UTI and IC flare

[Krisi]

The past month I have had 2 UTI's and I know how you feel. I am tired of the pain and tired of going to the doctors office. Yesterday, I had to practially beg them to let me come in and leave a sample to get sent away to be cultured. They seem to give me problems when I call if they can't fit me in they make me wait until they can let me see a doctor when I know generally if I have a UTI or what. The time before this they had me wait until monday to see the doctor, and I had a kidney infection. Then they gave me a antibiotic I was allergic too, that the bacteria also happened to be resistant too. To an extent I think I should maybe find another doctor, I don't know though. I just know I am in soo much pain I am in tears all the time and I have to wait for the culture and sensitivity test to come back. The past couple of nights have been so hard to sleep because if I pee I hurt for hours afterwards. I am taking pyridium plus (generic) and drinking a ton of water, it helps a little bit. I am also taking tylenol extra strength for the pain. I just hope it gets better.

[jen74]

Hi krisi,
I am sorry you are in so much pain. I hope you get the results of the culture and treatment so you can finally feel better soon. Just be sure you are drinking alot of water.
Jen

[leelee88]

If would strongly suggest you get another doctor, If they are ignoring you and you have a kidney infection thats nothing to play around with..Hope you feel better soon.. But please see if you can find another URO who will treat you with respect you deserve...

Ronda

[Krisi]

The uro and the NP are fine it is the office. They won't even ask them for me to come in. Anyway, I called a pelvic pain specialist in the area that is supposed to deal with IC too. He is a gyno so I am kinda scared that they might not know the whole deal. I always wondered if they should have biopsied my bladder too. Because I wasn't really diagnosed the proper way with cysto w/ hydro. My uro did a cysto for like 30 secs and saw something wasn't right. He just blurted out part of the lining on your bladder is missing. After they gave me low dose antibiotics for months and it still wasn't helping they put me on elmiron and said you have IC but we aren't going to do those other test because I don't want to put you in pain. I saw later from the NP that they initially wrote trigonitis on my chart. I also had and still have hematuria some of the time. Anyway what kinda concerns me is this paper that was published. http://www.emedicine.com/med/topic2343.htm
It makes me wonder if they should have biopsied or what. Though it really doesn't look like it matters I guess. All I know is I am in alot of pain atm. It hurts to sit and it hurts to stand and I have to stay here till work is over. luckily I am close to the bathroom but I feel like it is still too far to walk in this pain.

[jen74]

Hi Krisi.
I was also diagnosed by a regular cystocsopy. The urogyne who did my cystoscopy took pictures of my bladder, but he did not take a biopsy. He said there was no reason to take a biopsy. He said they can tell the difference between something that is just bad inflammation and something that may be more serious( i.e. cancer)
I know what you mean about being in pain. I also get the UTI's alot since getting IC, it sucks because I cannot take antibitotics because they mess my stomach and digestive tract up soooo bad, that is why I am so scared about getting these UTI's. I took a couple macrodantin three weeks ago for a UTI that was coming on, and it stopped up my bowels and stomach, I was sooooo constipated. It took me a couple weeks to feel better and still I am not right. That was only after taking 2 macrodantin.
Anyhow, Just know you are not alone, and I do feel for you and hope you get some relief soon.
Jen

[Krisi]

Thanks Jen. I just called the uro to see if my results are back and they weren't. So no antibiotics. I hope there is one I can take cause I am allergic to the quiniones (Cipro, Levaquin). The lady on the phone was like I hope there is one that will work that isn't either of those. I told her I hope so too. I developed an allergy and refuse to take either of them, unless they want my throat to swell and me to die . My throat gets sore within like 10-20 mins of taking one and it seems to continue to get worse. Plus the last time I took Cipro it made me feel worse than having the flu.

I am just taking tylenol extra strength and pyridium plus and elmiron atm. I had to walk out to my car to get a book and someone noticed I wasn't walking very well cause I am in pain. I am trying to walk normal I just can't Anyway, they told my dad which works on a different floor I can't believe it is that obvious. I think I am just gonna try to sit/lay in my chair and relax for the rest of the day.

