newly diagnosed and needing help and advice

[Asmith]

I found this forum from a suggestion of my gynocologist. I have been diagnosed by my urologist with IC, he put me on elmiron, flomax and macrobid. My family doctor and I did a little more research and she is trying out the elavil and hydroxizine with the elmiron and flomax. I have been on the IC diet for two months and noticed improvement at the beginning but now I think it's not helping at all since the pain is returning. I have had pain for years but the ob gyn said it was my ovaries and I needed a hystorectomy, they were bad and I did have the hystorectomy but it didn't help with the bladder and urinary pain. I have been to emergency rooms with severe pain and the ER doctor always assumes it's a bladder infection and then when they test and it's negative they tell me there is nothing they can do for me. Even the urologist I am seeing told me basically that there is nothing they can do, he said "it won't kill you, but it will make you wish you were dead" The bleak outlook he's painted for me hasn't helped. My family doctor has prescribed pain meds for me, darvocet for lesser pain and dilaudin for severe pain, but I know that the pain meds make the depression worse. I feel like I'm in a vicious circle and there is no way to make it stop. Sorry this is so long, i'm just having a lot of pain today and feeling really desperate for any solution at all. Can anyone tell me if exercise or walking alot makes IC worse? Mine seems to flare more when I do alot of walking. Any suggestions anyone would have I would greatly appreciate.

[Mrs. Burschman]

Asmith,

Welcome! Sorry you're here!

What an awful thing for a doctor to say! "You'll wish you were dead"? What a jerk! Do you have a backup doc in case his bedside manner doesn't improve?

There are a TON of things to try. Nothing works for everyone, but it seems like almost everyone is helped by something. Are you taking at antidepressant? A lot of us are. One of my doctors said anywhere from 80 percent to 100 percent of people with chronic pain also are depressed, so there's no shame in getting some chemical help!

There is lots of good information and support on this site, so you came to the right place!

Amy (Mrs. Burschman) :bunny:

[Asmith]

Hi Amy and thank you for replying. I take a mood stabilizer, trileptal for bi polar 2 disorder. I sometimes take atavan for anxiety. I am on hormone replacement therapy, the compounded estriadiol, testoterone and oral prometrium. I'm looking at other doctors because of the current doctors bedside manner and general attitude. I feel if he's not optimistic about recovery/remission then he's not going to help me feel better all the way around. My regular family doctor and my gynocologist have been very good, so that is sort of my backup right now. But if anyone knows of a good urologist in Colorado or Utah please let me know. I've even considered the Mayo clinic. I haven't had time to read all the forums to know if anyone has had success with them. I'm interested in the DMSO and some of the rescue instillations that I've read about, in some I think they use heparin and elmiron. I would like to know if anyone here has tried and had success with these. I'm really glad that I found this forum. I've read alot of good information that my doctor either didn't know or just didn't reccomend. It really helps to know I'm not alone in this. Thanks again and I appreciate all replies
Ailene :angel:

[ICNDonna]

Many ICers find that Elavil helps significantly with IC pain. I couldn't take it, but my husband takes a low dose for arthritis and it really helps. Our doctor said it helps with pain because it interferes with the nerves that transmit the pain message to the brain.

You might try making your walks a little shorter to see if it helps. I know if I overdo it, I have pain.

Sending healing thoughts,
Donna

[indiana]

I wish you the best. I have been very lucky up til recently. I was diagnosed in 8/04 and have had a few minor flares and one big one that lasted 3 weeks in August of 2005. That was it, I was back to eating normally and drinking alcohol occasionally and having a Diet Pepsi once a day. I was still taking my meds though, 400 mg. of Elmiron and Pyridim Plus when needed.

I was on top of the world until almost a month ago when I did get a bad infection, they treated me but it put me into the worst flare I've had so far.

I do not have urgency or frequency this time but pain, pain, pain. I am having trouble walking and riding in my car. My Doc told me that my bladder is spasming and anything that vibrates my bladder will cause it to spasm more. So, she put me back on Elavil (I weaned myself off a year a half ago because I was feeling so great) and I'm still taking my Elmiron and Pyridium Plus.

I hope this passes soon. I know what it feels like to cry on your husbands chest, or cry driving down the road, or just cry anywhere! :headbang:

I'm thankful for the boards here and my awesome Uro, shes' known as the great Uro in Northeast Indiana. If anyone lives in my area I would recommend her in a heartbeat.

