I'm new and need your help

[meg31]

Hi everyone. I’m new but have been reading your posts for some time now and have really learned a lot from your experiences. It’s helped me go to my doctors appointments armed with information. I’ve been suffering with what I think is IC for many months now (since April). I, like so many of you, have been having excruciating pain in my bladder and pelvis that is mixed with urgency. The pain is relieved by peeing but then comes right back as my bladder fills up. I’ve been on antibiotics for a “UTI” three times now even though my cultures were negative. Saw a urologist who gave me Detrol for OAB- just made things worse. Saw a different urologist who told me she suspects IC. I’m getting the hydro at the end of the month to confirm. I’m scared- not only for the procedure but to find out I really do have this awful condition. Your posts are inspiring but scary. It seems like it takes so much time, effort, support, patience, and strength to get through this. I don’t know if I have that in me right now!

I’m seeing a psychiatrist because this problem has made me a wreck. In April, before this happened, I was on the top of the world. I got promoted, finished my master’s degree while working full time, and was so excited to start a new career. I’m only 26 and so far have been completely healthy. Then it hit me suddenly as I was finishing up my masters thesis (a very stressful time). Now I’m taking sick days left and right, don’t want to leave the house, and cringe when I think about the future. Did you all feel this way at first??

I have some questions. I’ve started the IC diet and haven’t noticed any changes. I’m trying to find my “trigger foods”. How long after you eat them do you usually feel worse? I feel so bad all the time that it’s hard to imagine feeling worse! Also, for those of you with PFD, how do I know if I have this also? I have difficulty starting urination and have a weak stream and sometimes have to push to empty my bladder. Also, the pain seems to be worse when I’m in certain positions (bending over, laying down) Are these symptoms of PFD?

Thanks in advance for the help and support I know I will find here. Hopefully I will be able to contribute more as I find help and treatment.

-Meg

[L. Thomas]

I read for a year or more on the site before I started to post. I felt that everyone else had such a bad time with IC that I couldn't offer much. I've changed my mind because I know I can offer encouragement.:flower:

There are things that can help. It seems that some of us are lucky and our symptoms are not as bad or we get diagnoised early. :bow:

I have read enough here to know that no matter where you are in this disease, you can always find kind hearts and welcoming ears.

My thoughts and prayers are with you.:pray:
________
Adrianaxxx cam (http://camslivesexy.com/cam/Adrianaxxx)

[vm]

:welcome: to the ICN! SO glad you've posted. I could SO have written this:

Your posts are inspiring but scary. It seems like it takes so much time, effort, support, patience, and strength to get through this. I don’t know if I have that in me right now!

I felt exactly that way in the beginning and know others here did as well. It is a scary time and the road ahead seems so daunting. I remember reading post and after post and researching and researching ---- some days it made me feel stronger and more empowered and on other days it scared me to death. :(

What really helped me was that I honed in on a group of people on the boards who were positive and upbeat and encouraged me to remain hopeful. They reminded me that MOST people with IC DO go on to find treatments that help them feel better. So IF you do end up with a diagnosis of IC - it's isn't the end of the world. I know it's hard to believe that right now - but it's true.

Remember as you read that most of the people posting here are still searching for the treatment combination that will help them ------ but MANY more ICers are not here b/c they are feeling great and don't need the support from these boards. ALWAYS remember that - the board isn't necessarily a true representation of how all ICers are doing.

please keep us poted and feel free to ask any questions you might have. We can only share what has worked for us and offer a shoulder to lean on, but often that makes all the difference in the world. :)

[BeachBaby]

HI!

I just wanted to add my thoughts to hopefully encourage you. Like Kim said, it can be so scary at first, and for me it came out of nowhere, so it made the whole ordeal just over the top. I was used to running on empty, doing it all and hardly had time to pee, never mind start going all day long. The pain, the urgency, that feeling like your bladder is a percolater...it is enough to make you feel like the end is near!

I was Dxd in 2002 and I can happily say that I have enjoyed almost complete success for over 18 months. A twinge here and there, but the ability to just recognize it, up the fluids and lay low for a day. maybe a heat pack or something soothing.

