Why is Interstitial Cystitis so common now with no cures yet???

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ICN Jill

Santa Rosa, CA

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#81
Dec 6, 2008
 
Hi folks. Great to see so much discussion about IC. I run the largest support group in the world, the IC Network, for IC and just want to post a note of caution about alternatives.

#1 - Please be careful of anyone who says that they can "cure" or "heal" IC. There is so much we don't know yet about IC, such as why it runs in some families, for anyone to suggest that they have the "cure" for IC. There are several websites/practitioners who will take your money for their cure, books, etc... and yet, amazingly, they can't offer any proof or research supporting their claim. You'd think that if they had a cure, they would publish it in medical journals world wide to share this vital knowledge. So, please ask for proof from anyone who says this. Why don't they have research published??

#2 - Please BE VERY CAREFUL of anyone, even a licensed medical practitioner, who sells you unlabeled herbs to take. Full disclosure is essential not only to you but also for your other medical care providers so that they can do allergy screens, drug safety reviews and, most of all, assess or determine if any of the herbs could be interfering or conflicting with any of the medications that you are taking. I mean, honestly, would you really take something that comes to you unlabeled. I sure wouldn't. I refuse to be anyone's guinea pig or, worse, put my safety in the hands of someone I don't know.

#3 - Remember that you should not participate in any research nor taking products that are being researched and studied without first reviewing a human subjects agreement, signing that agreement AND receiving a full disclosure of what you are being given. There are laws against human experimentation. You must be fully informed and that includes being told of the ingredients, potential risks and side effects of any product, herb, drug, etc.

Be safe, be cautious, ask questions... and remember that IC is a syndrome of many types of conditions. Some patients have pelvic floor muscle dysfunction while others have visible bladder damage, such as Hunners ulcers. Some may have nerve dysfunction or perhaps a pudendal nerve entrapment, particularly if their symptoms are positional in nature. Some may have an obscure low grade infection in their bladders while others might have early signs of bladder cancer (especially smokers).

You require a thorough workup by an IC expert, preferably a urologist or urogynecologist, who runs an IC clinic, and has passed their personal board examinations in urology or urogynecology. You should NEVER be diagnosed and treated over the phone without first having a thorough physical exam, history and basic testing (i.e. such as a urine cytology to rule out cancer, etc. etc.) Unfortunately, we have had some patients who were misdiagnosed with IC and later determined to have cancer that had progressed unnecessarily.

BE CAUTIOUS!!!

Jill O.
http://www.ic-network.com
erica

North Chicago, IL

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#82
Feb 24, 2009
 
alice wrote:
i was diagnosed with ic about 4 months ago, after repeatedly seeing a doctor because i had frequent flare-ups. i am currently on cefalexin which has no effect what so ever, im only 14 fgs ive missed so much school, i have no social life because i need to stay around a toilet, even simple tasks such as catching a bus are stressful because i cant use a toilet. if his goes on for much longer i dont know what i will do, the worst part is, all the doctors i see are men, they dont understand they've probably never experienced this pain in their lives. theyjust say, drink more water, empty your bladder properly blah blah blah. i would not wish this on my worst enemy some days i just sit on the toilet for hours on end crying. all you ic sufferers out there, i will be praying for you as well as myself, and hope that one day the medical community will stop ignoring us and come up with a cure :( good luck everyone x x x
i am so sorry you feel this way. please check out the site icaroadtorecovery.com and google matia brizman. her site is www.bomamed.com then click on the icama tab. this should help. my email address is cheema1476@yahoo.com. this helped me, i hope it helps you!
Sarah USA

Hermitage, TN

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#83
Feb 25, 2009
 
I was diagnosed with IC in 2002 & had symptoms since 1992. I had a partial hysterectomy in '92 & had major problems w/cath. in the hospital. My bladder was never the same. I became disabled from the pain/severity of symptoms in 2003. After six yrs. of almost every kind of med/treatment you could imagine I am finally doing significantly better. I tried Sanctura & it actually helped, also, had another cysto. last Aug. & it really helped too. Then, I tried pelvic floor physical therapy & was shocked at how much better I feel. It is great. I still have to take narcotic pain meds.(reduced amount) but am off of everything else. I am swimming & trying to recondition myself. My sincerest hopes & prayers are with all of you. Just don't give up. I pray that they will solve this horrible illness & encourage you to seek whatever treatment you can. God Bless.
Sarah USA

Hermitage, TN

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#84
Feb 25, 2009
 
I had hunners ulcers and diffuse IC by the time I was finally diagnosed. I think that effective pain mgmt., along with the hydrodistensions are what helped me, but everyone is different. The main thing is to keep seeking treatment. If a doctor won't listen to you, find another one. There is an excellent one here in Nashville and a very good nurse pract. in Knoxville, TN too that treat IC agressively.
Sarah USA

Hermitage, TN

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#85
Feb 25, 2009
 
my email address is sara.monson@comcast.net if anyone wants to talk.
Ivy Starr

United States

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#86
Feb 28, 2009
 
Yes!!! I have suffered with Interstitial Cystitis for 18 years and I was actually headed toward a interstim placement (a wire in my back to help control the pain). I have been treated like I was crazy, it was all in my head, etc. I was incredibly desperate and had tried everything just 3 1/2 months ago. My normal cycle was 2-4 episodes a month. My mom read something in a natural book (I have tried all the natural remedies and I was very sceptical). I bought a bottle of d-mannose and took 1 teaspoon every hour for about 8 hours the first day. From there my pain was absolutely gone! I couldnt believe it, as if I didn't owe my mom enough already, giving me life and all. I still begin to get that feeling like it is going to hurt to urinate, etc. I simply take a dose before bed/sex and 2-3 times during the day. I have gone off all of my meds, including elmiron, santura, cystex. Please try it, I want to tell everyone about this. We just bought 8 bottles b/c I don't want to be without it. Look on luckyvitamin.com for a $16 rate rather than $33+ dollars at a healthfood store. Happy peeing!!!
Ivy Starr
Kcee wrote:
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
chris

Brooklyn, NY

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#87
Apr 16, 2009
 
I got ic immediately after a car accident and it is awful Oxytrol patches are the only thing that works for me
d-laforte

United States

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#88
May 30, 2009
 
got rid of ic within 3 months... Dr. Freddie Bisci... scientist/nutritionist for over 40 years... ic gone within 3 months seriously... this man is honest, but serious about health and can talk extreme... but, he gets the job done... my boyfriend took me to see him... the best and smartest thing i ever did in my life... i cant tell you how to get rid of your ic... im not a professional... but, i can only tell you who i went to see... my boyfriend paid for everything, but i can tell you he is not expensive and obviously being i got better in 3 months he does not string along for money... i realize ic is a chronic infection... but once its gone its gone... look up MMS... and, Dr. Fred Bisci... everyone in my borough raves about him... i had ic for 4 years... i would have gotten better faster but my bf was away... so when he got back he took charge or i would still have it... i was not proactive in searching for new doctors... no one has ever had a bad word to say about Fred.... goodluck hope this helps someone...
MEGAN

Springfield, OH

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#89
Jun 10, 2009
 
Unfortunatley I dont think there is a cure nor do I feel that elmron helps..I have had this for about 6 yrs now..off and on...some times worse than others. I have heard recently that hormones play a huge effect on this... Im considering going to the "mew" craz of bio chemical compounds. It certainly cant hurt. Good Luck to all IC suffers.
Sally

Glasgow, UK

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#90
Jun 28, 2009
 
Rebecca wrote:
<quoted text>
I have had IC for 3+ years now, into my 3rd month of pregnancy, and can't take anything. The pain is unbearable, I don't know what to do either! A urologist I recently saw, said to try Prelief, it's an over the counter natural pill that you can take while pregnant, it's supposed to neutralize the acid content in your urine to help the burning sensation. It didn't work for me, but it supposedly helps a lot of people, that's my advice to you...to try that. Good luck.
i have just ordered marshmallow root tea. not tried it yet but its ment to be very soothing. mayb u can have when pregnant?
Anne

United States

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#91
Jul 26, 2009
 
Gina wrote:
I am amazed to hear others who have and are experiencing the same uncomfortable and painful occurances I have with IC. I have had IC for 10 years since the birth of my son, and ever since it never went away. There are good days and bad days, but when there are bad days it is sometimes hard to figure out what is going on with my bladder, and the pain starts to persist in my lower stomache and the burning feeling inside. I hate to walk at times. I have a flare now and it won't go away, and it is so embarrassing to tell anyone what your experiencing. I had bladder treatments and they helped a bit, but the thought of doing that all over again is scary to me. I went to doctors in other states, and it saddens me that there is no cure. I try to maintain it, but when my flare up came back, it does not want to go away. Need some relief and can't seem to find it.
I have found that a B&O rectal suppository works great for a flare it helps with both the burn and frequency and bladder spasms.I use this as well as valium for a flare. They are some times hard to get but a compounding pharmacy can help
Anne

United States

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#92
Jul 26, 2009
 
I use both valium and B&O rectal suppository for flares.It relieves the burning pain and bladder spasms.You may have to use a compounding pharmacy for the B&O as it is not always available from the drug companies.
Janet