[jen74]

Oh Krisi, I am sorry you are feeling so rotten. I am like you, I became allergic to alot of meds lately. I use to always be able to take pennicillin, but just this year I became allergic. I also just became allergic to erythromycin, and I use to take this one before as well with no problems. I even got an allergic reaction to miralax (a stool softner and laxative). I had hives. My pharmacist said that I must be VERY sensitive to meds and chemicals as she has never seen anyone be allergic to miralax.
This is scary. I mean all these meds, I use to take with no problems, but now all of a sudden I am becoming allergic to everything it seems. What do they do in a case like this when someone is allergic to alot of drugs? I wonder if they could treat you with the antibiotic plus a steroid or benadryl or something to counteract the allergic reaction. I pray you get to feeling better soon. When did you drop off the culture? How long till they get the results?
Jen

[jen74]

Oh Krisi,
I forgot to ask you, have you tried the antibiotic fosfomycin? I have a pill book and it says this antibiotic is used only to treat UTI's. It says that this drug may work where others have failed. It prevents bacteria from adhering to the bladder. That is what is says in my drug book. I have never taken this one before, but just read about it and will ask my urogyne next time I have a UTI since alot of the anti-B's I cannot take. Just thought I would mention it.
Jen

[Krisi]

Jen I haven't taken fosfomycin before. Also, I left the sample on tuesday. They had to mail it to a lab overnight, and it takes 48 hours for the culture. I am not sure how long it takes for the sensitivity test I assume it is quick though. There are lots of broad spectrum antibiotics they can use also. Also the bacteria are becoming resistant to so many drugs. But like you I am afraid if I take it I will become allergic to it eventually, and then might not have any options. I also don't understand where these allergies are coming from. I used to not have any and not it is like they come out of no where.

I was on a trip to Hawaii for work and I developed a skin rash on my head and chest and the doctors there had no clue. They gave me prednisone and cotrizone and told me to be on my way. Two weeks later I come back with the same problem, then they give me prednisone and an allergy shot. I went home after that so I don't know if it would have come back if I was still there.

Oh I forgot to tell you. My dad was sweet and bought me a heating pad so that is helping with the pain

[Natalie41]

Krisi, You and I are are in the same boat right now. I battling my 2nd Uti in the past couple of months also. My current infection has been around for about 2 weeks. Somtimes you just have to keep trying different antibiotics until you find one that works. I am going to the my urologist tomorrow to see if I can get mine changed. I've been taking levaquin and doesn't seem to be working too well. I hope your infection goes away soon. Btw are you drinking plenty of water? ( I mean more water than usual). That helps me most of the time. Of course it means more trips to the bathroom. Darn these bladders.

Take It Easy

[Krisi]

mean urologist office

I have been drinking tons of water, more than 2 liters a day.

I am in soo much pain and the urologist won't give me anything. I have cried all morning and on the phone with them.... They said they won't give it for that "UTI". I told them I have IC and so it is only worse than a normal UTI. The lady on the phone said that well your elmiron should help with that. I am not even for sure if elmiron really works. She told me if I am in that much pain i should go to the ER.... and what wait 4 hours to be seen or for any pain meds. I know if they would have asked the doctor or the NP that I would maybe have gotten something. Anyway I am done with them. I am picking up my medical records on Monday or Tuesday and am never going back. I don't deserve to be treated like that. I just hope this new doctor is better. I am soo tired of being treated so bad.

