IC symptoms - common ones for everyone?

[Imzadi]

Hi,

I've had IC for close to 20 years now and I'm curious. What symptoms do most people have? I get hot/flushed feeling and usually my face gets red and kind of itchy, and I've not heard this being a typical symptom. I also get backache, exhaustion, urgency/frequency, loss of appetite and flank ache.

[ICNDonna]

Mostly I just feel like I need to urinate so badly that it's very painful --- kind of like an extremely severe menstrual cramp, but in a slightly different place.

:(
Donna

[SharonA]

I feel like there is a fire in my bladder when I flare. Most days, I have a very slight burning sensation.

[Katrina]

:welcome: to ICN!
I highly recommend some hormone checks....many people find that they had a hormone imbalance as the main contributor to their IC.
I had endo...a definate homrone wacky illness that was flaring around the same time my IC got diagnosed. I had all of your symptoms and it wasn't always easy to tell which was IC and which was endo but unfortunately I had multiple things going on not just IC.

20 years is a lot more experience than most of us but many people that join here can find out that their doctors never shared as much as you learn here...so there are a lot of thigns common among IC patients that may not be "IC" exactly.
I think back ache, loss of appetite, frequency, urgency, ache, exhaustion....very likely to be just the IC.

but the flushed and hot flashes....I would really wonder if you have an infection or hormone problem that is part of that. Regardless not much is unusual among us. :grouphug:

[waterflow]

I have the bladder pain, irratation in the bladder an eruthra, frequency, back pain, some times pain going down my legs. I also have been having flushing and feeling hot where my face gets red but not sure if it is IC related. I've always had a hard time with hot weather and sometimes the furance during the winter time will make it to hot in the house for me.

[Sally939]

My main problem is urgency but I get the feeling my bladder is being stung by bees, back pain, cramps (but not normal female cramps), feeling of really hot urine when I go, and bouts of frequency (almost always food related or really, really, alot of stress)

[BT2008]

Hi,

I've had IC for close to 20 years now and I'm curious. What symptoms do most people have? I get hot/flushed feeling and usually my face gets red and kind of itchy, and I've not heard this being a typical symptom. I also get backache, exhaustion, urgency/frequency, loss of appetite and flank ache. Hey Imzadi,

:welcome: to the ICN!

Most of the things you listed are the exact same symptoms that tell me it is time to change my estrogen patch! I have been in surgical menopause since 2002, and I never have to remember when to change my hormone patch ... The hot flashes/flushes, flank pain and backache are the primary signals that send me straight to the bathroom to stick on a new patch!

And of course, I also have IC, so anything that bothers my IC always increases my frequency! But loss of appetite? Well, even though I have lost over 40 pounds since being hit with IC nine months ago, I have never had a decrease in appetite! :lmao: If anything, I eat more now than I ever did before! :rolleyes:

But many women here on the ICN forum do have worse flares right before or when they are having their periods. I don't know if the hormones are a cause of their IC, or if their flares are a result of the cyclical hormones, but for many there is no doubt that there is a connection. (Thank goodness I don't have periods anymore!:))

So, maybe you should see a gyn and get some blood work done to check your hormones. There may well be something they can give you to help ...

Good luck, and let us know what you find out! We just LOVE all the information we can get! We are true "information junkies"...:lmao:

Take care,
~Beth

[Trishann]

Imzadi, that strange you mention this about the hot flashed and then your face gets red. Sometimes I feel like I am burning up and yet I am not sweating like I should. Sorry I don't know the cause of it, but I believe there might be a different problem that we are facing, especially if you are not sweating normal. If you are sweating normal maybe it could be what Katrina was talking about.

Trish :hi:

[katie87]

reading this is making me wonder if I even have IC, my symptoms are my bladder feels like it is a big heavy ball taking up all the room in my pelvis, where it feels like it was put through a meat grinder, then rubbing alchohol poured on it, then it is put back in my stomach... it throbs all day long, it never stops, and there are PFD spasms, back and bladder spasms, and urethral burning and pain, pain with urination, pain before and after urination, retention, leaking, and the main problem 24/7 feeling of a large throbbing bladder burning and throbbing like it has a pulse, my stomach feels like it has an external bruise, hurts when it is touched. Not 2 be gross but with sex, and even finger/oral stimulation, the urethra feels like its being rubbed and it hurts. I have pelvic pressure like labor pains, but like i've said the most painful part is the low in the pelvis "bladder burn/throb" ......... is this indicative of IC???? the pain doesnt dull ever, it is increased by sex, alchohol, certian foods, sitting/standing lifting basically any movement and I have worsening pain on my period, which feels like I am in labor ( I have 2 Yr old, so i remember the feeling)

