just need someone to talk to

[leelee88]

:confused: I know Im new here, but i thinnk yall are the only ones who understand.. I have been crying all day..I had a cysto/hydo/cocktail last 2 weeks ago the surgery went wrong and bladder leaked, went to dr monday and he said everything looks fine now, well i dont feel fine..im not in constant pain but i still feel like i have to pee so bad, when i go i pee some and get a little relief, but the sensation comes right bk..its like a throbbing feeling, does anyone feel this way? please respond and if you have any suggestions it would be so much appreciated.. i did call dr and all he said is this is normal because i had a catherter in me for 10 days.. but its driving me crazy , and i would really like to stop crying..thanks for reading this it helps to know people out the understand..:angel: ronda

[petrie86]

Hey hunnie, I'm sorry your having a rough time... but were all here to support each other. I have those same symptoms although a little different everyday. I have fequency, pressure and burning. I just starting taking Elmiron and I hope it works. I'm on alot of meds and sometimes I gag taking them because mentally I just get tired to taking all these meds. I'm 20 and its very hard to be young and dealing with this horrible disease. I hope things get better and try to cheer up, were here for support. I'll be praying for you (Lots of Hugs)

[Dixiefireball]

My bladder hates a foley, and will pitch a huge fit with me if one stays. I can use a cath, but that is in and out and medicine is replaceing the urine that is taken out so that the bladder wall isn't touching each other. Ochie!

You may have gotten a UTI from this sugery. (that is something for the uro to check) your bladder is still healing from the surgery too!
If I where you I would call him back and ask for some strong pain medicine to help you get threw. If he doens't want to give you any pain medicine please go to the E.R for pain control I would take my paper work with me to show them you just had surgery.
I feel so bad for you. I wish I could help you some way some how!
I will pray for you!!
Sending you tons of hugs and prayers for better days to come SOON!
Rhonda

[leelee88]

thanks petrie for replying. it helps to talk to people.. i just pray i can have some sort of normal life soon.. its really depressing.. today is also my first day being alone since the surgery.. i hate being alone...my husband will be home soon and bless his heart he trys to confort me , but i still feel so guilty..because hes been doing everything.. thanks again for talking to me:angel:

[leelee88]

hey dixie, when i went to dr monday my urine was neg for anything, but it feels just like a UTI with the constant urge and burning and the pressure is so bad.. but im just hoping it want last to long, going to ask dr about an antihistmine.. do u know anything about them? thanks again for u reply.. hope im not bugging u..:angel:

[Katrina]

Hi Ronda although it is possible they just didn't detect the infection yet Other things that cause buringing are yeast infections, Pelvic floor dysfunction (pfd) which I suspect since a hydro is hard on the pelvic muscles and with your frequency maybe you have some retention, acidic urine, or nerve pain.
With extremely high frequency and your bladder looks healthy...I'd want to make sure it is of normal size. Sometimes spasm can be pretty constant and cause a almost constant sensation of having to go. I have that kind of spasm more than I ever have one that causes urgency.

I know my urethra hates catheders it hates a lot of things. My bladder has improved greatly but my urethra is way behind in that game. It is pretty much like having IC just in my urethra with me. Your frequency is soo high though that I doubt that is all that is going on.
http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symtpoms of pfd and more

I hope you feel better soon. Feel free to try to contact me in yahoo or something...your not alone :grouphug:

[leelee88]

thanks katrina for the info.. i must of not mentioned i do have IC, my bladder is healed from the leak but dr said my bladder looked like text book for IC, but i think your right, about the pelvic thing.. so do u know what i could do to try to help this? thanks again for all of yout replys:angel:

[leelee88]

omg katrina, i just read link u sent me... i really believe now that pfd is alot of my problems.. ty, ty now how do i treat it..lol:angel:

[Katrina]

There is a list of treatments there...some of which you need a physcial therapist for. Basic things you can do for yourself: deep breathing, warm sitz baths at least 2 a day...heat and or cold on your pelvic muscles, focus on relaxing your pelvic muscles...when at the toilet be careful not to strain...relax. I use an IC friendly lotion to help relax those muscles when other things aren't appropriate. The hard part is remembering what it feels like to have the muscles relaxed which a physical therapist can help you with! :grouphug: Good luck...trying to get in to see the best physical therapist of my state soon so I can try some of the things out that I haven't yet. :grouphug: Good luck!