I'm losing weight fast due to not being able to eat much, which I guess if there is a silver lining anywhere, that is it! :)

[Asmith]

Donna and Faye, thank you for your replies and information. I do think the elavil has helped me. That and the hydroxine seemed to have done the most for me. Or at least that was when I noticed the most difference. I try to limit walks to short distances but where I work I have to walk quite a bit. I don't have the huge problem with frequency but right now it's pain. I have noticed a change in weight loss too Faye, but in my case I really need to lose it, so I look at it as a silver lining too. It was the one thing when I was in so much pain that did make me smile :) I also avoid long trips anywhere, it's to hard on me and when the frequency was a problem I was embarrassed at always having to run to the bathroom. Is Pyridum plus different from what you can buy over the counter? My doctor has never mentioned it to me, I take two of 95 milligram strength that you buy otc when I feel a flare up coming on. How long did the elmiron take before you noticed a difference? I don't think mine has had enough time to really do the trick. I am feeling a whole lot more optimistic after reading the posts on here. Lots of good ideas out there and a lot more hope than my uro lead me to believe. :angel:

[rosesitty]

Ailene - I'm sorry, how unprofessional of your urologist (and I'm being kind here!). If it were me, I'd try to find someone who has more experience with IC and someone who's more empathetic. Some of these docs, I'd like to tackle, put a catheter in and instill battery acid and see how that feels! There are lots of different medication combinations, and multi-modal therapies to try. Unfortunately there is no cure for IC (YET!), but there are many things that can ease your symptoms and even put you in remission. I would make sure that someone (whether it be your PCP or your gyno) be the point person to keep track of what meds you are taking and making sure that you are not being over medicated. It's easy for one doc to prescribe this and another to prescribe that, and pretty soon you're rattling when you walk from all the pills, let alone any contraindications. Pyridium and Pyridium Plus are prescription meds, Uristat is the OTC (less strong) version. Remember Pyridium is not meant to be taken long term. You may want to check into something like Urelle that is less harsh on the system. It's a different med that does basicially the same thing - antiseptic and mild antispasmodic. Did your uro put you on Macrobid indefinitely or is it a series for a certain length of time? It's just my opinion (again) but unless you have an infection, I don't see what the purpose is of long term antibiotic usage. I know it's helped some people, but inevitably it makes you resistant and sets you up for yeast issues. By the way, it can take Elmiron up to 6 months or longer to work...
Hope this helps!
Stephanie

[indiana]

Asmith,

Yes, Elmiron can take up to 6 months to start working but once it did for me it was wonderful. Don't ever miss a dose, I have and my Uro thinks that is why I am in such a horrible flare after the infection. I got a major infection a month ago....that along with only taking 200 mg. of Elmiron instead of my prescribed 400mg is why I am where I am now.

My Dr. said I can take the Pyridium Plus up to 3 times a day while I'm like this....it makes me tired so I take a lot of naps but it definitely helps. I have tried just regular Pyridium but it doesn't help me as much. The P. Plus is stronger and works for me.

I would also find another Uro......very unprofessional! When we are down and hurting we need our Dr.s to be there for us, compassion goes a long way whether it is from our husbands, friends, children, or Drs.

[Asmith]

How is the pyridium harmful if taken long term, I have had two different doctors give me conflicting information about it. One said it shouldn't be taken over two weeks, the other said it wouldn't cause me problems but that it could cover up an infection because it does treat the pain pretty well. The macrobid was for a 45 day period. I did feel like it was helping at the time, although I currently take so much medicine that I'm not sure what is working for what. Does the Urelle turn the urine orange as well?
Thanks for all help, I'm really greatful for it

[rosesitty]

Asmith - Since I'm not a doc, it has something to do with the kidneys. If you research it online, you'll find that it's not for long term usage. Here's the deal with Macrobid. There are two kinds of antibiotics. Those that kill the bacteria, and those that supress the bacteria so your own immune system can kill the bacteria. Macrobid is one that supresses. So many of us IC patients have a compromised immune system, so Macrobid may not completely get rid of the infection. Other drugs, like sulpha or Keflex actually kill the organisms. Urelle turns your urine a pretty shade of blue...and your toilet too!
Stephanie

[Vampireness]