I am sorry for everyone with these problems :(

[BT2008]

reading this is making me wonder if I even have IC, my symptoms are my bladder feels like it is a big heavy ball taking up all the room in my pelvis, where it feels like it was put through a meat grinder, then rubbing alchohol poured on it, then it is put back in my stomach... it throbs all day long, it never stops, and there are PFD spasms, back and bladder spasms, and urethral burning and pain, pain with urination, pain before and after urination, retention, leaking, and the main problem 24/7 feeling of a large throbbing bladder burning and throbbing like it has a pulse, my stomach feels like it has an external bruise, hurts when it is touched. Not 2 be gross but with sex, and even finger/oral stimulation, the urethra feels like its being rubbed and it hurts. I have pelvic pressure like labor pains, but like i've said the most painful part is the low in the pelvis "bladder burn/throb" ......... is this indicative of IC???? the pain doesnt dull ever, it is increased by sex, alchohol, certian foods, sitting/standing lifting basically any movement and I have worsening pain on my period, which feels like I am in labor ( I have 2 Yr old, so i remember the feeling) I am sorry for everyone with these problems :(Hey Katie,

There is a wide range of symptoms -- and severity of symptoms-- that are all currently being categorized, in general, as Interstitial Cystitis. More specifically, there are two different opinions of subsets that some physicians are currently using for all sufferers: those with "Classic IC" and "non-Classic IC," and more recently, "Painful Bladder Syndrome" and "Interstitial Cystitis." I assume we will eventually find out what the urology field officially decides to do about "naming" which category we all fall into. (You would think it wouldn't be so difficult!)

Until then, IMO...your symptoms sound very much like my own, in many ways, and I currently fall into the category of "Classic Interstitial Cystitis".

If you haven't already, try to get a more definitive diagnosis from your doctor, especially from the results of a cysto/hydro (which will reveal any actual damage to the lining of your bladder). This test can go a long way in giving your physician a clearer vision of your version of IC -- and with that will come a more specific "name".

Take care and keep hanging in there!
~Beth

[Teresa Stokes]

I'm so confused! I am having symptons of an UTI however, I am scared to go to the doctor because when I go they say it's my IC. My question is, Is it common to have urgency, burning and pain almost every day? I don't think it is a flare; however, it may be a small one that I am having. Please help!

[Teresa Stokes]

I feel like there is a fire in my bladder when I flare. Most days, I have a very slight burning sensation.

Lately, I've had the same issues. Is this normal? When the urologist looked in my bladder last, he said my IC was gone. Can this be so if I am still having burning, urgency, frequancy, lower back pain and much much more?

T

[Katrina]

It isn't always possible to have IC. When you say looked...how did he do so?

You should ask for a culture whenever you feel necessary because it is a process that individual that allows IC patients to determine when they have a UTI. Your doctor has no way of knowing weather or not you have infection without testing for it and until you know your body and your IC you don't know either...so some tests can't hurt. There are some urologists that will test at every visit for their patients just in case...we are dealing with IC and it is hard to know.

Symptoms everyday with IC....Yes I think that a lot of people are dealing with symptoms of urgency, burning, pain...pretty constantly. Regardless it isn't the same for everyone.

[BT2008]

...There are some urologists that will test at every visit for their patients just in case...That's true for me. And, my urine tests always come up negative. In fact, the PA oftentimes tells me that my "urine is beautiful"...!! And, considering I never feel like rising to the occasion enough to even put make-up on when I go to in, at least something about me looks beautiful!! :)

~Beth

[Rocklandgal]

For me it feels like I have a cement block inside of me. Heavy pressure type of feeling. The burning during urination can be amazingly intense. Almost makes me shiver, it is so strong. Usually when I am finished urinating, I feel beautiful relief. But you have to pee again in two minutes. The pain is just an uncomfortable and hard to describe inner pain. It is hard to ignore and hard to have any fun when you have it. As for the red face and and feeling hot, I have that too, especially at night. But, it's from hot flashes and night sweats for me. Glad that you are feeling better.
Karen

[laurina]

If anyone has seen my info on the threads, I was just diagnosed as going through early menepause and put on some topical estrogen....about 6 weeks later all the pain in my bladder started and has been like...shards of glass combined with acid ever since.....Prior to being diagnosed I had a kidney removed and thought that the last 2 years of running to the bathroom more and more every day was a result of having one kidney. I would go as many as 4 times an hour for about 2 1/2 years but never had pain unless I had an infection. I've had hundreds of UTI's in my life due to conjenital kidney defects....and think there is a link between this and having gotten IC.....

Hormones....face flashes night sweats came a few months before this flare that has not left since Dec 08.

