View Full Version : Help,Tons of blood in my urine

01-19-2011, 03:22 PM
Every time I see my Uro I tell him about blood in my urine and every time he says (well im not concerned about that-that's normal with IC) The past few days ive been seeing more and more blood when I urinate and more and more stomach pain finally today before getting in the shower I saw so much blood and clots I freaked. I know its not my period because Ive already had one this month and it feels nothing like a period. What should I do when my Uro isnt listening and cant do a hydro/cysto until the middle of February. Is it really normal to have this much blood in our urine because I cant find any connection on this site about blood and IC.

01-19-2011, 03:46 PM
Are you absolutely certain the blood is coming from your urethra? One way to be certain is to insert a tampon. When you remove it if there is blood you will know for sure that is coming from the vagina and not the urethra.
Hope you get some answers soon.

01-19-2011, 04:04 PM
Yes I am absolutely sure only when I urinate blood comes out I even put a tampon in to see if the blood would catch and it didn't. I know its not my period because I started on the 6th I have no idea where this blood is coming from only thing I can think of is from my bladder.:confused:

01-19-2011, 04:10 PM
Is your mother aware of this? I hope she is taking an active role in your medical care. IC is a tough condition to manage at any age so it is probably best if your mother has input with your doctor regarding what is going on and anything your doctor is telling you regarding your medical conditions and treatment. Have your parents visited this board?

01-19-2011, 04:16 PM
My parents are divorced I live with my Mom and visit my Dad, but he doesn't know about my IC. As for my Mom we have no relationship I respect her but we are like oil and water-I do tell her somethings but she really doesn't take me seriously so I deal with all my health problems on my own. When I tell her how I feel its like she blows me off and she thinks its all in my head kind of like my Uro.

01-19-2011, 04:30 PM
I'm sorry to hear that. My parents got divorced too when I was young.

I think it is really important for you to get some in person adult input on your medical care, especially given that you are questioning the care you are getting from this doctor. Absolutely the best person would be your mother or your father or maybe there is a another adult female family member who can accompany you to your next appointment.

Visible urine in blood is not an extremely common IC symptom. It is more often a sign of infection. You need to be tested for a UTI asap.

Hope you get this resolved soon.

01-19-2011, 04:59 PM
Hi, I just wanted to chime in and say that I do have lots of blood in my urine at times. Some of my medications do this and I tried to take Prosed DS and I was peeing mostly blood. Your uro should suggest a cysto just to rule out cancer, although this would be rare in someone so young.

I am sorry you have no family support. My mother is the exact same way - she thinks this is more in my head and it can't be that bad. But, I am not 17 either. Do you have SOMEONE a grandparent or aunt or anyone who can help you and you could confide in? You really need someone to take you seriously. I have found with my 18 year old daughter that adults (like doctors) don't take her symptoms as serious unless I or my husband go in and advocate for her. You need an advocate.

I am soo sorry this is happening to you. You are very strong to have been doing this alone. Feel free to PM me anytime.

01-19-2011, 05:33 PM
My stomach is killing me and the blood is coming out in what looks like clumps when I urinate. It doesn't feel very much like a UTI which is weird because I usually always feel like I have one the stomach pain and nausea is the worst- I know its not another kidney stone because that pain was all in my side and I was actually throwing up it feels like im going crazy:headbang:

01-19-2011, 07:41 PM
It really sounds like you need a doctor to help you.
If your urologist won't help, then maybe your primary care doctor can get things rolling.
And even though you & your mom don't see eye to eye on this, clumps of blood is a very specific symptom and you probably need her to speak up for you.
Please call your doctor or doctors in the morning!

