Sera
08-18-2008, 05:23 AM
Hi everyone, my name is Sera and I am 23 years old. I am new to the ICN community and am looking to educate myself further on the mysteries of my body, especially my pelvic region.
(Tentative Diagnosis of IC)
In August 2007, I had my first, very intense urinary tract infection. I went to the after hours emergency room and was given antibiotics (I do not recall the type) and Pyridium in which I found relief within 1-2 days. The intense symptoms were gone by the time I finished the antibiotics, but looking back I realized that I never felt I regained the "control" I used to have over my bladder and my urine. I began noticing very, very gradual symptoms over a span of eight months. I began to gradually have increasing pain and nausea after I urinated, and I would need to urinate frequently; if for some reason I had to hold my urine not only would I experience the embarrassment of slight leaking (I felt as though I did not have the same strength in my pelvic muscles), the pain and discomfort afterward (and later beforehand, also) became excruciating to the point where once while driving home it brought me to tears. The frequency and not wanting to hold my urine in fear of this pain meant that I had to get up to use the restroom at least twice each night, if not three, four or five times. It got to the point where I would wake up at 4am, use the restroom, and after I voided it felt as though someone punched me in the bladder. I would wobble back to bed and lay in pain and nausea that would last for 1-2 hours. At the absolute worst point, I had to urinate every 30 minutes during the day, and every hour during the night, just to find some relief while voiding, and while it felt like my bladder was full and stretched to its means, in actuality I wasn't holding very much urine at all.
I went to my primary care doctor in May of 2008 and after a urinalysis was told that I had a low-grade UTI, which I had probably had for several months. The doctor put me on the generic for Septra DS (2 tablets/day) along with Pyridium for the pain. I completed this antibiotic and it did not make me feel better at all; I was later told that my body resisted this antibiotic and the infection started to spread to my kidneys (I began to feel feverish and have intense lower back pain, especially after urinating). I went back and the doctor and was prescribed the generic for Macrobid (100mg tablets, 2 tablets/day) in which I found relief from the back pain and overall ill feeling within 2 days. However, after finishing that second antibiotic, I still had the previous symptoms I mentioned including frequency and urgency, less feeling of control, etc., but the paid after voiding was a bit more mild. My primary care doctor recommended that I seek out an urologist.
Upon recommendation I went to an urologist and had transpelvic, transvaginal and renal ultrasounds performed. All three ultrasounds came back as “essentially normal.” I then had a cystourethoscopy which showed that the lining of my bladder was/is mildly to moderately irritated (increased redness and blood vessels) but there was no apparent case for this irritation and no other visual abnormalities. My bladder was filled with water and tested; the doctor informed me that my bladder can hold only one half the amount of fluid before discomfort than a normal, healthy bladder could hold. The urologist then gave me pamphlets and discussed the tentative diagnosis of interstitial cystitis. He explained that this condition is a lot less "cut and dry" than other conditions in urology, and that it is a fairly new concept in that there still is no definite cause, treatment or cure. He told me that he did not want to put me on any medication yet due to possible side effects (I am very sensitive to medication in general), but that he wanted me to begin and work with the IC elimination diet and that what I consume has been found to have a direct impact on the health of my bladder with this condition. He also put me on a lower dose of the generic for Macrobid (100mg tablets, 1 tablet/day) for an additional 30 days to ensure that no infections reoccur.
I then began the IC elimination diet wholeheartedly (I was ready to feel better) and have been on this diet ever since. It took about a week and a half before I noticed any changes. I have been able to add a food item here and there, but I have found that I absolutely cannot consume any of the following food types without experiencing pain, frequency, burning and discomfort: red pepper, cayenne, curry powder, lemon, lime, orange (all citric acid), paprika, tumeric, tomatoes (raw, paste, sauce), and any spicy food such as jalapenos, horse radish, wasabi, etc. There are other foods that give me mild discomfort, but the above cause the most. Also after eating something of this sort my stomach feels as though it turns into a bubbling acid pit—in the sense that I burp up a very acidic taste. Usually I experience symptoms about 15 minutes after consuming something I shouldn’t have, and because I have been on this elimination diet I have a much more keen sense of taste and can taste when food contains citris, is spicy, etc. When this occurs I usually take 3-4 Tums and drink plenty of water, but this is about all I can do to relieve symptoms. I also have Prelief pills which I can take prior to eating something that I feel may be too acidic, but I usually avoid these foods altogether.
