mello64
01-02-2009, 12:04 PM
Hi, this is my first post here. I've been reading, researching and lurking here for about a month though, and I'm so impressed with the amount of knowledge, optimism and compassion you all have!
I have so many questions and no diagnosis as yet. My regular OB's partner, whom I had not seen before an emergency visit for a UTI at Thanksgiving, through out "It could be Interstitial Cystitis" with a shrug as he left the room, after saying the culture came back negative for UTI. He said to keep taking Cystex & Azo if that helps, and if it doesn't go away after awhile they'd send me to a Urologist.
Well, it's been awhile, and it hasn't gone away, so I'm ready to call for an appointment with my regular OB and see what she thinks. In the meantime, I'm hoping some of you can give me some input.
Here's my (long) story, followed by my many questions...
2008 April: UTI symptoms most likely triggered by daily jogging, (noticed incontinence with jogging, and started kegels & tightening muscles while running/walking to compensate). Didn’t go away with usual methods. Didn’t go away with 3 rounds of antibiotics (Cipro, Bactrim & Septra).
Discovered Cystex and Azo/Uristat (pyridium) to mask the symptoms. Went away after about 4-5 weeks, while on vacation.
Diagnosed at same time with extreme iron-deficiency anemia. (Dr. said he’s only seen one woman with lower iron count.)
Began taking daily iron supplements; caused nausea and made constipation much, much worse (always had it
during last 2 weeks of monthly cycle, now it’s all the time).
Since April: Energy level is a bit better with iron,
constipation is much worse with iron
Feeling of heaviness in abdomen, feeling like things are trying to “fall out” from time to time
Feeling of “hitting a wall” with certain positions during sex occasionally
Sometimes, but not always, a bit of soreness & swollen/bruised feeling a day after sex. Beginning to avoid it.
Noticed another bump on inner labia (3rd one to date), which got increasingly larger, bothersome & itchy.
2008 November: UTI symptoms, seemingly triggered by sex, lasted 3 days with usual methods, called OB and began Cystex & Azo, along with Septra prescription I had from general practitioner.
Went in for culture day before Thanksgiving, and again the Monday following. Both cultures came back negative for Bacteria (Could this be because of the antibiotics & pyridium?) Symptoms still persist as of Jan 1 2009.
Dr. didn’t seem to think much of the bump or the “falling out” sensation. Said to keep taking Azo/cystex for the irritation, and if persists he’ll send me to a urologist. Said he’s not sure what could cause it; mentioned offhandedly it could be Interstitial Cystitis. His main concern seemed to be with the heavy periods; sent me for an ultrasound of my uterus, which apparently looked normal, and for an iron count in my blood, which was apparently good now. Nurse called with those results and mentioned an endometrial ablation. Wondering how that would affect my bladder?
Currently doing research and trying different non-prescription/non-invasive self-help methods.
What I’ve done so far:
Acid & Caffeine Reduction
Eliminated all coffee and tea (for years I’ve had a large latte daily, iced tea with every meal, and hot tea in the morning and at night)
Eliminated all juice (again for years I’ve had a glass of cranberry or cran-orange juice every morning)
Eliminated all soda pop, except the occasional ginger ale or root beer when nothing else is available (not hard, not a big soda drinker anyway)
Eliminated most tomatoes & tomato sauces (this is harder than it would seem)
Reduced chocolate down to a minimum (strongly crave this prior to periods, so very difficult to eliminate entirely, but trying)
Medication/Supplements
Began taking Prelief , Tums or Pepcid with most meals
Began taking Cysto Protek twice daily (started Dec 7th)
Take Azo/Uristat or Cystex once or twice a day (how long can I do this? And why are they considered only a short-term treatment?)
Take 2-3 Tylenol each morning and usually 2 before bed.
