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catlady13711
September 7th, 2008, 7:46pm
There seems to be a few of us here that have Interstitial Cystitis so I figured a group for us would be good. Please check in if you have been diagnosed, or think you may have IC, or have a family member/friend with IC.

I'll share my IC story after we get some members here.

Wishing a painfree evening to everyone!
:grouphug:

fairiebabe
September 7th, 2008, 7:55pm
Here's my drama with IC, I was having terrible pain thinking it was woman problems I went to the GC and got a D&C and all that crap. So then I started checking my urine everyday (i'm a nurse) I always went to the bathroom a lot and never realized it was not normal. finally is went to the urologist and they sent me in for the test where they overinflate your baldder. Told I had IC and was given oxybutin, elavil and something else(can't remember off hand) and sent on my way. Then I had to see a new Doc and he only said the oxybutin and elavil and that's it. They have no idea what to do and the pain is awful!! I really don't take the elavil because it makes me zombie like! I wish they would give pain meds!!

laurenk503
September 7th, 2008, 8:11pm
I'm so glad you started this group!!

I have been having problems with my bladder for years. I also thought it was "women" problems. They couldn't find anything wrong with me and told me I might have endometriosis but they can't see it so it might be hidden? I have NONE of the symptoms of endometriosis really and I don't see how that has to do with my urinating frequency, extreme pain at times, etc. I kept telling the dr.'s it was my bladder - that is where the pain is!

Well, FINALLY the dr. mentioned interstitial cystitis last time I went for my ob/gyn exam. I was crying and told her I cannot TAKE suffering like this! There is pain and pressure in my bladder. She looked at my chart and my complaints go back as far as 7 or 8 years ago!

She gave me a pamphlet about IC and what foods/beverages can irritate your bladder. I have good times and bad times and when it is bad it is BAD! It's almost crippling where you just want to lay on the couch in a ball and not go out. Then, if I drink even one bottle of water at work I pee like 12 times! Your bladder hurts immediately until you go. Thank God I work by myself upstairs because that would look really wierd! What do people do? I also don't drink as much water as I should because I'm afraid I'll have to pee a lot.

I am scheduled to go to a urogynecologist who specializes in bladder conditions and hopefully he can diagnose me whether I have it or not. I seriously think I do. I called his office and the secretary said he is not taking any more patients right now and is booked all the way through October. She told me she would send me paperwork and as soon as I receive it to call and book an appointment or I'll never get in! I'm going to call my dr. tomorrow and see if there is any way she can find me an appt. or a different dr.

This really has affected my life - noone can understand the pain when it is all flared up. Plus, a lot of Dr.'s aren't informed enough which means going years and years without a diagnosis! When I complained to my dr. about painful sex (not to get too personal) she thought it was in my head because I wasn't happy!!! I kept telling her it wasn't - so frustrating!

Also, my aunt has interstitial so bad and it went untreated for so long that she may now need to have her bladder removed - she has tried everything and is also on pain meds - which help it ot be bearable. She actually wanted me to take part in a study they are doing to see if it is a gene that may run in families. I didn't do it at the time and now I wish I did!!!

Anyway, I would love to hear other's stories, how they cope, etc. I go about living my life and have kind of just learned to live with it.

I also hope everyone has a pain free week! ~ Lauren

kismet
September 10th, 2008, 3:03pm
I am sorry that you have developed IC. I have been diagnosed for about 3 years. Before that I just weathered through what I thought were bladder infections and the weakest bladder on planet earth. I am one of the lucky ones who has the pain under control with diet, elavil, prelief, and baking soda. The first two years I drank the baking soda 2xs a day (1 teas each time) and also took the OTC supplement Cystoprotek by Algonot. That was a bit pricey and I will never know if it was the diet or the supplement that helped. I was also very very rigid to my diet. I never put anything in my mouth that was not on the totally safe list. The last year I have been venturing into the maybe list and was doing OK until the soft fruit started ripening here. The peaches, nectarines and melons have been a mistake. I can feel an IC flare heading my way so I am off the fruit (except pears), on the strict diet and baking soda. It is in no way worth it. The things I absolutely will not eat are: coffee/most tea, cranberry anything, citrus anything, tomatoe anything, anything w/vinegar in it, and alcohol -especially wine. I have put a few links here for you about diet. If you google IC you can get lots and lots of information. I found all of the books that I wanted to read in the library. Good luck and I hope that you, too, will be able to get relief from this. :highfive:




