Need your input - types of IC flares??

[icnmgrjill]

Courtney and I are trying to finish up this special report on pain and, of course, I had a brainstorm in the shower this morning. I realized that noone has really tried to identify that types of flares that IC patients can have. So, I thought I'd take a stab at it... but want to ask you if you think I missed any

Types of IC Flares

(1) Diet induced
(2) Hormone Induced (ovulation & before period ... maybe menopause?)
(3) Sex induced
(4) Stress Induced
(5) Travel induced (vibration, etc.)
(6) Exercise Induced
(7) Medication induced??? (i.e. dmso or after treatments??)

Can you think of any others?

Jill :)

[mayray518]

When my IC was at its worst I didnt have flares. It was frequency and pressure 24/7.

[Stephanie2004]

Maybe catheter induced?

[dyno]

Jill, that list looks pretty inclusive. I don't think I can come up with any others either. I say that and then an idea pops in my mind. This may go under exercise though. When I go swimming in some swimming pools the chlorine sometimes induces a flare. So would that be chemical induced?

[stacey79]

Paint fumes can be a bit of a problem for me. I don't know if that would be maybe sort of chemical? Also, bubble baths and certain non-cotten fabrics and dyes in underclothes can be bothersome. I don't know where those fall either. They may already be covered.

Those are the only other things I can think of. The list covers my biggest ones. These are just some smaller things that can irritate my bladder.

[Jeanne D.]

Jill:

I would definitely think Infection Induced (bacteria). You know, the good old UTI!

Jeanne

[Babs RN]

Non uro procedure flares--CT scans(contrast), pelvic sonagrams(full bladder), transvaginal ultrasounds, PAPs.

[cindyp]

Mine always start when I get a yeast infection and last for a couple of years when I'm yeasty it seems to go hand in hand.

[desolationangel]

hmm... I agree with chemical flares from paint fumes, strong dyes, bug sprays, etcetera.

[Jean12]

I have had flares induced from surgery. When my thyroid was removed - that's not even close to the bladder, my hysterectomy, and foot surgery three times. Not all of these surgeries required a catheter either, though the ones from the cath were probably the worst. I also flare after a gyn exam too.

[Betsie]

Hi Jill,

Great idea and you are so right...we don't seem to get to this criteria in such a simple fashion.

Here is one but I honestly don't know how to say it simply:

Trouble with bowels - constipation probably having a profound effect, but even IBS D can have an impact when you can't get out of a cycle of it...

For anyone ever not able to be normal in this are of GI/digestive health...it can really set off a series of symptoms and bladder issues.

Hope this helps. Good luck with this project.

:kissing:

[cindyp]

For sure GI issues also set it off. It does for me when my crohns is flared up so is the IC and yeast problem. Thats whats going on with me know the Crohns has been bad and now the IC is faired up.

[classics]

How about weather induced or second hand cigarette smoke induced ? It seems those with arthritis and joint problems are affected by changes in weather. Smoke bothers me in many ways, most likely it has a negative affect on my bladder, too.

[vm]

I was going to add smoke, also. When I was more symptomatic just being in a very smokey room would set off a flare for me.

[DanaW]

How about when you have the flu?? Or a cold? Dana W.

[DanaW]

Would vitamins be listed under medications? I can't take ANY vitamins......

Dana W.

[Indy]

Hormonal flares!

[Dixiefireball]

seems like you guys has already picked what i was going to the old U.T.I, Stress, boy do i have that right now. Surgeries, foods, bubble baths, colds
Even some medicine's. That was my idea's

[ginac]

sometimes for me it is normal daily activities, yard work, house work, lots of standing or walking... or maybe I am in the beginning of a flare and those things make it worse...

just a thought

[Betsie]

Jill-Here is a current link that made me think of our poll here..could tell you everyone's story (LOL) but htought the link would suffice. :)

http://www.ic-network.com/forum/showthread.php?t=15526

[hoping4acure]

Jill,

Mine is diet induced, STRESS for sure, and sometime sex.

[mary0468]

I have ICS that seems to be releived by hormone therapy. I have tried alot of things, diet , of course, helped immensely but limited my diet that at my age I began to worry about not eating alot of foods that were good for me. Anyway, It was very clear to me that mine developed like gangvbusted at the onset of menopause when I was 50. Of course , like everyone else, I have my horror stories but Once I suggested the dreaded hormone therapy to my doctor and she agreed to try it with me and I have received almost total relief. This , as we know, is a VERY mixed blessing with constant worry over all the other cancer producing warning we seem to get on a daily basis. But I had two things to offer. I live in Charleston and the allergy situation is brutal. It seems that Sudafed is the only thing that helps me , but I am sure that epenephrine plays havoc with my bladder. I have been helped by valium and benadryl is an allergy substitute that doesn't seem to bother it but , of course, both of these cause drowsiness and I own two businesses. However, a customer visited my shop recently and told me about a treatment that she had had for her bladder(it turned out she IC) and that they had installed a pacemaker! in her bladder at MUSC. And she seemed ecstatci at the results. I was very busy with customers and could not get her name but has anyone heard of anything about this? The hospital where it was done was The Medical University of South Carolina in Charleston.
Also, I just noticed that amitryptiline seemed to relieve it. I believe , that I was using this drug until recently for depression and my symptoms have kicked up a little again. Is amitryptiline an anti-depressant?

