IC and Pain Survey - Please Help Us Understand!

Category: News
Posted: 04/13/2010 10:21:43 PM
Views: 2247
Comments: 17 [Read/Post]
Synopsis: Please help us understand the pain of interstitial cystitis! This survey is designed to gather more information on your experience with interstitial cystitis/painful bladder syndrome pain. The survey will not ask you for personal details. It is confidential. Your input will help us to better understand the day-to-day challenges of living with IC/PBS. Jill

Please help us understand the pain of interstitial cystitis! This survey is designed to gather more information on your experience with interstitial cystitis/painful bladder syndrome pain. The survey will not ask you for personal details. It is confidential. Your input will help us to better understand the day-to-day challenges of living with IC/PBS.

IC PAIN SURVEY

Comments on IC and Pain Survey - Please Help Us Understand!

alice

05/16/2010 10:56:57 PM
I have suffered from IC Pelvic Pain since early 80's, had numerous bladder/urethra expansion surgeries such as placing an stint into the urethra for the urine to pass more easily, had DMSO one time, but could not tolerate it, had bladder augmentation done finally in 95, now IC has effected me so bad I had no choice but to quit my job due to the fact I have to self-cath myself,the burning pain, the frequency,the inability to completely empty the bladder, the mucous plugs are terrible to deal with each and every day.

ICN RESPONSE: We are so sorry that you've had such a difficult time. If you'd like to talk, explore options, etc.. please call our support line or, better yet, sign up for a COACHING SESSION!

Cyndi

05/27/2010 10:52:57 PM
I have lived with this devastating pain for three years now. Every day revolves around my bladder and burning pain. I am NEVER free from pain. It goes up and down, I do have pain help, but it is never enough. I absolutely have to be careful with foods. But my whole pelvic area hurts, not just my bladder. The pain radiates outward and into my low back. My marriage of 23 years has been totally affected. I cannot travel anymore, and just daily living revolves around this disease. Of course before I was diagnosed I was humiliated by many doctors with that "its all in your head" attitude. I feel this disease came on after an abdominal operation for hernias. My abdomen is always swollen. Right now I am very depressed. I am in treatment, but my life is forever changed. I stay home most of the time. I used to love life so much. Now there is a permanent sadness. I can't even find a dietitian in my area who has even heard of this disease. I have gained weight, furthering my depression, and I am trying to lose it, but I eat a lot of starches as these seem easier on me. Wow! Never thought I would speak about this pain. It burns so much. Sorry for my depressing post, but this is my true life.

ICN RESPONSE: Cyndi... if I had your phone number, I would be calling you right now so that we could brainstorm. I have many things that I'd like to say to you.. not the least of which is that you are so brave right now. I'm so impressed that you've written this note and shared your pain because I, too, spent a year in devastating pain before I found relief. And that's what we need to find for you. I hope you will call me at: (707)538-9442. I would love to talk with you, review possible treatment options and try to figure out what is going on.

#1 - That your symptoms began after surgery is not unusual. Many patients report that but in the case of a hernias, we often have to wonder if the pelvic floor has been involved in some way. Is the pain localized where the hernia is?

#2 - The swelling in your belly is possibly what we call the "IC Belly"... it's not extra weight or fluid.. it's just inflammation and it comes and goes, often throughout the day. It's normal to wake up with a flat stomach and then look pregnant an hour later. As IC improves, so will that.

#3 - You say that you're very diet sensitive. That's a good sign that your symptoms are coming from your bladder wall. Are you being perfect with your diet?? No coffees, green teas, sodas, etc. Please make sure you have the 2009 IC Food List from our website.. it's the latest food list that you can and should use to fine tune your diet and remove any foods that could be contributing to this pain.

#4 - You can work directly with a registered dietitian through the ICN Coaching Service. Julie Beyer RD, the author of the Confident Choices diet book, offers Personal Coaching by phone.

