Discussion in 'Fibromyalgia Main Forum' started by hereiam, Jul 13, 2008.
I would like to know how your doctor diagnosed your Interstitial Cystitis?
Thanks for the reply. Can you tell me how long the recovery period is for a cystoscopy?
Mine was doen in the doctors office. They tell you that the procedure isn't painful and it probably isn't IF YOU DON"T HAVE the disease. I almost passed out from the pain. I had it done first thing in the mrning and was planning to go back to work but went home and rested. I returned to work the next day.
Thanks for the information. I think that I may have IC. My doctors keep giving me antibiotics even though my urine is clear of bacteria. The pain is really intense and these pain episodes are becoming more frequent. The docs also keep referring me back to my gyno who can't find anything wrong with my reproductive tract.
I am in the same boat
Have symptoms, no bacteria, although 2x these year I did test positive for bacteri (e-coli)
Don't want to go through all the testing at a urologist
My IC improved dramatically after my hysterectomy. After 4 c-sections I had a tremendous amount of scar tissue to my bladder (gyno/ob put her finger through it when I had my last child). The relief was short lived however and within a year all my sypmptoms returned. I have to watch what I eat. Acidic foods, caffeine and chocolate irritate the bladder. Cranberry juice is the worse thing I can drink. I used to drink it all the time thinking it would help me but the doc said to stop. Right now I'm not taking any medications for it except pain pills when it gets real bad. (Aleve makes it worse) I take vicodin every day so maybe that helps.
I still get infections but it's hard to tell the difference sometimes.
One other thing, a lot of FM patients have trouble with dry eyes, not enough saliva etc, sometimes that equals to not enough lubrication down south which can be very painful and irritate the uretha. You may want to say something to your gyno.
I was diagnosed with the potassium test. The doctor injects potassium into your bladder thru a cathadar. If you have IC you the potassium will cause pain, if not, you won't have any pain. It is a much simplier and less invasive test. The best part was what she called a rescue solution. She injected that into my bladder after the potassium and it took away the pain for several days. If your IC is really bad the doctor can do several instillments of the rescue solution over a period of time and it is supposed to really help.
My doctor never offered me that treatment. I was pretty much left on my own to figure out how to treat it thus I haven't been to a urologist in a few years. I just go to my family doctor.I GET SO TIRED OF GOING TO DIFFERENT DOCTORS!!!!!!
A trip to Urgent care got me an anti biotic but then the culture was negative for infection. Tried pyridium as a bladder soother and Ditropan for the spasms.
Problems continued and I was sent to a GYN with a specialty in URO. He put me through every possible test in his office , taking several appointments. I found none painful, also had a CT scan.
He said I needed surgery for cystocele and rectocele. I told him at that time my husband was not sure of his retirement plan and could I wait a couple months. ok
Couple months later I saw him again and he repeated that I needed surgery. At that time my husband had just been diagnosed with renal cancer and obviously his needs came first.
The third time I saw him I was prepared to schedule surgery, although I had not had a bladder urgency issue in about 9 months at that time. He CHANGED his mind. He obviously did either some research, or had another patient or perhaps a family member with fms.
He told me surgery would not help the bladder urgency issue, that was caused by fms and he did not recommend surgery!!!!! Glad I didn't run to have it the first time. He said the bladder was a muscle that reacted to the disease and when it flared to medicate with Ditropan and Pyridium.
Several weeks ago : pow, urgency back, where you feel you need to urinate every couple minutes and maybe a drop or two is passed. I put myself back on the pyridium (colors urine very orange). I noticed on the bottle he had written TEN refills, so obviously he expected me to deal with this on a regular basis.
Three weeks of orange pee, would get better as the day wore on. But the following day back to square one.
duhhhhhhhhhhhhh I had forgotten that in previous years allergy medication would CAUSE the bladder spasms. I had been in Singulair for about 6 weeks. My hay fever season was about over and I stopped taking it. Within two days of ceasing the allergy med the bladder was better.
I have another fms friend who has the same problem: allergy med= bladder spasms.
sorry my story got long, but if even one person sees similarities maybe it would help.
I got diagnosed with I/C FINALLY after about 6 "phantom" bladder infections, which my doctors thought were real, which made perfect sense at the time. I had taken several rounds of heavy-duty antibiotics that just made me more sick and not well. The icing on the cake that helped diagnose I/C was having a cystoscopy that came up normal (which rules out other bladder disorders).
I've done a lot of research on I/C and have read that it's unfortunately very hard to diagnose. Bladder infections/UTIs and I/C often mimic each other, making it touch for urologists to diagnose patients effectively. One's urine can look cloudy and have some degree of unhealthy bacteria in it, even when we DON'T have a bladder infection. Plus, we can have very intense pain and still not have a bladder infection. Confused yet? So are our doctors.
Often a change in diet can help reduce your bladder pain significantly. Certain foods can irritate the bladder and by staying away from them, it gives the bladder a chance to "calm down" for lack of a better word. It's annoying to change your diet, and I really didn't like doing it, but my bladder pain has improved for the most part (once in awhile I get some pain, but not as often). Please see ichelp.org for more information. There is a section on diet that you may find helpful. It will look very overwhelming at first, but I realized that I did not have to eliminate all of the foods on the list.
Basically, too much vitamin C and foods with too much acidity can cause raging bladder pain (and other symptoms like frequent urination). However, one's individual tolerance to different foods will vary quite a bit. I would suggest seeing if certain foods contribute to your bladder pain and other I/C symptoms. For me, I can't have tomato sauce (too bad since I love it) or vitamin C supplements or I will have the most intense bladder pain imaginable. Other foods with vitamin C I can only eat in moderation. The ichelp.org website also has other sections besides the diet one that gives great info.
Hope this helps and that you find some relief soon.
[This Message was Edited on 07/15/2008]
I also had the potassium test while cathatarised (sp?) The installations are very helpful. Even at my worst (severe pain) I only needed 4 installations and then started taking the Elmiron pills. Usually the pills would take a month to work unless you have the installations. I always know when I start forgetting my afternoon pill because I start getting up again about 3 times a night. There is also foods to avoid but I find as long as I take the Elmiron I do fine. but it is a potassium intolerance. I know my gyn. said no more than 1/2 a banana. I don't think chocolates are allowed and most deli meat. Only Dannon All Natural yogurt, plain or vanilla was suggested. Like I said I don't follow food guide lines and do fine. Your gyn. should be able to rx and hopefully knows about elmiron. Good Luck, Peace
Thanks for all the information, you are really helping me out. My gyne seems to be clueless about this problem so I just made an appointment with a urologist. Unfortunately, I can't get in till the end of the month. I will try eliminating acid foods till then- not easy since they are my favorite foods! I just bought aloe vera juice too.
I have had IC for the last 6 years. One of the diagnostics used on me was the hydrodistention with cystoscopy under general sedation in the hospital (out-patient).. I have now had this procedure 4 times as it is also used by some doc as a treatment for IC.. It works for some and not for others! Anyway, recovery time gets longer with each procedure.. First one, 1 week... Last one, a MONTH!! IC is a HORRENDOUS disease and not one well recognized or respected by the medical community (JUST LIKE FIBRO!).. It is difficult (at least here) to find docs that have ANY knowledge of what it is and especially how to treat it! Many, if not most, require some type of pain management in the form of meds which is very hard to come by! As mentioned already, IC is basically a disease of exclusion as well as symptoms. You really CAN diagnose this yourself!! Problem is..treating it yourself!! Best of Luck to you and PM me if you would like to know more!!
BTW.... Forgot to mention this.. DONT do the potassium test! It is a painful and unnecessary test!!!
I was rx with potassium test. It wasn't very bad and she (my gyne)gave me an immediate installation after that.
Then she prescribed Elmiron which she says is the only treatment for IC. I take 100mgs. 3 x a day, and every pill is needed or I start having symptoms. Hope some of you can get on this treatment, I know how horrendous the pain is. If I have a flare because I started missing doses I need to go in for an installation. Hope this helps someone. Take Care All, Peace
I had a cystoscopy to see if I have the tears in the bladder liing. I was under for the whole precedure. Plus I had a gyno at the same time look for endometriosis, since the symptoms can be the same.
I'm very glad that you have scheduled an appt with a urologist. Even though it sounds like you might have I/C, it's very important that your urologist rules out other possible urological illnesses and conditions.
Sure, a cystoscopy is no picnic, but it's not that bad. At least it wasn't for me. I've had two of them done before. I think I rested a few hours after it was over, but I'm more sensitive than most people I know. It's a relief knowing that I didn't have other urological things going on. It's just really best not to self diagnose.
If you do get diagnosed with I/C, your doctor can discuss treatment options that are best for you. Like fibromyalgia, everyone's degree of I/C varies. That's why some people are doing treatment options that seem more extreme than others or why some people take Aloe Vera juice and for others AV juice does nothing. It's all trial and error.
IMHO, I wouldn't discard the urologist just yet before you give him/her a chance to give you vital info. Everyone has different experiences with docs too.
Best of luck and keeps us posted.
[This Message was Edited on 07/21/2008]
just looking at all the IC posts for info.
I posted before about having all the symptoms of IC,... including the most worrisome to me, microscopic blood in my urine.
I have every darn symptom except I usually only pee during the night 2 times. But all day its almost constant.
Could I still have IC?
I'm still waiting to get in to a urologist. currently my gyno is treating me.(constant UTI without bacteria)
I may ask on the IC network site. They seems extremely knowlegable in this bladder pain/IC.
as I may not find my answer here.
Your symptoms sound identical to mine. It will be interesting to see if we are both diagnosed with IC. I will post what I learned after my visit to a Urologist.
I hope we can all find relief from this dreadful problem.
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