ANNOYING

[Lacey]

Hi,its me again..I am still waiting to get into the gynocologist before they will even let me into see a uriologist..im sick of waiting,im sick of day by day going through this pain and annoyance.I have noticed a pattern,when i get done eating dinner BOOM the feelings of a UTI,and "sharp"feelings in my bladder begin to occur along with the feeling of having to urinate and the pressure.Is this normal?I ate fish filets and mac n cheese tonite...whats the deal??I just wanna see a doctor and I PRAY he will be one to look into detail.I have been keeping a journal with when i have the pains times and dates,and just started writing down what it is i have been eating.I have the feelings everyday almost,but there are some days I dont have any symptoms.They occur mostly after intercourse and eating.I just wanna know whats going on. banghead

[Dixiefireball]

hello lacey,
this is normal :( have you tried the ic diet that is listed on the boards? it will help you know what to watch out for.
maybe prelief will help you take it before you eat.
i hope you find some more answers soon if there is anything i can do to help please pm me threw the boards i will be more then happy to help if i can.
grouphug Rhonda.

[Sarojini]

Hi Lacey,

I'm so sorry to hear that you are having such trouble. Waiting to see doctors can get old pretty fast, can't it? grouphug

I hope you can find out soon what's going on. I hope it's not IC!!!

If you want to talk, you can PM me through this site if you like. I'm here!

hi Jen

[kelly McC]

Hi Lacey,
Your story is much like mine ! The same thing happend to me ! I hope you get relief soon ! grouphug Good luck at your appointments
Kelly

[Lacey]

Thank you everybody for all the quick replies!!!
I just wanna find out whats going on.If the doctor tells me its nothing im gonna see another doctor I cannot stand this,i just want them to give me something till im able to see the darn doctor.My symptoms are the worst during my menstral cycle,and they dont seem to be bad after that(except when i eat sometimes,or have intercourse)Once again THANK YOU grouphug

[dyno]

Hi,
All the times you say you are having trouble are pretty common with IC. Hopefully you can get some help soon. Hang in there. grouphug

[Dixiefireball]

just checking in i wanted to see if you was feeling any better I hope so. please let me know how you are.
Hugs and Prayers sent to you.
grouphug angel Rhonda

[lacey231978]

Well for some reason it wouldnt let me log into my other name so I had to make a new one..as far as how Im feeling??Well,I went to see a gynocologist today,she gave me the exam so when i get my results back i can go see a uriologist..the thing is she checked for blood in my urine today,and the results were horrifying..her EXACT words were "yup,you have TONS of blood in your urine and you need to give the dr the okay to go see the uriologist.I am scared and I cried a lil bit.I think everything will be alright though.I guess it was the words"tons"that made me freak out.I kinda told her what my family doctor said about his suspicions about me having IC.I have to now go talk to my family doctor and get a referal.I have been feeling decent,as I mentioned my symptoms are worse and BAD right before my period comes,I am having the pressure tonite,and kind of feeling "menstral like cramping"?is this normal?Thanks for your concern of my well being..ill keep you updated:hi: :kissing:

[yorkyloverx3]

hi I am new to the boards also, but have found this to be a lifesaver. At least you can communicate with women who really understand the 'pain'. YES my pain has always felt like really bad menstrual cramps. I always thought that was what the pain was just cramps and was always worse right before and during my period. Well I had a hysterectomy a couple of years ago, and the pain stopped for awhile. I guess I was in remission and just didn't know to be thankful! Now the low pelvic cramps are back and worse than ever. :eek:
I pray you will soon get a confirmed diagnosis, at least knowing what it is .. helps to know what to do. Hang in there and know you are NOT ALONE. let us know what is going on.
you will be in my prayers.
Denise :grouphug:

[lacey231978]

Thanks so much.It seems like recently ive been getting the menstral-like cramps..and the lower back pain :mad: IT HURTS!I have also noticed my abdomen swelling...i dont know if that has anything to do with that or not.I am so scared about the "tons of blood in your urine"comment.I hopefull will just get a diagnosis soon..thanks for your prayers.My prayers are will all of you as well.:grouphug:

[Katrina]

:grouphug: I know the fear......we are here for you. From what I have read of your posts I would guess you have IC....and a smart family doc. Blood is not that uncommon in your urine for IC patients. I am so so so so so so sorry that you are already having bladder pain (atleast that is what it sounds like) and you haven't been diagnosed yet.


Anyway, WELCOME TO THE ICN!!!!!!!!!!!