Rest/Relaxation
Trying to Rest more when I’m not feeling well
Briefed the Kids, Parents & In-Laws, so hopefully they won’t cause me extra stress
Trying to practice deep breathing and muscle loosening, but fear of incontinence makes it hard to loosen up
Sleeping with heating pad (of everything I’ve done – this is the most helpful overall – allows me to sleep all night)
Hot sitz baths with no bubbles or soaps (these are noticeably soothing too)
CuraHeat pads in the daytime (don’t really help)
Extra AstroGlide with sex, and much less sex than usual (down to 2x this month, “hit the wall” and afterward soreness both times)
Tried a muscle relaxant one night. Had an entire pain free day, even without medication, the next day! Not sure if I should try it again.
Not sure if any of it is working. Some days I forget to take any medicine and I’m fine; other days I’m miserable even all “drugged up”. Most days I moderately medicate and just try to make it through the day even though I don’t feel all that well.
To top it off, I’ve now got a cold and would so love to drink some orange juice, or some hot lemon tea. Very frustrating to avoid acids.
Continuing my research. Just began reading about Oxalates. That is discouraging because not much will be left to eat after eliminating acid, caffeine, preservatives and oxalates too (they seem to be in lots of natural foods I like that otherwise are considered healthy ie; broccoli, nuts, beans, spinach). Eliminating those would be far harder for me than the IC diet!
Family History:
Dad has Diabetes and Celiac disease
Mom has same urinary symptoms I do, not diagnosed
Sister has Seasonal Affective Disorder, takes Effexer
Niece has Celiac disease and Hypothyroidism
Daughter has Coarctation of the Aorta
Symptoms:
When I mention UTI/Yeast Symptoms I’m talking about irritation, itching, burning, urge, heaviness, extreme annoyance, but not really pain per se. I don’t have abdominal pain (except period cramps). What I have is an almost constant irritating burning feeling just inside the opening of my vaginal canal. It seems to radiate out from there, sometimes up the canal in a burning way that can almost be described as painful, though not cramp-like pain, more like fire. Or more often it radiates out on the exterior in a burning itching way that drives me nearly insane. It feels dry nearly all the time. Sometimes so dry and scratchy that walking is actually painful. Running, walking, some sitting positions, and riding in a car can be bothersome. Other sitting positions actually relieve it. Sometimes toilet paper or a seam in the underwear will bother it, other times not. Tampons & pads are always itchy and irritating; often I feel rubbed raw by them. However, I don’t feel pain constantly or upon touch. I also have an extreme heaviness in my abdomen. My bladder nearly always feels full, and often I’ll think I have to go but nothing or very little comes out. That feeling is not so much painful as annoying. I can usually ignore the feeling if I know I should not be full, so I don’t run to the bathroom as much now, but the feeling is constantly there bothering my anyway. Sometimes I wake at night thinking I need to go, but after going once, it’s difficult to ignore it long enough to get back to sleep. A heating pad helps tremendously with this; I sleep all night with it.
Questions:
What causes this???
Would eliminating heavy periods help?
I’m thinking so because tampons and pads are so irritating, PMS only adds cramps, heaviness, constipation and chocolate cravings, none of which help.
But would any potential benefits be outweighed by the ablation procedure itself? Might the performance of an ablation irritate the whole situation and make everything more sensitive? Might it make things worse?
Would this actually be classified as Interstitial Cystitis if I don’t have pain, but irritation instead?
What else might it be?
Pelvic Floor Dysfunction seems possible because of the “losing it” and “hitting the wall” feelings.
What sort of therapies or other helps are there for Pelvic floor problems?
Vulvar Vestibulitis? Seems possible too, given the set of symptoms and my lack of actual abdominal pain.
Why is Pyridium not for long-term use?
Would Urelle or Prosed DS help me then, since they seem similar in function to Pyridium?
What about Cystex? Long term okay? Other substitute?
What about this lidocaine gel or msn gel?
If one stays on a low acidic diet long-term, how does one get enough vitamin C and antioxidants?
If one is on a long-term low-oxalate diet, how does one get enough greens & fiber?
Is there a good GynoUrologist / UroGynecologist anywhere? And How do I find one? It seems most urologists are male and focus mainly on male issues: prostate problems, V-reversals, etc., and aren't necessarily all that sympathetic to women's issues.
Thank you so much for reading all this, if you got this far!
: ) melinda
I have so many questions and no diagnosis as yet. My regular OB's partner, whom I had not seen before an emergency visit for a UTI at Thanksgiving, through out "It could be Interstitial Cystitis" with a shrug as he left the room, after saying the culture came back negative for UTI. He said to keep taking Cystex & Azo if that helps, and if it doesn't go away after awhile they'd send me to a Urologist.
Well, it's been awhile, and it hasn't gone away, so I'm ready to call for an appointment with my regular OB and see what she thinks. In the meantime, I'm hoping some of you can give me some input.
Here's my (long) story, followed by my many questions...
2008 April: UTI symptoms most likely triggered by daily jogging, (noticed incontinence with jogging, and started kegels & tightening muscles while running/walking to compensate). Didn’t go away with usual methods. Didn’t go away with 3 rounds of antibiotics (Cipro, Bactrim & Septra).
Discovered Cystex and Azo/Uristat (pyridium) to mask the symptoms. Went away after about 4-5 weeks, while on vacation.
Diagnosed at same time with extreme iron-deficiency anemia. (Dr. said he’s only seen one woman with lower iron count.)
Began taking daily iron supplements; caused nausea and made constipation much, much worse (always had it
during last 2 weeks of monthly cycle, now it’s all the time).
Since April: Energy level is a bit better with iron,
constipation is much worse with iron
Feeling of heaviness in abdomen, feeling like things are trying to “fall out” from time to time
Feeling of “hitting a wall” with certain positions during sex occasionally
Sometimes, but not always, a bit of soreness & swollen/bruised feeling a day after sex. Beginning to avoid it.
Noticed another bump on inner labia (3rd one to date), which got increasingly larger, bothersome & itchy.
2008 November: UTI symptoms, seemingly triggered by sex, lasted 3 days with usual methods, called OB and began Cystex & Azo, along with Septra prescription I had from general practitioner.
Went in for culture day before Thanksgiving, and again the Monday following. Both cultures came back negative for Bacteria (Could this be because of the antibiotics & pyridium?) Symptoms still persist as of Jan 1 2009.
Dr. didn’t seem to think much of the bump or the “falling out” sensation. Said to keep taking Azo/cystex for the irritation, and if persists he’ll send me to a urologist. Said he’s not sure what could cause it; mentioned offhandedly it could be Interstitial Cystitis. His main concern seemed to be with the heavy periods; sent me for an ultrasound of my uterus, which apparently looked normal, and for an iron count in my blood, which was apparently good now. Nurse called with those results and mentioned an endometrial ablation. Wondering how that would affect my bladder?
Currently doing research and trying different non-prescription/non-invasive self-help methods.
What I’ve done so far:
Acid & Caffeine Reduction
Eliminated all coffee and tea (for years I’ve had a large latte daily, iced tea with every meal, and hot tea in the morning and at night)
Eliminated all juice (again for years I’ve had a glass of cranberry or cran-orange juice every morning)
Eliminated all soda pop, except the occasional ginger ale or root beer when nothing else is available (not hard, not a big soda drinker anyway)
Eliminated most tomatoes & tomato sauces (this is harder than it would seem)
Reduced chocolate down to a minimum (strongly crave this prior to periods, so very difficult to eliminate entirely, but trying)
Medication/Supplements
Began taking Prelief , Tums or Pepcid with most meals
Began taking Cysto Protek twice daily (started Dec 7th)
Take Azo/Uristat or Cystex once or twice a day (how long can I do this? And why are they considered only a short-term treatment?)
Take 2-3 Tylenol each morning and usually 2 before bed.
