HELP! Urinate every 30 seconds!

[missgrl29]

TO ANYONE: I urinate every 30 seconds, sometimes try to hold it
10 minutes. I've been to 7 urologists and 2 urogyn. no doc can figure
out what i have! I've had all the test for IC, don't have it! My bladder
looks fine and only holds 7 ounces under anesthesia! The doc says i should be able to hold it 1 and a half hours b4 urinating, but i can't and i get up every hour at night to urinate and that is with taking 150 mg. of Trazodone,
5 mg. of ambien, 25 mg. of phernagan, and 40 mg. of celexa. I've been dealing w this for too long! It started 9 years ago when i got pregnant and
the urinary frequency has not stopped since pregnancy, never got back to
normal! 9 years ago i urinated about every hour and every year that passed
it got worse and now it is bad bad! I've had everything possible to try to fix it or help it! All meds, Cystocele and Rectocele surgery w mesh, patch, bladder stretching a number of times, interstim, 400 units of botox, etc. U name it and i've had it! I am 29 w a 9 year-old daughter that i need to take care of and can't money-wise right now cause i can't work like this! My uro at University of Mississippi thinks i need urinary diversion w my bladder out, he is 99% sure that will work cause w no bladder can't make urine, no urinary urgency or frequency! He does not know if it will work for me if i don't get bladder out! Trouble is he does not do urinary diversion and a doc i've seen b4 that does told me she will not do it for me and doesn't know anyone that will for my very excessive urinary frequency only symptom w occasional shrap pains n abdomen! I need this surgery and i need to find a doctor in Mississippi that will understand my major problem and that will do it! I have Mississippi medicaid and need a doctor around here to do it, sometimes a few areas in Tennessee or Alabama might accept Mississippi medicaid, like Memphis or somewhere close to where i live! Also does medicaid usually pay for this type of surgey and if not how can i get this surgery w no money? Anyone that knows anything please please tell me something!!!!! Thanks to all that help!!!!

Missgrl29:toilet: :pray:

[Sally939]

They say you do not have IC. Have you gotten a biopsy? I believe someone else lookeded like they did not have IC but had a biopsy and they had a high number of mass cells.

[missgrl29]

Curl333 yes i've had a biopsy, docs say i don't have ic! Right now it's not the question of what i have it's where can i find a doc to help me? I was on the ic diet and Elmiron a long period of time, didn't help! I'm not as worried about what i have it's where can i find a doc to do urinary diversion w bladder out n Mississippi??? Every time i ask a uro that has seen me b4 they always tell me i don't do urinary diversion an they don't know a doctor that does! My doctor's don't wanna take the time out to help me, that's why i'm on here maybe someone kind enough could give me any info to get me started in the right direction! I can't pee every 30 seconds the rest of my life and i get no sleep at night and am miserable 24/7!!!!!!

Thanks Anyone???????
Missgrl29:confused: :toilet:

[Moad]

Hey Missgrl29, I wish I had an answer for you. sadly I dont. But I just wanted to say I'm sorry yuor struggling so baddly. when I have BAD BAD flare ups with my IC, I pee well pretty much constantly. the last time I was on the toilet 3 days straight...didnt leav it even slept on it. so I can "kinda" understand, but couldnt imagine going through it ALL THE TIME! I hope you get some answers and soon. you nust be exhausted. I will keep you in my thoughts and prayers. Take care!

Melody :(

[Sally939]

I still have my bladder and am new to IC. Try PMing Judith maybe. Or call the ICN phone number and talk to Jill. There is a doctor Raz I have read about. Type his name in the search bar. You would have to travel but maybe he can help you. I hope you get some help. Feel Better.

[long journey]

hey big hug.... I can understand the constant peeing... I am in depends ... I have gotten a diagnosis of IC and going all the way to Calif to get the help I need. I wish I knew a good dr in Miss. Keep up communications on this board odds are someone can help, this is where I got my help. Please feel free to pm me again if you think I can do something for you. I am here for anyone suffering, period. :puppy:

[Texas Baby]

Missgrl29,:hi:
I would try getting a hold of Dr. Sholmo Raz for an opinion or Dr. Brookoff. Dr. raz has helped several patients on this board and they can give you his contact numbers. Dr. Brookoff is another IC expert that can maybe steer you to a specialist in your area that may be able to help you. i wish you good luck ! Dr. Brookoff's info may be in the ic info guide somehwhere or you could contact Jill.
Wishing you
Blessings & Hugs,
Eva

[TexasHoney]

I hope you get some answers real soon.