Thank You

[Betsie]

Amitriptyline at it's higher dosing is used primarily for depression. At many lower doses it is used for a number of crossover syndromes, especially chronic pain. I first used it for prophalactic rxing for migraines.

Now, I know sudafed has only one active ingredient which is pseudoephedrine. Are you saying that it is the same as epenephrine? I ask this as I also have problems with the epi, and always need novacaine without that. However with a bee allergy I do have to carry an Epi Pen...I am confused about the pseudophedrine/ephedrine, I did not think they were the same.

I might be confused as I am heading into menopause....LOL

[Betsie]

Here is some info on Sudafed/active ingredient....as well as a second link for ephedrine.

http://www.drugdigest.org/DD/DVH/Uses/0,3915,573|Pseudoephedrine,00.html

http://www.drugdigest.org/DD/DVH/SearchDrugs/1,3929,,00.html?drugName=ephedrine

For some reason the first link needs to be copied/pasted into browser, have tried to fix it..........


Keep confusing epinephrine with epdhedrine.....which one are you discussing?

[Amyinagony]

I would like add ALLERGIES to the list!! That seems to be a BIG one for me!! During high allergy season, I double Zyrtec, and have to also use nasal allergy stuff. Among others mentioned....diet, stress, sex, medications...and so on.

[mary0468]

Betsie

I am talking about ephedrine. This is the thing that I believe triggers the IC flareups.

Mary

[~*~Christine~*~]

not sure if it has been mentioned, didn't read through the whole thread yet:

Clothing induced. When some people with IC where tight or/and unbreathable clothing (especially underwear, pants and girdles) they get flares.
I also get flares during my period, probably the worst, more so than before i start menstrating

[babygirl694]

Mine are caused by food, sex, stress, traveling, overworking myself, being too tired, certain medications, like a week before my periods to the end of my period, allergies, wearing too tight of clothes, gas, constipation, holding my pee too long, yeast infections, being sick with a cold or otherwise... exc.
I think someone did this awhile ago.. i think Katrina.. Not sure though... and these were the things they came up with:
stress, food, food allergies, nasal allergies, Enviromental hazzards, over working yourself, sex, gas, constipation, holding it too long, hormones, yeast infections, bacterial infections, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, and many other things.

[goldenbetty]

I would like to add INACTIVITY INDUCED. I am a medical transcriptionist. I sit most of the day performing my duties. I find that sitting for long periods of time aggravates my condition and worsens it when I am in a flare-up. I have to clock out and go lie down for at least 15 minutes. No one knows what we have to live with, do they?
:(

[kadi]

I had a big flare after tripping & falling flat on my face. Don't know what category that would fit into - "clumsiness induced" flare??
Oh, and second the post for "yeast induced flares" - those are really irritating!
Your list looks really good!

[babygirl694]

i agree with the inactivity one.. and the clumsiness one.. im EXTREMELY clumsly! :-p

[Betsie]

Betsie

I am talking about ephedrine. This is the thing that I believe triggers the IC flareups.

Mary


Hi Mary,

If it is ephedrine and not epinephrine, then I suggest a call to your pharmacy. Sudafed, to the best of my knowledge does not contain this...is it an ingredient within the active phseudophedrine? That I am not sure about...but if sudafed might help you, and trust me, I take it the minute I wake up...maybe you could take it after all...I would just stay away from the different ones for allergy, colds, etc as they have added ingredients.

Sometimes it seems the OTC remedies far outweight the RX ones in the confusion of our ability to use them.

[kittymom]

I also have a tremendous amount of pain a few days before my period then it goes away then comes back as my period subsides. I have talked to my Gyn about it and she looks at me like I have 10 heads and sent me packing with a hormone vaginal cream for lubrication :loco:

I often wonder what my cycle has to do with my bladder.I am aware that the insides get swollen but geez enough is enough already my medicin cabinet is filled with all kinds of heating pads, creams hot water bottle,I could go on and on :bonk: :grouphug:

[twiggy]

Put some stars beside the UTI induced one. Ouch, ouch, ouch -- had a UTI two months ago and still paying the price!

[babygirl694]

i never know if i have a UTI.. where can you get the strips to test YOURSELF for them? Over the counter.. ?? I tried looking at walmart.. they didnt have any.. and wallgreens said they didnt either. Any help would be greatly appreciated :)

[stacey79]

I found them at Walgreen's, but I found the best selection at CVS. Read about them before you get them. I bought two kinds, actually. They tested for different things. Also, you need to test urine that has been in your bladder for a while. The box says overnight or at least four hours. I tried to wait at least an hour. Four hours when I'm not feeling well is completely impossible as is overnight! You can order them online, too.

[babygirl694]

Thank you for the help. I have a CV's next door actually.. so thats quite convienent. :o)

[gwynnie]

how about emotion induced? sometimes when i am really excited upset or nervous or when i cant find a bathroom,it causes a flare too
and depression induced?

[gwynnie]

and irregular bowel movements induced?
rides in cars induced?
hunger induced/
weather induced?
lack of sleep induced?
waoh,, this is beginning to sound endless for me.. :loco:

[babygirl694]

all of them are true for me too..
i almost feel like EVERYTHING that i do causes a flare.. Sucks to be us.

[tulsateacher]

Kadi--cracked me up! If clumsiness is a cause i will be in trouble!
:)

[mallenajolie]

HI:

Here are some additional some may be repeats
1. stress, work related, different from personal stress (sometimes worse).
2. cold weather (defintely feel better in the spring and summer and fall than winter ).
3. morning induced?
4. boss induced?
5. drive to the uro induced?
6. homesick induced (traveling for work, and miss my two calico cats :cat:

[kittymom]

LOL how about husband and kids induced!!

[marye]

I second the cold induced suggestion.
And of course there is always the inavailibility of a restroom induced flare!

[tigger_gal]

Types of IC Flares

(1) Diet induced
(2) Hormone Induced (ovulation & before period ... maybe menopause?)
(3) Sex induced
(4) Stress Induced
(5) Travel induced (vibration, etc.)
(6) Exercise Induced
(7) Medication induced??? (i.e. dmso or after treatments??)

Can you think of any others?


Mines breathing induced :biglaugh: :biglaugh: :biglaugh:
ok just kidding... no matter what do I flare..
wish I could pin point it for sure.. I always flare after sex thats a given... Hormones.... is also a given.. the week b4 the week of and the week after..
stress.. lol.. thats my life.. so I know thats a major factor..
travel yes.. I noticed when I went from the truck to the car, it made a difference.. a blazer/truck ride is smoother then a car ride.
exercise.. I don't do it hurst me
meds?? I don't know

Brat

[southerngirl]

The list is pretty much right on. Although, mine will be worse due to those things I have frequency all the time and I have burning most of the time. So, be sure to include that some people have flare like symptoms all the time, that worsen after exercise or travel or with stress, etc...
That is the problem with IC everyone's symptoms can be so different, but I think finding out the range of differences and the triggers could be very helpful.

[Katrina]

This is the list I normally go by.
Flares may be because of: stress, food, food allergies, nasal allergies, over working yourself, sex, gas, hormones, yeast infections, bacterial infections, smoking, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, temperature changes, and many other things.

One thing I think is a good topic for the future (which is what I thought you meant) is kind of IC flares...such as a frequency flare, a pain flare, a burning flare, and so on.

[kittymom]

Along with all the other symptoms/flares I would like to add I have IBS with constipation and when that starts the pain and pressure in my bladder starts with burning :toilet:

[rubjen]

Every B.m. Starts My Pain. Looks Like A Long List Is Being Complide An Sure Hits Home.
Ruby

[yvette]

I think I might be repeating what someone else suggested: At my worst...I definitely think my environment played a huge role in my flares...

My sensitivity to fumes, particularly at work: Ammonia fumes from the aqueous coatings,
varnishes, inks, special chemical dryers (to dry ink on paper more quickly) paper dust, paper mites...and

then the fumes in film area:
developer and fixer...and if they mixed accidentally -----> YUCK! Smelled like rotten eggs!!! :p
The fixer had a warning on the box, that if it came in contact with your clothing or shoes to wash IMMEDIATELY or throw them away. (But they told me it was safe to breathe...Yeaaaaahhhh, OK.)
I refused to touch any of the wet chemicals.

The printing plates we used smelled weird and you could almost taste it....really strange.


Even cigarette smoke on someone's clothes/hair caused me a HUGE IBS attack, which led to an IC flare.

[ICAmy]

PAP smear/yearly exam induced.
Amy

[alana rose]

pressure induced (sitting for long periods of time, uncomfortable clothing).

[Portia17]

I am sure my ic was caused by gallbladder removal. My i.c. happened after that like 2 months after

[rubjen]

I know that when I had my hysterectomy was when my first IC started.Then my doctor said I needed to have the tubes an ovaries removed that would take care of all the pain. But my IC realy got worse.
Ruby Jean

[realitygirl]

Mine is stress, sitting for a long periods of time, driving long distances and sex.

[ConnieSue]

Do you believe pelvic ultrasounds can cause flares? That explains my latest, I justs did one in January and one yesterday. I thought something was happening after these tests that caused more crampy and spasms.

[kittymom]

yep I do belive a pelvis ultra sound will give you a flare.....somtimes I think breathing the wrong way will give me pain :loco:

[babygirl694]

dido

[Lyn40]

I have lately noticed a pattern to my IC pain. I work thursdays and fridays. Friday nights and saturdays I am usually in a flare. My job is not stressful by any means, but I sit a lot, come home tired and don't drink as much water at work.