All in all, this diet has made me feel worlds better (and healthier). I am disappointed that I am so limited in the foods I can eat (I pretty much cannot eat any fast food anymore, junk foods, processed foods, etc.) but in the process I have lost a notable amount of excess weight and feel more energetic despite not being very active in my day-to-day work routine. This issue has caused added stress, and it has become regular discussion with my therapist of 5 years. It has also put a damper on social functions as many seem to revolve around food and eating. However, I have fully embraced this diet from the start and feel that it has very much improved my symptoms.
I also wanted to give a little background on other ailments of the pelvic region that I have gone through... I do not know if these are related to IC in any way, but perhaps there is some correlation:
(Chronic Pelvic Pain (Lower Right Quadrant)
I’ve had chronic pain in my lower right quadrant (near my right ovary) for over five years. Pelvic ultrasounds showed that I had ovarian cysts, but they came and went. The pain became increasingly worse during menstruation. I’ve been to a handful of gynecologists which have ruled out endometriosis (I had a laparoscopy performed in summer 2005) and put me on continuous birth control pills (currently Necon 1/35, generic for Ortho Novum 1/35). This has eliminated most of my periods as well as noticeably reduced the pain. However, in fall 2007 I went for a (3rd? 4th?) opinion, and the specialist told me of the possibility of a nerve entrapment in my lower right quadrant. I got a series of nerve block injections (four, each two weeks apart) as well as topical cream compound of 40% ketoprofen, 15% lidocaine, 10% dmso in lipoderm). The combination of the nerve block injections, use of the cream on an as-needed basis (which I haven’t needed for 6+ months now), and the continuous birth control has relieved 99% of the pain. The only time that I experience pain in that area is if I miss a BC pill, have break-through-bleeding while taking BC pills, over exercise and aggravate that area of my body, or when I am notably stressed.
(Bartholin’s Gland Abscess)
Semi-related, I also had a swollen Bartholin’s gland in summer 2005 which was diagnosed as an abscess. I had the entire gland surgically removed in summer 2005, however it still swells during sexual activity (but goes away within a 24-hour period at most). I was told by a later gynecologist in 2006 that despite a surgeon’s best efforts, there is still the possibility that some of the gland could be left in the body, causing more inflammation. This is something that I am also worried about because it does become uncomfortable and I am concerned that it could get worse.
Thank you very much in advance for your thoughts. I am still a bit overwhelmed by all of this--IC is still very much a mystery to me--and am looking forward to reading others' posts to hear other approaches/treatments, and also to not feel so alone.
~Sera
(Tentative Diagnosis of IC)
In August 2007, I had my first, very intense urinary tract infection. I went to the after hours emergency room and was given antibiotics (I do not recall the type) and Pyridium in which I found relief within 1-2 days. The intense symptoms were gone by the time I finished the antibiotics, but looking back I realized that I never felt I regained the "control" I used to have over my bladder and my urine. I began noticing very, very gradual symptoms over a span of eight months. I began to gradually have increasing pain and nausea after I urinated, and I would need to urinate frequently; if for some reason I had to hold my urine not only would I experience the embarrassment of slight leaking (I felt as though I did not have the same strength in my pelvic muscles), the pain and discomfort afterward (and later beforehand, also) became excruciating to the point where once while driving home it brought me to tears. The frequency and not wanting to hold my urine in fear of this pain meant that I had to get up to use the restroom at least twice each night, if not three, four or five times. It got to the point where I would wake up at 4am, use the restroom, and after I voided it felt as though someone punched me in the bladder. I would wobble back to bed and lay in pain and nausea that would last for 1-2 hours. At the absolute worst point, I had to urinate every 30 minutes during the day, and every hour during the night, just to find some relief while voiding, and while it felt like my bladder was full and stretched to its means, in actuality I wasn't holding very much urine at all.
I went to my primary care doctor in May of 2008 and after a urinalysis was told that I had a low-grade UTI, which I had probably had for several months. The doctor put me on the generic for Septra DS (2 tablets/day) along with Pyridium for the pain. I completed this antibiotic and it did not make me feel better at all; I was later told that my body resisted this antibiotic and the infection started to spread to my kidneys (I began to feel feverish and have intense lower back pain, especially after urinating). I went back and the doctor and was prescribed the generic for Macrobid (100mg tablets, 2 tablets/day) in which I found relief from the back pain and overall ill feeling within 2 days. However, after finishing that second antibiotic, I still had the previous symptoms I mentioned including frequency and urgency, less feeling of control, etc., but the paid after voiding was a bit more mild. My primary care doctor recommended that I seek out an urologist.
Upon recommendation I went to an urologist and had transpelvic, transvaginal and renal ultrasounds performed. All three ultrasounds came back as “essentially normal.” I then had a cystourethoscopy which showed that the lining of my bladder was/is mildly to moderately irritated (increased redness and blood vessels) but there was no apparent case for this irritation and no other visual abnormalities. My bladder was filled with water and tested; the doctor informed me that my bladder can hold only one half the amount of fluid before discomfort than a normal, healthy bladder could hold. The urologist then gave me pamphlets and discussed the tentative diagnosis of interstitial cystitis. He explained that this condition is a lot less "cut and dry" than other conditions in urology, and that it is a fairly new concept in that there still is no definite cause, treatment or cure. He told me that he did not want to put me on any medication yet due to possible side effects (I am very sensitive to medication in general), but that he wanted me to begin and work with the IC elimination diet and that what I consume has been found to have a direct impact on the health of my bladder with this condition. He also put me on a lower dose of the generic for Macrobid (100mg tablets, 1 tablet/day) for an additional 30 days to ensure that no infections reoccur.
I then began the IC elimination diet wholeheartedly (I was ready to feel better) and have been on this diet ever since. It took about a week and a half before I noticed any changes. I have been able to add a food item here and there, but I have found that I absolutely cannot consume any of the following food types without experiencing pain, frequency, burning and discomfort: red pepper, cayenne, curry powder, lemon, lime, orange (all citric acid), paprika, tumeric, tomatoes (raw, paste, sauce), and any spicy food such as jalapenos, horse radish, wasabi, etc. There are other foods that give me mild discomfort, but the above cause the most. Also after eating something of this sort my stomach feels as though it turns into a bubbling acid pit—in the sense that I burp up a very acidic taste. Usually I experience symptoms about 15 minutes after consuming something I shouldn’t have, and because I have been on this elimination diet I have a much more keen sense of taste and can taste when food contains citris, is spicy, etc. When this occurs I usually take 3-4 Tums and drink plenty of water, but this is about all I can do to relieve symptoms. I also have Prelief pills which I can take prior to eating something that I feel may be too acidic, but I usually avoid these foods altogether.
All in all, this diet has made me feel worlds better (and healthier). I am disappointed that I am so limited in the foods I can eat (I pretty much cannot eat any fast food anymore, junk foods, processed foods, etc.) but in the process I have lost a notable amount of excess weight and feel more energetic despite not being very active in my day-to-day work routine. This issue has caused added stress, and it has become regular discussion with my therapist of 5 years. It has also put a damper on social functions as many seem to revolve around food and eating. However, I have fully embraced this diet from the start and feel that it has very much improved my symptoms.
I also wanted to give a little background on other ailments of the pelvic region that I have gone through... I do not know if these are related to IC in any way, but perhaps there is some correlation:
(Chronic Pelvic Pain (Lower Right Quadrant)
I’ve had chronic pain in my lower right quadrant (near my right ovary) for over five years. Pelvic ultrasounds showed that I had ovarian cysts, but they came and went. The pain became increasingly worse during menstruation. I’ve been to a handful of gynecologists which have ruled out endometriosis (I had a laparoscopy performed in summer 2005) and put me on continuous birth control pills (currently Necon 1/35, generic for Ortho Novum 1/35). This has eliminated most of my periods as well as noticeably reduced the pain. However, in fall 2007 I went for a (3rd? 4th?) opinion, and the specialist told me of the possibility of a nerve entrapment in my lower right quadrant. I got a series of nerve block injections (four, each two weeks apart) as well as topical cream compound of 40% ketoprofen, 15% lidocaine, 10% dmso in lipoderm). The combination of the nerve block injections, use of the cream on an as-needed basis (which I haven’t needed for 6+ months now), and the continuous birth control has relieved 99% of the pain. The only time that I experience pain in that area is if I miss a BC pill, have break-through-bleeding while taking BC pills, over exercise and aggravate that area of my body, or when I am notably stressed.
(Bartholin’s Gland Abscess)
Semi-related, I also had a swollen Bartholin’s gland in summer 2005 which was diagnosed as an abscess. I had the entire gland surgically removed in summer 2005, however it still swells during sexual activity (but goes away within a 24-hour period at most). I was told by a later gynecologist in 2006 that despite a surgeon’s best efforts, there is still the possibility that some of the gland could be left in the body, causing more inflammation. This is something that I am also worried about because it does become uncomfortable and I am concerned that it could get worse.
Thank you very much in advance for your thoughts. I am still a bit overwhelmed by all of this--IC is still very much a mystery to me--and am looking forward to reading others' posts to hear other approaches/treatments, and also to not feel so alone.
~Sera