[urethritis]

my bladder is a nightmare too. I'm feelin' ya.

[suffering]

My bladder is a nightmare. I usually drink 2 litres of water per day. I don't think it helps. I'm sorry to hear your stomach is so painful.

[urethritis]

that's terrible, suffering. does drinking water help at all? sometimes I have to get out and do stuff to distract myself from it. right now my stomach is horrible. I have bad IBS and right now I have diarrhea and severe stomach cramps. my bladder was bad the last two nights too. I need to start my period and then maybe it won't be so bad. I'm feelin' for you.

[suffering]

My bladder is driving me Insane!!! I couldn't fall asleep for 2 hours today because it was so irritated and then I couldn't even sleep more than an hour because it was so irritated.

[urethritis]

so is mine. actually, last night wasn't all that bad but it's started up again this morning. hope you feel better.

[suffering]

HI Urethritis,

I don't think I did anything differently. My bladder is back to being a pain now

[urethritis]

that sucks, suffering. I'm sorry to hear that. maybe it got lost somewhere? I'll have to save up some cash to talk to the nurse. I'm sure it's worth it, though. did you do anything different for those two days that you can remember when your bladder wasn't so bad? I have to run but I'll ttyl.

[suffering]

I am frustrated. The lyme people called to say they didn't get my symptom/consent form. I swear I tripled checked it all when I sent it fedex but they didn't get the form so they can't give me the results. I need to get a copy of the form thru the mail cause i don't have a fax. ugh this will take a week I'm sure to get the results.

Here is her contact info. I copied this from the Lyme site here is the message about Ruth:

Long time Interstitial Cystitis patient advocate, researcher, and former IC patient, Ruth Kriz, has opened her private practice in Washington, DC. To make an appointment, please call 202-714-2415 or email her at ruthkriz@cox.net. As a Nurse Practitioner, trained in functional medicine, both traditional and alternative treatment modalities are utilized to identify causative agents and triggers, address contributing factors, and rebuild damaged tissues. Associated conditions of vulvadynia, irritable bowel, fibromyalgia, and chronic fatigue will also be treated. Her office is 1/2 block from the Woodley Park Metro station at 2604 Connecticut Ave, NW.

"I do phone consultations. 60-90 min - $150.00; 45-60 min - $105.00; 30-45 min - $75.00; and 15-30 min $45.00. For an initial consult, it usually takes 60-90 minutes since most IC histories are complex. I am happy to advise you concerning tests needed, nutritional supplements which are helpful for rebuilding the bladder wall, and medications if indicated. You can either email me or phone me about setting up a phone appointment if you want to go that route. Hope I can be of help to you."

Let me know how that appointment goes. Sorry to hear your bladder is so bad lately. Mine was a bit better for 2 days but it's back to urgency for me. I just came back from an appointment and was running to the washroom even though I'd been to the washroom less than an hour prior. This SUCKS. I am disappointed I won't have the Lyme test results this week. Even though I triple checke to make sure the form was there it could totally be my fault cause I am so tired I make so many mistakes these days. I could've sworn I SAW the form go in. I am anxious to get my results does it show?

Take care. Have fun at your family thing today.

[urethritis]

I will ask my uro to give me a broth. I re-scheduled my appt. for next week b/c I have family coming today. well, last night was a nightmare. I was up peeing all night and the burning is really bad. sure, give me her contact info. do you have an email for her? that would be great. thanks.

[suffering]

Urethritis, I hope I have Lyme disease too sort of! I have been reading about treatments for Lyme and it looks like a long frustrating process. But it would be such a relief to have a name for this.

Do you think you are going to do a broth culture? I still haven't gotten mine done yet I am going to do it early next weeks. I think you might find it helpful......or you could call this nurse I am working with, seriously she really might be able to help you she has helped a lot of people. Let me know if you want her contact info.

[urethritis]

suffering, I felt the EXACT same way at urologist appointments. I would be the only female and the only young person and the same thoughts would be running thru my head. and, yes, if the doc couldn't diagnose he was quick to rush me out of there.
Well, I hope you have Lyme disease suffering!! ha ha. that sounds so bad but I really do hope you get a diagnosis that is not IC. I think I have IC. I can't be sure but I don't know what else it would be. Well, off to drink water. take care.

[suffering]

I am not surprised my doctors haven't been able to put it together. I remember sitting in the waiting room at these urology appointments and I was always the only person there under 65 (and I was usually the only female). I always had the feeling I was in the wrong place. I just don't think most urologists have a damn clue about what to do with a young female like myself who has these symptoms. They are used to doing cystoscopy tests, handing out overactive bladder meds, working with cancer and older men with prostate problems. Not one of them mentioned Lyme disease or anything else that could be causing my symptoms (other than you know psychological factors). Once they couldn't figure it out instantly they were totally disinterested in my situation. They wanted to get back to their waiting rooms of old men with prostate problems. I am now much more realistic about what urology deals with/ who it is capable of helping. I should be hearing back about my lyme test soon enough so maybe that will give me some idea what I am dealing with.

I'm sorry to hear you had these symptoms even as a child! That must have been horrible. My urinary/sleep problems symptoms started in the winter of 2003 and lasted until some time that summer then just went away (thankfully!). Then I went through a period of severe stress in the fall of 2003 and the symptoms came back in early spring of 2004 and have been here ever since. Apparently Lyme disease symptoms can come and go (incl. urinary symptoms) so maybe that really is what I am dealing with. Lyme can also cause low potassium and I have that as well. It is weird too that your symptoms went away so long (or at least to a manageable level) then come back suddenly.

