pee collect invention & my tramatic experience

[gwynnie]

Hi all... (ps i am combining 2 stories in one)

my tramatic experience
i went for this video..scope thingy??? on last mon, it was terrible, by the way, the dr did not seem to believe i have ic and when i told him it was painful he still inserted the scope thing into my bladder roughly and it hurt so bad i couldn't stand and he pumped the solution in to see how much my baladder could hole and did not believe that it was such a miserable
amount.. :loco:

it was a tramatic experience for me and he has ordered a cysto and a cat scan for me and i am terrified about whats going to happen .. i am feeling miserable about all these test and check ups that i have to go trough,
i came all the way from singapore to new york and i still cant find a decent specialist dr to help me.. i have a great caring dr from governeur hospital but shes a md..i cant find any dr wh o can understand how more TORTURE i am going through with this illness... i am reallygoing crazy!!!!!!!!! :bonk:

i am in pain24/7 and i cant sleep for more than 1.5 hrs at a go.. i am really disturbed abt me not able to work and i don't have a life,for gods sake!!!!!!!i a m only 24 and i cant believe how i cant stand this for the rest of my life! i have been trying to deal with it since 3 yrs ago and i am rreally losing my will power to carry on! arghhhh i am sick of all the visits to the er for morphine, all the quees at the hospital, all the drs, all the medication, all the expenses and everything.. i am trying my best to look at the brighter side of thingsbut i cant see whats so bright about it at all!!! i am losing all my friends as they cant understand my illness nad depression ,,sighhhhhhhhh i just dont know what to do anymore and i am tired of upkeeping or maintaing the fight for this illness! :cussing:
anyways..i know i have to live on but istill cant stand it! thanks for listening!

the pee collect invention
I am thinking of a new way to collect our pee,
i hate all those cups they give us to collect our pee,
i have to do a urine test so often and its really bothering me.. :bow:

as i have just a few miserable drops of pee, and i have so much pain that i have to wince and curl up in a ball when i pee that i cant really hold a cup when i am peeing right?? i will probably break the cup!!!! and dirty my hands and its sooo gross and after all the messy trouble ,,the nurse tells me i need more pee thann those few drops/.... ---duno whether to cry or laugh... :cussing:

so i thoght of a pee collect invention--its like a drawstring, ziplog bag--maybe the material is a little thicker.. the opening of the bag is the size of the toilet seat.at the top of the bag a little higher than the ziplog thing, is a line of sticking material that allows user to stick it on the butt or the toilet seat when in use.. so that we can stick it on on our waist or butt or rhe toilet seat and pee into the bag...

:woohoo: and at the end of the bag, is a little tube opening/closing thing, someting like the plastic thing they use for our drip you know, when we have to change the drip, they close up this tube thing n when we have injections they just poke it in through the tube thing (does anyone know what i mean???-) and the tube thing can be open to let out the first stream of pee.. if they want to collect the midstream pee and the tube can be opened to release the pee into the bottles or testtubes for further testing... the shape of the bag can be in a horse shoe bag shape..

Does anyone know what i am talking about?/ what do you think of the idea??
i searched online for somewhere to submit my invention but i cant find a suitable site.. any ideas/comment??? :bunny:

[ICNDonna]

Are you taking any medications to help with your symptoms? Following an IC diet? Drinking lots of water?

If you are only urinating a few drops, that could be a sign that you need to drink more.

Also --- it sounds like you may be having spasms, which could be from bladder spasms --- and there are medications that will help.

Sending healing thoughts,
Donna

[gwynnie]

hi, i am drinking water and when i do its like i have to stay in the bathroom forever... or at least every 5 mins the pee just continue leaking and i feel like i am peeing more than i drink..the bladder pain is so terrible i cant sit straight when peeing and at the end of pee i have to cringe in pain and maybe let out a little gas and slowly relax the muscles.. before i can stand.. sometimes its alittle better buti will have continous pee everiy 5-10 mins (but the pain is not so bad..) so its like a lose lose situation.. i am not able to sleep well at all and i cant concentrateon things i do properly cos i lose my train of thoughts when i get the pain n its hard to get back to where i stopped.. :bonk:

[gwynnie]

hi again....
can anyone please tell me what they think of my pee collect invention?????
or am i the only one having trouble with the cups collecting urine?oopppsss

[ICNDonna]

I have urinated in a cup so many times that it's no problem for me. If you are having a problem with it, there is a gadget they can place under the toilet seat to catch it so you don't have to hold the cup.

Donna

[twiggy]

oh my dear, try to hang in there. Sometimes it seems to take forever, but I truly believe they will find something that works for you. It is two and a half years for me and, slowly but surely, things are getting better. It just doesn't happen overnight or as fast as I would like. I am now on my second urologist as I did not find the first uro to be too successful. Each IC patient is so different so it is really a very long trial and error process. The drug elavil helps many of us. Have you tried this drug? Anyway, sending a basket of hope your way. Hang in there!

[DanaW]

I think it is great that you came up with your idea! :) I too have trouble peeing in that small cup! It seems to come out weak and I end up missing more of it than I catch....lol If you are interested in your invention/idea then def. do your research!! Check with hospitals/clinics first to make sure they don't already have something instead of the cup. Good Luck! Maybe this will take your mind off of some of your pain.

Dana W.

[Amyinagony]

:grouphug: Hi Gwynnie- :grouphug:
I'm so sorry that you have been through SO MUCH!! I went through a war with trying to find the right diagnosis and then treatment for my IC. I was treated badly by a few doctors. I saw 11 Uro's (2 were supposed to be 'specialist'), 3 GYN'S, a Neurologist, 2 Psychologist, 1 Psychiatrist, my PCP, plus two of his associates before finding the right one. I made several trips to the ER too for pain control and hoping for treatment. It was an absolute night-mare!!! And I ended up hitting bottom,(almost the very bottom, "not a nice thing at all") that is how I ended up with a Psychiatrist. It was nuts!! And this disease can be NUTS!! All I can say to you is to please hang in there. I know it seems like it will never happen and you are going out of your mind, (I remember feeling the same way), but don't give up.
If this doctor that you are seeing was not sensitive to your pain (the pain that he was making WORSE) and was rough during that in-office procedure I would be finding another doctor ASAP!! He sounds just like one idiot uro that I had, and I walked out of that office and NEVER went back. Does he even help you with any of the pain until he finds something to help you?

I agree with Donna....it sounds to me like you are having bladder spasms (peeing very small amts and the kind of pain you are describing) and they are horrible and can hurt like H E _ _!!!! There is medication that can help that!! I use Levsin for them. I also have Ativan for real horrible ones (which I haven't had since my IC has been under control). They were so bad sometimes that I couldn't urinate at all, and had to learn to straight cath myself. I had the same problem trying to get enough urine for tests!! And, as hard as it is (because of not wanting to pee at all, due to the pain) drinking water, and lots of it will delute the acid in your urine that is irritating your bladder that is causing the spasms. Do you use Prelief at all??? One of the first things my doctor did was to have me take 2-tabs of Prelief 4x/day regardless of what I eat. I have a huge problem with acid throughout my entire body (including severe Acid Reflux), I have to take double the dose of Protonix for that even.

Where in NY are you? I have a fantastic IC/MD. If you are close enough to me, I would come and get you and bring you to her.

Please hang in there. If I can help you to get in to see her, please let me know. I'm in upstate NY.
Finally....LOTS AND LOTS OF :grouphug:

[gwynnie]

Hi all... thank you for your replies....
sigh just have to keep on looking for drs i guess.....
its such a never ending process and its so tedious and frustrating..

p.s amyinagony..how are you coping with your condition? i live in queens..

[ICNDonna]

Gwynn, sometimes you will get further in treatment if you stick with one doctor for at least five or six visits. Many will try the least invasive tests and treatments first, to see if they will work. It took almost six months of visits to my uro before I was diagnosed --- thirty years later I still see the same doctor.

It's very important to drink enough. At first it may seem to make the frequency worse, but if you can hang in there drinking at least six cups a day for a couple of weeks, you may see less irritation. When urine is concentrated from not drinking enough, it can be extremely irritating. You might try drinking bottled spring water instead of tap water.

I hope you find a doctor who will make you feel comfortable soon.

Donna

[Amyinagony]

Hi Gwynn,
I am coping so-so with my IC at this time. It's allergy season and I'm having a bit of a problem with my IC. I've doubled up on my antihistamine and have been doing two instillations/week, to see if it helps. But my IC is not as bad as it was (even now) before finding the doctor that I have now.
I do agree with Donna in giving a doctor time, it does take time, that's for sure. I only said what I said about the doctor that seemed to be rough on you, because I don't think that there is ANY reason in this world for any doctor to treat anyone with roughness and rudeness. I for one, will not stand for it for one minute. If this wasn't the case and I misread your post, then maybe you do need to just keep trying to give this doctor a chance.
There's one of the 'top' IC/MD's in Manhattan, near Central Park, I think it's near the park. Here's some information on him
David G. Kaufman. M.D.
--------------------------------------------------------------------------------



David G. Kaufman,
MD
An Assistant Professor of Clinical Urology at Columbia University School of Medicine and an Assistant Attending Physician at St. Luke's / Roosevelt Hospital and Columbia Presbyterian Medical Center, in New York. In his recently opened Manhattan private practice, he shares his office with a woman gynecologist who specializes in pelvic pain and vulvodynia.

Good luck to you.

[sydney42]

Hi, I'm new here and can't figure out how to just post without replying to someone else's post. Can someone give me some hints? Thanks.

[gwynnie]

hi sydney... you can try the top left corner of each board--post new thread
and thank you donna and amy .. hugssssssssss

[bjt]

HI Gwynnie,
I am in NYC (live in Brooklyn, work in Manhattan).
There is a good support group in Manhattan that meets regularly... have you been in contact with them?
I go to Dr Kaufmann now, and there is also another specialist that is often talked about... I think his name is Dr Moldwin. I can get you contact info for either of these doctors. You should try one or both of these doctors if you haven't already.
Dr. kaufmann is really into Elmiron (oral & installations), and also pelvic floor dysfunction physical therapy.
PM me if you want any of the info for these doctors or the support group. The support group meets every other month, and we just had a meeting. Good luck!
Barbara