NO ONE could have ever convinced me that I would get better, but I am proof positive it can and does happen. Elmiron did help me, so I consider myself lucky. Other than pain meds (that became my biggest hurdle as time went on), it was my only treatment.

There is so much knowledge here, as you must know and no question is ever silly, so ask away it if will help you. I learned a lot here and you won't have a problem getting people to reach out. Feel better soon, and just keep plugging away and stay informed on your treatment options. Not all that you see listed here are for everyone and it's important for you to find a treatment plan that works for your symptoms. :)

[kelly McC]

Hello and welcome,
Glad you found us. My Uro did a exam to diagnose PFD with IC.
Trigger foods are tricky some can cause immediate flares others may take hours and for me a few things a day or two. We are all different in triggers and flares I kept a journal of foods and my symptoms.
I can also say for me 5 years later and I am doing great there are far more better days than not.I was scared early on but thanks to my fingers typing on my keyboard and surfing the net I found the ICN .I was able to gain knowledge,courage and much needed strength to be where I am today.
Good news is many do find treatments that help them
Many huggs,
Kelly

[VickiB]

Hi Meg,

I bet most of us felt the way you describe when we were first confronted with those letters, -IC! I remember I was scared, anxious, depressed, and even a bit angry that I was saddled with this nightmare. (what did I ever do to deserve this?) That was two and a half years ago. Today, thanks to diet changes, meds, and some tricks learned on this site, my IC rarely affects my life anymore. A long ways from back when I thought I would have to accept that my life was over!

Regarding the diet, I found that for me it took a few weeks of eating a very limited (safe) menu before my bladder began to calm. Perhaps it took that long to heal up past damage? Only then was I able to begin to see the relationship between what I consumed and it's effect on my bladder. As to how long it took after eating or drinking something to feel it's effect, -for me, that varied which made the detective work a bit more difficult. Some things hit within an hour or two, like soda, grapefruit juice, etc. Sour cream took about 6 hours to make me miserable. Smoked sausage doesn't usally bite me until the next day or two. My theory is that different foods take different amounts of time to be metabolized by my body and reach the bladder. In the beginning, I was told that the easiest way to begin to see this food/flare relationship was to keep a food diary. They were right, that worked! And if you tend to eat a lot of prepared foods, keep in mind your trigger may really only be one or two certain ingredients used to make the whole, so becoming a label reader is important. (example: It isn't the sausage that causes my flare but rather the liquid smoke/ nitrite/ nitrate junk usually added. I eat sausage frequently now with no ill effects by avoiding the ones with those additives) Gosh, I may have made this all sound far more complicated than it actually is! One of the people with IC on this site, JulieB, is a registered dietitian and has written a book on diet & IC called "Confident Choices". It's available in the ICN store and I highly recommend it.

Sorry, I'm not that familiar with PFD so will leave those questions to others who are.

Good luck with your hydro at the end of the month. I hope it brings you some answers. If IC is confirmed, I want you to know that most of us do go on to live pretty normal, wonderful lives despite our IC! Odds are you'll be one of those!

Welcome to the group!

Vicki

[trinklebell]

i want to write everyone here a special thank-you for your encouraging words. i was officially Dxd with ic three weeks ago, though my docs suspected i already had it since i had IBS, endometriosis, and had had an ongoing bladder infection of three months, and a whole bunch more countless bladder infections before that. i was starting to let myself get overwhelmed when i decided to look up support groups listed in my elmiron packet. this site really helped to turn my attitude around. it feels so good to finally be able to hear/ read about others who have my same problem and are still optimistic about it.
i am from a small, mostly rural northeast missouri town and absolutely nobody in my highschool (except one teacher) knew about my diseases (geez, "disease" sounds so weird, but i can't think of a different word). anyway, the only other person i know who has ic is my mother. don't get me wrong, my mom and i are really close and i feel comfortable talking to her about my problems, but it's just really nice to know there's others out there who have ic and are still leading happy lives and supporting each other.