Lyn

[babygirl694]

Lyn.. you should drink lots of water.. it'll help. Trust me. =)

[rubjen]

I find if I LIMIT MY WATER INTAKE SO I CAN ENJOY A COUPLE OF HOURS SHOPPING I always get a flare it start as soon as I go to the bathroom.but if I'm lucky it stops as soon as i drink a couple glasses of water. so try to sip some water at work during the last part of your work day. hope you find a routine to help with the flares.
rubjen

[kittymom]

I find that I flare and burn if I go out shopping and walk for a few hours, and even if I drink fluids I try to hold it. the 1st time I go potty after it burns really really bad.. then I remain sore and the bladder starts throbbing. shessh dosn't matter what I do or eat if the bladder decides it's going to act up.thats what it's going to do. :bonk:

[goldenbetty]

You are so right about that. I am trying to get back to exercising, but it does seem to aggravate my pain. I have read that exercise is supposed to be good for it!!!??? I only get relief when I lie down during a really intense flare-up.

:shake:

[kittymom]

I have spent many hours on my couch with a heat pac this past year. I go to work come home and plop with a heating patch. I feel like life is passing me by. not to mention I know have full control over the remote for the TV. my husband and Daughter don't even ask what is on TV

[ginac]

I can totally relate to that except that I go to my room because I have a tv in there and the rest of the family can at least watch a few things they wants :) I am seeing the doctor tomorrow he may pull me out of work for a while... I cant even work without being on vicoden... which of course makes me pretty stupid while I am there. I cant believe they put up with me sometimes!

I am also having a hard time walking... does anyone have a handicap card? I was thinking of asking for one...

[kittymom]

Good Luck at the doctors hopefully you can finf the correct meds so you can function a little better.

I feel stupid somtimes too......don't worry people who don't have IC don't understand we are all here for each other feel free to message me anytime

[emilyrose197377]

do some dr's think Ic is an anxiety problem ? that is what I come across to some dr's throughthout my 5 months process to the answer what is going on with me?

[goldenbetty]

I do feel that what goes on in our lives whether it be anxiety or any emotional occurrence, arguing, worried about our children, or anything that upsets us in any way, does play a part in flare-ups. That is my opinion, but it correlates for me.

[babygirl694]

i dont think that it is caused by anxiety.. but i do think that it contributes to you having flare ups..

[SrMaggie]

I believe that there is a mind - body connection to most illnesses. I don't like to admit it. I love my job, but it doesn't love me. It's full of stress. When it's particularly stressful - I flare. I had a good day today, but I just stayed in the office without visiting any classrooms. When it hurts to walk, that's about all I can do.

[Pain]

if you think I missed any

Types of IC Flares

(1) Diet induced
(2) Hormone Induced (ovulation & before period ... maybe menopause?)
(3) Sex induced
(4) Stress Induced
(5) Travel induced (vibration, etc.)
(6) Exercise Induced
(7) Medication induced??? (i.e. dmso or after treatments??)

Can you think of any others?

Jill :)

Yes, you missed one big one in my opinion:

(8) NO FLARE - Permanent state of pain/symptoms with no identifiable "cause" nor ability to relieve.

From reading this board, there are several of us that do not have "flares" but have permanent symptoms like me. If I am having a flare, it is over five years now with not one minute of one day of "no flare"...I don't think that is a flare.

I sure would like to see this site help bring forth the reality of those of us that suffer 24/7 regardless of diet or any of the above. Sure some of the above might make us beyond worse but it's hard to tell when pain level is already Level 8 to begin with.

Just my two cents..sorry I saw this to late to help probably.

[Melanie]

Subsection of Medication: Suppliments and Vitamins. (folic acid, vitamin c, etc). and Medications that aren't related to IC (antidepressant, OTC meds, etc).

Treatments can sometimes flare me (PT, myofascial release, acupuncture, pelvic exam).


I also have permanent symptoms. But then I get worsening of symptoms which I describe as flares. I haven't felt good since 1997. How sad is that? :headbang:

[classics]

Yes, you missed one big one in my opinion:

(8) NO FLARE - Permanent state of pain/symptoms with no identifiable "cause" nor ability to relieve.

From reading this board, there are several of us that do not have "flares" but have permanent symptoms like me. If I am having a flare, it is over five years now with not one minute of one day of "no flare"...I don't think that is a flare.

I sure would like to see this site help bring forth the reality of those of us that suffer 24/7 regardless of diet or any of the above. Sure some of the above might make us beyond worse but it's hard to tell when pain level is already Level 8 to begin with.

Just my two cents..sorry I saw this to late to help probably.

You have a point. I don't necessarily have what I'd called flares either. My burning pain is constant and is always bad, it can get worse if I eat/drink something that causes more pain. But the pain in always there, even if it's burning type of pain, rather than pelvic pain that many IC er's have.