[kjd]

Hi Ronda
I have exactly the same symptoms and problems as you. infact it was like reading about my self! I constanty feel the urge to go to toilet and although i get a tiny bit of relief when I go the feeling of needing to go just comes straight back again!
it is so painful and frustrating and like you I just cry all the time. I've had this for 2 years now with very little relief. I used to suffer terribly with urgency too and pressure but this has improved slightly.
I find that drinking water only and nothing else is a big help and also checking your diet.
You are not alone though so try to keep strong! I've only been diagnosed with IC for a year and was also diagnosed with vulvodynia and ibs which make my usual symptoms twice as bad.
I have been to the darkest places with my depression but I can promise you it does get easier and try to stay strong.

what medication are you taking?

kate x

[twc]

I was diag w/ IC one year ago after cycsto and hyro and blasting the stones in my kidneys, since I have had 12 kidney stones, and I have them every three months and the doc says it is just IC pain, my uro sent me to my gyn found endometriosis and cycst on ovaries, I had a complete hysterectomy, after that went back to uro found more stones did cycsto with stint and hydro, ended up in the hospital with fever 105, uti of course, after that I had my gall bladder removed, then had MRI and a small disc protrusion but not operable, started physical thearpy, insurance ran out, sent me to an arthritis doc and he diag me with Fibro, in the mean time I found out I have Herpes Type 2, devasted, married for 12 years, my Husband refuses to be tested, we just have ignored it, but he also claims I make up diseases I see on TV. My hormones are all over the place and he does not understand. All this in one year. Does anyone understand or have the same? I am 35 and I feel like I am alot older.........

[leelee88]

hey kjd, thanks for replying, i am taking ditipan xl and elivil, and loracet plus if i have pain, and continues birthcontrol .. the pain meds help for a couple of hours then everything just comes bk..he also gave me some meds that make my urine blue he said this would help with the burning, but i find when i take them i cant hardly pee at all it just dribbles, so i would rather be able to go and burn than not go and have pain...this desease is so crazy ... it affects so many people, but yet in so many differant ways.. i do think after talking to some people on here that i have PFD with the IC, im going to ask dr about it..i am also going to ask him about valium, because i have been reading that it helps with muscle spasms, but he prob want give them but it want hurt to ask...but thanks again for replying.. i have my IM on profile if u ever want to chat and maybe we can find things that will help us... good luck and god bless you:angel:

[leelee88]

hey twc, ohhh i know about them kidney stones, i had 4 at one time 3 in right side and 1 in left side, that was in august.. the funny thing is emergency room drs said , well there not moving so u should not have any pain.. well duhhhh why would i be there if i was not in pain and the uti test was neg, so at that time i didnt know about IC until a sweet nurse in there said u could have IC and the stones are prob making u have a flare..so next day went to uro, but he didnt think i had IC he said it was because of the stones.. :loco: but anyways after stones were removed i was still in pain and feeling like i always had to pee , so uro scheduled a cysto/hydro/cocktail.and confirmed IC.. but i do understand what u are going through...so if u ever need to chat just send me a line.. god bless you!!!

[kjd]

Hey twc,
wow you have been through a tough time! I havent gone through exactly what you have gone through but in the last year I have also been through the works! I have been diagnosed with IC, vulvodynia, IBS, blood disorder, Chronic Fatigue syndrome and an immune dyficiency all in the space of a year.
It all started with a paracite I picked up in cuba a year ago an since then I have been in agony. I am now a nervous wreck and suffer with anxiety and panik attacks!
I think it will take me a long time to get some strength back after such a stressful time. I am sure you will become stronger too and at least you know you are not alone and others suffer with you too.xx

[ICNDonna]

It does sound like you could have an infection. A UTI can develop within hours so having it ruled out on Monday doesn't mean you don't have one now. You might try a home UTI test kit. They aren't 100% accurate, but if the response says UTI, you definitely should call your doctor and arrange for a culture to be done to confirm.

I hope you feel better very soon.

Donna

[kjd]

Hi Rhonda
I was also taking medication which made my wee blue which was horrible. i couldnt take it either as I just used to go to the loo and dribble a bit and not go to the toilet properly which was horrible.
I am taking the same medication as you too rhonda but I am still suffering with pain and feeling like I need a wee constantly which is so annoying.

Do you work Rhonda? I work full time in an office so find it so hard to cope with these symptoms.
take care
kate

[ihurttoo]

Hi Rhonda
I was also taking medication which made my wee blue which was horrible. i couldnt take it either as I just used to go to the loo and dribble a bit and not go to the toilet properly which was horrible. I am still suffering with pain and feeling like I need a wee constantly which is so annoying.

I was also prescribed a med for this that was blue (Urimar-T) and had the same problem as you do with it.....I would go from the constant urge and freq to barely a dribble, if anything came out at all (although I still felt like I had to go!) My Dr. told me to take 1/2 a tablet instead of a whole one. It works like a charm! It seems a whole one works so well that I go into retention mode, but 1/2 is just right! You might ask your Dr. if your med can also be split. If it can, and 1/2 is still causing this problem, 1/4 might work. Make sure you ask your Dr. first, just to make sure it is okay.

Hope this helps!

Hugs,
Amy

[leelee88]

thanks amy, yeah thats the name of the medicine, i will try a half of one ... dr said that was fine . thanks for the info

[leelee88]

hey kate, well i have been on leave for 3 weeks now.. i work for walmart, they have been really great to me..i want to go bk , but i dont see that happening anytime soon, and with christmas coming up its going to be hard.. my husband works, but it only helps some..but my kids are so understanding. they have surely been my strenght, poor things have been through so much...they lost there father then 3 years later we lost are home due to hurricane katrina, but we have survived and i know we will get through this to.. thanks for all your replys im so greatful to have found all of u:angel: