A question regarding Interstitial Cystitis

[Carebear]

Dear Smart cookies,

I have often read postings about Interstitial Cystitis on this discussion board, but because I haven't experienced bladder symptoms myself, I have to admit that I didn't really relate.  Until now that is.

For the last two days I have experienced a nearly constant sense of urgency to urinate.  And when I urinate,  I have a harder time voiding with maybe only 15 to 30 ml output.  Today already, I have peed 30 times.  I have not increased the amount I drink either.  And I would call it discomfort not pain.

I will be calling my doctor tomorrow for an appointment however I likely will be waiting for two weeks to see her. 

I know you can't diagnose me but is there anything I can take over the counter until I see her to at least help me be able to get some sleep?   I recall ready about a supplement D-Mannose.  Is that right?

Maybe this is being caused by something else though.    Any help will be greatly appreciated.

[ohiolady]

Carebear, I've experienced this on a intermittent basis.  I took OTC AZO to calm my bladder.  This is only a short term remedy but it does help.  I am very grateful this hasn't become chronic.  I am sure others will come along to help.

Anna

[machenza]

Dear Carebear,

I am so sorry that you got IC like symptoms. I am not sure what your age is but let's hope that it is something other than IC. There are few other things it can be, so your next step will be to schedule an appointment and do complete urine with Micro, and may be some blood for hormones, and liver panel too.

As for what you can take  OTC, I would get the AZO bladder, and D-mannose  (3x 3 per day for 6 days and then only once a day) going ASAP regardless. Both will help in the event of underlying infection. Also decrease foods with potassium content to see if it helps. Although as Sjo?s we need potassium when you are in an IC flare, it helps to cut things like bananas off. The next things to remove are coffee and green/black tea.

There is a similar forum like this on for IC people, and they have links to supplements and advise, so I am attaching it for you:   http://www.ic-network.com/
When the bother is too big, in a pinch you can have 1/2 tsp of soda in a glass of water 2-3 times per day. You have to increase water intake if you do the soda and you cannot do it for more than couple of days at a time but it is a life saver in a pinch. 

Hope you get better soon
Nellie

[Jasper]

I would not wait 2 weeks to see a doctor about these symptoms.

Your symptoms may be from Interstitial Cystitis, but they sound suspiciously like symptoms of a bladder infection. If you have a bladder infection, it should be treated ASAP with antibiotics.

If you call your doctor's office and tell them that you think you have a bladder infection, they should be able to get you in to see the doctor today. If they cannot, then maybe you can be seen at Urgent Care.

As far as treating Interstitial Cystitis, I used Super Bio Curcumin (Turmeric) 400 mg, starting at 400 mg a day. This worked for me, although it took a few weeks to completely get rid of the symptoms (supra pubic pain, urgency, frequency). (I later increased the dose to 400 mg twice a day but that was for a different problem.)

[tiffferoni]

Sounds like you might have a bladder infection since the symptoms suddenly started.   Don't want 2 weeks to go to the doc.  Take some OTC medication for urgency, pain, and frequency.

[Carolina]

This study found D-Mannose as effective as antibiotics for UTIs.  I have taken it daily for over two years and in that time I have not had ONE UTI.  I have IC and had chronic UTIs.

http://www.ncbi.nlm.nih.gov/pubmed/23633128

D-mannose powder for prophylaxis of recurrent urinary tract infections in women: a randomized clinical trial.

In our study, D-mannose powder had significantly reduced the risk of recurrent UTI which was no different than in Nitrofurantoin group. More studies will be needed to validate the results of this study, but initial findings show that D-mannose may be useful for UTI prevention.

Hugs,  Elaine

[susanep]

I have a very bad bladder infection with blood in my urine, protein, and dehydration that has gone on for 3 months without completely clearing up. I can't take the cipro type drugs due to the side effects.

They have had me on nothing but amoxcillin which doesn't do much. Last week they gave me a rocephin shot only for it.

Fortunately I do have an appointment with a new urologist for a couple of weeks from now. I have to go back to regular clinic tomorrow and ask for another shot and meds if she will, to be able to make it to the urologist appointment.

I have been in such pain, and so weak. Last night I broke down crying with my husband trying to comfort me, because I was feeling so depressed with I guess being sick and even weaker from this.

I haven't been able to see my dad much since feeling so sick, and he lives close to me. I feel so guilty with him probably on borrowed time, but I have been in bed so much.

When I already have fatigue on a daily basis and then have this going on, it has been very difficult.

I have been drinking a lot of water, and plan to get a gallon size container of cranberry juice that was brought up to me, and it's at wal-mart.

I agree with the others that you should see someone. I have always had bladder and kidney infections since I was 15. I have probably had the autoimmune stuff since then too.

I hope you get the proper care.

susanep

[sassygal]

Carebear,

I would suggest getting the OTC AZO, which will help calm things down as far as discomfort and urgency to help keep you sane until you see the doctor.

Before assuming you have IC (which is NOT caused by infection and is diagnosed by hydrodistention of the bladder and a biopsy) or an infection (diagnosed by urine culture), I would not try to treat it as an infection. You need to see a doctor right away so you can have your urine tested. That will either rule in an infection to be treated, or rule it out.

If it is not an infection, the next step would be to see a urologist and investigate for IC.

I hope you can get in quickly, and they should put you in right away with your symptoms, and get whatever is going on treated and you get relief!

Sassygal

[SjoDry]

Carebear,

I am in the same boat. I counted my trips to the bathroom a couple of weeks ago, 26 times in 24 hours.  I am scheduled to have a cystoscopy on May 12th to check for Interstitial Cystitis.

But I have also been having horrible back pain, & random sharp pains in my pelvic area. I just asked my doc today for a test that might identify if I have kidney stones..but he said, "Let's wait & see what the biopsy shows".

He did just identify a bladder infection that I was treated with Cipro for. BTW, the Urologist gave me Vesicare for the frequent urination.

Good Luck.
SjoDry

[Carolina]

For me IC causes horrible back pain and random pelvic pain.

It is worse AFTER a UTI, when the UTI is gone the rebound pain is horrific.

Hugs,  Elaine

[Carebear]

Thank you friends for your information and support.  It has been a really overwhelming experience, these last few days.

The repeated sense of urgency to urinate finally stopped at 5 am Monday.  But I also developed a horrible full-blown migraine in the "still of the night" so I had been flat on my back until bedtime last night. 

I realized that I am most likely the cause of my bladder issue.  I have been consuming a lot of coffee lately to deal with the side effects of my anti-seizure meds.  And my ENT recommended I suck on these sour candies to stimulate saliva production, which I have been been doing obediently.  My diet lately has also been leaning on the acidic side too, and bananas are my favourite snack.

So I have altered these dietary decisions significantly.  When I able, I will be shopping for the recommended products to help further settle down my poor bladder.  Right now I am still experience the hangover phase of my migraine so you just don't want me driving.

And I will be seeing my doctor about this next week.  Because it has stopped for now at least, there is no need to rush in to see her.  I also have an EMG scheduled for next week, so we can discuss the results then.  Two birds...one stone.

Thank you all again.   You are truly a life line.