Rest/Relaxation
Trying to Rest more when I’m not feeling well
Briefed the Kids, Parents & In-Laws, so hopefully they won’t cause me extra stress
Trying to practice deep breathing and muscle loosening, but fear of incontinence makes it hard to loosen up
Sleeping with heating pad (of everything I’ve done – this is the most helpful overall – allows me to sleep all night)
Hot sitz baths with no bubbles or soaps (these are noticeably soothing too)
CuraHeat pads in the daytime (don’t really help)
Extra AstroGlide with sex, and much less sex than usual (down to 2x this month, “hit the wall” and afterward soreness both times)
Tried a muscle relaxant one night. Had an entire pain free day, even without medication, the next day! Not sure if I should try it again.
Not sure if any of it is working. Some days I forget to take any medicine and I’m fine; other days I’m miserable even all “drugged up”. Most days I moderately medicate and just try to make it through the day even though I don’t feel all that well.
To top it off, I’ve now got a cold and would so love to drink some orange juice, or some hot lemon tea. Very frustrating to avoid acids.
Continuing my research. Just began reading about Oxalates. That is discouraging because not much will be left to eat after eliminating acid, caffeine, preservatives and oxalates too (they seem to be in lots of natural foods I like that otherwise are considered healthy ie; broccoli, nuts, beans, spinach). Eliminating those would be far harder for me than the IC diet!
Family History:
Dad has Diabetes and Celiac disease
Mom has same urinary symptoms I do, not diagnosed
Sister has Seasonal Affective Disorder, takes Effexer
Niece has Celiac disease and Hypothyroidism
Daughter has Coarctation of the Aorta
Symptoms:
When I mention UTI/Yeast Symptoms I’m talking about irritation, itching, burning, urge, heaviness, extreme annoyance, but not really pain per se. I don’t have abdominal pain (except period cramps). What I have is an almost constant irritating burning feeling just inside the opening of my vaginal canal. It seems to radiate out from there, sometimes up the canal in a burning way that can almost be described as painful, though not cramp-like pain, more like fire. Or more often it radiates out on the exterior in a burning itching way that drives me nearly insane. It feels dry nearly all the time. Sometimes so dry and scratchy that walking is actually painful. Running, walking, some sitting positions, and riding in a car can be bothersome. Other sitting positions actually relieve it. Sometimes toilet paper or a seam in the underwear will bother it, other times not. Tampons & pads are always itchy and irritating; often I feel rubbed raw by them. However, I don’t feel pain constantly or upon touch. I also have an extreme heaviness in my abdomen. My bladder nearly always feels full, and often I’ll think I have to go but nothing or very little comes out. That feeling is not so much painful as annoying. I can usually ignore the feeling if I know I should not be full, so I don’t run to the bathroom as much now, but the feeling is constantly there bothering my anyway. Sometimes I wake at night thinking I need to go, but after going once, it’s difficult to ignore it long enough to get back to sleep. A heating pad helps tremendously with this; I sleep all night with it.
Questions:
What causes this???
Would eliminating heavy periods help?
I’m thinking so because tampons and pads are so irritating, PMS only adds cramps, heaviness, constipation and chocolate cravings, none of which help.
But would any potential benefits be outweighed by the ablation procedure itself? Might the performance of an ablation irritate the whole situation and make everything more sensitive? Might it make things worse?
Would this actually be classified as Interstitial Cystitis if I don’t have pain, but irritation instead?
What else might it be?
Pelvic Floor Dysfunction seems possible because of the “losing it” and “hitting the wall” feelings.
What sort of therapies or other helps are there for Pelvic floor problems?
Vulvar Vestibulitis? Seems possible too, given the set of symptoms and my lack of actual abdominal pain.
Why is Pyridium not for long-term use?
Would Urelle or Prosed DS help me then, since they seem similar in function to Pyridium?
What about Cystex? Long term okay? Other substitute?
What about this lidocaine gel or msn gel?
If one stays on a low acidic diet long-term, how does one get enough vitamin C and antioxidants?
If one is on a long-term low-oxalate diet, how does one get enough greens & fiber?
Is there a good GynoUrologist / UroGynecologist anywhere? And How do I find one? It seems most urologists are male and focus mainly on male issues: prostate problems, V-reversals, etc., and aren't necessarily all that sympathetic to women's issues.
Thank you so much for reading all this, if you got this far!
: ) melinda