01-19-2011, 07:58 PM
Thank you I will call my Uro in the morning im still waiting for a call back from my primary doctor I called her office and left about 5-6 messages with the nurses about a test for whooping cough. Why do doctors have to be so complicated:bonk::bonk:

01-19-2011, 08:51 PM
You also have a cough too? It sounds like you may need to go into ER just to get someone to pay attention to all of these things. Blood, vomitting, cough. My daughter had and appendicitis in Aug and had emergency surgery, you may have several things going on at once. Do you have a fever? I would still tell your mom and get someone to take you to ER. They can have another urologist look at you there. This is what they did for me.

01-20-2011, 02:49 AM
I absolutely agree that you need medical attention as soon as possible. If that means ER, then that's my suggestion. It does sound like it could be infection --- and an infection can worsen very rapidly.


01-20-2011, 12:21 PM
The last time I went to the ER it wasnt this much blood but the only thing they did for me was give me a shot for pain and told me to see my Uro and when I got the appointment to see my Uro he said he wasnt concerned.

01-20-2011, 12:36 PM
If that's the case, then you need another urologist.

My mother passed large clots of blood in her urine and fortunately, the urologist didn't just write it off as IC & he ran more tests. Turned out she had lots of sharp edged kidney stones that were in her bladder and ureters. They were translucent & didn't show up on the traditional tests. Once the doctor removed the stones, she has been nearly pain-free and has even been able to get back to a more "normal" diet. She still has mild bladder symptoms from time to time, but nothing like before!!! Finding out what was causing the bleeding actually gave her a good quality of life again because it was treatable. I'd hate to see you not get treatment for something that can be treated or cured and possibly end up sicker by delaying care.

Please keep in mind that this website is a support website with patients responding to other patients and making suggestions only about what to ask your doctors about. This site isn't medical advice and shouldn't be a substitute for getting proper medical care.

Again, it really sounds like you need to see a doctor in person about this.

01-20-2011, 04:49 PM
I agree, you should go to the ER or urgent care ASAP! Tell them you want tested for a UTI and whooping cough. Sometimes you just have to come out and tell them what you want...even if you're wrong about what you think you have it should still help point them in the right direction. And I agree with other posters...if you can get an older relative you trust to go with you it'd be a good idea. I'm 27 and I still have my mom or grandmother go with me to the doctor sometimes because I have trouble being taken seriously. Before I was diagnosed with IC (I was 24 then) I kept being told "it'll go away" and "drink more cranberry juice." No one seemed to believe me that I had a real problem.

I can't believe your uro would ignore blood in your urine. I have microscopic blood in my urine all the time (I can never see it) and my uro/gyn sends it for cultures all the time just to make sure even though its always just from IC. But that's just microscopic blood. IC usually doesn't cause visible blood in the urine, especially not large clots. I also can't believe your primary doctor's office would just ignore your messages if you thought you had whooping cough...this can be serious stuff! It really sounds like you need two new doctors...that's just not right.

01-20-2011, 06:14 PM
Ive really been out of it all day :confused: because I couldnt sleep through the pain last night and Ive been on-off sleeping through out the day. I called though and got an appointment with my Uro for early tomorrow morning I also called my primary doctor and left 2 more messages. If my Uro doesn't do anything or suggest anything tomorrow I think im going to flip out on him

01-20-2011, 06:33 PM
I too certainly hope you get some answers --- soon. The last time I had blood like that in my urine (and I remember telling my doc that it was pretty much all blood, didn't even resemble urine), I had a whopper of an infection - and I didn't have my usual symptoms! I hope you can get some rest tonight, I know how hard it is when you are in pain and feeling miserable... Keep us posted on what you find out!


01-21-2011, 05:40 AM
I agree with all these ladies. Kadi is right - if your uro will not take you seriously you need to find another uro. Do you have some AZO strips on hand to check for infection. Those may be good to keep around. I really hope your apt. goes well today and you get some answers. Please let us know. I hope you feel better soon.

01-21-2011, 10:09 AM
Im finally home from my appointment my Urologist was super busy. He didnt ask for a urine sample but the restroom has cups so I went ahead and used one the nurses kept asking if I was on my period and I kept saying no even the doctor asked by the time I left Im pretty sure the whole office knew I wasnt on my period. I had so much blood in my urine it looked like I was peeing just straight blood I had an appointment scheduled for the 2nd and a cysto/hydro on the 4th.