Don't worry....whatever it is we will help you through it.

hugs,

[yorkyloverx3]

Yep I have the tummy swelling.............:mad: it has been so bad recently, I can not stand to wear pants at all. (can't even get them zipped) So I have to wear those :frown: yukky tent dresses. and sweats on weekends.
Hang in there. love Denise

[lacey231978]

I had the WORST menstral like cramps EVER last night.I just stayed my butt in bed this morning they were so bad.I dont think any of my family understand the torment im going through,if this isnt IC disease what is it?My hubsand grandma said"well lacey,you dont look like someone with a disease,your skin color looks good,your eyes are bright,and you havent been losing any weight(she is a RN)"she also said.."you might have gall stones or kidney stones"but the thing is FOR A YEAR NOW???Last night I felt horrible i wanted to go to the hospital.I had urgeny like you wouldnt believe..at night.During the day i has frequency..what else could this be that i am doing this...its killing me.My family dont understand anything and dont act like they really care...thy act like this is a minor thing.:mad: :banghead:

[yorkyloverx3]

I am so sorry you had a bad night :grouphug: You need the support of your family now, how awful they have been to you. Just vent to us. WE know how you feel and are hear to listen.:grouphug:
love Denise

[MakinIT]

Lacey

I'm sorry you're suffering and your family doesn't understand. Maybe once you get an actual diagnosis they will be more sympathetic..who knows..however, it may help to get some information from this organization (I don't know the actual website..duh...) but you can do a search for Interstitial Cystistis Network on Google or whatever and on that sight there is plenty of info for you to read and some stuff you can print and pass around to your familly (especially the RN) so they understand why you feel the way you do.

Best of luck to you. We feel your pain. and BTW...blood in my urine was the first step that sent me on my journey to my eventual IC diagnosis. It took 4 months from that urinalysis that showed blood, to the biopsy in September.:rolleyes: That showed whether or or not I had the disease. (It was a big yes.)

Tracey

[lacey231978]

I am having those menstral like cramps again today..i feel like im in contant pain,my whole body hurts (kinda like how you feel when you got the flu).The dr mentioned something about going to the uriologist to go get my bladder"dialated",im scared but im making an appointment with my family dr tommorow to get my referal.Thank you ALL SO MUCH for your support and prayers and advice.:blink: :grouphug:


P.S.
Do you any of you get these constant menstral like cramps?I have had them for 2 days now..why do you get them?If any of you have a site where it explains this please let me know.Thanks

[MakinIT]

Well...I'm not entirely positive about this but I think it feels like menstrual cramps because of where it is in your body. (I've had a complete hysterectomy...at 35 yet I still get horrible "cramps") READ,READ, READ, about this disease....Usually its my bladder cramping and sending all kinds of fun signals down the pain highway in my pelvis. Othertimes its just my lower pelvis acting like a jerk. The other thing the urologist will talk about is PFD..that is pelvic floor dysfunction. Those of us in such pain "down there" tend to unconsciously tighten our perineal muscles (those around the ureter, vagina, anus, and in between) therefore we get very sore and tender muscles. Think about when you strain your back or a part of your body from repititive use...sort of the same thing. They do have a therapy program for that but that, and all of its fun explanation is another day.:D

As for inflating your bladder...you'll be out (asleep) they fill your bladder with water, as much as it can hold then start draining it to measure it's capacity. Then they will physically look at it with a cystoscope (kinda of a microscope up your ureter) then they take a biopsy to check for mast cells. For me, I held 550 ccs (I think normal is like 800-1200 under anastesia) had a little bit of cracking in my bladder, not much (enough though that they could figure out where the red blood cells were coming from)....the original uro came in and said he thought it looked pretty good maybe just a mild case. I thought I was nuts because I hurt so bad. The biopsy results came back though and I guess I had tons of mast cells (those indicate inflammation in the bladder wall-hence, IC) :p The surgery itself wasn't bad, but I didn't care much for recovery. It hurt like hell for about a week afterward. Other people have an easier time.

It is a slllloooowww process because it is a disease of EXCLUSION..ie they try to rule everthing else out...and docs don't really like to saddle you with this disease. (I would sincerely hope that's the reason so many are reluctant)

Good luck...keep us posted!Tracey

[Katrina]

Often IC puts us through a lot of suffering without it being noticable to others. We still look good......but are suffering a lot. Many people go through that with IC...common problem of getting others to understand...because they can't see it in you.


None the less the suffering is real....and the disease is real. It is very, very very real.

I am sorry your family isn't being understanding.....but do not feal alone....we are here for u.


I hope you get relief and understanding from your family soon.

love and hugs,

[lacey231978]

Thank all of you SO much!!!!:grouphug:

[valleygal]

Hang in there honey,you sound like most of us in here.Don't be scared about the blood,I had the same thing,and a full hysterectomy,until they finally figured it out.Family and friends sometimes don't get it until you are diagnosed.Mine still don't get it because I use to be the big care taker.Now I'm taking care of myself.Good luck honey.prayers and hugs to u,Coleen sunshine:angel: