Will It Ever End

[cbrash]

I was diagnosed with IC after figuring out what I had and finding a doctor to treat me. I don't even have to mention how many Urologists I saw who told me there was nothing wrong. I have a double right kidney, left kidney and three urethura (SP) . I have suffered from UTI's, Bladder infections, kidney stones , chronic pylenephritis(SP) all my life. In the last two years the symptoms leading to the diagnosis of IC became apparent. I am sitting at my computer feeling very sorry for myself and alone because I can't endure this pain any longer. Only IC patients can understand. I take Elmiron, Elavil (having allergic side affects) , tried Cymbalta-side effect is urinary frequency which led to this full blown attack, uristat to help the pain (it doesn't), advil, and at night hydroxyzine.I have to urinate 24/7 and am in so much pain I have been doing stupid things like letting my car run for three hours while I did errands and grocery shopping at the mall.I am losing all of my friends and I think my husband has had it with me. If I could be pain free for one day I would be eternally grateful. I sit here and cry and can't believe this is me. I have always been active, raised two children,English teacher, A ranked tennis player. Now I am fat, in my nightgown, and desperate. I live in Florida but am willing to travel to any doctor that is recommended. I feel like I am at the end of my rope. Thankyou for this website. Without it I don't know what I would have done. cbrash

[Paininthe*.*]

I am so sorry for your pain. Please don't feel alone...I know how desperate you get when you're in constant pain. How long have you been on Elmiron and the other meds? Have you tried a pain clinic? Many people on this site have found pain clinics to be helpful in getting their symptoms under control.

[**Angie**]

I think we all do. Isn't this sight wonderful. I spent 2 years just reading the posts before I started talking. It made me feel so much better just to come here and see that others were going through exactly what I was feeling. I've been up most the night in pain--I'm in bed now on my heating pad with my laptop, in my pj's too. I've also gained a ton of weight--depressing isn't it!! So see we're in the same boat :) at least we're not alone. I'm also waiting for the pain clinic to call me back with an appt.--that is if they decide to take me as a patient. I'm hoping this will be a step in getting some life back. Will your Dr not prescribe pain meds?? I don't know what I'd do without them. I just keep reminding myself not to dwell on it or it just makes it worse. Hang in there, keep your mind occupied and things will be better.
angie

[cbrash]

Thank you for your kind and understanding words. I have been on the Elmiron and other meds for one year. No pain medication-nor was it offered.I haven't tried a pain clinic. My friends and family don't understand this and I know they would not want to hear that I am on a pain medication.The DSMO doesn't work. I keep thinking that if we could just grasp the cause of this we could find the solution. After reading the stories on this web site I feel like my IC is not nearly as difficult as so many others who have been suffering for years. I feel blessed to find other people with IC that can relate but at the same time I feel so badly that they are suffering so much. Thank you,Cbrash

[cbrash]

I waited eight months before I wrote my story yesterday.The response has been amazing and uplifting. I'm just so sorry that we all have to suffer so much for a disease that no one really seems to grasp. I have found the doctors here do not want to get involved which makes me feel like a freak.I have not been offered pain meds. It seems to be a big TABOO!Nights alone in pain are so long. I will think of you but hope you are able to get some pain meds.I am so happy(weird huh) to find people that I connect with about this.That in itself is healing. thank you...Carole

[honeyb]

Dear cbrash,

I'm 31 years of age and was diagnosed with IC in early 2005. It's taken me a year to find a urologist who actually knows how to treat IC and it's been a long and exhausting process to say the least. The first uro only gave me tons of meds and told me to come back in 6 months. Well... I was back only a week or two later in pain and all he would tell me was "This is how IC works... not much you can do other than take the meds". I stayed with this jerk because of my HMO and ealry this year I switched to a PPO which allows more flexibility in seeing specialist which I something I needed. I actually went off meds from late last year until just last week because I literally gave up. I've always been quite healthy and this was all new to me. This process has been very hard emotionally in addition to the physical aspect of it. My boyfriend has also had a very hard time with it because unless you're able to see something/or feel something, listening to someone complain about pain daily can be very hard. This is why this site is so awesome! Nobody could possibly understand this condition unless they've personally goen through it themselves. I am now seeing a doctor which I found through this site. He's been treating patients w/IC for over 20 years! Have you tried finding a doctor on this website?

Here are the doctors I found under the state of Florida -

GULF BREEZENew! (03/06) Karen Kennedy, MD - Karen E. Kennedy, MD, PA, 1118 Gulf Breeze Parkway, Suite 201, Gulf Breeze, FL 32561 - Phone: (850) 916-7766, Fax: (850) 916-5144

MIAMI
Angelo Gousse, MD - University of Miami / Dept of Urology - 1150 NW 14th Street, Miami, FL 33136; Phone: (305) 243-2973

NEW PORT RICHEY
Ramon Perez, MD, Urology Health Center, 5652 Meadow Lane, New Port Richey, FL 34652 Phone: 727-842-9561 Website: urologyhealthcenter.com
Interests: Interstitial Cystitis, Female Sexual Dysfunction, Incontinence, Andropause & Prostatitis