Hang In There

[Babs RN]

I have seen Dr. Raz and he is the GOD of female urology. Only problem is he is at UCLA in California. I don't really know anyone in your area. I saw him to be worked up for bladder removal and then moved. Judith and Kara are excellent resources in this area as they have both had the procedure done. There are also a few people who are freshly post-op from the surgery that hopefully will pop up.

Hugs,
Barb:hi:

[missgrl29]

Thanks to all that gave me info, more than what i get from the doctors
i see in Mississippi! Does anyone know if Dr. Raz will do surgery w no money??? Monthly payments??? I only have Missippi medicaid!!!!


Thank u,
Missgrl29

[Texas Baby]

Mssgrl29,
I would PM AKRose, like me she had her bladder removed also. She just had hers done and I had mine done in FEb. this year. Dr. Raz did hers though and I bet she has his contact info. Maybe she can give it to you. Judith56 is was and still is a great help to me as was Kara. Good Luck to you! Maybe since you are on Medicaid in your state it would transfer to California? Have you checked into that? Just an idea.
Blessings & Hugs,
Eva

[Kara29]

There are other doctors that do this surgery. I had mine done in MA and NYC. My Doctor trained under Dr. Raz. He did an Incredicble Job on my reconstruction, urethrectomy, and Indina Pouch. Each case with regards to Money is between the Doctor and the Patient. We can't really say if a Doctor would do such a procedure with out money.

Kara

[Judith56]

I am sorry that you are in a such a bad way. I wish that I could give some info, but I unfortunately I am not familiar with Medicaid restrictions and if it can be used in anopther state. Because you have not been diagnosed with IC I dont know if any of the doctors listed on this website will be willing to do the surgery. All you can do is contact them. I would talk to your uro and since they do not do that type of surgery maybe they can refer to someone who will. I wish you much luck in your journeys.

[missgrl29]

None of my urologists i have seen will help me, they always say they
don't know a doctor to refer me to and never takes the time to find
me one! I have to do the researching and i don't understand! Will most doc's not do bladder removal unless u have IC? Do u have to have pain w IC also to get bladder removed? Is urinating every 30 seconds not reason enough to take my bladder out, if every doc i've seen don't know what's
wrong w me and can't help me! My capacity is only 7 ounces under anesthesia! Does my capacity not count for something? I know nobody here is doc's and can't tell me whether a doc can do it or not that i have to be seen by the doc first, yes i know all that, but my question is what do the doc's usually look for to have bladder removal surgery??? Does anyone know a doc that has done bladder removal for only frequency, if so please give me the doc's name, if u want u can private message me! I called Dr. Raz and he does not accept Ms medicaid and i don't have the money upfront like they want! Isn't there someone that can help me money-wise or work w me on payments any doc anywhere????? Any Charity??????

Thank u,
Missgrl29

[dg2901]

While i'm not any help regarding bladder removal, I do have a bit of knowledge regarding charity cases. Most hospitals (major ones anyway) have a charity fund. To find out if the hospital you're interested in working with deals with charity cases, ring the hospital and ask for the billing department--they will know whether or not they deal with charity, and if so they can refer you to the proper channel(s). Another way to find this information would be to contact MS Medicaid and inquire (though I think it would be easier to contact the hospital directly).

Hopefully you'll find the help you need very soon.
Wishing you well...
D

[Judith56]

I know that doctors must follow certain criteria for bladder removal. Thye will do for cancer, birth defects, accidents if the bladder can not be saved and in very bad cases they will do it for IC. When I had mine out it was very rare for them to do it for IC, Every hospital has a review board in which the surgeons must justify why they did each surgery, etc. I would ask your uros what they consider to be the reasons for bladder removal and what teh criteria is. I feel terrible that I can not answer your questions, that I am not able to sterr you in the right direction. I can certainly tell how frustrated you are, I would be too. If I can think of anyway to help you I will certainly post my suggestions.

[missgrl29]

Thanks and i called Dr. Raz and emailed him, no reply back yet,
it's been 5 days! I will call every hospital and ask for charity if
i have to, thanks!!!!!!!!!

[BrittanysDance]

just curious but have you tried bladder retraining? physical therapy? ESTIM? TENS? Any other medications (elmiron, neurontin, gabatril, ditropan, etc)


Lots of hugs,
Brittany

[Kara29]

Missgrl29,

Dr. R is a very busy man these days. Give it a few weeks and some patience. They have lots of surgeries to do and families too. Hopefully he will get back to you when he has time to discuss things with you in detail.

Maybe one of the other thousands of IC treatments could help to relieve some of your pain. I hope you find a great urologist to help to fix what may be going on with you if it's not IC. Have you seen the IC Specialists in your area? They are listed by state here: http://www.ic-network.com/md/doctorlistings.html

The retraining issue may not be a treatment in your case. It's best to talk to your Doctor about any suggestions you see here as we are not medical authorities. You wouldn't want to hurt yourself trying something that is not in your treatment plan.

I'm crossing my fingers that you find a great Urologist to assist you as soon as possible.

Kara

[long journey]

I saw him today... his office is crazy busy!! I am surprised that everyone keeps the great attitude that they do! The staff is incredible and it is obvious that they are doing what they are meant to do and WANT to do it.

I'm posting an update under bladder removal... please check it out

[leelee88]

I am originally from Mississippi and have heard some good things about these Doctors in Jackson, have you contacted any of them? Even if these doctors do not perform bladder removal, maybe they can point you in the right direction..

These Drs are located in our Patient Handbook..

JACKSON
Women's Specialty Center & Southeast Urogyn - Robert Harris, MD, Steven Speights, MD & M. Jackie Williams NP-C, 501 Marshall Street, Suite 600, Jackson, MS 39202 - Phone: (601) 948-6540

[missgrl29]

I,ve had test from head to toe! I have a bulging disc, but doc said
a lot of people have it that it's not pinched, it's normal! I've gotten
a steroid shot in it b4 to try to relieve pain but it didn't help! Yes i've
had all the things done u listed! and interstim on both sides and 400
units of botox injected into bladder! Nothing has ever helped! My doc's
always say i have a very unusual case that they don't know why and
don't know how to fix it! I called a doc n Jackson i've been seeing a year
and he told me he has nothing else for me that bladder removal is the
only other option but he doesn't do it! I urinate every 30 seconds and when
i do try to hold it 5 or 10 minutes there is a very strong urgency feels like
the kinda urgency when a person is pregnant and baby is pressing on bladder!
It's easy to say give it time, but when i'm sitting here every minute peeing
and losing my mind over this i can't wait much longer!!!! I've gotten in touch
w Dr. Raz but right now i don't have the money to fly to see him and my
Medicaid cancelled! I've had this for 9 years though it's gotten really bad
this last year and no bladder retraining and only drinking water, IC diet none of that helps me cause i have this so severely don't think anything will help
besides bladder removal!

[BrittanysDance]

missgirl,

sorry that you've been through everything....and nothing seems to help or has helped. Why did they cancel your Medicaid? That seems a bit drastic to do something like that - I've never heard of having that done ever, especially if you are still under medical treatment / care for this medical situation.

I hope you get some relief soon and find a doctor willing to assist you.

hugs
Brittany

[missgrl29]

Brittany,
Also i asked my pain management doc if bulging disc could have
anything to do w urinary frequency and he told me no it is not
pinched! Also asked another back doc b4 i went to pain
management center to try to get my back pain relieved. Right
now i'm so worried bout getting my bladder normal i put ice and
heat on my back to help w the pain. My back hurts 24/7.
I did get 2 doses of epidural b4 delivery of my baby 9 years ago.
Ever since then it's been hurting, don't know why.

Thanks for the info but nobody understands what i go thru
everyday!!!!!!!!!

:toilet:

[missgrl29]

Brittany,
My x-husband decided to start paying child support and medicaid
told me me making $422.00 a month is too much to receive
medicaid! I live in Mississippi and my medicaid worker told me i
couldn't make over $297.00 a month to get medicaid, so they
cancelled it!

[missgrl29]

Brittany,
No i haven't been to a neurologist, thanks i will check it out though.
I live in a small town and my the pain management doc i seen did
not tell me that! I asked him 3 times if there was a possible chance it
could cause urinary frequency, his answer NO that i need to see a
urologist! Thanks and i will look into it!

[dverba]

Everyone here DOES know what you are going through. We all have bladder problems. I always have and urgent need to pee! I think the point you are over looking is what would be the results of having your bladder removed? You may end up having to cath your self many times through out the day, some times with removal and reconstruction the symptoms come right back. No bladder does not always equal problem solved. Do you know what you would do after your bladder is removed? Meaning, what kind of subsitute are you looking at to replace your bladder? Your body will still have to produce and release urine. Just be careful not to jump from the fire to the frying pan.
DeAnna

[Texas Baby]

Mssgrl,
have you thought about contacting your state Medical board ? Maybe they can be of some service. In Kansas there used to be a number that you could call and tell them what you needed and they could hook you up with the doctor you might need to see. As for medical charity a lot of Cathlolic hospitals and clinics will do Medical charity. They have funds set up specifically for people who cannot pay. By the way it is not your discs that cause the urge to pee, it is the sympathetic nervous system and the basil ganglions and the bottom of them among other things and yes it runs along the spinal cord. These are just some of the things that can cause the gotta go urge. I am so sorry that you are in so much pain. I hope you find the answer soon.
Hugs & Blessings,
Eva

[suzyqq68]

My back has been killing me for 15 months now. My doctor recommended physical therapy (actually on my 2nd doctor now because my last physician dropped me as a patient). None of them have seemed to make the connection between my IC, frequency to urinate, and back pain. It's ridiculous!

[Claredale]

TO ANYONE: I have Mississippi medicaid and need a doctor around here to do it, sometimes a few areas in Tennessee or Alabama might accept Mississippi medicaid, like Memphis or somewhere close to where i live! Also does medicaid usually pay for this type of surgey and if not how can i get this surgery w no money? Anyone that knows anything please please tell me something!!!!! Thanks to all that help!!!!

Missgrl29:toilet: :pray:

I don't know of any uro/gynos in Memphis that will do bladder removal. I go to Women's Health Specialists and they have the leading doctors working with IC now that Dr. Doggweiler is up in Knoxville. I don't know if they take Medicaid or not.

I hope you find the help you need. I am so sorry that you are having so many problems.

Tracey

[Kara29]

Missgrl29,

Many of us here really do in fact know what you are physically feeling everyday. That is what the support group is all about. To let you know that we can understand your pain. You are not alone. We are all here as whole including the other message boards other than just bladder removal.

We are all here to offer support and encouragement and to share our experinces but no one can really tell you what to do but your Doctors.

I hope you find someone to help you soon and get you on the right road to healing and living.

My thought and prayers are coming your way that you get the right doctors to figure out what is the best form of treatment for you.

P.S. Maybe some of these IC Specialists can help steer you in the right direction. From the ICN Physician Listings for the US. I've got the one Leelee added too. I just thought maybe some of these others could help too.

Mississippi

COLUMBUS
Wesley Barrett, Certified Family Nurse Practitioner (CFNP), Columbus Urology, 321 Hospital Drive, Columbus, Mississippi 39705 - Phone: (662) 327-2921
Interests: diagnosis, diet and education, and medical treatment of IC.

JACKSON
Women's Specialty Center & Southeast Urogyn - Robert Harris, MD, Steven Speights, MD & M. Jackie Williams NP-C, 501 Marshall Street, Suite 600, Jackson, MS 39202 - Phone: (601) 948-6540

STARKVILLE
Gordon M. Castleberry, MD - Starkville Urology PLLC, 104 Drs. Park, Starkville, Mississippi 39759 - Phone: (662) 324-1097, Fax: (662) 324-2412
Starkville Urology specializing in treating IC with diet, current drug therapy and biofeedback. We also have NE Mississippi's newest IC support group. Meetings are scheduled monthly.

Laurie Mckell, FNP-C - Starkville Urology, 104 Drs. Park, Starkville, Mississippi 39759 - Phone: (662) 324-1097, Fax: (662) 324-2412
Director and co-founder of the Golden Triangle IC Support Group. Member of the Society of Urologic Nurses Association. Specializes in state of the art IC treatment. LEARN TO LIVE LIFE WITHOUT LIMITS!



Hugs,

Kara

[missgrl29]

Dverba and Anyone,:confused:
I talked to a doc in Jackson at the University that i've been seeing over
a year now and he told me he has nothing else for me that bladder removal
is to consider but he doesn't specialize in bladder removal, but he did tell
me if i got bladder removal i would have NOMORE URGENCY AND FREQUENCY!!!!!!!! That is my main problem feeling like i havta pee every
second i am awake an do urinate every 30 seconds and if i hold it 5 to 10
minutes i have a very strong urgency that hurts if i don't urinate and get
it out!!!!!! I'd rather have pain anyday than the feeling of URGENCY AND
FREQUENCY EVERY SECOND I AM AWAKE!!!!!!!!!!! At least their r pain meds that can help, so far there has been no URGENCY AND FREQUENCY MEDS that help me NONE WHATSOEVER!!!!! INTERSTIM AND BOTOX HAVE BEEN OF NO HELP TO ME ALSO!!!!!!!!!!! I will probably havta get the indian pouch, have an appt. to see the doc about it! I don't care what it takes to stop peeing i will do it cause i can't keep living my life like this!!!!!!!! No life, No job, No Money, and most importantly i can't be a good mom to my 9 year-old daughter like this! She deserves a better mom that can go outside and play w her and go places w her w/o me having to find a bathroom and be grouchy every second of the day!!!!!!!!!!!!!!!!!!! I deserve a better life also for myself!!!!!!!!!!!!! My doctor in Jackson did not tell me the URGENCY AND FREQUENCY could come back w BLADDER REMOVAL!!!!!!! R u telling me i could have bladder removal and still have the feeling to PEE EVERY SECOND???????????????????? ANYONE THAT KNOWS THIS ANSWER PLEASE TELL ME!!!!!! I know i needa go to my doc with the questions, but i want to know now, i'm already stressed enough bout the surgery and to think it might quit working????????????????????????

[dverba]

No one realy knows our limits except our selves. In the end you do what you feel you have to do. Being educated is the key. Make decisions based on facts and not emotions. I am finding alot of info on the net about IC and surgery. It sounds like you have surgery set in your mind. I would rather have the urgency verses the pain. Right now I have both. But that is my thinking. Each of us are so different.
The first thing I learned from this site was that many people have to train their bladders to hold it for longer and longer periods of time. That does not mean that the urge to go lessons. One of the many crosses we carry.
DeAnna

[long journey]

I had 3 urologist tell me that I have end stage IC but would not take out my bladder... I got an MRI and it was found that odds are that my main source of pain is a missing sacral bone and the fact that my spinal cord is slipped down and bulging! I had to fly all the way across the US to find this out with a simple imaging procedure that could have/should have been done earlier? And do I still have IC? I do pee constantly and have great pain... this whole thing is such a great puzzle with so many pieces interacting... each of us a different combination. All of us knowing the frustration, regardless of the "flavor", of living this way, fighting the system, just trying to get better. I send you a great big hug and hopefully the knowledge that there is someone else out there that is familiar with the brambles you are facing on your path. The important thing is to find what ever bit of strength is hiding in whatever corner inside of you and pull it out to make it through another day. That's all one can do, wake up and say "ok let's do this to my best ability today" .... the glass is still half full... hard to see sometimes

Hugs, honest hugs and of course prayers for you.

[Judith56]

I just want to set something straight about frequency and urgency after removal. Not everyone gets that, and for those that do it is not always permanent. What is happening in some people is that the nerves are remembering and in the process of dying. While that happens you may feel the urge to urinate. Of course now it will physically impossible, but there are things you can do to ease the sensations. Again for most people this is not a lasting situation and in fact fairly normal. It even happens to those who have thier bladder removed for other reasons like cancer. I did have it when I first my bladder removed, but it has been many years since I have had that type of feeling. Think of it as part of the recovery process. For the majority of people who have thier bladder removed for IC they are happy they had the surgery. The reason they may not post here anymore is because they are busy living thier life and no longer feel part of the IC community because they no longer suffer with it.

[Kara29]

To go along with Judith's thoughts......Think about how long we had IC. It takes the brain awhile to learn the NEW way to urinate. It can take months and up to even longer for some folks to not feel the urge to pee. The nerve pathways have to change directions, literally. I had IC for 10 years and some of us had it for longer before having our bladders out, so it took some of us a long time to not have that IC urge feeling.

Kara

[missgrl29]

Thanks Yaw,
Yeah i understand it may take awhile for my body to adjust to it
cause i've had this for 9 years, though this past year has been the very
worst year for me!

Missgrl29

[Claredale]

Have any of your doctors talked to you about the interstim implant? I had almost constant urgency and freq about every 15 minutes for quite a while. I did get some meds to help, but my freq/urg was still hard to deal with and live any type of normal life. The interstim made a huge difference in those symptoms. I know it's not just used for people with IC.

[missgrl29]

Tracey,
Yes i had the interstim did not work and also the botox!!!!!

Missgrl

[Claredale]

I wish I could help. Hopefully someone out there can offer some better suggestions. I definitely feel your frustration.

Tracey