[jen74]

Hi Krisi.
Speaking of UTI's, I feel like I may be coming down with one as well. I did my bladder instill on Wednesday and started feeling bad Thursday. This sucks! I always get sick on the weekends when no doctors are around. I hope my doc is in today, I may have to give him a call.
That was nice of your dad to buy you a heating pad
The heating pad is my best friend when I am not doing good. I am getting so frustrated with these UTI's though. I dont have a clue what is causing them. I am SOOOO clean. It is weird that I usually get them right after I get over my period though. Maybe hormones are related to this.
I hope you are feeling somewhat better or at least you got the results of the culture back by now. I think they should have treated you if you are feeling this bad though. Alot of doctors will just treat you.
I am worried sick if I have a UTI, I have no clue what to take as far as antibiotics go. The last macrodantin I took messed my stomach up but good. The digestive motility issues I have make it real hard for me to take anti-B's, not to mention I seem to be allergic to everything
Let me know what you culture says. I hope you get to feeling better real soon. Big Hugs!!
Jen

[Krisi]

Jen,

They said they ,ight not get the culture back. This is silly and it makes me mad. I understand how long it takes, but what really is making me mad is they said, "This office won't give pain meds for IC." I was like are you kidding me? It is a chronic severe pain problem. They said well we can give you a referal to you pain specialist. I said, "No thanks, I have BlueCross I don't need your referal."

Mind you I have been in tears on the phone with them all day. My ARNP is out because of a death in the family and my uro is also out.

I am not going back there ever again, for an appt. I am only going on Tuesday to pick up my medical records and pay the 5 dollars I owe them for some stupid lab... which is probably 10 now.

I am going to a place that is supposed to treat that and like 6 other problems at a pelvic pain center. He is a gyno and not a uro but I would rather have someone that is going to look out for my wellbeing as a whole and not just when I am not in pain. I hope they are nice there I got on Thursday.

Currently I am taking 3 Elmirons a day, Pyridium Plus, and lots of water and lots of tylenol and a heating pad on high constantly. I have probably burned my stomach legs etc.

[jen74]

Oh Krisi, I know how aggravating some of these doctors can be. If you dropped that culture off on Tuesday, they should have it by this afternoon. If not, I would call their office and tell them to call the lab and have them fax them the results. It could be just the lab tech that is not doing their job.
A culture only takes 48 to 72 hours to be complete. If you are really desperate and in pain, is there a urgent care place you can go to? They will prescribe some antibitoics for you. Most doctors do not like to give pain meds out for some reason, I think more to cover their a** more than anything. They do not want to be responsible and some are to lazy to fill out the paper work.
I wish I could take some pain meds, but they all make me feel soooo sick and I have to many side effects from them. Maybe you should look into seeing a pain specialist as they deal more with pain meds and maybe will be able to help you better than this doctor. I dont know why the doc just did not call you in an antibitoic so you could at least start it if there happens to be an infection brewing. UTI's are awful on IC if they are left go to long a time. I know!!
Krisi, I would call them and ask them to call the lab and get the results. If not, ask them to prescribe you an antibitoic over the phone and tell them you do not want to be in pain all weekend, and you dont have the money to run to the ER when you already left them a urine sample! I do feel feel your frustration hon. I hope you feel better soon. I think I am also coming down with a UTI. I just left a sample at my docs office. Ughhhh I hate this disease.
Jen

[Krisi]

They are going to call in something if the office doesn't get the sensitivity test back. I know what you mean about pain medicine and getting sick. That is why I never ask for it. But it is just getting really bad. I know if they give it to me I will have to have phenegran which makes me not get sick. I am seeing a Pelvic Pain Specialist on Thursday.. well at least the WRNP.

Oh btw I have only ever asked for something for the pain twice and one was because I was out of town and working and in really bad pain.. kinda like today or this week... but this week has been worse. My IC alone can hurt really bad and the UTI just isn't helping the situation out. I wish there were more doctors or more specialists in the area. Sometimes I wish I lived where there were some really good doctors that would help with the problems. Anyway, this is the place I am going to try I hope they are good.
http://www.pelvicpainkentucky.com

Jen I hope your UTI gets better too! I wish this would just all go away and none of us would have any of the problems we do, but that isn't reality.

OOOHHHHH I just got a script.. the same stuff I had last time(Macrobid). I wonder if it was cause they didn't give me enough the time before.

Krisi