Boise, ID

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#93
Aug 13, 2009
 
I wanted to update my information from 2007 I found a better company!
I, too, have IC. I have not taken my Elmiron yet after reading of its many side effects. However, I found some wonderful information on Aloe Vera (highly refined in capsule form) from a company called Healthy Life Harvest out of Idaho ( www.icaloe.com ). Doctors at the Urology Wellness Center in Rockville, Maryland did a double blind study of this product after hearing of the success of if from their patients. I was impressed with what I read. I am trying this product first before I venture down the Elmiron road (and after trying everything else out there known to the medical world). Read the information on the website. I also called the toll free number and spoke to someone there. I am willing to try the product; it's natural and nothing ventured, nothing gained.
kara

United States

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#94
Nov 22, 2009
 
dont know if anyone still gets on this but i def need a cure. Im on vaca with my boyfriend and he is stressing out that there is something wrong with me and it just my ic...if anyonecould help that would be great
Jane

Syracuse, NY

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#95
Dec 17, 2009
 
Janet wrote:
I, too, have IC. I have not taken my Elmiron yet after reading of its many side effects. However, I found some wonderful information on Aloe Vera (highly refined in capsule form) from a company called Desert Harvest out of Colorado ( www.desertharvest.com ). Doctors at the Urology Wellness Center in Rockville, Maryland did a double blind study of this product after hearing of the success of if from their patients. I was impressed with what I read. I am trying this product first before I venture down the Elmiron road (and after trying everything else out there known to the medical world). Read the information on the website. I also called the toll free number and spoke to someone there. I am willing to try the product; it's natural and nothing ventured, nothing gained.
Janet
I was at the end of my flare but just couldn't get over it.(2 months). I ordered the Aloe Vera from Desert Harvest. First two doses I felt great. By the third dose I started flaring again. Called Desert Harvest and got a totally unqualified man on the phone. Told me it happens and some people start with 1/2 capsule.( what - it's a capsule). No warning ghat this might happens. No instructions to start slowly now what do I do. Seems like I'm inflammed and also had diarrhea. I'm sending it back.
Zsigmond Toth

Hungary

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#96
Jan 27, 2010
 
I am a Hungarian fitotherapist, the head of Füvészmester Gyémántja Egyesület (Diamonds of the Herbmasters Association). Our main activity is curing people suffering from diabetes with herbs, in most cases with tea cure. In the last ten years, more than 30 thousand patients' cure had been coordinated by us. We try to combine modern and traditional knowledge as efficiently, as possible.

Despite people do not know a lot about Hungary, especially not in America, it is one of the few places, that has a great effect on the progress of fitotherapy. In 1904, the first and for a long time, the biggest institute had been established here, doing research on herbs and their effects. Until the late 20th century, Hungary was far over other countries in herb exportation per capita. Because of its geographical features, Hungary is a country with supreme quality herbs.

People were always generally opened for fitotheraphy in Hungary. That is why great happenings take place from time to time in this subject here. For example, lately a priest in a small village (Halimba) treated houndreds of thousands of poeople with herbs succesfully.

Throghout our praxis, we became quite popular, the country's main TV chanels and newspapers follow our work. They keep everyone posted about the people with diabetes who could abandon their inzulin and medication, or were saved from dismemberment, going blind, and dialisys by our tea, even though doctors said they are hopeless.

Of course, from time to time people come to us with different problems, too. In the recent past unfortunately IC turned up in Hungary, therefore we had patients with this illness. We used the same method: we combined modern and traditional theraphies in order to reach maximum efficiency. At latest in three months most of our patients' symptoms were gone: their severe pain, micturation, sleeplessness, blood in their urine - or their state became significantly better.

We were very surprized, how difficult the patients' struggles were, but when we saw the statistics of IC of U.S.A., and realized, that there are more than two million people suffering from this disease, we were terrified. Therefore, our association had made a dicision.

For the women, who tried numerous available theraphies and medication and even so, they are in a very awful state of health, we are willing to give our tea for free.

If you are intrested, do the following:
- Send your diagnosis via e-mail (or post) to our address
- Write a short letter containing concrete informations about IC problems in your life.
Please send enogh information for us to be able to see your state of health exactly!

Note: the infusion of herbs can only help, if you drink it 3 times every day!

We hope we can help as many people suffering from this terrible desease as possible.

Email: diaherba@diaherba.com

Address:Fuveszmester Gyemantjai Egyesulet
Hungary
1075, Budapest, Madách Imre Street 12.