Thanks for this thread.....now I see a similarity that I thought might exist

[Briza]

They vary...sometimes they are all present and sometimes it is just 2 or 3 symptoms, othertimes just one symptom:
My symptoms include:


Burning bladder and vaginal/vulvar areas (I also have generalized Vulvodynia, Vulvar Vestibulitis, and PFD, so often my symptoms overlap)
Sharp pinch/burning feeling in the trigone area (lower part of bladder) as soon as I finish emptying my bladder
Pelvic floor/vaginal spasms
Occasionally some hesitancy upon urinating...not often, but sometimes have to start and stop and start again
Extreme bladder pressure (like I am carrying a bowling ball in my innards)
Bladder pain that feels different than the bladder burning
Tired achey feeling between legs in upper inner thigh area
Crampy lower back pain
Frequency
Urgency
Skin hypersensitive to touch on lower butt (like the part you sit on), lower back, lower belly above pubic hair line (this does often make those areas feel HOT...due to nerve pain sensations)
Pubic hair hypersensitive to touch (like a twinge of electric shock when touched even very lightly)
Pain, irritation, nerve pain
sensations, symptoms, irrtation burning often occur during and after sex, physcial and emotional stress, not avoiding my diet triggers, when I am dehydrated....



Yes I have had anyone of these symptoms alone, in combo, or all together. Probably other symptoms that I have forgotten to list, too. Luckily my IC and other conditions are very well managed right now with minimal use of meds by avoiding diet triggers, emotional stress, and drinking LOTS of water (VERY VERY VERY important for me...probably the most important thing for me in managing my IC....as well as relieving myself as soon as I get the urge)

[westiemom]

My symptoms include:


Burning bladder and vaginal/vulvar areas
As soon as I finish emptying my bladder a tugging feeling as if my insides are trying to come out through my urethra (I know this is an odd description, but it's the best one I can come up with)*Extremely uncomfortable
Pelvic floor/vaginal spasms & bladder spasms
Hesitancy upon urinating - having to start and stop and start again
Extreme bladder pressure (like I am carrying a bowling ball in my innards)
Bladder pain that feels different than the bladder burning
Tired achey feeling between legs in upper inner thigh area
HORRIBLE lower back pain that keeps me up during the night even more than anything else, unless I'm having bladder spasms too (I've had all the MRIs, CTs - everything has come back clear so I know it's my bladder)
Frequency
Urgency
Symptoms, irrtation burning often occur during and after sex
Abdominal swelling - better known as IC belly to some (what's odd is that my husband has recently commented several times that he can actually watch it swell - at least I know I'm not imagining things)
Blood in my urine - sometimes only microscopic, but during an extremely bad flare it's really obvious and scary even


I don't have all of these symptoms at the same time, but I usually have several continuosly. They like to swap out on my sometimes, but the most prevelent are the spasms, back pain, swelling and after urination tugging.

[mandycgirl91]

when you say have 2 pee again in 2 min that u just feel like you need to go or when you try there is actual urine?

[laurina]

I have a lot of the same symptoms as Westiemom, bowling ball in my bladder, tugging like my bladder is going to come through my urethra, urgency, and when I pee, It takes a minute or two to start the flow and then stop and then a few moments later while still in the bathroom I have to pee again....other than that I have 24/7 pain and a feeling of glass shards in my bladder. Until recently my urine was not hot...now it is...so I have the burning too. I can leave the bathroom and have to go again 10 min later...especially at night. The Oxytrol has not helped the spasms...and the Elmiron has only been in my system for a month...and the Atarex does nothing for me except to make me drowsy the next day. Maybe I'm just not giving it enough time for the meds to work...but if I don't get some sleep soon I am going to come unglued. The Aterex makes me drowsy but I always feel the pain through the drowsyness. I described to my new uro..it feels like my bladder is disintagrating in my body and that I have the worst UTI ever, If I don't take my Percocet every 4 hours I am at a 9-10 pain level 24/7.....hope that helps.

Laurina

[funinsun18]

Pain 24/7 avg 6-7
Burning bladder and vaginal/vulvar areas
Hesitancy upon urinating - having to start and stop and start again
Extreme bladder pressure
I feel like I'm wearing a tire, bladder,back,hips ect..
Pelvic floor/vaginal spasms & bladder spasms (I can see my belly move,like when I was pregnant)
I feel like there is a little guy stabbing me with his sword in my bladder
Tired achey feeling between legs in upper inner thigh area
Frequency
Urgency
Irrtation burning often occur during and after sex it also feels like my vagina is falling out (a heavy pulling)
Abdominal swelling - better known as IC belly to some





It sounds for the most parts we all have about the same in symtoms