Recently Diagnosed with IC but don't believe it...

[NickiPage]

I have had some serious bloating in my belly since around June/July of last year--I mean to the point where I look bigger than during my pregnancy the year before! (just my belly though--no weight gain elsewhere and in fact have lost weight). Since around September I noticed a pain that has become gradually worse to the point of keeping me almost bed-bound recently in my pelvic area (I want to guess right above my cervix although I can't say for sure). It is dead-center below my belly. (It feels like it is high up inside me but not up in my stomach area at all.)

It is a really severe pain that does not go away at all--nothing relieves it--and then runs down the inside of my legs and up into my stomach at times--just so strong. The doctors did: 1) GI: Endoscopy/Colonoscopy, 2) Laproscopy, 3) Cystoscopy, 4) Ultra Sound, 5) CT, and just did 6) MRI (no results yet). My GYN Specialist has been wonderful and did the laproscopy/cystoscopy but found NO reason for the bloating! IMPOSSIBLE!!! I am sooo frustrated!!! It is NOT weight gain and it is NOT gas--which is what every doctor has tried to tell me. My stomach is HARD as a rock--harder than when I was pregnant. If I eat more than a few bites at a meal, I throw up--not because I am nausious but because I feel super full all the time (like when pregnant--which I am definitely not).

So, now the doctors said that I have IC (but can't explain the bloating). To make matters worse, I have a rash all over which gets much worse if I go outside for some reason--red spots--bad on my face and my soles of my feet and palms itch like crazy! Then I have lymphnodes everywhere that are really badly swollen (behind my ears-hard like a bone, under my arms, by my chest, and worst of all in my groin area). They also saw on CT lymphnodes where I should not have any in my stomach area--but the doctors can't explain this either. They tried antibiotics on me for months through the fall/winter with no change in symptoms/lymphnodes, etc...

At any rate, I am waiting on the results of this MRI as the oncologist said I might have myonoma or myoadenoma or myoadenosy or something--I can't remember--but feels that for sure I have IC. I go maybe twice a night and maybe every couple hours to the restroom (NOT that frequently compared to horror stories I am reading about) and yes, if I sneeze hard enough or wait to long I sometimes lose it (just a little)... but that is it for the urinary "issues" (NO bladder infection, UTI, etc.. etc...)...

Does this really sound like IC to you guys that really know and have lived with this for some time? Am I in denial or is there more going on? They have had me on pain stuff called Lortab and it didn't work and then Percocet and that is not really working either. Then they put me on Elmyron and said it could take a few months to "know" if it is working and I am just beyond frustrated. I find myself crying almost daily because I can't hardly move to play with my 15 month old son (the biggest delight of my life) and I am grateful to God for my extremely supportive and loving husband who had done everything in his power to help me physically, emotionally, with the baby, housework, doctor trips, etc... etc... but it hurts to be intimate and he has never complained but I am scared this could be hard on him too and I am just soo frustrated. I am working on my doctorate degree right now and have been so motivated in life to do things and I feel stuck to a chair or bed because I am in such severe pain and really NOTHING seems to ease it up.

I wake up constantly ALL night long with the pain--just feeling like its a sharp knife going deeper and deeper in and I don't know what to do anymore. I am trying to follow the UT diet already as my doctor is mandating (very strongly) and have a Urodynamics Test scheduled Tuesday and Physical Therapy right afterwards which I have to do now every week for a few months according to my doctor. I am in so much pain I don't want to move but I am trying to do what I'm suppose to because I have to get better from this. But what is physical therapy for something inside you??!!! It doesn't make any sense to me!!! And what is the urodynamics checking for cause I don't have any problems using the restroom?!

I am so confused, frustrated and I find myself just crying every day, every day, every day!!!!!! I can't take this much more and I am scared that the symptoms I am seeing for IC are not really what I am experiencing! Am I just not seeing this right? My previous history included a Pituitary Tumor (with 2 TSA's surgeries to remove it), Endometriosis, Osteomyelitis of my right hip, Severe Migraines on occassion (maybe every 2 - 3 months), Vomitting very often (almost daily), and severe Acid Reflux (diagnosed from Endoscopy). The only major findings the doctors have recently is that my potassium is too low at times (not always), my liver is slightly enlarged, and my nodes are swollen)... not too much else to remark on as far as "physical" symptoms they can see other than a "pregnant-looking" belly!

The pain is the real problem for me and I don't want a whole bunch of pills every day. I don't want to take anything if possible but also don't want the pain so need to know what I really need to take to get cured and what can I take to stop the pain being just as little as possible amount of pills. Can anyone PLEASE HELP ME?!!! I really need help soon!!!
Thank you!!!

[Linda May]

you can definately have severe pain with IC and also in your pelvic region.
When I flare my belly gets hard and sticks out some, but not real big. as soon as they get a definate diagnosis stick with the IC diet. try a warm pad on your tummy. If you do indeed have IC you and your uro will find a treatment plan that will work for you. Every icer is different DMSO works for me and others have Rescue treatments, then some icers just need to stick with the diet. Keep in touch this is a good place to get info plus we understand what you are going through. I hope and pray that you find the right treatment soon.