-trinklebell

[meg31]

Thanks to all of you for your kind words and support. I feel like no one around me has a clue what this problem is all about and having people understand what you're going through is such a relief. I'll keep you updated. Any suggestions (besides diet) on what to do about the frequency and pain until i get the hydro done to diagnose me? I don't think my docs will perscribe me anything until they know for sure it is IC.

Thanks so much!
Meg

[VickiB]

Hi Trinklebell (love that name!)

I'm glad this board has helped with your outlook, -it did for me too! I believe attitude can make a huge difference in outcome. On a side note, I was just talking to a fellow in Missouri who told me gas prices are really low there,...well at least low compared to where I am!

Meg,

Have you tried any of the over the counter meds like Azo or Uristat? While not recommended for long term use on the package, I do resort to it when I've had enough of a flare and need a break from my bladder. My other better self-help tricks include increasing my water consumption (untreated water). I know this may sound backwards since you're wanting to stop the frequency & urgency. I think for me it dilutes the urine which in turn causes less irritation, thereby muting that gotta-go feeling. Sitting in a warm bath with a crossword puzzle helps me too, though I have heard some others say it has the opposite effect on them.

Hopefully others will be by with some of their suggestions to help you get through 'til your appointment.

Vicki

[trinklebell]

i've tried azo before and it really helped me. (i wish they could come up w/ a long-term med like that!) by the way, thanks for the compliment on the name. my sis came up w/ "tinklebell" and "trinkle", so when i found out "tinklebell" was taken i just made it "trinklebell". about the gas prices-- i visited my family in Pensacola, FL last summer and i was shocked to see that, the futher down we drove, the higher up the gas prices went. everybody here complains about it being $2.32 (i remember when everbody here was outraged at gas being $1.59!) i would hate to live way down south where they're so much higher.

thanks for the warm welcome everybody.
-trinklebell

[meg31]

Thanks Vicki. I went out and bought some Azo this morning. So far it hasn't done much except make my pee bright orange! I'll keep my fingers crossed. My urologist told me I now have an infection and put me on Cipro again. Last time my urine was clear (but I still had all the symptoms). Is it common for people with IC to get constant infections that come and go? I feel like I've been on atibiotics forever! Can this irritate your IC? I trust my urologist but I feel like my problem has gotten even worse since I started the Cipro.

Thanks to anyone who can help!

-Meg

[trinklebell]

hello. i just wanted to let you know that my doctor told me it was common for patients with ic to get chronic bladder infections. i have had one since last may that has never gone away, and i had like a million infections before that. they kept on giving me the same antibiotic (i can't remember the name), so finally, in mid-September, i told my mom that i refused to take anymore of that antibiotic, 'cause it never helped me. so, she called the doctor's office and the pharmacy and they got me a new antibiotic called bactrum. it helped for a day or two, (the day i had a cystoscopy), but my infection came right back. (also, all the antibiotics caused me to get get a lot of yeast infections :mad: ) so, now i'm on a round called macrobid (it tastes nasty!), and i hope it will help.

if anybody knows new/effective ways to reduce bladder infection irritations, i would appreciate the info.

-trinklebell

[ABliske]

Hi Meg,
I'm 26 years old too. I was diagnosed with IC in August. I too have not gotten relief from the diet. I'm sticking to it though because I feel that, if my bladder, improves I might be able to detect trigger foods. I don't want to do more damage to it either.
Good luck with everthing! Hang in there until you get the hydro. The ASO didn't work for me either. One bit of advice, not to scare you, but be careful about what meds you take after the operation. I was prescribed Effexor and it make me very sick when I was in a weak state. I had to go to the ER to stop the vomitting.
Annie

[faith4jesus]

Sounds like I was reading my own message when I read yours. My doctor too suspects this it what I have. I know the fear you are fearing. I've been reading messages on here for months too and get scared at the idea of having this. I too have the pain and just feeling awful at times. There has been a few rare times when the bladder pain was so bad I couldn't get out of bed. I'll keep you in my prayers.

Remember it is nice to know someone understands how this feels, the fire inside your bladder, but also it hurts to know that others are going through this. But you are not alone. I'm only 31, a mom with kids and a wonderful husband & I hate the idea of living like this for the rest of my life.

Hugs, Ashley :pray:

[trinklebell]

Hi Meg,
I'm 26 years old too. I was diagnosed with IC in August. I too have not gotten relief from the diet. I'm sticking to it though because I feel that, if my bladder, improves I might be able to detect trigger foods. I don't want to do more damage to it either.
Good luck with everthing! Hang in there until you get the hydro. The ASO didn't work for me either. One bit of advice, not to scare you, but be careful about what meds you take after the operation. I was prescribed Effexor and it make me very sick when I was in a weak state. I had to go to the ER to stop the vomitting.
Annie

hey. i'm sorry effexor had such negative side effects for you. i just wanted to send a reminder to meg31 and others to remember that each individual case is different. i have taken effexor for a long time (it counteracts symptoms caused by my endometriosis) and i haven't experienced the vommitting issues that you have. it actaully helped to decrease pain i had from migraines. however, i can't take pain meds ultracet, percocet, darvacet, etc.--- nothing besides tylenol 3. (they make me go into anaphylactic shock- i hope that's how you spell it.)

everytime i heard about somebody having adverse side effects from medicines my doctor was thinking about prescribing for me, i used to freak out. i used to always be afraid to try anything new (i didn't want to get that same reaction that i'd had before-- i still deal with that fear sometimes). my doctor and mother had to frequently remind me that each person was different and the only way to find out if it worked for me was to try it. also- i had to remember that my doctor's purpose was to help me and not to harm me- she wasn't gonna give me something she thought i would react badly to.

i agree with annie- be careful about your meds, and remember that your body may respond differently to certain meds.

-trinklebell

p.s.
annie-
i hope your doctor(s) will find med combos that will help you soon!

[ABliske]

I'm still taking Effexor. I think it has helped me too. I just started taking it right after I got out of being under general anesthesia. I believe it was taking it on an empty stomach that caused me to be so sick.

[trinklebell]

i've never taken effexor on an empty stomach. my docs never let me take anything right after i get out- or eat anything either! i hate it! the first thing i do in the morning is eat or else i feel sick. i hate having afternoon surgeries- all that time with no food! then, after the surgery when you wake up, you have to wait and see if you can hold down ice, then water, then jello... i think the whole process takes too long. all this talking about food is making me hungry- i'm gonna go find something to eat :)

-trinklebell

[Scaredmuch]

Trinklebell? ive been on bactrum for years now. and now i am immune to most anitbiotics. i have had this problem since i was 2 years old and still havnt found out why?
there are not many tablets that help me but hopefully you find one that does

Wish u the best.

Hugs
Sam
X

[vivig14]

hey there. i'm sure it must be kinda scary to read some of our posts...but i wish i'd had this resource when i was diagnosed, around your age, back in the late '90s. i know you're feeling down about it, and that's to be expected. i was diagnosed with IC and later PFD. it's been about a ten year road to recovery for me, but it doesn't have to be for you...don't worry you should have many more resources available to you. my piece of advice is go for "the best" professionals in the field. don't settle for someone who just knows a little about IC, or a little about PFD. i have found Physical therapy to be the most helpful and curative for me (btw, i was "undiagnosed" with IC by Dr. Moldwin this past May--meaning i do not currently have the symptoms to meet the criteria for it, though i was dx by hydro and cysto in '97). so, i'm in tx for PFD, and b/c my symptoms have abated so significantly, we are moving toward every other week. i found the PT to help me more than any of the meds. however, that being said it is labor intensive and can be painful, but it helped me to identify and retrain my muscles, which i truly think were at the root of my bladder irritation.

[trinklebell]

right now i'm still on macrobid, but so far it's not helping. i hope i can find some antibiotic that will help me too :) thanks for the encouragement.

-trinklebell

[meg31]

Thanks vivig14. I am relieved to hear that something other than meds have helped you recover. I have been dreading the thought of being on pills for the rest of my life.