I found this forum from a suggestion of my gynocologist. I have been diagnosed by my urologist with IC, he put me on elmiron, flomax and macrobid. My family doctor and I did a little more research and she is trying out the elavil and hydroxizine with the elmiron and flomax. I have been on the IC diet for two months and noticed improvement at the beginning but now I think it's not helping at all since the pain is returning. I have had pain for years but the ob gyn said it was my ovaries and I needed a hystorectomy, they were bad and I did have the hystorectomy but it didn't help with the bladder and urinary pain. I have been to emergency rooms with severe pain and the ER doctor always assumes it's a bladder infection and then when they test and it's negative they tell me there is nothing they can do for me. Even the urologist I am seeing told me basically that there is nothing they can do, he said "it won't kill you, but it will make you wish you were dead" The bleak outlook he's painted for me hasn't helped. My family doctor has prescribed pain meds for me, darvocet for lesser pain and dilaudin for severe pain, but I know that the pain meds make the depression worse. I feel like I'm in a vicious circle and there is no way to make it stop. Sorry this is so long, i'm just having a lot of pain today and feeling really desperate for any solution at all. Can anyone tell me if exercise or walking alot makes IC worse? Mine seems to flare more when I do alot of walking. Any suggestions anyone would have I would greatly appreciate.

I'm really sorry about you experiencing pain and all these symptoms. I wish I could tell you how to stop the pain, but I'm experincing it myself and I have not found anything to help me yet. I hope you start feeling better real soon.

[Asmith]

I just came from a doctors visit, I was experiencing a flare up after virtually pain freen three weeks, I'm not sure what triggered it but it's back with a vengeance. My primary care physicain that I usually see was gone so I had to see the one that fills in, he informed me that he would do a dmso instillation and that I would be "fixed" and no longer need medication of any kind. What I went for was to have my urine checked and to see if my macrobid needed to be started again, and to have him refill some of my pain medications just in case I needed them. What I received was the most unprofessional waste of my time and his. He had no idea what IC even was, spent most of his time arguing over whether it really is painful or not and how much of it was in my head. I am so fustrated at him right now, I was feeling bad in the first place and I didn't need him to tell me it's all just in my head, I would not choose to go to the bathroom 50 times a day lately if I could avoid it, nor would I choose to be in pain at all. Can anyone tell me if a pain specialist is what I should be looking into? I definately do not want to go back to the doctor that I went to see today. Do the uro doctors usually advise seeing a pain specialist? Sorry for the long rant, my recent visit just left me really unsettled and angry.

[marsi4]

Asmith I would recommend you get a referral to a pain clinic as soon as possible and try bladder instills as well. If you have intense or severe pain you need pain management. Don't wait around for elmiron or any other oral meds prescribed for ic to help or kick in because they can take a very long time to help if they do at all. I had a severe flare for close to one year and if it wasn't for my pain meds I don't think I would have made it. We never know how long a flare can last so please don't allow yourself to suffer without any pain management. Pain meds do not remove all pain but they do help enough to get through the day and get a few hours of sleep. Going to the er is a waste of time because if you do come across a doctor that knows something about ic they will only treat your pain several times and then tell you to go to a npain clinic. That was my experience. I found that bladder instillations dhelp as well. DMSO irritates my bladder at first and intensifies my pain but a week or so later I feel much better. Heparin helps replenish and restore the bladder lining but it doesn't do much for pain. That has been my experience and may not be what others have experienced. Hope this helps.

Marsi4

[rosesitty]

Remember, there's a reason they call it a doctor's PRACTICE. Just my opinion, but I think there are many docs who don't know a lot about IC and don't know how to treat it. If it were me, I'd find a urologist who specializes in IC. DMSO won't FIX you so you won't need any additional meds. There IS no cure for IC. He should be a proctologist because he's talking out of his butt. Not every uro will suggest a pain specialist. I think the percentages are relatively low of those who have IC but are also going to a pain clinic. Sorry for MY rant, but it drives me crazy when these docs are know it alls when many don't know what they're talking about.

[Asmith]

Thank you both for your ideas. Please don't worry about your rants, I am getting really good at ranting about how uninformed some doctors are. What were your experiences with the DMSO, I was going to try it on a Friday afternoon because I had heard it could cause me more pain than I am in right now and I have the weekend off to recuperate. I was more interested in the rescue instillations because I was a little afraid of the DMSO treatment. Again if anyone knows of a really good uro that specializes in IC anywhere at all in Colorado I would be interested in seeing them. I'm going to have my uro reccommend a pain specialist, I will also be trying the rescue instills this Friday, wish me luck!

