View Full Version : New to IC
08-22-2004, 11:48 PM
:cat: For the past three years I have had numerous bladder infections. Then on 05/31/04 my whole life changed with the onset of the severe symptoms of IC. I have been diagnosed and have just recently started taking Elmiron but in the interm find myself just sitting in the bathroom crying. It hurts and I feel the frequency and urgency constantly. Working is becoming a real problem as I cannot figure out how to even get there when I need to go to the bathroom every couple of minutes. The doctor did the bladder distention and cystoscope. I was actually starting to feel a little better and then they decided last Friday to have me come in for Hydro therapy, where they catherize me and fill my bladder with what they call an antestia cocktail. This was a mistake. It ended up making my symptoms 100 times worse and now I have nothing that relieves the burning and pain and urgency. They said it was too soon after the surgery and that I was too raw and spasming. They promised to call in something for pain and then left me to my own devices all weekend. Is there anything you have heard of that I can do for myself that will help me???
08-23-2004, 12:06 AM
My heart breaks for you. I can't believe your doc would leave you in such pain over the weekend. Did you have an emergency number for the doc office? Keep calling until you get some help! I, too, and a newbie and had constant pain for 3 weeks after my cys/hydro. I tried several meds but the only comfort I had was lying on my back with an ice bag between my legs and on Vicodin. It does get better though. I started on Elavil, in addition to the Elmiron, and it made a difference. You will find a lot of support and information here. It was my life for the 3 weeks I had 24/7 pain. Listen to those with the experience. Hope you get some relief today. By the way, welcome to the boards.
08-23-2004, 01:43 AM
Welcome to the board. I'm sorry its under such awful conditions though.
NEVER ever give up on asking for pain relief, and if you have to see if you can find an actual pain management doctor to help you out. Your uro or your primary doc can help you find a good doctor, hopefully.
Nobody deserves to be in pain like that or treated like you were by a doctor. Sometimes I almost wish they could feel the pain and sensations that we feel for jsut one day. ONE day would be enough for them to understand how awful IC really is.
I am lucky to have a good uro who works with my pain management doctor and even when I go into the hospital with an infection that always spreads to my kidneys they communicate and decide the best course of pain treatment. Thats how it should be for everyone and please, please dont settle for less.
We often treat animals better then we do humans, and while I am a major animal fan and have a mini farm in my house, we dont need or deserve to suffer.
Please hang around here, read read and read, and know that you definately arent alone in all of this.
Take care, Sandy
Make sure to follow up on getting those pain meds, OK, sweetie? :kissing: I hope you can get them soon.
08-23-2004, 02:41 AM
I absolutely agree that a telephone call to your uro is a good idea. I can't believe they left you without any pain control for the whole weekend.
Are you following an IC diet? You'll find information about this is the Patient Handbook at http://www.ic-network.com/handbook Too often IC patients are told to drink cranberry juice, which is the worst possible thing for someone with IC --- it causes pain for most of us. Also, you'll want to avoid soda pop and coffee (There's a list in the handbook of other things to avoid, along with a list of "usually safe" things for ICers).
Elmiron can take up to six months or longer to be effective so you'll want to try other treatments/medications during that time.
And if you're going to have any more instillations, I suggest you be sure they instill lidocaine or a similar substance first.
Sending warm healing thoughts,
08-23-2004, 02:59 AM
That is absolutely awful that they left you all weekend to fend for yourself without adequate pain control!!! :mad:
PLEASE keep calling them and insisting you need something for pain. If they won't give it to you, please check with your primary care doctor to see if he/she will give you something, and also think about switching to a different urologist who is more compassionate.
By the way, :welcome: to the boards :) You'll find a lot of support here; we all know what it's like, and there's a lot of support here. Keep us updated on how you are, and feel free to post any questions you might have.
08-23-2004, 04:21 AM
:hi: :welcome: I am so glad you found us. This is such a wonderful, safe place full of helpful and supportive people.
I am so sorry that you were left for so long without proper help. That is inexcusable.. Be sure you call to follow up and ask why that was done to you. If this is standard operating procedures, then I think it is time to find another doctor. One who will be more compassionate and who will work with you to find the treatments that will help you. They are out there as are the treatments. It might take time to find, but so worth it. :kissing:
08-23-2004, 05:04 AM
:hi: Welcome to the boards. I too have been in a lot of pain these last 2 weeks since the Hydrodestion and Biopsy to see what is going on. I have been living on Lorcet Plus for the pain. Bless your heart I don't know you have coped all weekend without anything for pain. Please keep calling your uro. I am sending you stop hurting vibes. Please feel better and know that your aren't alone in your pain :grouphug:
08-23-2004, 07:27 AM
hi and :welcome: to the ICN family they all have gave you some wonderful advice and i believe you will find the most helpful information at the website Donna gave you above.