[NickiPage]

Thank you!

I really appreciate your response and it did cheer me up to know I am not alone. I am trying to switch over to the IC diet already (trying to choke down a "turkey burger" as I write)! I am not used to this and the hardest is giving up my coffee which is all I usually eat or drink all day until evening.... so it is a pretty big change for me to give that one up! I am willing to do all this if I know for sure that the doctors are right, but it is pretty disconcerting not knowing why they can't explain the bloated belly or the swollen lymphnodes, enlarged liver, or rash....

Thank you again for writing to me! I've been looking all day to see what help someone could give me with this!

[Briza]

Hi! Welcome to the board
The swollen belly is so common we have even coined a name for it--"IC BELLY." I dealt with it a lot. It was so bad that I was commonly asked if I was 6 months pregnant.
You might try switching to a half decaf blend and then phasing the coffee out gradually, which is what I did. Of course, it's much better if you can give it up right away but well, we do what we can do. I can tell you that coffee is a severe bladder irritant for many members here, and many consider the symptom relief well worth giving it up.
Good luck to you. Hope you find the support you need here.

[NickiPage]

Thank you so much for your encouraging words!

You really cheered me up and I guess I can flaunt my "IC Belly" proudly now! Everyone asks me when I'm due I look bigger than when I was ready to deliver my child! :-) It really sucks... but such is life. Does the belly go away if you keep up with the diet for a while? I would love to have my stomach back down to normal. It is sooo frustrating to walk around so swollen and feel just like when I was pregnant at the end--just swollen, sore, tired, and hard to bend over or get up! :-) I am happy to hear the diet helps so much. I am going to try your idea to cut the coffee with decaf. That is a really smart idea and I can keep adding decaf until I am down to just that...and hopefully then ween off coffee all together! I get bad migraines sometimes and lack of caffeine (which I'm pretty obviously addicted to) would trigger one pretty quick if I tried "cold-turkey". You really cheered me up tonight to have your support. Thank you!

[dyno]

I am glad they are doing all these test. One thing that struck me in your story is you said you have an enlarged liver and rash. Have your liver enzymes been checked?

I ask this because this has to be monitored with Elmiron. You haven't been on it long but your liver already has some issues going on.

Also if you do have IC, all that coffee you were drinking could cause a huge flare and the bloating and pain.

Just keep working closely with your Dr. and maybe get another opionion too if you aren't sure about what they are saying. Keep us informed as to what is going on.

[NickiPage]

Thank you Jolene!

I will keep you in touch! I really appreciate your kind words. Yes, my diet has certainly been a poor "IC diet" up until now (with all the coffee I drink). I did not know that about the Elmyron so I'll ask my doctor Tuesday when I see her next (about the liver enzymes). Does the IC also cause the enlarged lymphnodes everywhere? I am really hoping to get some relief from the treatments but she said it could take several months to see any improvement... Is that true? Thank you again!!!

[Briza]

Not everything you are describing sounds like typical IC symptoms. Pain, certainly, but vomiting is not common. I'm glad you're getting things checked out.

Here's a link to patient handbook. Lots of helpful information there.

http://www.ic-network.com/handbook/

[NickiPage]

Thank you Briza!

I will make sure to follow up with my doctors and follow their orders and keep asking questions. It has been very helpful for me to talk to all of you because I had not thought some of my symptoms were IC but confirmed that they were from all of you! I really appreciate all the help!!!

[cmclien]

Hi Nicki,

Welcome to the board! This is a great place to get information and learn about IC. You have alot going on! Just wondering if you have had blood tests for any autoimmune conditions like sjogrens or lupus. I only ask because of the rashes you describe that get worse when you go outside and the swollen lymph nodes and what sounds like gastroparesis (the vomiting and a very full feeling stomach). IC can be a manisfestation of sjogrens syndrome. I'm not saying thats what you have just wondering if this has been explored by your docs....

You might have more then one thing going on here including IC.

Coffee! ah so hard to give up. I am finally down to 2 mugs in the morning of 1/2 decaf, low acid coffee. There are low acid coffees that reduce the acid up to 50% or so, you can find them here. I have my diet down enough that I can feel it almost immediately. I take a bunch of calcium with it to buffer it which helps.

Elmiron can work slow or it can work quickly, it depends on the person and I think maybe how damaged their bladder lining is. Thats just my guess but the only thing I can figure out why its so different between all of us. I've only been on it a few weeks but can tell its helping. Others it can take 3mo, 6mo, 1 year but don't give up, eventually it works for alot of people

I'm sorry you're so sad, its upsetting to be diagnosed as having anything. No, IC isn't known to cause enlarged lymph nodes or some of the other things you are describing but definitely causes pelvic pain, frequency, urgency. Symptoms vary widely across us as a group with the same condition. Most people DO find treatments that work but it just takes time so hang in there and I hope you get the answers you're looking for.

[NickiPage]

Thank you Cindi!

You are making a lot of sense to me in what I am experiencing! I actually had a severe autoimmune reaction back from around January to June of last year where my arms and legs went numb, my ears were ringing, I was severely thirsty and couldn't stop using the restroom, and very dizzy. The doctors could not figure it out and said it was NOT post partum (I had a baby in December before that). They chalked it up finally to a reaction to the H1N1 vaccine I had previous to the episode but it did not align with typical reaction symptoms. They put me on steroids at the time which cleared it up almost immediately. As soon as I would come off the steroids it would come back and more severely. They finally hospitalized me and kept me on some strong doses of steroids (decadron in IV) and finally it just cleared up and has not caused me much trouble since (some numbness here and there in hands and feet but not bad). I did not think though that this could be related to the pelvic pain I am having now and lymphnodes... but when you said the word "autoimmune" it triggered the memory of all that because that's what they said at the time was that I was having an "autoimmune reaction of unknown etiology".... Does that sound like that syndrome you talked about or not sure? Thank you soo much for your help--all of you!!! I have a baby that turned 15 months today and I am so heartbroken and frustrated that I can't do more with him because I am so sick. I am tired all the time, achey, bloated, just in total pain 100% of the time... Thank you!!!

[Linda May]

I really appreciate your response and it did cheer me up to know I am not alone. I am trying to switch over to the IC diet already (trying to choke down a "turkey burger" as I write)! I am not used to this and the hardest is giving up my coffee which is all I usually eat or drink all day until evening.... so it is a pretty big change for me to give that one up! I am willing to do all this if I know for sure that the doctors are right, but it is pretty disconcerting not knowing why they can't explain the bloated belly or the swollen lymphnodes, enlarged liver, or rash....

Thank you again for writing to me! I've been looking all day to see what help someone could give me with this!

i tried to cheat one time and had two cups of coffee in a two day period and it put me into a flare. will not cheat again but, like you i miss my coffee so much.

could it be possible for you to have an allergic reaction to one of your meds? that might explain the rash.

[cmclien]

I'd ask to see rheumatologist

You are making a lot of sense to me in what I am experiencing! I actually had a severe autoimmune reaction back from around January to June of last year where my arms and legs went numb, my ears were ringing, I was severely thirsty and couldn't stop using the restroom, and very dizzy. The doctors could not figure it out and said it was NOT post partum (I had a baby in December before that). They chalked it up finally to a reaction to the H1N1 vaccine I had previous to the episode but it did not align with typical reaction symptoms. They put me on steroids at the time which cleared it up almost immediately. As soon as I would come off the steroids it would come back and more severely. They finally hospitalized me and kept me on some strong doses of steroids (decadron in IV) and finally it just cleared up and has not caused me much trouble since (some numbness here and there in hands and feet but not bad). I did not think though that this could be related to the pelvic pain I am having now and lymphnodes... but when you said the word "autoimmune" it triggered the memory of all that because that's what they said at the time was that I was having an "autoimmune reaction of unknown etiology".... Does that sound like that syndrome you talked about or not sure? Thank you soo much for your help--all of you!!! I have a baby that turned 15 months today and I am so heartbroken and frustrated that I can't do more with him because I am so sick. I am tired all the time, achey, bloated, just in total pain 100% of the time... Thank you!!!

Thats all sounds pretty scarey! I developed hashimotos thyroiditis after my daughter was born 12 years ago. At the time they called it postpartum thyroiditis but a number of years later I had the antibodies in my blood and had to start taking meds. I'd ask to see a rheumatologist if you are in an HMO or just go see one as they specialize in these types of diseases and could do bloodwork and see. Maybe it isn't an unknown autoimmune process anymore. Did they have you see one back then? Did they think you were done with it after the hospital stay and steroids? I think it would help to rule them out possibly since you have some systemic things going on. They can cause all kinds of symptoms, many of which you are describing like achey joints, fatigue, unexplained rashes that are worse when you go outside, delayed stomach emptying and many more. I of course am not a doctor, just think it might be worthwhile looking into this. Rheumatologists also can diagnose fibromyalgia, cfs etc.

[ICNDonna]

It sounds like you may have more than one thing going on. I hope the diet gives you some help. I have found that I can have one cup of coffee in the morning if it's a low acid coffee --- I didn't try it for a long time, but it does taste sooooo good.

I hope you get some answers soon so you can get on the road to feeling good.

Sending gentle hugs,
Donna

[NickiPage]

To Everyone Who Just Posted to Me!!!

Thank you for each of your posts! I think that you each have some real points in what you are telling me. I think to go to a rheumatologist sounds logical at this point since they never could explain my last springtime issue either (not really)... I don't feel that the rash is being caused by any meds as I am not on anything new to me (yet). I start the Elmyron on Tuesday after my first PT treatment and the Urodynamics test... the rest are all prescriptions I've had before (and only 1 medicine I am actually taking at this time just for pain which I had plenty of in the past during my 2 brain surgeries several years past) and would not explain why it seems like going outside of all things makes it worse. We do have pretty bad pollen here in GA but I never had a rash from it before--could that possibly explain that?! Anyways, I don't know how to individually respond to each of you (a little new to this computer thing) but my husband had encouraged me to look for a support group online and I am SO grateful that I DID!!! Thank you for the "gentle hugs" also Donna! They are very appreciated! Nicki