[Shelka]

I think there's another important one to add to the list:

That is:

(9) Flares for no apparant reason (nothing that can be identified that causes them).

I have verrrry carefully kept track of stress, what I eat, what I do, etc & I have had many flares where I simply have NO idea why they come on (or for that matter), why they go...

Shelley

[callie0767]

jill,
did you know there is a website that promotes disease and their causes with bracelets. its a list of all the colors of bracelets/pins and their causes would you be interested in adding a ic to that website? the website is:www.personalizedcause.com

[Rtruong]

I see that when I drink colas I flare up... even if its carbonation free.

[babygirl694]

i cant drink them at all.. dont anymore

[mags]

i never know if i have a UTI.. where can you get the strips to test YOURSELF for them? Over the counter.. ?? I tried looking at walmart.. they didnt have any.. and wallgreens said they didnt either. Any help would be greatly appreciated :)



I have actually found them at walgreens. you might check again.

[babygirl694]

okay. thanks =)

[heybrej]

I personally notice that I get flares with the following-

(1) Diet induced -Yes yes yes! This is my major one. One wrong move and there it is in full swing!
(2) Hormone Induced (ovulation & before period ... maybe menopause?) Not a full flare, but yes, I do feel extra irritation in my urethra and a little more bladder cramping
(3) Sex induced- Sometimes, usually 50% of the time
(4) Stress Induced- Yes, but only really bad stress. The normal day stuff doesnt effect me, but after a full night of crying and being upset (like a big fight with my finace), I deffinitly feel the pain the next day
(5) Travel induced (vibration, etc.)- No, but when I am in a flare, it causes me more pain
(6) Exercise Induced- I wouldnt know....eep! But no, I dont think so
(7) Medication induced??? (i.e. dmso or after treatments??)- My urethra is irriatated after instilation, but it hasnt ever sent me into a full flare

[heybrej]

I have actually found them at walgreens. you might check again.

The IC shop sells them too :)

[Pain]

Re: the self test strips...while they are great to have on hand..the three indicators that test for "infection" don't specifically look for bacteria..they look for nitrates, white blood cells and blood that are often present in urine output when there is an infection.

BUT one can have an infection and have all of these indicators not test positive - for example not all bacterial infections produce nitrate output. On the other hand, white blood cells found in the urine do not always mean infection, they can be indicative other, sometimes more serious problems in the urinary track.

It is always best to be sure you have an infection AND know what type of bacteria it is before beginning any form of treatment. The only way to do that is to have a culture and sensitivity test done. If the WRONG anitbiotic is prescribed for a particular type of infection it can make the "bug" stronger and harder to kick down.

I do use the strips to "monitor" myself for any changes. I have abnormal results as my "norm" for usually 3 of 10 sadly. I also have extremely turbid/cloudy/full of tissue matter urine as my "norm" which always throws off labs. They WRONGLY put it off to contamination from female areas even if the female areas are "plugged" if ya know what I mean and even at times when I subjected myself and my botched/broken urethra to pure catheter specimans for testing. I guess even most ICers do not have the huge amount of visible tissue slough in their urine that I do. Huge pieces of skin like matter is always visible - yep it's my bladder (mostly trigone area) and urethra literally peeling away for over five years now. I liken it to a permanent horrible sunburn/peeling situation that is unending complicated with urine far more acidic than most. All the prelief/backing soda/tums/diet changes in the world and it doesn't change.

Sucks to be me.

Anyway...I just wanted to interject that part about the test strips..they are great "helpers" but should not be used alone to self diagnose condition or treatment.

[icnmgrjill]

Pain... I just wanted to say Bravo for this post! I really liked the way you talked about infection indicators and that the best way you to you have infection is to have it cultured! Well said!

Jill :)

[ShikiCat]

maybe drastic temp changes. It seems to me like alot of the times if it gets to warm i get a flare..or if i walk from a cold room outside where its hot then it gets worse

[Cheries]

Sometimes I honestly cannot tell what has induced a flare! The old "mystery"!

[anniepie1976]

I'm not sure if this would fall under hormone induced but I was doing very well with the IC until I became pregnant. I would say pregnancy induced because I think that it is more than hormones doing this. I feel the pressure of the baby on my bladder is definately a main contribution to this flare up. Ann

[purpleviolet]

I agree with the post about flares stemming from irritable bowel, etc. The act of pooping sometimes gets nerves or muscles in the area going and can precipitate a mini-flare.
Also, I had a type of UTI infection that didn't feel like the normal e-coli UTI, more like a bad flare - that was caused by overgrowth of s.veridans. Just like a flare, I seemed to get over it without anti-biotics. I was away by the time the culture grew positive and they wanted to give me antibiotics, but I didn't need them it seems. When I returned to doc she saw no WBC, but recultured just in case. Strange.

[joannedorcas]

i need help, are my symptoms ic? Have a urologist appt. on Monday, scared to death does it hurt?