[indiana]

Dear Asmith,

First of all, I am sorry that you had this experience. There is nothing worse that a Dr. not taking you seriously. I have been very fortunate to find a wonderful woman Urologist who listens to what I say and is compassionate. I have also been told by my Gyn that she is one of the best Uro's in Northeast Indiana and specializes in IC.

I would definitely go thru your health insurance ppo or hmo list and find out who is in your plan and then call each one of them and ask if they have IC patients, if they do not, move on. If you do not have insurance, then use the same rule of thumb and go thru your yellow pages. I'm not sure what area you live in but hopefully you have a multiple Uro's to choose from.

Secondly, if a Uro does not provide you with pain meds then I would most definitely seek a pain specialist. I used to have Endometrosis until my Hysterectomy in December. Anyway, my Gyno referred me to a wonderful pain specialist who perscribed meds for me. He also knew that I had IC and knew that I would be using the meds for both conditions.

I cannot stress enough that you need to take control of your situation. This is your body and you know better than anyone what is happening and what you are feeling. You need to do the work to find a Dr. that is going to listen to your needs and do what they can to make sure you are comfortable. You deserve it! Please don't ever forget that.

One thing to remember also and this is something that my pain specialist told me. Most Dr's now-a-days are very scared to presribe pain meds because of the addiction factor, lawsuits, etc. Most of the time, they will refer you out to a pain specialists....because that is what they do. Pain specialists are experts in presription pain medications and how they interact with our systems and other meds that we may be on.

Good luck to you and please write again if you need more info or have more questions.

[Vampireness]

rosesitty - That's really an interesting theory you got there about the Macrobid. Because thats what I'm on as a preventative drug one tablet once a night. But I got the doc to change it to another antibiotic because she asked me to take two and it's way too strong for me and I feel like I'm about to die very soon, bad gastric and I feel always drowsy and so I go around like some zombie. I have prescription for Bactrim and Nalidixic Acid so do these two kill the bacteria or supress it, if you have any idea?

Asmith - I'm so sorry you damned doc is a jerk. What an ***, I had a doctor once tell things like I've live and she can't do anything and she will just discharge me. She was a total ***** and I was her private patient and not subsidized. Everytime she saw me, she put on this "you again???" It's like when she looks at me, she thinks she's difficult and I'm a failure because I don't know what she have, so to make it easier, time to get rid of her. Jeez!!! She did not talk about Elmiron or IC or anything, according to her I have OAB (Overactive Bladder) when she didn't even do a hydro or bioposy. She offered me Tolterodine and that was it. Take it or leave it, that's all. She said the burning will continue and theres nothing she can do about it. Didn't give me anything for pain either. Tolterodine didn't help plus it gave me chest pains. I was peeing every hour before so since your like peeing 50 times a day that's too much and pain management is something you really need. I'm really glad your getting rescue instills. It helps some people with pain and I don't think you should try the DMSO till you get something to help with the pain. DMSO is scary and it seems to make alots of pain for many. DMSO doesn't cure!!! Jeez can't believe he said it's all in your head and then is a doctor dealing with patients who have IC and bladder related, so everyones symptoms is all in their head???? And you know he doesn't know about IC (clearly shows) so what gives him the right to say DMSO cures and you don't have to take anything??? Jeez these are doctors you don't need at all. Move on!!! for sure!!!!!! They should be fired for not helping you deal with pain and well I hope he looses his job. God it makes me mad as well.

[Vampireness]

indiana - How or why did your doc think you should take 400mg instead of the 100mg. Because I know many who will give up Elmiron after a year or even six months or whatever since they been taking it at 100mg. Just curious.

[indiana]

Vampiress,

My Dr. started me on 400 mg as soon as I was diagnosed. I'm not sure why she choose that amount. Each pill is 100 mg. and I take 2 in the a.m. and 2 in the p.m. I am also back on Elavil, 20 mg instead of 10.

My Dr. and other IC patients I know told me that Elmiron takes approximately 4-6 months to start working, so people shouldn't stop taking it before then, they aren't giving it a chance.

I've also been told by my Dr. that if I miss doses or stop taking it I'm going to feel the affects right away. I have a friend who also has IC and she told me she didn't think it was helping her, she stopped taking it and then she realized it was helping her! she put herself back on immediately.

I was doing so well about a year ago that my Dr. and I decided I could try to go down to 200 mg. a day, but I didn't do well and we upped me back up to 400.

I just feel so blessed that I have such an awesome Dr. I hear a lot of you on this website and it seems that many of you have unqualified or just plain lousy Dr.'s. If anyone lives close to Northeast Indiana I can refer you to my Dr. she is a Godsend.

Or if anyone has questions, please ask me....she has given me a wealth of information and if I can't answer questions right away, I will ask her and get back with you.

[Vampireness]

Sounds like you got a wonderful doc!!!!

But it's still intersting the dosage she chooses....She sounds very experienced with treating IC. I guess she thought you needed something stronger or higher dosage = more absorbed by the body?

Ok I have two questions....
Is Nalidixic acid (anitbiotics) acidic?

Another is
I wanna complete my antibiotics that I am taking once every night to prevent infection (which I know I have), how do I complete this course faster than a month, I wanna do that broth culture, before my consultation with my doctor in two months. She has put me on Bactrim a month then Nalidic acid for another.....

Oh btw I did try to PM you but you never responded.

[indiana]

Hi!

Sorry, I do not check my e-mail on the weekends. Your questions unfortunately are something that I myself cannot answer but i will try to get the answers for you.

I'm always confused when I hear that IC patients are on antibotics on a regular basis. Why is that? I would think that you would have constant yeast infections, I know I would. I get a yeast infection just off of one round of anitibotics.

Plus, it cannot be healthy for our bodies to be on them on a continual basis. Also, you would most likely build up a resistant to them.

Let me know about the antibiotics and I will try to get answers to your questions.

[Vampireness]

Hi!

Sorry, I do not check my e-mail on the weekends. Your questions unfortunately are something that I myself cannot answer but i will try to get the answers for you.

I'm always confused when I hear that IC patients are on antibotics on a regular basis. Why is that? I would think that you would have constant yeast infections, I know I would. I get a yeast infection just off of one round of anitibotics.

Plus, it cannot be healthy for our bodies to be on them on a continual basis. Also, you would most likely build up a resistant to them.

Let me know about the antibiotics and I will try to get answers to your questions.

Im taking two tablets of Bactrim each night so I was wondering how would I go off them, I do not want to build a resistant going off it too soon.
It's a preventative dosage and my doc said I can go off it whenever I want but I don't wanna risk it.

I do have infection....It kinda showed up and I feel better on antibiotics, my "IC belly" has gone down so much. I feel very little pain at times. But, it comes right back, thats y I wanna do this broth culture.

Does yeast infection go off on it's own? (I doubt it)
And yeast infection are lumpy white discharge rite? I take probiotics now with the suggestion Katrina and Martha made.

My doc said to go in and to check if I have yeast infection then will treat me, but I like to prevent it in the first place, and I can't understand why many doctors told me nothing of this.

Is there a test for yeast infection? A really good liable test?
I want my doctor to prescribe me that medication Nystin or somethin but I doubt she will do it.

[indiana]

Hi there!

Whenever I am given an antibotic to take, I also ask them to prescribe me a "Diflucan". It is a pill that you take 1 day then 3 days later you take another one. They are the best thing for yeast infections.

Yeast Infections can appear even without use of antibotics. What my OB/GYN has told me is that our bodis are very delicate and need just the right amount of bateria and yeast and whenever that balance gets messed up, it can cause either a baterial infection or a yeast infection. Go figure!:headbang: Dr. can test you in seconds to see if you have a yeast infection. They'll just do an exam and take a sample of the discharge and put it on a strip....then it will read yeast or not.

We women sure have our share of bodily issues! :help:

Yeah, the IC belly can be horrible! I looked about 5 months pregnant when I was in my last flare...it was horrible.

A bladder infection is what brought on my last flare........it was horrible. My Dr. told me that IC patients have a much harder time fighting the infection because our bladders are so unhealthy anyway. Plus, it can put us into a flare, which is what happened to me.

Now, I have a question for you! :woohoo:

What is a "broth culture"? I haven't heard of that.

Thanks!

[Vampireness]

Hey indiana,

I read that Nystatin is safer and better than Diflucan. I don't get why my doctor doesn't wanna give me something and wants to wait till it happens, that's frustrating. Just I like got UTIs in the first place, I really don't need a yeast infection to happen then to treat you know? So I am going to ask her prescription for Nystatin and if she doesn't prescribe then I'm depending on Ruth to help me out. But I'm off antibiotics for a week for broth culture which is explained here:

http://www.ic-network.com/forum/showthread.php?t=26713&page=4 (Look for the post Martha wrote) [It's supposed to be better at culturing and showing bacteria, normal lab cultures won't show]

Is there a chance for this test to be wrong?

I'm sorry you have an infection but are you off it?