Basic diet information:
http://www.ichelp.org/PatientInformation/TreatmentOptions/Brochures/Diet/tabid/247/Default.aspx
http://www.mayoclinic.com/health/interstitial-cystitis/DS00497/DSECTION=lifestyle-and-home-remedies



[SIZE="2"]Best book I read and it was in our regional library. My doc recommended it. Most of the books can be found at the library.
http://www.icnsales.com/Interstitial-Cystitis-Survival-Guide-p-20.html
[/
Best network and organizations.
http://www.ic-network.com/

http://www.ichelp.org/

catlady13711
September 14th, 2008, 10:00am
Hi Ladies!

Im sorry ive not posted more here but ive been feeling really bad lately and havent done much of anything. My IC is flared right now, on top of the kidney stones bothering me so that just makes for a bad day. Im gonna try to post a little more today once I get myself feeling better... the mornings are the worse. :(

Wildfire
September 14th, 2008, 10:05am
I was diagnosed with IC in 1984. I remember going to a support group when I was first diagnosed and it was so comforting knowing I wasn't the only one with it. Hugs to all who also suffer with IC.

laurenk503
September 16th, 2008, 9:32am
I have a Dr.'s appt. this morning with a urologist - wish me luck!!

kismet
September 19th, 2008, 1:15pm
I have a Dr.'s appt. this morning with a urologist - wish me luck!!

I hope everything went well at the Urologists and that you can get a bunch of tests and some answers. :smile7:

kismet
September 19th, 2008, 1:26pm
I was diagnosed with IC in 1984. I remember going to a support group when I was first diagnosed and it was so comforting knowing I wasn't the only one with it. Hugs to all who also suffer with IC.

I have thought a lot about the people who have had IC for decades. The bottom line for me is that I really owe you guys a whole lot. IMO it was you who struggled with it without any real help allowing the IC to advance beyond repair, who came up with the diet, and who raised that medical knowledge and understanding so that people like me have been diagnosed early on and that hopefully will keep us from advancing beyond repair. :twoclap:

laurenk503
September 19th, 2008, 2:32pm
I have thought a lot about the people who have had IC for decades. The bottom line for me is that I really owe you guys a whole lot. IMO it was you who struggled with it without any real help allowing the IC to advance beyond repair, who came up with the diet, and who raised that medical knowledge and understanding so that people like me have been diagnosed early on and that hopefully will keep us from advancing beyond repair. :twoclap:

Great post kismet and I agree!

My aunt suffered from IC for many, many years before getting a proper diagnoses. She know has to get her bladder stretched out frequently, has had surgeries and may even have to eventually have her bladder removed. She has helped guide me so much and I am thankful for her and like you said all who suffered undiagnosed for years.

My Dr. actually referred me to a different urologist then the one I just saw. This Dr. didn't even take appointments until I waited two months and then when I finally got an appt. I would have had to wait another two months until the end of November.

My aunt called her DR. and thankfully he takes my insurance. He took me the next week! He talked to me a little, gave me a quick exam and put a catheter in me ( I think to measure how much urine was in my bladder.) I drank a quarter of a bottle of water, had to pee. A few minutes after I peed they needed a urine test from me. I could go again and then when right before he came in to put the catheter in me I had the urge again! My aunt told me not to go though so I didn't. She explained to him how much water I had and how bad I had to go again. It bites and it hurts!

He scheduled me for a CT scan (I have to drink the dye) this coming up week and then another two tests the week after that (cystoscopy & diagnostics).

He is right on top of things and I am so grateful for my aunt's help. Hopefully in three weeks I will have some answers regardless.

The pain has always been my bladder and I am so po'd the dr.'s never believed me an diagnosed me with everything but interstitial! More Dr.'s need to be updated and aware of this horrible painful disease. It has caused me depression and affected my life.

The dr. also gave me pyridium and something that begins with an S. I haven't tried it yet but probably will this weekend.