Joanne
IBS\2003

[kdfurgi]

Joanne,
first im sorry you are going through this, second i hape the dr. helps you to find out whats going on. from the sound of it, you have the same problems i had a year ago when my ic got really bad and a dr. finally diagnosed me. i still have the stomach, back and leg pain fairly often, but the meds the doc is giving me helps it quiet a bit. my suggestion would be to print out some of the IC Patient Handbook, highlight what symptoms you have and take it to the dr with you. when i was finally diagnosed it was by my gyno, i told him that everytime i had intercourse it felt like each "thrust" was feeling a balloon air and it would eventually explode and i would be lucky if i didnt double over with the pain. i understand about the job thing. i stay home and take care of my 2 kiddos and try to figure out what to go to school for that wont i wont have major problems with, the only thing i have thought of is posibly a medical transcriptionist that works from home so that i can work on my own schedule and i wont get over worked and if i need to go lay down for a little while when the kids are taking a nap i can with out having to clock out until i feel better. these are just ideas that might help....let me know how the dr. apptointment goes. kari

let me know if i can help, you can pm me or im me at kd_jb2001@yahoo

[joannedorcas]

JUST GOT YOUR MESSAGE, CAN YOU SEND ME YOUR EMAIL ADDRESS TO shelby_639@hotmail.com
thanks
joanne

[Islander]

Hi Joanne,

Kari's advice is very good. You are very wise to be prepared beforhand. I suspected that I had IC and had started sticking to the IC diet before I went to the Urologist. I was able to tell him that my symptoms were quite a bit better with this diet. He said that was a good indicator that I had IC. The information about how many times I urniated during the day and how many times my bladder took me to the bathroom during the night were also important.

Good luck with your appointment. Let us know how you make out.

Marilyn

[sunnidee]

I suffer from Stress and car travel induced pain, and if I am bad and eat too much chocolate! Tea and coffee cause irritation also. Stress is the worst of the worst..

sunnidee:flower:

[sheilacoito]

I get flares from my FAVORITE household cleaner- Bleach.:smile tee Looks like my husband has to do the scrubbing! lol!

Late entry: Tanning in the tanning bed caused me pain. Don't know if it was the different lotions, or maybe the actual lights. Always wanted to see what kind of chemical breakdown goes on in the body with tanning and exercise. Maybe that end chemical is a bladder irritant. Sure seems that way!

[Trishann]

I try to cut back drinking water if I need to go somewhere, big mistake. I get flares from not drinking enough water.

[SrMaggie]

I've been in a semi flare for the past couple of months - only frequency - not so much pain. My doc told me that the spring is bad for IC because of all the histamines in the air with the pollen. He said it does a number on the bladder, too!

[Annie2]

Just want to pop in and say hi to you, SrMaggie. It's good to see you posting, but I am sorry to hear you have been having problems for a couple of months now. Many docs say they see an increase in IC flares due to seasonal allergies. Spring is such a happy time of renewal, but it also brings an abundance of bladder irritating pollens.

[DebbieD]

I Started with Passing Blood at First. With Pressure and pain. With Hunners ulcers.

DebbieD

[Cheries]

I believe that the seasonal allergy thing is not true. They always tell me that "IC gets worse in the summer" or "IC increases in winter" etc. etc. I don't see how it would effect IC when we know most of this comes from a bladder toxin.

[Amy3Marie]

Courtney and I are trying to finish up this special report on pain and, of course, I had a brainstorm in the shower this morning. I realized that noone has really tried to identify that types of flares that IC patients can have. So, I thought I'd take a stab at it... but want to ask you if you think I missed any

Types of IC Flares

(1) Diet induced
(2) Hormone Induced (ovulation & before period ... maybe menopause?)
(3) Sex induced
(4) Stress Induced
(5) Travel induced (vibration, etc.)
(6) Exercise Induced
(7) Medication induced??? (i.e. dmso or after treatments??)

Can you think of any others?

Jill :)


Oh no! Are you telling me even if you have a perfect diet, that these things will give you problems? Does everyone have pain when they ovulate? I started having pain 4 mo ago, and it has been pretty consistent.. Got diagnosed last week, since it is much worse. I thought by being diligent, I could prevent flares...seems like most everything causes one. What exactly is a flare considered and does that mean that the times inbetween are painless? Does anyone have a near normal sex life?

[kittymom]

don't get upset you may not have all these:smile tee
it depends on your body.

unfortunatly I am 5 days before my period and the pressure and frequency are really bothering me:cussing:

I went to my Gyn last week and told him what happens with my bladder before my period and he FREAKIN CALLED ME IN A SCRIPT for a water pill.. DUH:loco:

good luck:pray:

[talksick]

Hi,
Maybe Medical induced flares? If I go in for a gynocological (can't spell) exam or a urological exam sometimes I get a flare.
Kim

[8kits]

jill -

YES menopause induced- NO question in my mind about it... my symptoms "EXPLODED" within weeks of the onset of it.