ORLANDO
Rakesh Patel, MD, Winter Park Urology Associates, 1812 N. Mills Ave., Orlando, FL 32803, Phone: (407) 897-3499

PEMBROKE PINES
Harvey Samowitz, MD, UroMedix Clinic for Pelvic and Voiding Disorders, 603 N. Flamingo Road, Suite 251, Pembroke Pines, FL 33028, Phone: (954) 430-3999, Fax: (954) 430-8999
Interests: Most recently, I participated in a study of the urine of IC patients to identify a common constituent. I have the largest series of Interstim patients in South Florida. We have a successful multidisciplinary clinic that utilizes physical therapy and pelvic rehabilitation: a registered dietician specializing in pelvic disorders, a naturopathic physician who uses traditional Chinese herbal medicine and acupuncture, and a stress reduction and relaxation techniques expert. I completed my fellowship in Female Urology, Incontinence, and Voiding Disorders in 1992. I am in a large Urology group practice and my subspecialty is in IC, Voiding Disorders and Chronic Pelvic Pain.

==========================================================
He's up to date with new treatments and I left there crying... not in pain, but in joy! What a different experience it was to go to a doctors office and have they entire staff understand your IC! I had my first bladder instilation last week and go to anotehr one tomorrow. I am also taking Enablex for bladder control and spasms and also a mild antidepresannt for night time help. I'm currently in a flare, but I have hope again! I'm only 31 and beleive me... the first thing I do when I get home is put on my jammies! Comfort is the key when you're not feeling well. My stomach is so bloated lately my boyfriend thought I was pregnant! I wish! Anyhow... wishing you all the best during this tough time. I get really down too and coming here really helps... even just reading postings helps me.

God bless!

[cbrash]

your posting blew me away because I could have written it word for word but substituted husband for boyfriend.you must know how much your experiences and symptoms mirror mine. thank you for the doc ref's. every posting I receive brings tears...poor us...but lucky us...we have a supportive community ...thank you cbrash

[honeyb]

I'm so happy you are able to get the support you need here... have a great day and good luck with the doctors! I go today for another bladder instillation and I need it! My bladder's in an "uproar" as I say... which is a flare. Looking forward to my jammies and I just got to work and have only been out of the jammies for a few hours... hee hee!

[Claredale]

I was a member a few years ago, but couldn't remember my info. I am like most of you and get on this website most often at night when I can't sleep. I guess I am mostly looking for validation when I am having a flare and feel that IC has control of everything in my life. I decided to register again and let ya'll know how much I appreciate this site and the people that share their stories, especially yesterday. I was in a full flare. I have had IC since I was about 25, and actually diagnosed in the late 90s. I have had the interstim. Doesn't work too well most of the time it is turned off since the pulses get on my nerves. The doctor that implanted it and adjusted it for me moved to Knoxville. She was wonderful and definitely gave me the support I needed. I have started going to a new group and just can't seem to feel understood like my previous doctor did. I could just call my previous doctor and she would tell me to come on it right then. She even gave me her cell phone number! Now I hear, the doctor can't see you until the end of the week...I ask if he can call in meds...Well I will have to get a message to him and see. I was just spoiled before.

I was in so much pain yesterday. My boss is very understanding and told me to stay home and get in touch with my doctor. I had gone to see my doctor on Monday to have my implant adjusted, but the actual doctor that does the adjustments came in every couple of weeks. She said that they could try to make the adjustment, but she hadn't actually done one on her own. Yes, I was going to jump at that chance! She suggested trying a Heparin instillation. She said that it would heal my bladder lining. I asked her if she had very many patients with IC. She said that she did. Her specialty is pelvic floor disorders. I explained to her that I had been having a lot of urgency and frequency problems and that detrol and ditropan didn't help me. She said that she would have my other doctor (downstairs) which handles pelvic pain management would have to call in meds for that. Well, he wasn't available for me to actually speak to, so I assumed he would call in what I needed for pain and the spasms. All he called in was Lunesta. That night I like many of you, I spent most of my time going to the bathroom. I normally go about 10 times during the night, but due to my spasms, I went at least 60 times. There was a point that I got a stool to put my pillow on and just stayed on the toilet. I was ready to take out my own bladder by morning. I called my doctor's office and found out that he couldn't possibly see me until Thursday. I already had an appt for Friday. The nurse that I talked to about getting my doctor to call in pain meds talked to me as if I was a drug seeker. The doctor had written a prescription 8 days earlier for 30 pills (Loratab) and couldn't believe that I had already taken them. She asked if I had any luck with over the counter meds. "Why didn't I think of that" I guess there was really no need for my implant back in 2000, I should have just taken ibiprofin. I appreciate ya'll reading my venting moment.

Let's just keep praying for a cure and especially that we have doctors that understand and have compassion for our disease.

[cbrash]

Tracey 83 your concerns are validated. There are so many of us here trying to cope with IC and when you add a Flare on top of that life gets really tough. I was crying on the phone yesterday when I made an appoitment with a new doctor whom I am driving to Miami (3hours) to see. His receptionist was so NICE! That's what made me cry-she was so nice.I received an email from a member in Tenn who has a wonderful doctor. I no longer have the email and can't access the member list to find her name. Hopefully she'll see this thread and email you . I am sorry you are suffering and hope you find relief soon. cbrash

[jeanmary]

I am so sorry for your pain and your frustrations of the medical society. Even when I have a new idea for pain meds or possible treatments I hesitate to make the call, knowing the hassle that is to come trying to convince them to take you seriously. My pain is different in that it is primarily in the urethra with burning, spasms and just plain aching. I have been told that it is referred pain from the bladder (could be I guess) but the pain is so specific it is hard to imagine it does not originate from there. I believe the hardest part of seeking new meds or treatments is being so afraid they will not work and set off a whole new feeling of hopelessness and depression. Living with constant pain is one thing, living with no hope of getting rid of it is excruciating. We all may not want to admit it but the thought of life ending prematurely is almost welcoming. I do not want to act on it in any way, it just crosses my mind. This disease cuts into and affects everypart of our lives. Some of us don't even hope for the return to our former activities, just the ablility to sleep at night, have a mental "IC free Day", or just sit and read a book and be able to concentrate on it rather than ignoring your pain.
It is this outlet of writing my thoughts and sharing them that keeps me hopeful. All of you are the only ones that understand the depth of our saddness, pain and fears. You are also the only ones who understand the absolute necessity of hope, encouragement and courage it takes to endure everyday. Thanks for being here.
Jean

[cbrash]

Do you ever have one of those days where you feel like you've tuned in to a radio station that usually has static but on that perfect day the signal is loud and clear?I had such a day yesterday. I felt like my "old self" the whole day. I was tuned in with no static.WOW I thought-this is looking good...maybe I really don't need to drive to Miami to see the new doctor. Well, as you all know , just like in the movie Gone With The Wind-tomorrow is another day and that unfortunately usually means that the static is back. But I'm thinking about yesterday and thinking maybe next time I can tune in for two consecutive days. And so I will drive to Miami tomorrow to the new doc and keep the faith. Like in the Wizard of Oz-I Think I Can I Think I Can-I Think I Can!
I KNOW I CAN
CBRASH

[Claredale]

Yes I do. I was in a terrible flare on Tuesday. You know one of those days when you just want to take out your own bladder??? Yesterday, I had a glimmer of a good day. Even on good days though, I always start flaring at night.

I am new to this site. Tell me about this doctor in Miami....

[cbrash]

always comes back at night also
don't have anything to tell about the doctor in Miami because I haven't met him yet. But I am looking forward to meeting him...he did his Fellowship in Female Urology and specializes in treating IC. My thinking is he must be wonderful because I don't know many men who can put up with women crying every day...and with IC you cry if you're in terrible pain and you cry in gratitude if you aren't.
cbrash

[Claredale]

How did you find out about this doctor?

[cbrash]

I need to correct the source of a quote I used -It wasn't The Wizard of Oz that had the lines I Think I Could I Think I Could-I Know I Can-The book was The Little Train That Would! :bonk:
A wonderful member of this forum researched the doctor list available in FL on this site and emailed the list to me.
Now I know I need to go because I have to go -Get It LOL:toilet:
cbrash

[ads]

Dr. Samowitz is a hero! He is a wonderful doctor. He is not only intelligent, but also has a good bedside manner. A+++

ads

Dear cbrash,

PEMBROKE PINES[/B]
Harvey Samowitz, MD, UroMedix Clinic for Pelvic and Voiding Disorders, 603 N. Flamingo Road, Suite 251, Pembroke Pines, FL 33028, Phone: (954) 430-3999, Fax: (954) 430-8999
Interests: Most recently, I participated in a study of the urine of IC patients to identify a common constituent. I have the largest series of Interstim patients in South Florida. We have a successful multidisciplinary clinic that utilizes physical therapy and pelvic rehabilitation: a registered dietician specializing in pelvic disorders, a naturopathic physician who uses traditional Chinese herbal medicine and acupuncture, and a stress reduction and relaxation techniques expert. I completed my fellowship in Female Urology, Incontinence, and Voiding Disorders in 1992. I am in a large Urology group practice and my subspecialty is in IC, Voiding Disorders and Chronic Pelvic Pain.

==========================================================
He's up to date with new treatments and I left there crying... not in pain, but in joy! What a different experience it was to go to a doctors office and have they entire staff understand your IC! I had my first bladder instilation last week and go to anotehr one tomorrow. I am also taking Enablex for bladder control and spasms and also a mild antidepresannt for night time help. I'm currently in a flare, but I have hope again! I'm only 31 and beleive me... the first thing I do when I get home is put on my jammies! Comfort is the key when you're not feeling well. My stomach is so bloated lately my boyfriend thought I was pregnant! I wish! Anyhow... wishing you all the best during this tough time. I get really down too and coming here really helps... even just reading postings helps me.

God bless!

[cbrash]

Thank you so much for telling me about Dr Samowitz. I can hardly wait to get to his office . Big Smiles!!!
cbrash