Hi i'm new here.....please read my story!

[Emma's Mommy]

Hi everyone i am new here and nw to IC. I have not been diagnosed yet b/c my urologist wants to wait until after my bladder scope just to be sure. He has ruled out everything else that could be causing my pain, but dosn't want to start me on a lifetime of meds until he is as sure as he can be. He has also been working with my OBGYN to manage my pain and emotions as much as possible. I was a WRECK when i first went into his office, i was crying, tried and in sooo much pain!!! I have been on percocet as needed for pain for about 2 weeks now, and have changed my diet following the IC smart dieat guidelines and have been feeling better. I still get pain almost every day, but i think that is b/c i'm not sure what i can eat, and what i can't eat, and what will upset me and what won't be so bad. It was also suggested to me to try prelief which i havn't done yet b/c i don't really want to take any more pills that i don't know will work or not.

I am a stay at home mom and my daughter was born just over a year ago. It was shorty after she was born that i started having some very minor IC symptoms but it was only every once in a while and i could manage the pain myself and i thought it was normal to have some bladder and urinating discomfort after having a baby. it was in Feburay of this year when is got REALLY bad and i was in PAIN every single day, all day, and nothing would make it go away....and that is when i went to my OBGYN and started, what would turn out to be, several rounds of antibiotics that never worked, and only made me feel sicker.

this has been really hard on my both physically and emotionally, no one REALLY understands what i'm going through and i wish that people would pretend that they did. i get sooo frustrated sometimes b/c i HATE sitting at home, and whenever i do make plans to do something i am having a flare up and either have to cancel, or put on a happy face and basically torture myself. I don't know what's worse, the pain, or the frustration because this has taken control of my life. I can't eat the things i like (i am addicted to hot sauce) i can't do the things i enjoy b/c i always end up in pain afterwards....even a simple walk around the block turns into hours of pain afterwards. I have been struggling for a year to lose all my pregnancy weight and just when i thought i was making progress i started getting more flare ups and now i can't even exersize at all....b/c i know it will put me in pain afterwards. :cussing:

I am just hoping that this surgery will help, and i can get back to a semi-normal life. My husband is working 2 jobs right now and never gets to see our daughter b/c i wouldnt be able to handle the physical demands of a job, and would end up getting fired for calling in sick b/c i was having a flare up day....b/c lets face it, unless you have this problem u can't understand how bad it really is....and how much it controls your life :toilet:


sorry this turned more into a vent than an intro but that is me right now, angry and frustrated all the time.....i am open to advice if anyone has any that might make my life a little less frustrating right now! :bow:

[Sher E]

I'm sorry you are feeling so bad. I'm a newbie too and not really diagnosed yet either. Put it this way, I've broken down twice today in tears because I just want my life back like it was 3 months ago!

Be patient. The wonderful women here will respond soon. Start reading around the other message boards and you can find some great info. Maybe your Doc can give you some Ditropan for he urgency and pain. It's helped me to have the bladder calmed down at least while we're waiting for the next step.

Drink so much water that you feel like you're swimming in it.

(((hugs)))

[Emma's Mommy]

thanks for the kind words....i know exactly how u feel.....i really hope that it gets better from here....i don't know how it could get any worse!!!

i am having a flare up right nowm which is what made me decide to visit this wed site that was listed in the back of one of the books on elmiron my OBGYN gave me. Everyone here seems soo nice

i'm really frustrated i got my daughter all ready and went to the mall hoping to get some new spring clothes when hubby got out of work (he works part time at American eagle) and sure enough i got a flare up and had to come home, empty handed and in pain. this always seems to happen to me when i want to just get out of the house and be NORMAL!!!

I'm only 24 years old i don't understand why this is happening to me.....i didn't pee this much when i was pregnant!!!!

I try to keep a good mindset but days like today make it frustrating.... :cussing: but i'm sure you know how i feel......

someone please tell me it gets better

[Dixiefireball]

:hi: and :welcome: to the ICN family. I'm so sorry hon your suffering so, but honestly it does sound like you have found the right uro. one who listens, cares, understands!! Your so lucky in that department. So many get told over and over its in there head.
but its very much REAL!