[Marcie920]

My flares are diet induced,cathter induced,menopause induced,sex induced. and also uti induced. The only symptoms I have with a flare is burning pain in my urethra and bladder. I also have bad bladder spasms.

[Kara29]

I think my IC was mainly hormone induced with ovulation, periods, birth control pills, and fertility drugs as triggers.

[sandramac]

I agree with Kara !00%, Thats what I belive caused my IC! Hugs Sandra:cat: :cat: :cat:

[weezer]

I would love to know what it was like not to be flaring. I have been in severe
pain for the last 8 years, and agree to what eveything has already been posted. But reading through the posts, I don't recall reading anything about alcohol causing flares. I enjoyed having a few drinks before I was diagnosed almost 9 years ago. I quit drinking 8 years ago, although at different special occasions I have had a drink and I find it increased my pain terribly (if that is possible it's so bad). So now its Virgin Drinks for me. I also agree about clorine. I grew up in California and swam evey day in our pool, and I can remember having problems with my bladder as a child (and that's a very long time ago). What do you think?
Weezer

[dminton]

My flares are definitely hormone and sex-related. Also, caffeine and citric acid are the worst diet offenders. Good question!

[douglas]

stess number one for me.
second..stuff like to much coffee..and beef jerky.
i was dianoised about 5 years ago..but i had sympthoms ten years before that.sometimes the flare ups where years apart..
but now i am in a certain amount of discomfort all the time.
but not having the 6 or 7 hours a day of pain for like a month at a time.

[Cheries]

I sometimes get flares in which there is ABSOLUTELY NO REASON!! I rack my brain trying to figure out why I am flaring. Anyone experience this??

[Silverfox]

Hypothyroidism ( low thyroid disease)

My bladder symptoms began early as a small child. I remember symptoms of urinary frequency as early as 3 to 4 years. The bladder frequency continued to worsen along with many other related condtions during my growing up years.

By early adulthood, I was diagnosed with urethritis, trigonitis, irritable bladder, carpal tunnel syndrone, migraines and as having a mental caused illness and will be needing to have my bladder removed. Symptoms of the bladder did wax and wane over those years, but after the birth of my third child it became most severe without any letup and all treatments failed to help.

It was now in my mid 30's, I learned that I had inherited a rarer low thyroid disease that had been known to exhist for several generations in my family. It seems that I had inherited a congenital type of low thyroid disease that caused a defect in the lack of the enzyme that allows the T4 thyroid to convert to T3. This genetic defect caused me to become severely hypothyroid. It caused many problems besides the bladder symptoms, and this included other glands in the body causing much hormonal disfunction and damage throughout.(Female hormones are greatly affected by low thyroid disease). The greatest damage was to the peripheral nerves throughout my entire body including the bladder and area.

My Drs. decided to give me a trial of thyroid hormones, saying it was safe when watched closely, and very much safer than the other treatments and bladder surgeries others wanted to try. Soon, my Drs. and my family witnessed the great improvement in my appearance and how much better I looked and felt.

I never returned to another urologist since I began taking thyroid hormone replacement. Nerve regeneration is very slow but they can regenerate.
My Dr. later told me he helped many of his patients after seeing the great results in me.

It was at this time I learned that my Mother, and only two sisters also had severe IC/painful bladder and were going to urologists trying to get help. They were also at this time diagnosed with hypothyroidism and were put on thyroid hormones. One sister is now for years completely free of bladder symptoms and back working and playing with a normal healthy life.

I have been diagnosed with a polysensorynerve damage, and autonomic nerve damage due to the many years I went untreated for my low thyroid disease and I and my Drs. continue to see improvement in my symptoms. The secret to successful results is early diagnosis and hormonal treatment that is taken daily for life.

Since we have four closely related family members we are in the Magic Study at the U of Maryland. see http://icresearch.umaryland.edu

[glassd18]

I was tested for thyroid disfunction, but it came back normal. Any suggestions?
My IC seems very hormonally related. My symptoms really kicked off after switching Hormone Replace Therapies. It started when I was in my teens, but never progressed until now. I'm 41 yrs old. I'm in some level of pain every day. Not ever really the same day to day. Food and drink seem to effect my symptoms. Sex causes burning after, no pain during. Stress really has a strong effect on my flare intensity, and taking Ativan really helps for me to forget my bladder. Exercise is more difficult now because of the pain.

[Silverfox]

Are normal thyroid tests results accurate?

I would suggest you make a list of all your symptoms physical and mental, and don't skip small ones. I know I never complained to my Drs. about all my symptoms because they already were labeling me as crazy and I let them shame me. Hypothyroidism, before l973 was always diagnosed by symptoms and signs and listening to the patient. Today the Drs. now only go by tests and very often they show normal thyroid function, and they never pay attention or listen to the patients complaints. They send the patient home to suffer and take antidepressants. My bladder symptoms were so distressing and painful it was all I cared about..... Suggested symptoms that I suffered with were extreme fatigue, cold extremities, carpal tunnel of the hands, and numbness in my feet, ataxia and lack of co-ordination, shortness of breath, migraine headaches, dry hair and skin, painful heavy periods, fibro, IBS, were the physical ones..... The mental ones were phobias and unexplained fears, lack of concentration, depression with crying spells, slow thinking, and even seeing small things out of the corner of my eyes. Shame of all these, kept me quiet, and all I wanted was help for the horrific bladder pains. You can search for symptoms of hypothyroidism to help you make your own list.

When my husband took me for my thyroid blood tests, I was very ill. Our Dr. decided to do thyroid blood tests on both my husband and I. My Dr. was very shocked, as my thyroid tests were normal and yet, my husband who was not feeling sick, only tired, his thyroid tests came back very low thyroid. He and I did not realize we had the same disease called hypothyroidism and we began taking thyroid hormones on the same day. Our symptoms were not alike yet we were both hypothyroid and my blood tests did not reveal just how severely hypothyroid I really was.....My husband never thought he was sick, and had no pain anywhere, but that is more common for women to have pain with a low thyroid..... was so very unexpected....I have made more noticeable improvements. My husband takes a much higher dose of thyroid hormones yet the changes in him are so much smaller....here is another case where men are very different from women. When I sat down and made a list I ended up with 75 symptoms total.

It's worthwhile researching this and discussing it with your Dr. if you find you might have a low thyroid. My favorite thyroid site is stopthethyroidmadness, and there are others that might be helpful.

[Trishann]

silverfox, Do you know a test that can prove you have Hypothyroidism? I am having a test done but I am expecting it to be ok, like always; but I still think I do have it because of the symptoms I have. If the test comes out ok, my doctor will not do treatments. How can you argue, if test result shows nothing.
I guess what bothers me the most, if the thyroid test is ok, why aren't other tests being done to find out what is happening. I have deal with so much that I learn just to be silent, but I am learning to start speaking up again. Only this time, with some information to back me up. Thank you for the information, I am still waiting for the results, it has been slow because of the holidays.

Thank you, Trishann

[Silverfox]

Dear Trishann,

So glad you are being a detective and learning more and speaking up. There might be times you will need your all your faith and courage to find the truth to regain your good health.

It is true, that your Dr. could do the same thyroid tests for years, and they would not tell him that you have a low thyroid disease. What thyroid tests did he do? I hope your Dr. will take the time to listen to all your symptoms, and if not you may have to search for a different Dr. I suggest a family practice Dr. or an Internal Medicine Dr.

You say your Dr. will not treat if the tests are normal. My family Dr. knew that I had severe bladder pain and he knew that I had been to many famous places and to top IC Docs. for help. He knew they were saying I needed to have bladder removal surgery. None of these Drs. knew what was wrong with me, as my bladder looked normal to them. I never mentioned all the other related conditions, because they made me feel so ashamed that I was doing this to my family and had severe bladder symptoms. In truth, I had a long list of symptoms all over my body that I suffered with for years. It was only when a relative heard that I was very ill, that they told me about our "family disease" that they, and several in our family suffered with.(Mom's side)

When I told him about hypothyroidism, my Dr. told me that taking thyroid hormone was a whole lot safer than bladder surgery!..... Just a few weeks later He told me he could see a big change and began helping his other patients as now realized what caused their illness. I remember my Dr. saying no one will believe him.

A family history of any thyroid diseases is very important and can be helpful in making a diagnosis. I recommend you ask, call or write to all your family members to learn if they know about any thyroid diseases or any diseases known. (was my biggest mistake)

Here are the recommended thyroid tests I think your Dr. should do.
TSH (not always helpful)
Free T4 (free is important)
Free T3
Thyroid antibodies
Cortisol (adrenals, some with low thyroid have low adrenals)
Ferritin
Some additional labs to consider are DHEA, Testosterone, progesterone, estrogen.

I will send a pm tomorrow. My favorite web is stopthethethyroidmadness

Hope this helps, and let us know the tests results and if your Dr. is helpful to you.

Silverfox

[callie0767]

i have had an underactive thyroid since i was 18 years of age. my was obvious but my sisters results kept coming back normal but she still had the symptoms.somr doctors believe that if the levels are close to normal then you don't need medicine.my sister did finally get on meds. just keep trying .going to an endocronologist helps too its their speciality.

[redfearn]

very concentrated urine...I get dehydrated a lot w/ chemo for my lupus...and my IC becomes so bad when I'm dehydrated and my urine is so brown.
Maybe you can add this to your list.
:):smile tee

[sacausa]

I aslo thought about a "dehydration induced" flare

[snowgirl]

Jill you and I talked briefly on the phone 6 months ago and you could not believe I was still working. Physically work causes me IC to stress. I am an RN working ten hour day shifts in outpatient ambulatory surgery center. It is one my feet all day and the pace that we have to keep............ this usually puts me in bed or bedrest all weekend to get ready for the next week.

vicky