has helped immensley. I have noticed that when I would take an antibiotic like augmentin, cipro, or avelox orally, I would notice an improvement for a short time and then things would just get worse. I was also experiencing yeast problems vaginally and orally and so she began to treat yeast as well. I have now had four treatments and I am improving. I do feel like this is an infection and oral antibiotics don't work! I believe that going straight to the problem area with antibiotics vaginally is an answer for me.
I realize that this is a complicated, multifaceted problem with no quick answers. IC feels like an onion, I just keep peeling back the layers of healing. It is an up and down roller coaster, but I really do feel like I'm headed in the right direction using the antibiotics. I wanted to share my experience so that I might help other people as my story may also help others. Again, I realize everyone is different, I realize that IC is not clinically and infection but, you know--the doctors don't really know what IC is. They don't know what causes it. They don't know how to cure it. They have a catch all name "painful bladder syndrome." I believe for me it is an infection that is hightly resistant to antibiotics. It can not be tested with cultures, or blood tests. Just because our current testing methods don't detect an infection, does not mean there is no infection, we just don't have the appropiate method to test yet.
From the get go, I have felt that antibiotics could help as I did feel a slight change when I took them orally, but not nearly enought to make a case for it. Again, it wasn't until the vaginal insertion of antibiotics that I saw a real difference.
I asked my doctor if I could post her name and she asked me not to as she did not want to be unindated with calls. But I can share my experience and my treatments if anyone is interested in knowing more.
Love to us all!
April
I agree with you in part !
I have ulcerative Interstitial cystitis and I also have an autoimmune disease which is accompanied by IBS, Raynauds and Arthrtis.
I am very sensitive to medications, odors, chemicals et cetera and there are time that I itch from head to toe for no apparent reason other than my body like many other ICers makes to much histamine.
Antibiotics have been a large culprit in my life. Take an antibiotic for an UTI or Sinus infection, it may clear that up but results in a painful episode.
Recent studies have proven that ic is a promble related to the central nervous system, that we ICers are more vulnerable to stressors.
Urologist don't treat IC they try to treat the symptoms with very little positive results for the paitent.
I am appauled at the fact that they give elmiron out like it is candy, because they don't know what to do. Elmiron is heparin for god sake they know there are thousands of lawsuits due to the damage heparin has caused.
Recently I spoke with a woman who was pregnant and having DSMO, she told the doctor she was pregnant, then she mention to her pc that she was having the Dsmo which wasn't helping and said NO, your pregnant, it can hurt the fetus, she freaks out calls the urologist who denied that she ever told him that she was pregnant.
I took your route, naturopathic doctor, chiro, PT and self help techniques and the only time in the last 4 years that i have had an episode is when I had no choice but to take an antibiotic.
It makes me furious as when I see doctors putting IC patients on Detrol for frequency, we have frequency mainly due to our bladders not emptying all the way and the constant urge to pee. This is why I ended up with hunner ulcers!
Urologist put woman on daily regimen of Macrobid......everyone knows taking antibiotic orally are no good.
What the hec are they thinking.
I don't believe this is an infection that is hard to treat. I treat the IC as an allergy. I am not saying that your wrong or right, we are all entitled to our opinions. In honestly I don't know, I just know there is no cure and urologist don't have a clue so I can only help myself and try to help others by being supportive.
Antibiotic treatment and IC
I also have IC and IBS. It was only last February that I started with horrific pain in my bladder and after a biopsy, I was diagnosed with IC. From the bladder distention of the biopsy, I felt WONDERFUL. However, it only lasted about 3 months and then I started to go down hill.
In the last month I had, what I thought to be a very bad flare up. I went to my Urologist and had a urine test, which proved to be a UTI. My doctor placed me on Cipro 500 mg twice a day for 10 days. I must say I haven't felt this good since my bladder distention. Now in the past, sometimes Cipro has not helped. But am now thinking, perhaps it was because my doctor prescribed a lesser dosage, for a less number of days in the past.
I am inclined to agree with you that infection plays a part of this very mysterious disease. Now perhaps it is because the bladder is immune suppressed, that infection is more common and more sensitive to bacteria
Thank you for sharing your story, April
April, thank you very much for taking the time to share such a deeply personal story of your ongoing IC battle with us here. I've always felt that it's truly important to hear other peoples' firsthand accounts of their experiences with IC and what they feel may be at the root of their symptoms. Indeed, science has not yet found a precise cause (or multiple causes) of IC, so we can't rule anything that's potentially plausible out at this point.
I commend you for striving to find ways to "take back your life", in the sense that you pushed onwards and explored so many avenues of treatment. I fully believe that we are each our own biggest advocate of our health, and that it vital to always continue to try and keep and open mind to the idea both well established IC treatments and new, less conventional forms of help as well.
Personally I know that antibiotics do not help my IC at all, in fact they worsen my symptoms (and aggravate by IBS, as they strip away the gut flora from your GI tract, which is why it's a good idea to ensure that you take acidophilus while on antibiotics). However you would not be the first ICer to swear by their benefits. You know, the longer I have IC, the more I can't help but think that perhaps IC has multiple causes and/or forms (in much the same way that cancer does) and that perhaps depending on what caused your IC (and/or what form of IC you have), your body will respond far better to certain types of treatments. If this was the case it might account for why some ICers respond well to certain treatments (be they conventional or "alternative") and why others do not.
Thank you again, April, for posting your very unique story. I'm sure many readers will find it vastly interesting!
Healing wishes,
Jessica
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!