crkshnks79
12-07-2010, 09:55 AM
I wrote in to the DR Oz show because on another post someone suggested to get it out there and I thought that was a brilliant idea ! So I went to the " Share my story " section of the website and heres what I wrote , let me know what you guys think
Dear Dr. Oz,
My name is Lauren and I am a 31 yr old female with a debilitating condition called Interstitial Cystitis . Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. The condition is usually diagnosed by ruling out other conditions (such as sexually transmitted disease, bladder cancer, and bladder infections).IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.Women are 10 times more likely to have IC than men.
Symptoms
* Pain during intercourse
* Pelvic pain mild to severe
* Urinary discomfort mild to severe
* Urinary frequency (up to 60 times a day in severe cases)
* Urinary urgency
There is no cure for IC, and there are no standard or consistently effective treatments. Results vary from person to person. As long as the cause is unknown, treatment is based on trial and error until you find relief.
Other medicines may include:
* Elmiron is the only FDA approved medication for IC , although it does work for all patients
* Opioid painkillers for severe pain
* Tricyclic antidepressants such as Elavil (amitriptyline) to relieve pain and urinary frequency
* Vistaril (hydroxyzine pamoate), an antihistamine that causes sedation, helps reduce urinary frequency
Other therapies include:
* Bladder hydrodistention (filling bladder with fluid)
* Bladder training (using relaxation techniques to train the bladder to go only at specific times)
* Instilled medications - medicines are placed directly into the bladder. Medicines that are given this way include dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine.
* Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms)
* Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy)
I am writing to you because many doctors do not seem to know or have a true understanding of this condition , it can can absolutely be DEBILITATING. I know because in September 2010 I won my permanent disability w Social Security and I am young . This condition and many other secondary issues that go along w IC has ruined my quality of life . At this point my doctors do not know what else to do for me except to remove my bladder entirely but they say that will do nothing for my intense constant pain , only my frequency ( I urinate upto 80 times on a "bad day" and on a " good day" up to 50 or 60 times ). It took me over 4 yrs and over 27 doctors to figure out why I had chronic pelvic pain . These doctors ranged from Gynocologists , General surgeons (they removed my appendix just because I was in pain even though my appendix was fine ), Primary Care Physicians , GI specialists , Urologists , Endocrinologists , Pain management specialists who still refuse to treat me because " Chronic Pelvic pain is not a real issue". NONE of them knew what was wrong w me , alot of them were downright hurtful and have said to me " Stop being such a silly pathetic girl , nothing is wrong with you , stop wasting my time " to " Its not real , its all in your head " or " Its obvious that you are drug seeking " and " It says here that you have been depressed , so continue taking your Anti-Depressant meds and it will all go away " and many more . This is not uncommon w my condition , I belong to an amazing web support group " ICnetwork.com" and 90% of these women and men and parents of young children w IC have many horror stories of indifference , neglect , uncompassionate and downright baffled doctors . We are tired of not being heard and thought if maybe you worked IC into an episode that maybe doctors and people alike would begin to understand the magnitude of this disease and how it can destroy so many lives . Thank you for taking the time to read all of this , I hope you can help us be heard .
Sincerely ,
Lauren Myers
Dear Dr. Oz,
My name is Lauren and I am a 31 yr old female with a debilitating condition called Interstitial Cystitis . Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. The condition is usually diagnosed by ruling out other conditions (such as sexually transmitted disease, bladder cancer, and bladder infections).IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.Women are 10 times more likely to have IC than men.
Symptoms
* Pain during intercourse
* Pelvic pain mild to severe
* Urinary discomfort mild to severe
* Urinary frequency (up to 60 times a day in severe cases)
* Urinary urgency
There is no cure for IC, and there are no standard or consistently effective treatments. Results vary from person to person. As long as the cause is unknown, treatment is based on trial and error until you find relief.
Other medicines may include:
* Elmiron is the only FDA approved medication for IC , although it does work for all patients
* Opioid painkillers for severe pain
* Tricyclic antidepressants such as Elavil (amitriptyline) to relieve pain and urinary frequency
* Vistaril (hydroxyzine pamoate), an antihistamine that causes sedation, helps reduce urinary frequency
Other therapies include:
* Bladder hydrodistention (filling bladder with fluid)
* Bladder training (using relaxation techniques to train the bladder to go only at specific times)
* Instilled medications - medicines are placed directly into the bladder. Medicines that are given this way include dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine.
* Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms)
* Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy)
I am writing to you because many doctors do not seem to know or have a true understanding of this condition , it can can absolutely be DEBILITATING. I know because in September 2010 I won my permanent disability w Social Security and I am young . This condition and many other secondary issues that go along w IC has ruined my quality of life . At this point my doctors do not know what else to do for me except to remove my bladder entirely but they say that will do nothing for my intense constant pain , only my frequency ( I urinate upto 80 times on a "bad day" and on a " good day" up to 50 or 60 times ). It took me over 4 yrs and over 27 doctors to figure out why I had chronic pelvic pain . These doctors ranged from Gynocologists , General surgeons (they removed my appendix just because I was in pain even though my appendix was fine ), Primary Care Physicians , GI specialists , Urologists , Endocrinologists , Pain management specialists who still refuse to treat me because " Chronic Pelvic pain is not a real issue". NONE of them knew what was wrong w me , alot of them were downright hurtful and have said to me " Stop being such a silly pathetic girl , nothing is wrong with you , stop wasting my time " to " Its not real , its all in your head " or " Its obvious that you are drug seeking " and " It says here that you have been depressed , so continue taking your Anti-Depressant meds and it will all go away " and many more . This is not uncommon w my condition , I belong to an amazing web support group " ICnetwork.com" and 90% of these women and men and parents of young children w IC have many horror stories of indifference , neglect , uncompassionate and downright baffled doctors . We are tired of not being heard and thought if maybe you worked IC into an episode that maybe doctors and people alike would begin to understand the magnitude of this disease and how it can destroy so many lives . Thank you for taking the time to read all of this , I hope you can help us be heard .
Sincerely ,
Lauren Myers