Please keep us updated on how you are
sending you hugs and prayers
08-23-2004, 09:00 AM
You poor thing! I know exactly how you feel....it took so long for me to find a doctor who was knowledgeable about treating pain. They are out there, I promise!! Don't settle and don't buy into that old addiction protection argument. If your doctor won't help you, find someone else or ask for a referral to a pain management specialist. It's worth it. There may not be a miracle cure out there, but there *are* options to help manage pain and give you at least a semblance of a life back. Insist on it.
Meanwhile, coming here for support is a great resource, esp. when you feel like giving up. Just knowing that you're not alone in any of your experiences can help alot. :grouphug: Hang in there sweetie. You're in my prayers. :pray:
08-23-2004, 05:02 PM
:welcome: :welcome: :welcome: :welcome:
I am sorry you have IC and have been suffering so much.
That link brings you to posts on IC pain managment....the 2 page of it has posts with 4 attachments....the last one is a list of ideas. I hope something helps you.
08-23-2004, 08:50 PM
Thanks for your imput. You cannot know how much it is appreciated. My doctor decided I do not need pain medicine, which I don't agree with, and wants to put me on Atarax! Now I feel like this is all psychosymatic. I'm so frustrated!
08-23-2004, 08:53 PM
Thanks Sandy. I am going to call my refular internal medicine doctor and see what she has to say. The uro doc feels like Elmiron and Atarax are just going to be the ticket. I however do not share his views. Just want the pain to stop........
08-23-2004, 08:54 PM
Thank you vm!!!! It really does help just being able to talk with others who know what I am going through.
08-23-2004, 08:58 PM
Thanks Donna for the link. I will definitely be looking at the handbook and seeing if there is anything I may be doing which is making the situation worse. I sure do appreciate your responding.
08-23-2004, 09:00 PM
Thanks Jen for your thoughts. I really felt like I was all alone until I looked at the replies today to what I wrote. I am going to try to keep my chin up...Lord knows it is hard though....
08-23-2004, 09:02 PM
Sharon, Thanks for your reply. To me, right now anyway, compassionate and doctor are not in the same breath........will look into another doctor though seeing as how this one wants to put me on Atarax and wants me to just deal with the pain.
08-23-2004, 09:04 PM
Thank you blondiecat! Keep on sending those good vibes...definitely need them. :)
08-23-2004, 09:09 PM
Thanks also for the link and the prayers. I really appreciate it.
08-23-2004, 09:11 PM
This doctor is a beast! You are correct. Somehow I managed to make it through the weekend, called his office twice yesterday, four hours apart and he wants me on Atarax. Now I feel ike I am a nutcase or something.......
08-23-2004, 09:12 PM
Thank you for your support and prayers. I am trying hard not to give up hope.
08-23-2004, 09:13 PM
Thanks for the link. I am willing to try anything at this point. Everyone has been so nice here. It really helps to be able to talk about this.....
08-24-2004, 01:37 AM
Atarax is a VERY STANDARD treatment for IC. Please read about it in the Patient Handbook. It does not mean you are a nutcase. The reason it is prescribed is that it has antihistamine properties, which can prevent mast cell degranulation in the bladder muscle. This can reduce feelings of urgency and pain. In addition, it has mild sedative properties, and this can also reduce aberrant bladder contractions and help you sleep better at night.
I take 25 mg of the stuff at night, and it does help. Granted, I also have pain meds, and I do think your doc should give you something to take until the other meds kick in -- but a LOT of ICers have had great luck with Atarax, so don't dismiss it! Give it a shot :)
08-24-2004, 11:38 AM
Thanks for your imput. I plan on giving it a try. At this point what do I have to lose??? I know the anxiety part of the drug will definitely help me. I am very uptight and frustrated because I have been in pain for so long constantly. Thanks again!