He gave me some type of anti biotic I asked for something for pain and he was insisting I take vicodin I kept telling him Vicodin doesnt work for me and he said(I just dont understand how can it not work for you?? In an angry voice) I told him well unless you want me to take a whole bunch of them I dont want vicodin either way I came home with a prescription for Vicodin an anti biotic and Zofran for nausea. Now I have to wait for a pre-authorization to get some type of kidney test with dye cat scan thing??:confused: Hes not the best at explaining and I still have to wait for a Pre authorization for the hydro/cysto:headbang:

01-21-2011, 11:57 AM
I'm so glad you're getting medical attention. I have been very concerned about you.


01-21-2011, 02:01 PM
That much blood in your urine is possibly endometriosis of the bladder. its rare but thats a classic sign. A gynecologist can diagnose that through a laproscopic procedure. Some IC'ers have microscopic blood time to time in there urine but rarely visible.

01-21-2011, 03:09 PM
I'm so glad you went to the doctor! I hope this is the beginning of feeling well again for you. Hang in there. The tests aren't easy, but they're worth it to find out what's causing the bleeding. And my mom's case has given me a lot of hope for these kind of situations. I hope that your doctor can find out what is happening & can help!

01-21-2011, 03:38 PM
I'm glad your uro is doing something!

When I had the UTI that started my IC symptoms I was just peeing blood too. Not bloody pee, just basically peeing blood like you said. So an infection, plus IC could cause that much blood (it stopped with the antibiotics for me). Our bladders are already damaged, so adding an infection could definitely make us bleed more than the usual person with a UTI.

01-21-2011, 04:33 PM
Hi, I am soo glad you got into the uro. Is he going to do a culture to let you know if you are on the proper antibiotic for that strain of infection? Also, Vicodin didn't work for me either after even a few days. Could he possibly up the strenght for you - I think the bottom of your post says pain reliever 500 mg. I had to take 750 to start touching the pain. Maybe he could up your dose until you get over this hurdle. Glad you got some help. You did a great job!!! Keep questioning and standing up for yourself. You have the right to receive good medical care.

01-21-2011, 08:18 PM
Im not sure if he ran it at all they didnt even want to open the cup with my sample in it. He just told the nurse to (send it out) the anti biotic is Cipro and is killing my stomach :toilet:

01-21-2011, 08:37 PM
Oh, if he is sending it out, it sounds like he is going to culture it. You should call the office in a few days to see what antibiotic gets rid of your strain. Cipro is a broad spectrum antibiotic that usually covers it all. That one make me really sick too. Did you take the Zofran. One person gave me good advice about stomach upset. She said to take the Zofran a little while before the medication. This helped so much rather than waiting to try to stop the nausea after I took the medication. Are you still peeing lots of blood? How is your cough?

01-21-2011, 08:44 PM
My urologist didnt even care about my coughing and flu like symptoms. I practically begged for a prescription for the dissolving tablets of zofran and he refused(They work way better for me than the regular pills) Im still bleeding a lot and my stomach hurts I feel like im retaining water:toilet: But my Urologist and Mom aren't taking me seriously :hmm:

01-22-2011, 03:06 AM
Just taking the antibiotic with food can help with the stomach upset.


01-22-2011, 07:52 AM
With Penicillin & Keflex, if I take the antibiotic with food, I'm ok. But if I have to take Macrobid, I have to take it with meals and have some saltines on hand to nibble through the day or I get nauseated.

01-23-2011, 04:46 PM
I am so glad you are getting some help now. I agree about taking the meds with food. Some meds will really upset your stomach. Please keep us updated on how you are doing.

01-24-2011, 10:17 AM
Thank you for all the replies the bleeding is now so much less I can hardly see any in my urine.. I have a hydro/cysto scheduled for friday..:(

01-24-2011, 10:31 AM
Great! Good luck with the cysto/hydro!