Tel.: 003614131564


Zsigmond Toth
Herb specialist
Trudy

Landisburg, PA

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#97
Mar 9, 2010
 
I have IC for a number of years but only recently been diagnosed. I would get spells the same as a UTI but no infection. I have since change my diet and drink plenty of water. One thing that has helped is marshmallow root tea. A good place to get it is Mountain Rose herbal teas. It is not harmful since I was concerned about that. You might want to read the book by Catherine Simone "The healing Path" Here is to feeling better.
Joy

Harrisburg, PA

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#99
Mar 29, 2010
 
Hi, I'm a 25year old female and I just got a hydrsodestention, cystoscopy, and a Biopsy of my bladder done. I've been to 2 different Emergency rooms for severe abdominal pain, I went to my family doctor, and now I'm seeing a urologist. I'm waiting for my test resaults back. This past weekend I went to bed at 3:30am and woke up at 5:00am I was in so much pain that I cried for a long time, my abdomen was sore and my back lower back was throbbing in pain. Why does this happen, Does anyone else have this much pain? I cry all of the time and it just feels like knives everyday. Do you think this could be IC? I urinate so much I feel like an old lady, I urinate and then about 2 minutes later feel like I've got to go again. Why does that happen? I was diagnosed with a UTI when I went to the hospitol both times but they didn't find anything else wrong. That's why I'm at where I'm at right now. Is anyone else on Vicodine for thier pain as well?
Cheryl Gross

Grants Pass, OR

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#101
May 23, 2010
 
Joy wrote:
Hi, I'm a 25year old female and I just got a hydrsodestention, cystoscopy, and a Biopsy of my bladder done. I've been to 2 different Emergency rooms for severe abdominal pain, I went to my family doctor, and now I'm seeing a urologist. I'm waiting for my test resaults back. This past weekend I went to bed at 3:30am and woke up at 5:00am I was in so much pain that I cried for a long time, my abdomen was sore and my back lower back was throbbing in pain. Why does this happen, Does anyone else have this much pain? I cry all of the time and it just feels like knives everyday. Do you think this could be IC? I urinate so much I feel like an old lady, I urinate and then about 2 minutes later feel like I've got to go again. Why does that happen? I was diagnosed with a UTI when I went to the hospitol both times but they didn't find anything else wrong. That's why I'm at where I'm at right now. Is anyone else on Vicodine for thier pain as well?
Yes,I use Vicodine to control my pain.I take 2 or 3 5mg piils a day to help with the burning sensation in my bladder.Also dulls the need to urinate every 15 min.I urinate about every one or two hours.I'm up about every 2 hours at night.I take Elmiron,amitriptyline and bioidentical hormones to control my hot flashes,I'm 55 years old and developed IC 2 years ago.Up until that point I had been perfectly healthy.Never any bladder concerns or infections.It has changed my life.I was in so much pain the first 2 months, I lost 30 pounds,was hospitilized 3 times for pain control and rest.Told the doctor I thought I was going to die.Also take Ativan at night to help me sleep.Never had anxiety until I developed this disease.Very scarey.Diet does seem to hold symptoms down,but I am never without some type of pain daily.I function very well though,I work 12 hour shifts at the hospital.I have been an obstetrical nurse for 30 years.So hang in there,keep taking your Vicoden so you can function.I get down in the dumps at times and have a good cry.Seems to make me feel better.I have a very good general practioner who listens to me and is open to trying different meds.Please hang in there,don't give up.Cheryl
Cheryl Gross

Grants Pass, OR

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#102
May 23, 2010
 
Maria wrote:
Yes I cry all the time because my life has been ruined for 10 whole years. I cry cause I'm 27 can rarely leave my apartment, can't work, can't have sex with my husband, and worst of all, I can't live! I feel completely hopeless and if the world exploded tomorrow I would be happy because I can't live like this anymore!!!!!!
<quoted text>
I know exactly how you feel,but please don't give up.I would like to know what therapy and meds you are using.The DMSO instillations did not work for me.Made me more painful.I use Elmiron 3 times daily,amitriptyline 25 to 50 mg at night.Ativan for anxiety and sleep.Take one at night and of course my pain medicine.Vicodin 5 mg tablets 2 to 3 a day,which is a pretty low dose.I am a nurse and am still able to work 12 hours shifts.It's not fun and I do get frustrated and sit down and cry sometimes.I just keep hoping I will find something that makes me better.Never give up,be proactive.Take your ideas to a good doctor.General practioner or urologist.If the doctor is not sympathetic and kind,dump him and find another one.There are doctors out there that are kind.Please write back and let me know how you are doing.

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