I'm getting my hydro/cysto done on the 12th (I'm a little nervous but glad I might finally get some answers). Regardless of the outcome I'm going to see someone who specializes in PFD because I do feel my pelvic floor muscles are involved somehow. I actually had been feeling better the past couple of days (maybe something to do with having a long weekend off from work!) but today all the symptoms are back again. Can hardly get off the couch except to go to the bathroom :)

I heard some people feel relief after they get the hydro done. Do the symptoms come back all the time or do I have hope for it going away altogether?

[ABliske]

I'm very sorry to tell you this, but IC is something that is uncurable. And, although there are treatments, it's something you're probably always going to be dealing with. We will be here to support you!!! My doctor did said he did have one patient who made a full recovery.
I just started PF therapy last week. It seems like it might help, but although my IC is very severe, my muscle tension is almost normal. The therapist said it's good that I went in early. I've had IC for 7 months and most people don't go to her until they've been dealing with this for years.

[Claredale]

In response to the meds after your surgery. Make sure that they give you something for nausea. They told me that nausea was normal, but I had it for several days. My next surgery, they put meds in my iv and I did much better, plus sent me home when phenygran. It is always faster to heal when you feel more like yourself! Good thoughts!!!!

[ABliske]

Great tip Tracey! I had an experience like yours. I will ask for that if I have another surgery. Thank you.

[Claredale]

One more thing...REST!!!!

I have never been one to take meds once I started feeling better.

My husband got very upset with me one time after I had my interstim implant. Of course I was feeling good on the meds, so with it being Spring I felt like I was well enough to work in the yard for a while. He was in the shower, so had no idea where I was. He came out to find me and there I was with my garden gloves on bent over planting bulbs. He told me to get inside right now, people from our Sunday School class were on their way with dinner and it wouldn't look good for me to be working in the yard. Later on that night I was sure sorry. After that, I stayed put like doctor's orders!

[trinklebell]

In response to the meds after your surgery. Make sure that they give you something for nausea. They told me that nausea was normal, but I had it for several days. My next surgery, they put meds in my iv and I did much better, plus sent me home when phenygran. It is always faster to heal when you feel more like yourself! Good thoughts!!!!

i know that meds like phenygran can really help most people. unfortunately, i'm not one of them. i went into anaphylactic shock last year because of a drug called compazine (a med that combats nausea). my mother takes it and does fine, but neither my sister nor i can take it. since then, because the reaction "rewired" my system, i have reacted to darvacet, percocet, ultracet, and pretty much all medicines except tylenol 3.

it really stunk last month when i had a laparoscopy and colonoscopy and my doc gave me ultracet (i didn't know then if ultracet would make me react or not). i did start to react, so i took benadryl, but i couldn't have any other pain med. so, i had pain coverage the day after my surgery until the anasthesia wore off, but after that i was on my own. it was awful. so, when i had a colonoscopy a week after my first operation, my doc gave me tylenol 3 tablets w/ codeine and found that those were the only pain meds i could take.

-trinklebell

[Claredale]

Oh I am so sorry. My grandmother's system causes her to have a hard time as well. All anesthesia makes her so sick. As soon as they wake me up in the recovery room and I making sure every nurse knows to take out my cath (that always sends me in a flare) gives me Morphine (I watch every drop go in) and give me the compazine. After my first surgery (cysto), they told my husband that the nausea would last only a few hours. It was like 4 days later. I cannot imagine what you will have to endure!

One one weird thing about being sick during that time though was that I wanted Taco Bell and banana popsicles!

[Freckles]

Hey..Meg
I'm so sorry to hear you think you might have IC. I have it bad, so I don't want to scare you. I'm on a lot of medication and a fentynl patch and still not out of pain, but there are so many variations to the pain etc., in this disease. I hope and pray you will not be in a lot of pain like me. I've had IC for about 9 years and it's been a struggle, but this website has helped me so much you can't believe. The doctors and medical community have been horrible. I've yet to find a caring urologist. I'm on my 6th or 7th one and I hate him. I do finally have a pain doctor that I think cares, but he does not give me enough pain med's to control my pain. I feel best laying down with ice under, over and inside of me. I bought a glass insert that you keep in the frig and then you can put inside of you. It also can be heated, but I like it cold. Sitting is the worst for me. Car rides aren't fun. When I'm laying down it's not too bad I guess because the pressure if off my bladder. My main advice to you would be not to panic and be aggressive in your search for the right doctor. Always speak up for yourself and if your doctor will not listen, then change doctors until you find one that will. It's a struggle believe me. I do instillations at home and recently called my doctor for smaller catheters and he said no. Why on earth would my doctor refuse smaller catheters? Who knows, but I will not see him again. Stay tough and don't let these doctors get you down. The doctors are the worst part of this disease. They are horrible. At least all the ones I've seen have been. I hope and pray you will find one that will be wonderful and supportive.

Karen

[trinklebell]

Tracey83- nobody took your catheter out before you woke up? ouch! i've never woken up w/ my catheter still in. i'm kinda worried about the instillations that i will start next month. the T3 tablets don't cover the pain i have now, so i have no idea what my pain control will be like then. i also have med called cataflam, but it's just like a strong ib profen. i don't like to take either, but i figure some help is better than no help. i just get sick of always having to take medicine. (i'm sure just about everybody on this site can relate to that.) i'm gonna get over my pitty party now and go to bed :)

-trinklebell

[sandramac]

:welcome: you have gotten some great advise here! just wanted to add another welcome !
Hugs Sandra:cat: :cat: :cat:

[Silverfox]

Trinklebell, hello there!, Hi! I am sorry that you have this problem.

I noticed you mentioned that your Mom also had IC. Just wondered if you have participated in the Magic study. This is a study if you and a family member have IC or a painful bladder, the researchers at the University of Maryland are looking at the genetics of IC. You can call them or contact them to participate. It's easy and they send the kits to your home and pay for the tests and also shipping back to them. They need your help if you fit the requirements. Here is the website to read more about this.
http://icresearch.umaryland.edu Check it out as they are learning new things they had not known about families with IC. They have a toll free number also. Toll free 1-877-788-3942

My Mother also has this for many years. She is now in a nursing home and they are giving her datrol. She is in a wheel chair and sometimes she gets no help getting to the bathroom in time. I visit, and I will find her sitting with a large pool of urine on the floor underneath. She also uses disposable diapers when I take her out of the nursing home, and she has really bad diaper rash because of the urine burn.

I also have two sisters, who used to deny that they had any bladder symptoms. They saw how the Drs. and urologists were treating me and they were scared by all of the painful treatments and medications, and surgeries.
I am the middle sister. They finally admitted to me that they also are suffering with IC/painful bladder and many related conditions. They are very similar to me, but I was the worst of all of us girls. Happily my older sister is now symptom free for several years.

My Dad has never acknowledged that any of us suffers with a bladder problem or might be in more pain than he can imagine. He has never asked me how my bladder pain is, or about the treatments and medications, or if I am well enough to take him to the Doctors. He has never cared to know anything about IC, just expected us to endure it on our own.

My Dad has cancer now, and takes chemo treatments, and always explains that he is the only one who is sick. Actually, he is tired, but I suspect that we girls are in more pain then he has ever felt. Should he ever be in severe pain I wonder how he will act, and how I should react in return.

I also want to share that I am also very sensitive to medications, with nausea or headaches.

I really believe that in our family, the cause will turn out to be the same for all four of us, and we have participated in the Magic Study at the U of Maryland.

[Claredale]

Trinklebell,
Believe me it was horrible. I remember the nurses were at the desk in the recovery room and I was yelling for one of them to come TAKE IT OUT! She also brought the morphine and I can remember telling her that there was some in the syringe so give it all to me.

Doesn't your doctor think that ibprofen is irritating to the bladder. I have taken it myself when I was totally out of pain meds and I really think that it made my flare worse. It must be really tough when there is such a small amount of meds that your body can handle.

Loratab is pretty much the only pain meds that works for me on a maintenance basis. Everything else seems to wire me and I hate that jittery feeling!