01-24-2011, 06:49 PM
Oh that is great. Do you think the antibiotic is working? Please let us know how the cysto/hydro goes. I am glad you are feeling better.

01-25-2011, 01:23 PM
I saw my Urologist again today and he didnt want me to take a urine sample. He read the results from the last culture(the one with all the blood) and said(Okay great i prescribed the right anti biotic:bonk:) We schedulded the dye in the kidney test for monday and the Hydro/Cysto for this Friday-Today has to be the worst flare ive ever had I just dont know what to do :(:(:(

02-02-2011, 04:17 PM
So I had the hydro/cysto on Friday at 7am I was expecting to stay there for a few hours but I ended up staying in the hospital for 4 days..I still am having a hard time getting over the stomach , back and vaginal pain... My doctor hasn't really explained much to me but when I sit up it feels like im crushing my organs is this normal?

02-02-2011, 05:09 PM
Oh my goodness. Did they give you something for pain while you were in there and now that you are out? I don't even know what to say. I am sorry you have had to go through this. I wish there was something I could say to help you. When do you see your doctor next? What does he say about this? What does he think went wrong?

02-03-2011, 12:02 AM
Aww. I never had hydro, so I don't know. A lot of the time I feel like my PFD is crushing my organs, but I don't know if that could aggravate PFD or not or what else is could be. I hope you're feeling better soon!

02-03-2011, 02:36 AM
This happened to me too I had more blood than they expected, but my amin problem was I could not pee, cathing makes my urinary retention much worse.

Sorry this has happend to you, I would like to say I got over it quickly but I didn't I end up with an infection from the retention.

Rest, rest, rest, us heat/ice which ever helps you, and if it continues go to the dr.


02-03-2011, 06:56 AM
Oh my gosh, that is awful, I hope you are feeling somewhat better.
So awful for someone your age to go through and all the while not being taken seriously.
Did he give you the results of your hydro/cysto?

02-09-2011, 09:36 AM
Sorry,I havent gotten back to you all-I really am having a hard time recovering..
I have no idea why I stayed but I do know I was bleeding and had some vomiting probably from anastesia though.. The sorness in my stomach has gone down but the pain to pee is so bad Ive been using a squirt bottle with warm water because it just hurts so badly I told my Uro and he said that its going to take time he gave me Vicodin even though I told him it doesnt really work for me,He also started me back on Elmiron which makes me pretty nauseated...:toilet:

02-09-2011, 09:45 AM
Does the Zofran help with the nausea from the Elmiron? If it isn't you could ask him for phenergan (sp) anti-nausea suppositories. They may help while you are adjusting. I don't know though with all the pain down there you are experiencing it may be better to take the oral anti-nausea meds. I would talk to your doctor. Maybe you could go up more slowly on the Elmiron.

Hang in there!!!:hi:

02-09-2011, 09:47 AM
I'm so sorry you're having such a hard time. It sounds awful. I hope you start feeling better soon.:grouphug:

02-09-2011, 06:39 PM
You poor baby! What an ordeal. Do you not have one really, really good girlfriend to support you through this? Hopefully you will recover from your hydro and get some relief, understand it takes a few days to a few weeks. Did your doc give you any pictures when they did it as to what your bladder looked like? You may want to ask about that so you know where you are. Could be other things going on as well, and if you start to run a fever, get to the doc quickly, do not want to have an infection.