I hope your appointment goes well. Keep me posted, I will let you know what I find out about the Lyme test, should be any time now.

[urethritis]

I can't believe that the doctors can't put your symptoms together into a coherent diagnosis. I'm going back to the doc tomorrow. I briefly thought about cancelling the appt. but I'm going to go anyways. My symptoms are:
burning in my bladder all the time
severe allergies
burning in my stomach

I really don't have the frequency (thank god). I truly think that is the worst symptom to have. I had it as a child. In kindergarten I had to go every five to ten minutes. I had a special pass I could just leave class whenever. I felt like a freak and started resenting myself. I would punch myself in the bladder all the time b/c I was so sick of my problem. It really tore my family apart. I had bloody urine and severe burning all the time as a child. I missed months of school. And now it's back. I wish I knew what made it go away in the first place. Well, it never actally went away 100%. but it was manageable. I'll never forget my dad sitting me down as a child and asking me if I was making up my symptoms. Because no doctor could diagnose it. Blech, I hate docs too.

[suffering]

Hi Urethritis,
I haven't been to a doctor about that weird pain. I really don't have a local doctor I can talk to or trust. I did email that ob-gyn in NYC about it because he is one of the only doctors I trust.

Sorry to hear your stomach is bothering you. The only burning I've had that sounds somewhat similar to that was from the Doxycycline. That really did a number on my stomach and I had trouble sleeping because it was burning.

I can relate to the feeling that this bladder problem is chronic. I'm sorry you've been suffering for so long with it. I have had these symptoms for two years and it definitely feels chronic. I keep having to give myself pep talks otherwise I get really down about it. I honestly don't think either of our problems is necessarily chronic we just haven't found the answer yet. Most doctors give up too easily on difficult cases like ours and it's easy for them to give up because they aren't the ones suffering. They have the option of giving up and so I guess they assume that we have that option too. It never ceases to amaze me how doctors can just say "well you'll have to learn to live with it"....duh, if I could have learned to live with it I would be LIVING my life already. You really don't need to be a genius to go into medicine, that's what so many of my doctor's appointments have reminded me.

I think you are wise to go w/naturopathy. Bladder removal? What is this doctor talking about? That's ridiculous. BLAH! Enough doctor talk. I really am sick of them.

My list of symptoms:

-frequency (upwards of 30 times/day).
-urgency
-incontinence (mild)
-low cortisol
-borderline low thyroid
-low potassium
-low iron
-low vitamin C (why all these low vitamins when I take more vitamins than anyone I know who knows??)
-Nocturia (wake up to pee at least 6-8 times every night sometimes much more)
-debilitating fatigue
-unrefreshing sleep (did a sleep lab that found I have 17 partial awakenings every hour).
-VERY slow to heal cuts


Those are all the symptoms I can think of right now... I'm sure I missed something.

What are your symptoms?

Take care and don't lose hope please!

[suffering]

I typed out a reply to you but it got lost...grrrr... I will respond fully later when I am not so wiped (It's been a bad day!). I can't believe your doctor suggested bladder removal!!! That is so extreme. Will post more later.

[urethritis]

that's crazy, suffering. have you seen a doc yet for that? that sounds serious. will you run down a list of your symptoms for me? My stomach has been burning a lot lately. From the very pit of my stomach thru my bowels. it's like a deep aching burning sensation. It lasts for hours and it's very painful. I don't know if I have an ulcer or what's going on. anyway, last night was horrible. I was up all night peeing and then the burning was horrendous. I just don't know anymore. This month is the sixth month that I've had this and I don't see an end in sight. I can't believe one little infection did this to me. I'm going back to the same hack, I mean urologist, that I saw last time. I'm sure he has no news for me. My doc was even talking about removing my bladder!!! What? Can't we try something else first? I refuse to try anything like Elmiron or other chemicals. I want to go natural. I'm going to make an appt. w/ a naturopath soon. anyway, I'm trying to have a life despite my problems but it's hard. I'll ttyl and keep telling yourself that and I will too.

[suffering]

hi urethritis,

don't give up! no, i haven't been tested for lyme yet. I'm going in a few minutes to get tested and then have to go to FedEx to get it shipped.

I am kind of feeling the same way as you just hoping it will go away on its own. I can't give up because it's ruined my life and I hope you don't give up either.

Yesterday I had the freakiest pain. It was sort of like menstrual cramps, came on suddenly and the pain radiated down my inner thighs and I was also shivery. The pain only lasted five minutes then I started passing these big blood clots (was that too much information? ha). What the hell is going on with my body? My period isn't due for over 10 days. I am so worried. I feel like it's all related but so far don't have any answers.

Don't give up! You can still get better (This is the pep talk I am giving myself every hour right now.) I just keep telling myself, "I'm going to get better, I'm going to get better."

It's pretty bad these days as I'm sure you can tell. What a frigging nightmare.

[urethritis]

wow. I'm still in pretty bad pain. the calcium makes it better for a little while but it soon returns. I think I'm going to give up the fight and let it go away on it's own one day. have you tested for lyme yet?

[suffering]

I have been keeping track of how many times I pee per day. Yesterday it was 17 times during the day and I got up 6 times at night to pee. Blah!

[suffering]

hi urethritis, I hope it wasn't a fluke either! Let me know how it goes when you try it again.

I'll keep you posted on the Lyme test