Something Odd

[amylr]

Now this probably isnt related to IC at all, but then again IC is so darn strange that you just never know! Anyway, Ive been having some odd doubts as to whether my IC diagnosis is actually on target or not. I have noticed that many people have pain as a main symptom, however, I do not. My main symptom is urgency/frequency and I rarely get pain. The last time I can remember having pain was about 6 months ago, which I concluded was just an ovarian cyst that ruptured. I have a history of Ovarian cysts and was once in the hospital due to pain from a ruputured complex cyst on one ovary and simple cyst on the other. On the rare occasion that I do experience pain, I consider it must have something to do with that. Also, as far as I have been able to figure out, I dont really have any food triggers. Things just dont add up, but then again maybe I just dont have enough knowledge yet.

Anyway, I have this odd lump/hump on the back of my neck and have had it for quite some time. My boyfriend always refers to it as "The Hump" since its pretty noticable if I do not have my hair covering it up. I know, this probably sounds silly since a lump on the neck probably has nothing to do with IC at all, but does anyone have this too? Also, I seem to always have extreme muscle tention in my shoulder area. Does anyone know of any other condition that could show signs of IC but not truly BE IC? Im just so confused. I had the Cysto/Hydro performed and it confirmed IC, but I dont really seem to have many of the classic signs other than severe (in mu opinion) frequency. I tend to get a flare (which means extreme frequency) atleast once a week and have been keeping track of them for about 2 months. In that period of time, I have had 18 "flares" with urgency/ frequency. Thats common though, right?

Anywho, sorry for boring everyone with that long, drawn out post. So, what the heck is this? lol

http://i456.photobucket.com/albums/qq283/AmysAnimals/untitled-2.jpg

[vm]

I've never had pain with my IC either = just urgency/frequency, bladder awareness - felt like an awful UTI. A lot of us have never had pain with it.

[dyno]

I rarely have pain with my IC and only when I am flaring bad. Mine is just the freq. and urgency.

As far as the lump goes, please go to your Dr. and have it checked out.

[ICNDonna]

I agree. You need to see your doctor about that lump.

Donna

[amylr]

Im going to visit my family doctor next Tuesday to discuss IC and a recommendation for a new Urologist. I intend to bring up that funky little lump during the appointment. I wonder if its just an odd formation of my vertebrae. The only thing that Ive ever seen that comes close to the appearance of that lump is a Buffalo Hump caused by Cushing's disease. Ive been tested though [my doctor randomly tested me for it when I first complained of bladder problems] and my cortisone levels were only slightly elevated. For now I guess its just a mystery.

[KarenAnne]

You need to see your doctor & get a referral to a specialist for that area on the neck. That is not an odd formation of your vertebra. Did your dr. explain why your cortisal levels were elevated?

My main symptoms are urgency & frequency w/ some pain. IC presents differently in each patient. Are you on the IC diet? Even though you say you don't have food triggers, certain foods can cause urgency & frequency.

[KristyKay]

Me too...no pain. Just frequency during the day. I don't even have urgency.

To me that is the most frustrating thing about this whole thing...no 2 people seem to be alike. I feel like this has to be several different conditions that have all been grouped together under the term "IC".

[amylr]

I feel like this has to be several different conditions that have all been grouped together under the term "IC".


I completely 100% agree! It seems like there are different categories of IC-- it would be nice if doctors actually realized this too lol.

[katjonez]

I too an frustrated by all these differences. Now the NIH ( National Institutes of Health ) has come up with one symptom out of what?, over 50 different symptoms, as the marker for IC. Now they say that if your bladder can hold a large amount of urine they NOW say you DO NOT HAVE IC !!
I lived for 6 years with bouts of frequency, urgency and PAIN. I was diagnosed 10 years ago with IC from all the ( bladder infections and kidney infections that never really were infections ) and from a cystoscopy with hydrodistention. and NOW 10 years after my diagnosis and 8 years on a lot of morphine they tell me I do not have it !!!! GET REAL!! I have many food sensitivities.
The new dr. got one thing right, she told me I have PFD Pelvic Floor Dystfunction. I knew I had it but the dr. I saw 5 years ago told me I did not have it !! I knew I had it but now they are trying to tell me that I do not have IC but only PFD !! I know that information changes and they are learning new things all the time but COME ON !!! :bow::bonk:

I will admit....... the new therapy they have me on with the new meds is really working !! I still have bouts with frequency and urgency but the pain is getting much better. Can you believe it ..... the pain is better now that I am OFF OF THE MORPHINE AND SOMA !! I started the Lyrica long before going off of the Morphine. I just stopped the SOMA :woohoo::woohoo:

sorry I made this soo long ......... I guess I have strong feelings on the subject !!:dizzy:

[KristyKay]

Katherine -

I SO feel you on that! :smile tee

I can hold it - no problem and when I go I really go. Yet, I'm told I have IC. (according to my uro).....It just makes you want to scream!!!!! I don't have nocturia and I have also read that daytime frequency in the absence of nocturia points to something OTHER than IC. AARrrggghh!!

It's frustrating when you just want a definitive answer and there is nobody that can tell you for SURE - 100%. Having said that, I am feeling pretty normal after a while on the diet....proof? Who knows.

I am glad you are feeling better. I would imagine it is much easier to be rational when you are not in agonizing pain.

Be Well,
Kristy

[c2miracle]

Mine is more pain then frequency/urgency. When I'm in a really, really bad flare it's EVERYTHING! :toilet:
AMYLR Please get that lump checked! :)

[amylr]

Katherine -


I can hold it - no problem and when I go I really go.


Oh how I envy you! lol :smile tee

[SharonA]

One more vote for getting a doctor to take a look at the lump. :)