Hope you feel better real soon, so sorry you had to go through all that, does your Mom go to your docs with you? Have they explained IC to her? You may be misreading Mom, maybe she just can't accept that her little girl has a problem like this, and by dismissing it, it will go away. Use your teen psychology brain. And understand she is probably as frustrated as you are. Feel bad for you, maybe the hydro will work and you will feel a whole lot better real soon. Take care of yourself, watch the diet. Jill, wife of Bob

02-12-2011, 07:17 PM
Thank you all for the support, Im not getting very much from my family. I did ask my Uro if he had the pictures and he said(Yeah I took some,I think theyre at the hospital,come back in 2 weeks) So ill be heading out there Friday I am having a very hard time getting my urine to actually get out It takes me along time to urinate but I still have frequency and urgency and flares I am following the diet and mostly trying not to think about the pain.The more i try to lay off the Vicodin the more symptoms I get hope I wasnt getting addicted! Im only taking 2 a day now

02-15-2011, 10:32 AM
Your body does become dependent on the pain meds. But, if you need them, you need them. Hope you are getting better everyday.

02-15-2011, 05:30 PM
too young,

I know how you feel about the lack of family support. I too have what I call a "fair weather family". When everything is fine they love to talk and enjoy your company and when you are sick they just stay away. I stopped talking to them all and pretty much disowned them. I get more support from my friends. Sometimes you just have to look after number one and take care of yourself. The squeaky wheel gets the grease so if you don't get help from one doctor go see another one and keep trying. Do you drink plenty of water and stick to the IC diet? I would do to the emergency room if you keep peeing blood and that antibiotic does not help very soon.


02-15-2011, 05:36 PM

I peed visible blood for two weeks after my hydrodistention. I think its because when they stretch your bladder, it rips apart small blood vessels and it take a long time to heal and is very painful for about a month when you urinate. I thing they used a piece of PVC pipe for a catheter when I was under.....assholes!

02-15-2011, 06:13 PM
So I am assuming the hydro was of no help to you whatsoever? I had to laugh at your last comment. How have you been doing? Just wonder if you are trying anything different now?

02-16-2011, 02:06 PM

yes I've been doing better and I have a routine that I'm sticking to religiously and its kind of crazy so I want to make sure it keeps working before I lead someone down the wrong path. You'll be the first to know. I've thought I've been on to something in the past and it turnes out to be a coincidence so I'm not going to jinx myself this time.

02-16-2011, 02:16 PM
the hydro actually seemed to help slightly with the frequency after about a month of pure hell but it didn't last long. Maybe a couple of months of improved frequency. I know to never say never but I'll never do another one. Very expensive and a waste of money in my opinion. It did allow the Drs to make a positive diagnosis on my IC though.

02-16-2011, 02:55 PM
Well my family just expect me to deal with everything and do everything for them.. I'm just waiting until I am old enough to move out I have a job interview Friday I no longer go to school and am trying to get into a new home/charter school once a week.. Im not as dumb as my family thinks I love to read a learn new things but my IC kept me from school and I didnt want my Mom to get SARBed so I dropped.

Since the Hydro I feel as I can hold a bit more urine in my bladder but the urgency is still there and I really have to push to get the urine out. But i haven't seen hardly any blood in my urine i had my 1st period since the Hydro and it was sooo painful. I felt like I had an infection a few days ago and I took some AZO I really didn't know what else to do.. These past few weeks have been really hard on me with my family and health.. But i do have an appt with my Uro Friday hopefully he'll have the pictures.

02-16-2011, 03:18 PM
Oh my goodness. You are doing such a great job in spite of your family. You are in no way dumb. Your posts are very articulate. I know this has to be so difficult for you without family support. I hope you find some comfort here:hi:

02-16-2011, 03:39 PM
I noticed you are on ditropan, I wonder if you are having retention....that would explain why you feel like you have to push it out. Some people can't take it because it works too good in that it relaxes the bladder too much and then they have a hard time going. Make sure you tell your uro on Friday that you are having this problem.

02-17-2011, 09:29 AM
Yeah, when I was on ditropan I felt the same way after awhile. It seemed to help my frequency for awhile, but after about 3 months on it I felt like I always had to really push to pee which in turn made my frequency worse, so there was no point in taking it. I can't take OAB meds...what happened with the Vesicare was even worse. I take Zanaflex now which I take for the muscle tightness from my PFD. It helps my frequency too because my muscles aren't constantly pushing on my bladder. You could talk to your uro about it.

I'm sorry your family doesn't seem to get it at all. You're doing great despite them and having IC. I don't know that I could handle all of this if it happened to me when I was 17...it was hard enough at 24 or I'm sure at any at any age it would be.

02-19-2011, 02:45 PM
Thank you all fro your replies, Im glad I found support here. I went to see my Uro yesterday and he wants me to see a doctor from UCSF, He had previously mentioned this but left it at that.. SF is very very very far from were I live I dont think my family would be able to even drive me out there.. I asked my Uro if the pictures from the hydro/cysto would be sent out there and he said(Oh no, Theyre probably going to do another one out there and other tests)

What made me so upset is that I dont even think ive fully recovered from the Hydro/cysto and now he wants to send me somewhere to do another?? Also since I started to see this Doctor he wanted my mom to switch our familys insurance to something else, so she did and now his nurses are telling us that the new insurance will most likely not be covering the doctor from UCSF... My Uro said its up to me if I want to stay on the Elmiron and the other medicines from him it feels like hes giving up because I didnt give up, Im not sure what to do everything is just a big mess:toilet:

02-19-2011, 04:07 PM
I don't get what the deal with is your uro. I live in a small city and see a urogynecologist and I get much better care. You shouldn't have to travel hours away to see someone when there are doctors that treat IC closer. I'm sure even if you have to go outside the area where you live there would be someone closer then going to SF (of course I don't know where you live, but there's a lot of stuff in CA :) ). I've never even had a hydro/cysto, I was diagnosed just on symptoms. Having never had one I don't know much about it, but I don't see what good having a second one is going to do...especially a second one right after the first...#1 if you're not recovered from this one yet a second one would probably just make things worse and #2 the pictures from the 2nd one would probably be just the same as the first. And aren't you already diagnosed with IC? What are they looking for? I really think you need to see another doctor...and you pick, don't go to SF just because this guy tells you to. Call around and see what doctors treat IC and accept your insurance. There's a directory on this website and you might be able to find someone that way. I know this might sound harsh and is a lot to put on you, but I really think you need to stop seeing this uro. I mean he even ignored you having a UTI...that's one of the most basic things uros do! I wish you the best of luck. (some doctors make me really mad)

02-19-2011, 06:05 PM
I wouldn't just assume that they will want to do another hydro, perhaps it is just your Dr making an assumption. I would talk to them by phone after they see your records to see if they feel they can help you or not. Also you can find out if they want to do another hydro. Maybe he doesn't feel like he can help you. You can do some research on your own and see if there is another specialist closer to you. I know you feel that your family doesn't give you much support but from what you said about your Mom changing insurance to get you better help sounds to me like she cares. Also, I know that at your age unless you are imancipated you have to have parental permission to have the procedures and tests that the Dr wants to perform. Maybe you should give her a break, it isn't easy hearing that your child is hurting. I know from experience when my daughter had surgery for her foot and the bone shattered when they went in to fix it, big problems! It was awful seeing her hurt and knowing I couldn't do anything, sometimes we try to "act" tuffr in order to hopefully make our children tuff up. Sounds weird I know but you feel like you have to help them get tuff or they will never make it. If they don't have first hand experience with IC, it is very hard to understand the pain and problems we have.
Back to your post. Why did he have your Mother change insurance? That isn't an easy thing to do, unless it is open enrollment with your company or you buy your own insurance which is outrageously expensive. Sounds crazy for him to ask her to do that to me! Maybe things are different in CA with your insurance though. From seeing other posts, I realize that things are very different state to state.
I hope you are feeling better, I haven't commented on your post before but I have been reading them. The care, and try to give your Mom a break, or whoever it is taking you to your Dr and paying for your medical care, it isn't easy. Maybe if you and your family could help each other understand what the other is feeling it would relieve some of your personal stress. I know that stress causes me to hurt more. I wish you the best.

02-19-2011, 07:09 PM
Hi there,
The consultation in San Francisco is probably a good idea. I found that once I got a good urologist who knew what he was doing, I didn't need to go to see him so often, so the distance wasn't as big a problem as I'd feared.

Also, just so you know... You can get a 504 plan for your IC that will cover whatever modifications you need to your school schedule or attendance. This would prevent you from facing SARB and would be a way to keep your teachers on track with giving you makeup work or not penalizing you for leaving class to go to the restroom. Your school counselor or assistant principal can give you the paperwork, though the main thing is to get a letter from your doctor stating what modifications you need: extra restroom breaks, a seat near the door of the classroom so you can leave discreetly, home instruction if you are unable to attend school for weeks at a time, makeup work & tests, etc. Just something to consider, rather than stopping school.

Wishing you relief soon,

02-20-2011, 10:03 AM
I am late coming to this thread, but I went back and read all your other posts too to try to see if I could help. Personally, I think you have several different things going on. For starters, I think that the nausea and vomiting could be from a couple of different things. If it only started happening after you got the infection, then having the a UTI can certainly cause nausea and vomiting. But, if I am not mistaken, I think that you were having this issue even before you quit school and before you had the infection. If that's correct, then I think that the nausea/vomiting could be caused by excess acid (acid reflux or GERD). Alot of ICers have this, but you need to get an appt with your Gastro to find out for sure. But, meanwhile, you might try taking an antacid next time you are nauseated and see if it helps. If it does, then let your Gastro know at your next appt. (This will also help give your Dr. a clue that this could be what's going on.)

When they saw that you didnt have "traces" of blood but in fact had a lot of it, they did go ahead and do a culture and he went ahead and r/xed an antibiotic for you. When he told the nurse to "send it out" that usually means they are going to culture it and grow it to find out which particular bacteria it is and to make sure they put you on the right antibiotic. He did do that, and he did have you on the right one, so that was good.

In regards to him sending you to another Dr. at UCSF, do your remember what Dr. he is sending you to? I am wondering if he is referring you to Dr. Parsons? If so, then the reason he is sending you so far is b/c there is no one comparable to Dr. Parsons anywhere else and you all are very lucky to have him in CA. He is a superstar among Drs in the IC community and even invented one of the treatments many ICers use for daily pain relief....bladder instillations. So, if THAT is who he is referring you to, then I am sure that's why your Uro thought it would be better to travel a bit farther and get an expert than to to just send you somewhere nearby for a 2nd opinion. But, of course, it is up to you whether you choose to travel that far to see whatever Dr. he is referring you to, or whether to try to find someone else closer.

Now, in regards to the retention and straining issue, as another poster mentioned, the Ditropan and most of the OAB meds can definately cause that side effect among many patients since it sometimes works "too well." I had the same problem when I took it so I had to go off of it. I think it would be worthwhile to call your Dr. and let them know you are having retention right now and straining and ask him if wants you to continue this med. He might want to switch the dose or put you on something different or he may take you off it altogether.

I also think it might be a good idea to get some AZO home uti test strips to have on hand so next time you think you have a Uti but arent sure if it is an IC flare or a UTi, it can help rule it out. Just an idea.

Of course you should always talk to your Dr. before starting or stopping and med. I am not a med professional. I am an IC patient just like you and am just trying to help the best I can thru shared experiances. Only your Dr. can and should give medical advice.

Hope this helps and hope you feel better soon!


03-02-2011, 03:52 PM
Sorry I Havent gotten back Ive had the flu and just started a new job.. Im not sure what else to do but keep seeing my Uro and eventually go to UCSF whenever my insurance goes through...

03-02-2011, 05:48 PM
Sorry you have the flu. But, that is great news that you have a new job. Congrats on that!

03-04-2011, 07:54 AM
Congrats on the new job!

I'm just curious, its up to you what you do, but is there another uro or urogynecologist in your area?