08-24-2004, 11:58 AM
anyone who can tell me how to post a message please help also am having terrible heart burn is this normal
08-24-2004, 12:31 PM
To Sadgirl1950--When you first log on, The blue bar at the top of the page says "ICN Message Board". Don't click on anything, scroll down till you see on the left hand side "Forum". Under "Forum" are categories that you can choose to post your message. For example, "Share your Story", or "Elmiron". Click on that link, and at the top left you will see "New Thread". Click on that and it will allow you to place a message. I hope this helps. Also, I am not familiar with the heartburn issue. And Welcome KTwhskr. Make sure you get checked for a UTI after these procedures. I am suffering with one now (not due to any procedure, but this is my second one since I've been diagnosed in March. First time was because of the hydro/cysto. Now, who knows except that I'm very uncomfortable. Hope your symptoms are relieved soon! liz
08-24-2004, 03:26 PM
I was recently diagnosed July 28th with IC. Nine years ago I had surgery for severe pelvic pain, fullness, feeling like I had UTI's and painful intercourse. After the surgery I was told my bladder had been distended and I should feel much better, which I did and was able to also become pregnant. I have been okay since the surgery and then I started to have alot of right sided pain and had the ovary that needed to come out. Funny how things happen about a week before the surgery I noticed that I was starting to have the sensation of having to pee more frequently, and feeling the "heaviness" and pressure and voiding small amounts. I asked to have the bladder distended as it worked so well last time and felt good for 9 years. I went in for surgery woke up with the most horrific bladder spasm's and ended up staying over night as I couldn't void, had a foley put in and was getting dilauid every three hours the pain was so horrible. The urologist came in the next morning and said"your bladder is not normal, you'll have to follow up with Dr.Smith" for that condition. They took the foley out I was able to pee had a residual of 22cc's and home I went to begin the absoluteworst hellish three weeks of my life.The bladder pain was like nothing I had ever experienced before, lets not forget the urethral, and the feeling like there were shards of glass up the left hand side of my crotch. I was peeing about every twenty minutes about 30-50cc's. I only got relif when I was actually peeing. Got home on a Thurs. called the uro on Fri. put me on Macrobid said sounded like UTI Took the meds and the PAIN got worse. Started with the pyridium, stopped the antibiotics and started using the percocet. The pain was so bad I was using 10mg. of oxycodone and it was bringing the pain from a 9 down to a 5-6. I finally got in to see the specialist about 12 days after surgery and all I could do was cry. I have to admit he was very nice and by this time I had done quite a bit of research on my own so I was able to ask questions. He started me on the elmerion100 mgs three times a day, 25mg of Elavil, 10mg of ditropanxl. The burning in the urethra has stopped and the bladder spasms are much better. I have stopped coffee, well almost if I really want some I drink 16 water before and after to dilute the urine as much as possible. I am not able to ride in the car for long periods as it is really uncomfortable and I also Have found that by 4-5pm I start to have the full and alot of pressure sometimes complete with a few shooting, stabbing pains in the left side of the vagina. Of course this is just in time for supper prep with three kids and a husband to boot! I have decided to stop being a fool and use the pain meds as I need to be able to function and live without pain. Sorry for this story being so long, it just feels so nice to know that I'm not alone with this condition.What a great site. Thanks so much
08-24-2004, 04:25 PM
Oh my goodness!!! I am sooo mad at that doctor right now... Please find someone else. I was just diagnosed the end of May after almost a month of excruiating pain and numerous visits to the ER and my old urologist, who diagnosed me then told me he was glad "we" found the problem and to come back in 6 mos. I thought he surely must have bumped his head or something. I found this site, along with www.ichelp.org which has helpful information as well. Educate yourself and start making phone calls, or have someone make them for you and find someone who will listen and understand what you are going through. Maybe someone here knows of a good uro. in your area. It makes all the difference in having hope for the future. Know that we all, here on these boards, understand. I wish I was there to give you a hug in person. Keep us informed.
08-25-2004, 01:40 PM
Janna, I so hope you get relief....IC can drive us all crazzy ....but together we survive and get through....and fight to win!