#5 - It sounds like you're very frustrated and depressed... and who wouldn't be. We've all struggled with those feelings at times and it's really important that you have someone to talk with. If you aren't already, I encourage you to find someone in your town that you trust that you can talk with, preferably a counselor who works with patients who are struggling with illness or pain... or a minister.. support group leader. You're not alone and you don't have to be alone. There are people who genuinely want to help you. Please think about it.

#6 - I think you might be in Canada... and that's very challenging for some patients because many urologists up there are behind the times when it comes to therapies. Please make sure that you read through the Treatment Options on our main website ( so that you know what is currently in use. I'd like to know if you've tried the rescue instillations yet?? They were invented in Canada at Queens Univ. in Toronto and are now the most popular therapy out there ... used by clinicians around the world.

#7 - The other thing I would be very curious about in your case.. and given your hernia op... is the state of your pelvic floor. Is there a chance that this could be contributing to your pain?? Absolutely. We see that many patients struggle with both bladder wall tenderness and muscle tension. Have you had a pelvic floor assessment yet?? We have an excellent book called "Ending Female Pain" that I strongly suggest to patients struggling with pelvic floor problems.. as it provides many suggestions and stretches and exercises that you can do at home to relax your pelvic floor.

Hugs to you. My heart goes out to you... and so does my support. If you'd like to talk, please give me a call! - Jill

FRANCES

06/09/2010 01:53:30 PM
Four months ago I started having pains in lower back and bladder area. I was burning like I was on fire. Went to my medical Doctor he stated I had a UTI and he put me antibiotics that worked for a few weeks only. A month later I called my doctor again and he gave me different kind of antibiotic. Weeks later I went to a walk-in clinic and the doctor stated I still had an UTI.

I was given a different type of antibiotic but 4 1/2 months later was still in lots of pain . I went to the ER and the doctor stated that I again have an UTI and more antibiotics were given. I thought I was going to die and became so upset because no one could help me. I went back to my medical Doctor and when his nurse asked me why I was back there so soon it hurt my feelings so bad. I told my Doctor no more pain pills or antibiotic I needed to see a specialist so he set up an appt. with an Urology Doctor. I was tested and diagnose as having IC.

My treatments were 6 invl. dye treatments and 6 weeks of taken Nitrofurantoin and to come back in 6 weeks to see my Urology which will be this Friday..I feel better, sometimes I still have flare up which I am trying to determine how I can help control some of the symptoms. I am trying to stay calm, reading and learning about IC. Hope one day there will be a cure. Thank God because things could be worse.

ICN Response - Frances, thanks for writing. I am so glad that you found us and that you have an answer for your symptoms. I hope that you've found our regular IC Support website: IC-NETWORK.COM. You can find lots of information there about managing flares, treatments, diet and more! Remember, you HAVE to follow the IC diet to avoid irritating your bladder further. It's vital!

Roxanna

09/30/2010 05:35:23 PM
I was diagnosed with IC in April of this year, and this website has been a God send! Every single day I deal with the burning, pressure, and pain. I've long forgotten what it's like to have a decent nights sleep, because I am up every hour on the hour to go pee, sometimes more often than that. I dread every single time that I do have to go to the restroom, because it burns so bad that it feels like i'm trying to pass razor blades. I had a partial hysterectomy in March of 2005, and during the surgery, they cut a hole in my bladder the size of a half dollar, so I have alot of scar tissue from that. Now, my bladder is prolapsed, and actually drops so low at times that I will have to physically push it back inside. I also deal with Fibromyalgia, Degenerative Disk Disease, Degenerative Joint Disease, Rhuematoid Arthritis,SVT, and Wolff Parkinsons Disease. I stay exhausted all of the time, and the pain can get almost unbearable at times. I've had the hydrodistentsion surgery, and i'm undergoing my second round of bladder instillations now, but it still makes for a miserable day. I have to self-cath at least 5 times a day to make sure that my bladder is completely empty, because even though I pee constantly, I will only go a little at a time, and my bladder doesn't empty all the way. It gets so old hearing doctors say that they pain "isn't that bad", becuase it is! My husband and I have only been married for a little over a year, and romance has gotten up and ran out the door. Just the thought of having intercourse makes me shiver, because I know how much worse the pain will be. I take Lyrica & Baclofen, and I also use the Lidoderm Patches, but still, at times, the pain makes me want to curl up and go to sleep just to forget it all, then I have to make my hourly bathroom run! I dream of the day when doctors finally show some understanding of this crippling disease, and have better treatment options for the pain, infections, & over active bladders! Until then, I feel like i'm stuck in a rutt, with no one to listen or who even remotely understands what I deal with every day!

rhonda40

10/03/2010 04:07:40 PM
I am learning so slowley about IC I was diagnosed in the spring but I have gotten a wonderful uro/gyn. although this pain is crazy i have just had another bladder surgery recently and i am not sure if its the ic or post op pain

Sherry S.

06/21/2010 10:15:57 PM
I have had very test you can imagine and was always told the same thing.. UTI or kidney infection. This lasted for 5 years. I thought I was going crazy, I knew the pain was real, I knew the burning was sometime unbearable, but the doctors always made me feel like I was crazy. Then one day as I was sitting in the doctors' office for the upteen time, crying from the pain that seem to be much worse that day, he told me to go see my specialist, and she told me I had IC. There isn't alot of support where I live. I even had a doctor that I use to work for tell me that it wasn't a real diagnoses. And that it was only pain. I stay on my diet, try and reduce my stress , but I continue to have flare ups. Then I have to go and have the meds. instilled directly into my bladder. That isn't much fun either. I don't take the pain pills, but the pain is there everyday. I know this sounds like I am just complaining, but I am hurting emotionally and physically. It seems no one understands. I am grateful that what I am going through has a name, but where I live it might as well not. Thank you for letting me unburden myself.

ICN Response: ::::hugs::::: Rest assured that IC is not all in your head. Have you seen our video about that? SEE THE VIDEOS

Cathy J.

06/22/2010 07:35:26 PM
I started having bladder problems since birth. Lots of infections, and 3 day hospitalization. Things got worse as a teenager- and continued to go downhill from there. In my mid to late 30's, I was finally diagnosed with IC. Then, that Dr. moved, and all of the urologists where I live are horrible. I was in remission for a couple of years with Elmiron and Atarax- but it has flaired up terribly- along with Vulvadynia, and ulcers (sores) around my vaginal area, severe back and hip pain!! I found a specialist in Denver- and I hope and pray that he can help me- I am sick of Dr.'s telling me I'm crazy and its in my head.
Recently, my regular urologist said that my bladder spasms are so bad, that eventually, my bladder will get so hard that it will push up everything into my kidneys (which are loaded with stones- I've already had 3 surgeries for that) and I will go into kidney failure. When I told my mom, she stated that she already knew all of this- she said the Dr. in NY sat me down as a teenager and told me that this would happen. I told my mom that I was a TEENAGER- do you really think that I was listening- or even cared?????
Basically, my bladder has been a wreak all my life, and just continues to get worse- and I really hope that someone can help me. I can't even have/enjoy sex with my husband, because it hurts so bad- and he just does not understand- even when I try talking to him, and/or give him articles to read. I am so burned out!!!

ICN Response: I'm so sorry. Your story sounds so familiar because I, too had symptoms as a teenager. I think it's very hard to absord it all when you're a teenager... not only what has happened but also that it's happened to us. Emotionally I was a wreck only because I just kept asking "why me." But, with time and age, I've come to understand IC and that it's about being proactive, responsible and, most of all, just listening to my body and paying attention. Sending you hugs! - Jill