I hope the surgery helps you also some people do go into remission after the hydro/c. I'm assumeing that is what your talking about, and that is the only fully way of telling if you have IC and how bad it really is.
it depends on the person if remission will happen the healing time etc.
after your dx. your dr. will most likely start you on Elimon, and try some bladder installments. It may take a bit to find the right meds and sadly there is no ace in the hole so to speak and it will take time to see an improvment with any treatment but please give each treatment time to work to see if there is an improvement.

as far as the diet goes yes that is also hard in the beginning but so worth it hon. after a while on the diet you will be able to start adding some things back to your diet after you find your trigger points.
pelief is so worth it. really its not another medicine its more like baking soda. it will help take the acid out of foods, drinks so you can have them. it doesn't work all the time because some foods are just to acidy but does help.

some other things if you haven't already tried can help. heating pads or an ice pack (which ever feels best to you.) one tsp of baking soda to an eight oz glass of water. drink fast nasty!
i would rather take a perlief before hand, but if a flare happens afterwards the baking soda and water helps. you can try the reg. tums also this can help instead of baking soda and water.

Please read the patients handbook granted it a lot to read but so very wroth the time. www.ic-network.com/handbook

We are here for you and you did find a place where people do understand and care. If you happen to lose the patient handbook link you will be able to find it at the top of the page later.

sending you hugs and prayers and please keep us updated on how you are.
Rhonda

[vivig14]

i love the name choice for your daughter. so pretty!

sounds like you have some caring professionals, and that's good. I have to be quick with my reply, b/c i just wrote you a longer one, and it kicked me off:(

has there been any talk of seeing a specialist such as a Urogynecologist? Also, I'm in Chicago but recently went to a workshop sponsored by a local hospital's pelvic and abdominal health center. i've never had children, but they had a whole segment on how childbirth can lead to problems with the pelvis, organs, and muscles. another thing to investigate is a good assessment by an phys tx who is experienced in working with post-birth moms.

also in NY at Long Island Jewish Medical Center there is a center specifically for IC. You might want to check out their website. There is a famous doc who started it, and wrote THE BOOK on IC.

Also, one more suggestion that could really help you out in the interim, has any doc suggested an anti-anxiety med? it's a group of meds in the class called the Benzodiazepines. this could really help with pain believe it or not. the urinating, i don't know what can be done in the short term, but i'm sure you will find some answers here or in your other research.

it'll get better. The IC diet really helps, and you'll get into a groove and routine with it, and you'll feel better i think.

hang in there.

[Emma's Mommy]

My urologist wasn't so nice and caring at first......the first time i met him i cried the whole time i was there....he insisted on taking a urine sample via cath. even though i had already had 3 that showed no bacteria.....it was a very painful procedure.....i screamed the whole time and almost jumped off the table in pain...and he gave me NOTHING to help with the pain management....he just put me on AnOTHER antibiotic that just made me sicker..the pain and the side effects from the antibiotics i was on got so bad my hubby came home from work early one day and i was in the bathroom, in the dark laying under a towel from the caffene withdraw and the bladder pain....that my hubby called the urologist and he told him to take me to the ER.

There were a ton of people there but i got in pretty quick b/c i was crying in pain and told the triage nurse if he didn't get me in i was going home to die of pain..i was screaming and crying and in a wheelchair b.c i couldn't walk...the guard, my mom and husband had to carry me back in kicking anf telling them to just take me home b.c i refused to go back and wait for 6 hrs in pain....then they got me right in

buy anyways the hospital i went to was not the hospital my urologist was on call at (sence that hopital was almost 35 mins away from my house and this other one was closer) BUT my OBGYN was on call (same hospital i had my baby at) so he took over my care for the evening and the next day when he called to see how i was doing (see how nice he is) we had a nice long chat about how much the urologist was really rubbing me the wrong way....

so basically i still had to go back to the urologist but i think my OBGYN had a nice long chat with him about improving his bedside mannor....and that when i said i was in pain then i must be in ALOT of pain....b/c i hardly complained at all durring my pregnancy, and my OBGYN and i have a very good relationship he is the BEST very caring and really takes the time to listen to his paitents and make sure they are emotionally OK.

So ever sence getting my OBGYN involved (and he is still involved even though he is not treating me anymore) my urologist has been alot nicer, and alot better about managing my pain and making sure i am as comfortable as possible!

[Dixiefireball]

I'm just glad you had one good Dr. on your side. It does truly make a diff. My uro wasn't at first to nice either. He was the one who dx. me etc, but he didn't believe icer could hurt as bad as i said I did. He also didn't believe icers could progress either. (i'm one of those small percentage that did :( . ) plus have those painful hunners on the bladder. that is something your dr will look for in the surgery also.
but after I was admitted to the hosp. for five long days because he didn't listen to me in the beginning. My ic did progress etc and he seen it for himself he said he never would let me make another heel out of him and he hasn't that was over four years ago. I was dx back in 00. he said i had it for many year then and just didn't know it.
sometimes it take making a heel out of them before they will listen that is sad but true in many cases. i'm so thankful that your gyn was on your side. he was surely a God sent to you.

I wanted to let you know that Julie Beyer is a ICER and a RD.
she wrote a book called Confident Choice its the best book I've ever read on customizing the I.C diet. you can get it from the ICN shop here in the book you can learn to Determine your personal trigger foods, modify your diet without compromising nutritional status, Sort out the facts about nutrition supplements.
the book also includes Food intake diary, voiding diary, menus, grocery list, recipes, resource list, patient stories.
I read that off the front of here book but its all true!
there is place in the book you can write in. the recipes are GREAT. the stories are from many ICERS here. i believe its is the right link you can visit her site at www.NutraConsults.com/confidentchoices.html She is a great lady and gives great advice her on the boards too.
Just thought I tell you about her book so you could look into it. I wish it had been around when i was dx it would had made the diet a lot easier for me. Julie also has an email address you can click on from her site or you can p.m her from here. She will give you friendly advice.
hope this help a bit.

i'm sending you prayers for that flare to settle down so you may get some rest tonight. I'm going to sign off now so good night I need to go fix me a bladder treatment.
Rhonda

[TheMoonandBach]

Hello and welcome- I understand how you are feeling. i have had ic for about 3 yrs now, but have only been dx for about 3 mo. just hang in there... IT WILL GET BETTER!!!! i have changed my diet... and all the meds, except for elmiron. but it will get better and easier. i understand about the job thing... look at jobs and you will see what i am talking about... anyway, good to meet you, but sorry for the reason. love--Heather

[ihurttoo]

Hello, and Welcome! I am sorry we have to "meet" under these circumstances, but I am glad you found us. You will find many kind and supportive people here. I know it can be cold out in there world, but you can always come here to warm up. There is a very kind woman right there in your town. Her name is Kara Reese. She is a member of this site. Her screen name is Kara29. I hope you will pm her for advice on help in your town. She is familar with most, (if not all) of the urologists and hospitals there, as well as the pain clinics. She can also put you in touch with the IC support group in your area. She is close to your age, and a very kind person. I believe you will find a great source of strength and support in her.I want to address a few of your concerns. Since the others have covered most of the other things, lets start with your weight. I realize that this is of great concern to you. However, I want you to know that should you become d/xed with IC, several of the meds we take actually cause weight loss in many ICers. Elmiron is the main med that is prescribed for IC. If you are d/xed, you will most likely be prescribed this med. It has caused weight loss in a great many of the ICers who are on it. Also, if you seek help for your depression, many of those meds have a side effect of weight loss too. I know that Wellbutrin and Topaman are both notorious for this side effect. Also, following the IC diet cause many people to lose weight. There are many reasons for this. For one thing, giving up sodas alone can cause weight loss, because of the calories in the sugary ones, and the sodium in the diet ones. (The sodium causes water retention.) People also lose weight from IC because the IC diet is not exactly tasty, particularly in the beginning when you are having to giving up so much!Moving on, another thing that I want you to know is that most people who are on this board at this time, are the ones who are new, or in an IC crisis, or are just popping in to ask a question. There are far more people who have IC who are no longer on the boards because they got diagnosed, found treatments that worked for them, and are out there living there lives, not bothered enough by their IC to have to come here anymore. It is quite possible that you become like one of them. I am so glad that you have started the IC diet. This has been such a huge help to so many of us. I hope that your surgery puts you into remission, and you will be feeling better soon. Sending hugs your way! Amy :grouphug:

[ICNDonna]

I'm glad you found the IC Network. You'll find a lot of information and support here.

It sounds like you have found a uro who is on the right track. And once you have a definite diagnosis, you can begin some treatments to help get your bladder under control so you will begin to feel better.

Warm hugs,
Donna

[jen48446]

I'm glad you found us too!! I don't have the IC pain but I had the urgency before I started taking the supplements that I do now, I had urgency with all the prescription meds I took. Feel free to PM or e-mail me for support, I'm unemployed & looking for a job so I'm on line a LOT!! :grouphug: :welcome: :angel:

[emilyrose197377]

:welcome: to the ICN. I am glad you found us . you will find alot of support and info about ic on theis website.

[littlemyrn]

Welcome, sorry you had to find us though. I know it is difficult to keep positive thoughts, I was dx 2 years ago, but have had symptoms for about 14 or so years. It took the right internist to see it. My first uro, I thought at the time was great, she did the hydro/cysto and we started treatment. Elimorn, Atarax, instill, physical therapy, so on, but I was in pain daily, usually all day, I would cry and they never gave me anything for pain management, got fed up and switched drs., my new one is soooo wonderful, she calls me, not her nurse, she cried when reading that I was never given pain meds, my ic pretty bad, lots, lots of blood in urine, so now I go in this Thurs, for my second hydro/cysto, and she was so honest, she said you will hurt like He.. for a couple of weeks, but I will not let you suffer. So if for some reason, you don't feel like you are being treated fairly, search out for another uro and maybe a good internist, that wouldn't mind helping you. Welcome!!!

[BigFig]

Hi Erika (Emma's Mom) and :welcome: to the ICN. Glad you found us. You have found a wonderful place to gather information. I am so sorry you having a tough time, sounds like things are getting better after your Gyno's "little talk" with your Uro. Sometimes that's all it takes, why in the h** they don't take our word for it is beyond me. But, at least your getting the help you need now.

Be sure to check out the patient handbook, where you will find so much helpful information, and if you don't find what you are looking for, just post on the boards and all of us will try to help you as much as we possibly can. I'm still a newbie myself but, have learned so much here on these boards. Also, check out the ICN Shop, you will find alot of foods, books, supplements...

Take care.

BigFig

[carezeb]

Hi,
Just saw your posting and want you to know and others that if the doctor that you go to doesn't give some explantion of this condition, run to a Uro-Gynecologist. I have been to five doctors and just got "attitude" like this awful pain is all in my head. They also gave me three diagnosis. My son who is a resident at a hospital back East told me that no one needs to be in this much pain and not be decribedsome meds for it. I started with IC just two days after having a Barium Enema for a intestinal check for any cancers. I thought I was about to die from the pain I was having. This happened last early November and it took me this long to get to the Uro-Gynecologist!! These Urologist only know about Prostates!!! They really need more research into IC that we women get. My Doctors really need to go back to Med school and learn how to talk to their women patients.
So, I am now getting Elmiron through bladder instillments once a week. I have only had one but this week has been torlerable for the first time in months. It could be the meds or my diet change, stopped eating wheat products and artificial sweetners plus all fruits. I do take Elavil at night so I do not get up to go to the bathroom four times a night. From what I have read on this site is that there are many ways that women with IC are being treated. I just pray that this keep the flare ups down since I need to fly from Ca. to N. Y. for my other son's graduation from Medical school in May.I don't know how I am going to fly with this condition if I am in pain.!! Can't get any more Percacet because the Dr. thinks I will get addicted to it?? I have tried almost all the pain relievers and that is the only one that stops the pain.
I hope that you are getting better treatment and this condition will not control you life. It is very frustrating to find the right Dr. to take care of this condition. So, if you are unhappy with this Dr or any Dr. for that matter. It is alright to go to another. My first urolgist was insulted that I went to another Dr. His problem!!! I also am taking Diptropan but only take two a day because it drys my mouth too much.
Take care,
Rose