Hi Janna, I hope you can find some relief for your pain really soon. We all know what living with IC if like, and this is a great support group to belong to, and share the bad and the good days, and lots of information to help. Please keep us posted as to how you are doing, and hope that better days are ahead for you, hugs Iris. :hi: :grouphug: :flower:
08-25-2004, 02:45 PM
lizz thank u so much helped alot sadgirl
09-01-2004, 01:07 PM
I am feeling so discouraged. I had called the dr. as I needed more pain meds. I was asked what worked for me and I told the nurse oxycodone. The next day I get a script in the mail for dialuid 1mg.instructions to break tablet in half every 6 hours for pain. Well first of all dialuid does not come in 1mg. tablets. I call back explain and then rec. a script for 2mg. same instr. Well the pain med has given me side effects but I decided not to be a whiner and try to cope. Well yesterday the back pain started and alot of burning, pressure, and those shooting pains. Pain about a good solid 7-8. Took 2 hot showers and did what I thought would help. Took the full 2mg. with very little relif. Called the doc spoke with the nurse got a call back and said the doc would order me vicodin. I questioned her why was I asked what pain med worked for me then I wasn't given it. She said the doctor doesn't want to order the oxy. "because it is very strong" at this point I became upset and started to cry and basically told her I don't use the pain meds every day and I understand the doc doesn't know me and I understand his concern but I also would like to be able to function and live as normally as possible when I have flare ups, and I don't think that is asking to much, at which point she said no and she would relay this to the doctor, (do you think maybe he could have talked to me)???? I get a phone call back from her and she says he wants me to be seen tomorrow but not by him, and I ask why and she says "he doesn't understand why you are having so much pain and maybe he missed something" It is really hard for me right now,I so want to be sarcastic and really nasty even though she had nothing to do with it.He didn't lay his hands on me hmmmmm, wonder what he missed. So anyway I have an appt. tomorrow morning with yet another doc. I have been a nurse for 17 years and I have NEVER dismissed someones complaint of pain. I would love for him to feel this way for even 1 day. I really have no desire to see him again. What kills me is I discussed all of this with him and my concerns that we be on the same page and work as a team to get this under control. Am I just being a big baby???? Also do any of you get back pain when you get a flare up? I also have a history of kidney stones so it also may be that. Thanks for letting me sound off. I live in Connecticut do any of you have a urologist that you are pleased with in the Hartford area? Or anywhere at this point??
09-01-2004, 03:02 PM
I feel your pain. I really do. I know exactly what it feels like to try to get help from a doctor and have them tell you they do not understand. All that I can say is I am praying for you. I, not so long ago was in the same boat and contacted my internal medicine doctor. I got the pain meds I needed only 30 pills no refills but at least they did call something in for me. Do not give up, call your family physician if you cannot get anywhere with this doctor. I have now been on Elmiron for almost 3 weeks and believe it or not it is starting to work. I was pain free for 1 whole day yesterday and had only minimal pain today. Hang in there!
09-04-2004, 12:47 PM
Janna, I did call my primary and went in to see him the other evening. Thank goodness he is such a good listener and he was able to prescribe me 10mg of oxycontin every 12 hours as needed. I haven't taken it yet as I am s little paranoid as I've never used that med. I did stop the coffee again and it seems to help.He was in agreement that he would manage the pain end of it. The only thing I don't really understand is the pain doesn't last the whole day usually. so is it overkill to take a sustained release? Would it make more sense to take a short acting drug or should I just try this? I went back to work today (I'm a visiting nurse) I had a couple hours I was really uncomfortable and I would have liked to take something but didn't. Have you had to take pain meds while working? Thanks and have a nice week-end Tammey So glad to hear about the PAIN FREE day!!!!!!!!!
09-06-2004, 05:49 AM
I am so gla dyou were able to get the pain meds. I cannot manage without them. What I do, is when I start to feel uncomfortable and like the pain is coming on, I take one pain pill. Only when I feel the pain began. I personally have found if I wait too long even the pain medication will not work for me. I also am on something called Urelief. It is Priridim with an analgesic and barbituate in it. Sometimes I take it rather than the pain medicine if the pain is not too bad. I do take the pain medicine at work when needed. I wish I could say I am still pain free but I am not. Some days are great others are not. I have been toying with starting a journal of what I do or eat each day to try to find some sort of rhyme or reason to the flare ups. I just hate taking anything with pridium in it because it stains my underwear and I cannot stand the smell of the stuff. But, we have to do what we have to do. Hang in there and try to not use the pain medicine unless you absolutely have to, but at the same time, if you are hurting don't sit there and take it when you have something to give you relief. In your case, because you had to wait so long for something to help you I would take the pain med for a while to get you more comfortable and then start to only take it when needed. God Bless and I am so glad you were able to get help.
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