Linda uk

07/06/2010 12:05:08 AM
I came across your website last night - I am now desperate, going to docs tomorrow, again, after being on two different antibiotics for the last two weeks, they haven't worked. Lets see what they say, they found blood in the urine, the first time and protein, the second time, I also have had IC for about 20 years, and had a bladder prolapse last October, I then hemorrhaged, twice in one day, two weeks later, they said I had an 'infection', and I was really ill. They put me on Augmentin. Could this be causing the 'flare up', I'm having now? Explaining this condition to friends and family is very hard, as they don't really understand. Your comments would be appreciated. Thanks Linda x

ICN Response: You raised two different issues: 1) do you still have a bladder infection? If so, you need to have another culture and antibiotic sensitivity testing to confirm that the antibiotic you are using is the correct one for that specific infection. 2) Could the antibiotic itself be irritating your bladder? The answer is that antibiotics can be irritating sometimes but it's very individual. Your next step is clearly to get another urine culture to verify if you need to continue your antibiotics.

rocio s.

07/08/2010 04:53:59 PM
OMG! I was diagnosed with this disease about 6-7 years ago but I am glad and and thank god that my symptoms are not any closer to the symptoms that some of you women have. I feel so bad for all of you that have to go thru this every day. I got to say that my pain is bad and sometimes worst but not any close to the pain that you people describe. I hope that you all get better. I am going to start taking elmiron to see if my symptoms do get any better and I will change my diet. God bless you all and really really hope all your pains go away ;(.

Traci

09/23/2010 08:33:48 PM
I have been diagnosed with IC for about 5 years. My husband and I can think back to 15 years where I would go to the doc thinking I had an infection but didnt. I think I have had it since I was a teenager. My pain gets so bad that the pain meds dont always touch it. I just sit in a hot bath and cry. My pain is burning and pelvic pain. I also do not have a day without pain. My job is on the line due to missed days. I pray everyday that my children do not get this. I know how everyone on this site feels but it is nice to know I am not the only one.

It is very hard to even find docs who know much about this condition. I too have been told its all in my head. Thank goodness my husband is very understanding. The worst is that my children are still young and dont understand. I just wnat my life back. I am on so many meds that it has caused a financial burden. We have health insurance but the co-pays are still expenseve. Elmiron is very high, not to mention everything else.

Good luck to everyone and you are in my prayers.

Becky E.

08/14/2010 08:27:39 AM
I have had trouble for YEARS! I have had so many scare tissue surgeries for that is what I was told was the pain. Ten years ago, i had one that went hay wire and I ended up with a bag but thank goodness, I got that reversed. You can imagine the scare I had when the symptoms started back but worse and so my NEW dr. sent me to see an OB-GYN and he right off the bat said I had IC...He did the procedure and started me on my meds immediately, said it was the worse case he had seen. I have had to have 9 treatments, had been plaqued with UTI's for Years....It hurts when having relations with husband, and going to the bathroom all the time is annoying. I am struggling each and every day to figure out how to deal with IC. and find it comforting to come on here and read as much as I can take in. I thank you for this site. Still have alot to learn though so I won't have so many flair ups and in pain all the time. I would love some advice and help, need my husband to understand more right along with me. I am lucky I have the support that I do with him.

Teresa

08/14/2010 11:15:00 AM
I have had 6 laprascopic surgeries & 1 Hydrodistention surgery of the bladder. Now within the last year, I am still suffering with chronic pain. I just went through a 3 week pain management clinic (PMC) to help with coping with chronic pain. They took me off all meds and told me to breath like a baby by only using your belly, how to meditate, do yoga, tia chi work out and think positive thoughts and never mention the "P" word(pain). I have been on the IC diet without knowing it. I knew what foods/drinks caused harm and stayed away from them. Tomato's on the other hand I didn't think of. I have been very careful now of what I eat, for the past 4 weeks. I met 2 other girls who had IC at the PMC. They are the ones who turned me onto the IC Network. Thank God for that!!! I have learned so much thru this program. I am still suffering with symptoms and would love to have sex with my husband. I just ordered books from the IC Network and can't wait to get them. I just put in a new referral to see a Dr who specializes in IC. I hope our insurance covers it. Hopefully I will be able to get some relief and soon. I haven't been able to work, have fun or go on Vacation now for 3 years. I WANT MY LIFE BACK!!!!!

rosemarie

08/27/2010 07:26:55 PM
I am glad that my pain is not so bad as some of the people I read, I feel very bad for the ones that suffer so much, I¨ve had bad flare ups but in general I can manage my life with IC I feel very lucky about that. I am very thankful for this site.

Ken

08/29/2010 09:43:08 AM
I am a 46 year old male who only recently have discovered that I have IC or Prostatitis. The doctors really don't know.

The only thing they know is that I do not have an infection of any kind. However, I do experience pain in my bladder, urethra, and sometimes my testicles.

The fuller my bladder gets, the more painful it is. I also cannot wait to empty my bladder, it feels so much better after urinating. Sometimes I have the urgency feeling and have to rush. Other times it's like the good old days and I can go whenever needed, but not rushed.

I am a well controlled type 2 diabetic with mild high blood pressure. I take my BP medication regularly and I am on diet control only for my diabetes; I do not take medication for my diabetes. I check my BS regularly 2-3 times a day and I range from 70-145 on a normal day. If I am forced to eat out at a restaurant, my BS could go as high as 176.

Margaret

09/17/2010 12:10:04 PM
I was diagnosed with IC about 7 yrs ago. It is the worst pain I have ever felt at times. There are days when I just want to actually reach in and pull my bladder out. Sitting on frozen pea's at this moment to help. I have had an interstim implant for 2 yrs. I stay on the IC diet and am on Elimron and prosed. I also have fibromyalgia chronic pain from herniated back at least one at each level. I'm on a lot of pain medication and muscle relaxer's. I also have tarlov cyst, but no one in my area deals with them. I too can not have relations with my husband due to the pain. I can't walk too far, between my back pain and the pain from my bladder which goes all the way to the outside of my vagina. My vagina feels like it swells up and over my tail bone swells up. It's very hard to have IC, people really don't understand it when you tell them. All the infections, pain and isolation is very hard. I'm trying to learn all I can, communicate with my doctor's and not allow IC to have me. But there are those days....It's really hard.

ICN RESPONSE: We are so sorry that you've had such a difficult time. If you'd like to talk, explore options, etc.. please call our support line or, better yet, sign up for a COACHING SESSION!

Erika Pinto

10/13/2010 01:23:24 AM
I started having pain 5 months ago i was sent to a gynecologist, gastro, surgical, and urologist finally my ob/gyn finally diagnosed me with I.C I was told many things before i was diagnosed from "It was all in my head" to "I'm a drug seeker" the second one is basically all they would say to me. I have had 36 UTIs since age 2 and 4 kidney infections, I found out later that this was probably caused by me having so may infections. I have done many bladder installations which didn't help me at all the only thing that has helped me is physical therapy I recommend this to anyone that has I.C. What really makes me mad is no one had told me a list of things I couldn't eat I just found out I can't have cranberry juice and I have been taking a cranberry pill everyday because it is suppose to keep away UTIs

Tonya

10/27/2010 11:10:47 PM
Thanks to all of you for sharing your stories. I think we can all learn from each other.
I was diagnosed with IC last year, after years of thinking I was having UTIs and having the results turn out negative. I went to 4 urologists before I was finally diagnosed with IC.
I have tried Cystoprotek, accupuncture and of course the IC diet and so far not a lot better. I know the diet helps because if I eat or drink something that is on the bad list, I pay for it. I am now on Elmiron because my Dr didn't think I gave it long enough to work before, so I'm trying it again. Hopefully it will help...if not we'll go to plan D.
Most of time the pain is tolerable but some days I can barely walk. My pain is mostly urethral pain and sometimes vaginal. My bladder usually doesn't hurt unless it fills up, which I don't usually let it get to that point. I go to the bathroom 20-30 times a day on a good day and it can be double that if there's a lot of pain and inflammation. I really wish there was an easy fix to this...

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