This group is great! It feels so good to not be alone. If I don't have interstitial I will be shocked but either way at least I'll know!

kismet
September 19th, 2008, 2:39pm
I am so glad to hear that you have a great doc who is moving forward to get you some answers and relief :jump:. Will keep you in mind and sending you healing energy daily. I wish I would have had someone like your Auntie to walk this walk. It would have been so much better.

Wildfire
September 19th, 2008, 3:17pm
I know I must have suffered with IC since childhood. My going to the bathroom all of the time caused alot of family problems. Vacations, etc. My parents always kept a coffee can in the car all the time in case I had to go. I didn't find out I had IC until I was 24. I had a minor car accident and hurt my back. Dr sent me to a urologist who found cysts in my bladder. While he was removing the cysts during surgery is when he discovered I had IC. After all the years people thought I was crazy when in fact I had a real disease. Dr said my bladder was 1/4 of the size of a healthy adult bladder. No wonder I had to pee all the time!

I have been thru all the treatments possible and nothing has worked for me. I have learned to control my fluid intake so I can somewhat function when not around a bathroom. I still have sharp pains go thru my bladder but most of the time it just aches.

I hope all of you are able to find a treatment that works for you. What works for some might not work for others. Hang in there and don't give up!

With continued research on the disease hopefully Dr's will find a treatment that works or better yet a cure.

Wildfire
September 19th, 2008, 3:22pm
I forgot to add that people with IC have also been found to have fibromyalgia. While I haven't been diagnosed with fibromyalgia yet I am sure I have it. I have all the symptoms. Also with IC most people have IBS. This too I have. It's a complex disease with no real answers.

laurenk503
September 19th, 2008, 4:53pm
I forgot to add that people with IC have also been found to have fibromyalgia. While I haven't been diagnosed with fibromyalgia yet I am sure I have it. I have all the symptoms. Also with IC most people have IBS. This too I have. It's a complex disease with no real answers.

OMG! That is so wierd because I got diagnosed with IBS also. I don't have the (not to be gross) diarrhea part of it but sometimes do not make a complete bowel movement (make any sense?) Wow a little TMI here - huh?

I have to say that I'm pretty sure with the fibro too. I am constantly in pain not as severe as some people sound but almost achy and like I've been beat up is the only way I could describe it, headaches and constant fatigue. Caffeine has not effect on me except to cause a flare up of pain in my bladder.

I do believe they are all related and I wonder why dr.'s aren't aware of this (not all but many). I've been complaining for quite a long time about being in pain (mainly neck arms, thighs, shoulder area) - my Dr. said it is stress and to walk more. I try!

How do I get her to check me for fibro? I'll have to ask my aunt about that also because shes has the fibro also.

It's so good that we can all share information because just that alone has helped me! Hope everyone has a good night!

Wildfire
September 19th, 2008, 5:04pm
Some dr's theory on ppl with IC suffered from Mono as a child. I too had mono as a child. It's seems to be hard to get a diagnosis for Fybro, my Dr just dismiss it as stress, or something else. I ache every day, and like you said, feel beat up. It is so great that we can compare notes and encourage each other. The not knowing can drive you crazy!

kismet
September 19th, 2008, 6:53pm
I have IBS too. Can't travel w/o Immodium. We just went on a casino run that included some new territory. I fretted for days about the new territory. I don't go anywhere that I don't know where the potties are and how far apart they are. :worry: I don't have Fibro but was really glad to hear that they have come up with a drug to help.

laurenk503
September 23rd, 2008, 9:05am
I'm going to get a CT scan now - had to drink the oral contrast and then they are going to put the dye into me to check internal organs and structures in my abdomen and pelvis.

Next week I have hte cystoscopy and diagnostics.

Either way hopefully I will have some answers soon!

kismet
September 25th, 2008, 3:24pm
I hope that you got through the CT scan okay without any glitches. Will be thinking about you and sending energy for next weeks round of tests.

laurenk503
October 7th, 2008, 8:11pm
Thanks kismet! Well, last week they did the dyno test on me and it showed my bladder spasmed.

Today I went for the cystoscopy and the potassium test. I was in AGONY!! That test really s&*ks. He first put in one liquid that didn't bother me the second one was about an 8 on a pain scale!!! I almost jumped right off the the gurney thingy I was laying on!

My aunt was there holding my hand THANK GOD. He diagnosed me with IC. I was all cool and calm until I got home and it hit me.

After over 7 years of complaining and being told it was "in my head" "psychological" maybe unseen endometriosis, IBS - I FINALLY got diagnosed!!! All along I have been telling Dr.'s the pain is in MY BLADDER!! All they would do is test my urine and then tell me I did NOT have a UTI. That was it and IC was NEVER mentioned.

I cried a little when I got home but more about the relief that now I can try these meds and start to have more good days again.

It's been a rough month between the myofascial thing I have going on in my neck and arm and this - really, really wierd. All having to do with spasms. I read more about the myofascial pain and it mentions the muscles around your eyes can spasm causing "double vision" how wierd is that. I also had a problem with that about 6 months ago but it only lasted a few days. Freakin' wierd how things are connected.

Well, I feel a little better now and at peace with it. Things could be so much worse and I am just grateful.


I'm tired - g/n all!

Wildfire
October 7th, 2008, 8:39pm
Oh man that test is rough, I almost passed out from the pain! I'm glad you finally have an answer. Just knowing helps so much. I wish you much luck in your IC journey. :hugs:

laurenk503
October 7th, 2008, 8:49pm
Oh man that test is rough, I almost passed out from the pain! I'm glad you finally have an answer. Just knowing helps so much. I wish you much luck in your IC journey. :hugs:
Thank you so much. :hugs: How are you doing with it?

kismet
October 11th, 2008, 2:27pm
Thanks kismet! Well, last week they did the dyno test on me and it showed my bladder spasmed.

Today I went for the cystoscopy and the potassium test. I was in AGONY!! That test really s&*ks. He first put in one liquid that didn't bother me the second one was about an 8 on a pain scale!!! I almost jumped right off the the gurney thingy I was laying on!

My aunt was there holding my hand THANK GOD. He diagnosed me with IC. I was all cool and calm until I got home and it hit me.

After over 7 years of complaining and being told it was "in my head" "psychological" maybe unseen endometriosis, IBS - I FINALLY got diagnosed!!! All along I have been telling Dr.'s the pain is in MY BLADDER!! All they would do is test my urine and then tell me I did NOT have a UTI. That was it and IC was NEVER mentioned.

I cried a little when I got home but more about the relief that now I can try these meds and start to have more good days again.

It's been a rough month between the myofascial thing I have going on in my neck and arm and this - really, really wierd. All having to do with spasms. I read more about the myofascial pain and it mentions the muscles around your eyes can spasm causing "double vision" how wierd is that. I also had a problem with that about 6 months ago but it only lasted a few days. Freakin' wierd how things are connected.

Well, I feel a little better now and at peace with it. Things could be so much worse and I am just grateful.


I'm tired - g/n all!

I am so sorry that you had such a terrible time w/the Cystoscopy. My Uro did it in the hospital and put me under for it. I can't imagine having that done and being awake. :cry: It is a mixed bag when you get diagnosed. Sorry to have it but knowing that now you can get some help and healing. I hope that you can get some relief not just from the IC but the other issues you are facing. :hugs:

Wildfire
October 11th, 2008, 2:31pm
Thank you so much. :hugs: How are you doing with it?

My biggest complaint the last few days has been frequency. I gotta stay close to the potty!
I hope you are doing well. :hugs:

noelleray
October 17th, 2008, 11:39am
appreciate reading these posts,i have a new guy friend who has told me he was diagnosed with this several years ago,gave me some insight into it beyond what i found during a google search.

Vicky
July 30th, 2009, 1:04am
Hi everyone. I'm one of the unhappy life recipients of the mysterious IC as well. IBS, Fibro, and severe IC. I went forever without a diagnosis and thought I had cancer. IC has been compared to cancer pain. Well I don't take any of the experimental pharmacy drugs. I do use the herbs recommended on the IC network. I couldn't really tell you that they work but it makes me feel like I'm doing something. Best to all of you. :hugs: