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Thread: Find some hope
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05-27-2008, 11:20 AM #1ICN Member
- Join Date
- Feb 2007
- Location
- Wisconsin
- Posts
- 1,707
Find some hope
Hi all,
Well I went to see my primary dr which I am thankful I have because he is the ONLY dr that hasn't given up yet. It hasn't been a year though with him yet but just about. Any way he is the one that doesn't know ANYTHING about IC but I am working on him!
He knows how bad I want to be able to work again. I want so much more of my life than what I am living the last years. I can't even say its living just existing in pain and being pushed doctor to doctor.
So he is always willing to try new things BUT there just seems to be nothing left to try.
I told him I would do anything in the world to be able to tell him how great things are going and how wonderful I feel.
It just is so hard being in so much pain 24/7, peeing all the time, being sick when I eat ANYTHING, surgery failures. I could go on and on but I won't because I know so many of you suffer as well.
I just want to be able to go out and do things. I want to be able to live again.
Will I ever get any better? After years of things only getting worse even with all the treatments no doctors can tell me much when I ask!
Well thanks for listening.Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough
)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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05-27-2008, 11:45 AM #2ICN Member
- Join Date
- Apr 2007
- Location
- Pennellville, New York
- Posts
- 255
Oh Mary, I was hoping you would be feeling better by now. I wish there was something I could say or do to make your pain go away. Just know that so many of us are out here sharing the same frustrations. I know you've had more than your share though. I always try to look on the bright side but there are some dark days when that's really hard to do. I'm glad to hear you have a primary doctor who is trying to help. Having a good caring doctor is so important and hard to find. Please know I'm thinking of you and saying a prayer that things will get better soon
. Sue
3/06 IC symptoms began immediately after endometrial ablation procedure called NovaSure
5/07 IC diagnosed by cystoscopy with hydrodistention finally after 14 months of doctor's appointments and pain
Medications: Elmiron since 8/07, Atarax, Synthroid & Cytomel for low thyroid, Lisinopril for high blood pressure, Xanax for anxiety as needed, Vitamin D 50,000 units once a week
Supplements: MSM/glucosamine, Quercetin, Desert Harvest Aloe Vera, Flora Biotic 16, Magnesium, Citracal, B-complex
What's worked: IC diet, physical therapy for pelvic floor dysfunction, TENS, rescue instillations and acupuncture
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05-27-2008, 12:06 PM #3ICN Staff
- Join Date
- Jan 2002
- Location
- Memphis, TN
- Posts
- 10,854
Oh how I wish I had answers for you. I really hope that you begin to feel better very soon. (((Hugs)))
Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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05-27-2008, 01:22 PM #4ICN Member
- Join Date
- Jan 2003
- Location
- South Carolina USA
- Posts
- 6,851
Don't never give up hope hon. One day you will find the right combo of meds that will help you. You will find remission. Until that day comes. You will be in my thoughts and prayers.
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
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05-27-2008, 01:50 PM #5Support Volunteer
- Join Date
- Nov 2006
- Location
- Louisiana
- Posts
- 8,892
I agree with the others keep your chin up hun! There is something out there that has to give you some kind of relief!! ((((hugs))))
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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05-27-2008, 02:18 PM #6ICN Member
- Join Date
- Feb 2007
- Location
- Wisconsin
- Posts
- 1,707
Thanks everyone! I try, I really try to stay positive and keep searching and trying something new.
All I can say is thank you for understanding and listening.Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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05-27-2008, 02:58 PM #7ICN Member
- Join Date
- Oct 2007
- Location
- Oklahoma City
- Posts
- 439
Hi mlzippy,
Don't ever give up hope. One day there will be a cure for us all, but until then you just have to keep going. I know as hard as it may sound, you just have to tell yourself there is hope
If you ever need to talk i'm here k?
Take care and I hope you start feeling better soon
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05-28-2008, 04:39 AM #8ICN Member
- Join Date
- May 2001
- Location
- Southwest Michigan
- Posts
- 1,834
Mary
Originally Posted by mlzippy7
I know your pain and I know what you mean when you say your md knows how bad you want to work someday. That is me also. I can't seem to get over the not working which is my main source of depression. I have been out of work a year now. My depression I would say no different then a year ago. Do I take antidepressants? I have tried everyone I swear they make. I can't urinate when I take these type of pills. Vicky
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05-28-2008, 04:42 AM #9ICN Member
- Join Date
- Apr 2008
- Location
- Boothwyn , PA
- Posts
- 713
Im sorry your going through all this Mary , I wish I had the answer for you ! All I can say is keep trying to stay positive and Im here for you , if you need me
Lauren
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05-28-2008, 05:11 AM #10ICN Member
- Join Date
- Sep 2006
- Posts
- 4,213
I am praying for you too Mary.
Hugs, Tracey
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05-28-2008, 05:46 AM #11ICN Member
- Join Date
- Feb 2007
- Location
- Wisconsin
- Posts
- 1,707
You guys are the best
Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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05-30-2008, 02:23 AM #12ICN Member
- Join Date
- Nov 2007
- Location
- Pennsylvania
- Posts
- 2,023
I am so sorry your going through this. I am sending
your way.
Lisa
Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca
Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).
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05-30-2008, 08:09 AM #13Support Volunteers
- Join Date
- Mar 2003
- Location
- Northern WI
- Posts
- 3,631
((((Mary)))) anytime you need to vent or anything, you just drop me a line. I really wish you well and you are always in my prayers.
Hugs,
JessMommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!
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