Interstitial Cystitis Patients Survey, Bladder Infection Cause

PATIENT SURVEY; PATIENT ANSWERS

This survey is new and we have had a couple of problems with it. We have corrected the problems as of 1/29/05, but of the more than 100 surveys before that, we lost 4 because people wrote extensively in the boxes provided, rather than limiting comments to about 10 words. We do not want to lose these accounts, long or short, and ask you, if you used more than about 50 words, to please redo the survey, including the boxes where you wrote explanations. The survey program has been rewritten to accomodate long accounts. Again, this involves only about 4 surveys. And we apologize for this inconvenience. PLEASE BEAR WITH US - THIS IS A VOLUNTEER EFFORT.
If you are filling out this survey after 1/29/05, please try to keep your answers short in the boxes, but if you feel you'd like to give us a longer account, please do so. And please give us your e-mail if you are willing. Thank you.

The following is a SURVEY of PATIENTS with urinary symptoms of "urgency and frequency" of urination, sometimes burning and other pelvic pain. Partly because the cause of these symptoms is usually unknown, there are many diagnostic terms used for these symptoms. For the purposes of this survey and website we will use the word CYSTITIS to mean all related diagnoses - lower urinary tract infection (especially chronic or recurring infections), urethritis, urethral syndrome, trigonities, interstitial cystitis (and possibly others).

Basically, the survey asks whether the tests and treatments you have experienced improved your symptoms, made symptoms worse, or had no effect. It also asks how cystitis has affected your life.

The results of the survey will be published on this website after the first 100 cystitis sufferers have answered the questions.

Your answers to the survey will be published on this website as part of numerical totals for each question, without any names. All individual answers are confidential. This is a secure site (See disclaimer). Please tell other cystitis patients about the survey; the results will be less valuable if we do not have a significant number of responders.

It is hoped that your answers will be useful to all of us in several ways: helping us to discuss treatment options with various specialists, encouraging more research and much better treatment for cystitis, and perhaps fostering more cooperation among medical specialties, between traditional and alternative medicine, and between medical providers and patients toward a better understanding of cystitis, and different medical models - e.g. patient as individual and not recipient of a formula for all. Basic communication between doctors and patients is often lacking. A number of doctors have told me that they believe that a patient has benefited from the therapy they gave the patient if the patient doesn't return to the doctor. Patients tell me that they often don't return because the therapy has not benefited them and they have switched doctors. Dr. Elizabeth Kavaler, New York Urological Associates, says: "It starts with the patient...It's very hard...unless patients demand alternatives. We see that in breats cancer. Women didn't want mastectomies anymore so there's been a drive to stop that....We have patients saying 'I won't live with this (cystitis) anymore. It's not acceptable.'"

The survey was written by the author of this site, Kay Zakariasen, and Dr. Elizabeth Kavaler, New York Urological Associates, New York, New York.

Use PRINT button on the upper right of this page if you want to print text only.


1. I am answering this survey for:	myself
	a family member
	a friend
	other


If you are answering the surveys for someone else, please ignore the word "I" and "you" and answer appropriately for them.


2. My country of origin is:

3. I am years old


4. I am	a female adult with cystitis
	a female child with cystitis
	a male adult with cystitis
	a male child with cystitis


5. Do you have health insurance? (Cystitis often involves many trips to doctors, other health providers, many trials of medications and supplements, etc., and can have a financial cost as well as physical and emotional costs.)	yes
	no


IT IS UNKNOWN WHETHER RACE OR ETHNICITY IS RELEVANT TO CYSTITIS. THIS SURVEY MAY HELP US TO KNOW THAT.


6. My race is:	White
	African American
	Asian/Pacific Islander
	American Indian or Alaska Native
	Multi-racial


Are you Hispanic?	yes
	no


7. Have you ever had urinary urgency, frequency, burning when you urinate, or other pelvic pain associated with the bladder or urethra? Mark the symptoms that you have:	urgency
	frequency
	burning sensation when urinating
	other uncomfortable urinary tract or pelvic pain
	none of the above


IF YOU HAVE NOT HAD ANY OF THESE SYMPTOMS, PLEASE STOP FILLING OUT THE QUESTIONAIRE, AS THIS SURVEY IS FOR PEOPLE WHO HAVE HAD ONE OR MORE OF THESE SYMPTOMS. THANK YOU.

8. Were you ever told by your doctor that you have any of these diagnoses? Please check. Please number each diagnosis from earliest (1) to most recent:
		yes	no	don't know	number
	a. cystitis
	b. urethritis
	c. trigonitis
	d. urethral syndrome
	e. interstitial cystitis
	f. bladder infection
	g. painful bladder syndrome
	h. overactive bladder
	i. pelvic pain syndrome
	j. lower urinary tract syndrome
	k. If you have ever been told by a doctor that the cause of your cystitis is "psychological," please write that here, as well as any other diagnosis not on our list. If the doctor explained what he/she meant when he/she said that your cystitis was psychological, please tell us what was said: (Please, limit your text to 30 words)


9. Was your urine ever tested for bacteria by a health care provider?	Yes
	No
	Don't know


10. If your urine culture was positive did you seek treatment for the infection/s?	Yes
	No

IF YOU DON’T KNOW THE ANSWERS TO SOME OF THE FOLLOWING QUESTIONS, YOU MAY WANT TO CONSIDER ASKING YOUR DOCTOR/S. YOU MAY ASK FOR A “TREATMENT HISTORY,” IF YOU WISH.

11. My urinary symptoms - urgency, frequency, and sometimes burning or other pelvic pain -		were always connected to a positive urine culture (bacteria in the urine confirmed by urinalysis)
		were usually connected to a positive urine culture.
		were sometimes connected to a positive urine culture
		were never connected to a positive urine culture

12. Did you ever take antibiotics for your cystitis, whether related to a positive urine culture or not?	Yes
	No
	Don't know

13. Did you ever take antibiotics for longer than 2 weeks at a time for cystitis?	Yes
	No
	Don't know

14. Were you ever given antibiotics without a test for bacteria/infection in the urine?	Yes
	No
	Don't know

15. Were you ever given antibiotics even though a test for bacteria in the urine was negative or indicated no bacteria/infection?	Yes
	No
	Don't know

16. If you had an infection, was the infection painful?	Yes
	No	go to Question 18

17. Did the pain subside after treatment with antibiotics?	Yes
	No
	Don't know

18. Were other treatment options offered to you besides antibiotics?	Yes
	No
	Don't know

19. Whether your symptoms were related to infection, or not , for how long have you had cystitis symptoms?

20. In what year did you first experience symptoms of cystitis?

21. Are you currently experiencing symptoms?	Yes
	No	go to Question 23

22. Are your symptoms on and off or constant?	on and off
	constant
	they were on and off but now they are constant

23. Recently, my symptoms of urgency and frequency, on a scale of 1-10, 10 being the most severe, are:

24. During the period of time when my symptoms were the worst, on a scale of 1-10, 10 being the most severe, my symptoms were:

25. Please tell us how often your symptoms occur. Check only the statements that apply to you:	I have only had these symptoms once.
	I have had these symptoms only two or three times
	I have had these symptoms four to ten times
	symptoms come roughly once a week and disappear in between times
	symptoms appear about the same time as menstruation and disappear in between times
	symptoms appear about once every three to 6 months
	symptoms appear about once a year
	symptoms appear every one to three years
	symptoms may be stronger or weaker but basically never go away
	none of these statements apply to me. I can describe the frequency of symptoms in less than 10 words (Please, limit your text to 30 words) :


26. If your symptoms are seasonal, please check the season/s when symptoms are worst:	summer - symptoms are worst
	fall - symptoms are worst
	winter - symptoms are worst
	spring - symptoms are worst
	symptoms are seasonal
	symptoms are not seasonal


27. I think symptoms are brought on by or made worse by:
Please also tell us what you think might have caused the symptoms when they first began, and causes them now each time they become worse. If you used spermicide before the symptoms began, please include this also. (Please, limit your text to 50 words)


27A. If your doctor told you that there are physical causes of your symptoms, please list them. (For example a tumor, lesions or wounds, prolapsed uterus, etc..) (Please, limit your text to 50 words)


28. In general, I would describe my symptoms at their worst as:	mildly irritating
	limiting my ability to do things as well as I used to
	so severe that I don't really enjoy anything anymore
	so severe that I sometimes feel that life is no longer worth living


29. I have consulted approximately the following number of doctors regarding these symptoms; include all doctors - general or family practitioners, gynecologists, urologists, internists, etc:	1 doctor
	2-3 doctors
	4-6 doctors
	7-10 doctors
	11-20 doctors
	21-30 doctors
	31-40 doctors
	more than 40 doctors

30. Do you feel that urologists successfully treated your cystitis?	Yes
	No

31. Have doctors with a medical specialty other than urology been of help to you in treating your cystitis symptoms? (e.g. allergists, immunologists, etc.)	Yes
	No	go to Question 33

32. If you have seen specialists other than urologists, please tell us:
a. which specialists (e.g. gynecologist, allergist, chiropractor, accupunmcturist, practitioner/doctor of Chinese, Ayurvedic or other alternative medicine, pelvic floor therapist, etc. etc.) and what treatment was prescribed
b. whether your symptoms were improved significantly, a lot, or completely, or whether the symptoms were unaffected, or worse after treatment by other specialist/s,
c. what the diagnosis was
(Please, limit your text to 30 words)


33. PLEASE LIST other physical ailments that came on about the same time as the cystitis. Please list each in less than 5 words.	a.
	b.
	c.
	d.
	e.

34. Please, list the foods that make your symptoms worse: (Please, limit your text to 30 words)

THE NEXT SECTION OF THE SURVEY ASKS WHETHER YOU FOUND SPECIFIC TESTS AND PROCEDURES HELPFUL, HARMFUL OR NEUTRAL. IF YOU WISH, YOU CAN ASK YOUR DOCTOR/S FOR A TREATMENT HISTORY. Tests and Treatments are in bold type, followed by definitions.

35. Please indicate whether you have had the following TESTING PROCEDURES and whether they improved your symptoms, made your symptoms worse or had no effect on your symptoms; if you don't know exactly how many times you had a particular test done, please indicate an approximate number. If you did not have a test, just go on to the next question and leave answers blank.

I have had one or more medical tests and treatments by doctors (MDs) for cystitis.
I have not had any medical tests or treatments by doctors (MDs) for cystitis. (Go to the end of survey, and hit "submit" button.)
I have not had any of the medical tests or treatments by doctors listed in questions 35 or 36, but have had others. (Go to question 37)

	A. HYDRODISTENTION of the bladder (putting water into the bladder to stretch it, usually to diagnose Interstitial Cystitis)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know if this procedure was done

		Hydrodistention seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know
THE EFFECT WE MEAN IS ONE THAT IS A LONG TERM EFFECT, PREFERABLY LONGER THAN SIX MONTHS. FOR EXAMPLE, IF YOUR SYMPTOMS BECAME WORSE FOR A FEW DAYS AND THEN RETURNED TO WHAT THEY WERE BEFORE THE TEST OR TREATMENT, THEN YOU WOULD ANSWER "NO EFFECT ON SYMPTOMS." IF YOUR SYMPTOMS BECAME BETTER FOR A FEW DAYS AND THEN BECAME WORSE, YOU WOULD ANSWER "MADE SYMPTOMS WORSE." WE ARE INTERESTED IN THE LONGER TERM EFFECT.

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	B. CATHETERIZATION (using a narrow tube to fill or drain the bladder as part of a test or treatment)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Catheterization seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	C. URETHRAL CALIBRATION (measurement of urethra width)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	D. URETHROSCOPY (looking at the urethra with a small lighted scope)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	E. URODYNAMICS - CYSTOMETROGRAM (measuring bladder capacity by filling it with water and measuring the pressure as water is instilled and expelled)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	F. URODYNAMICS - UROFLOWMETRY (measuring the efficiency with which the bladder empties)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	G. URODYNAMICS - VIDEO		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	H. CYSTOSCOPY (examination of the bladder with a thin instrument equipped with a tiny light and camera)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		This test seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times


I. I had more than one of these tests during the same office visit and I do not know which one or more of them effected my symptoms, but my symptoms were effected in the following way:		My symptoms were better after these tests
		Symptoms were worse after these tests
		Symptoms were unaffected

J. Other test which affected my symptoms, either alone or with other tests: (Please, limit your text to 30 words)		Yes, I had this procedure
		No, I didn't have this procedure
		Don't know

	This test seemed to affect my symptoms in the following way:	improved my symptoms
		made symptoms worse
		no effect on symptoms
		Don't know

	I had this procedure done:	1-2 times
		3-5 times
		6-10 times
		more than 10 times


	K. Before you had these tests, please check the items that your doctor mentioned:	his or her reasons for performing the test
		possible negative side effects, short term
		possible negative side effects, long term
		whether research has been done to determine whether there are short or long term negative side effects
		alternatives to taking these tests
		the views of doctors practicing western medicine in other countries about the test/s
		the difference of opinion among American doctors about the usefulness of the test he or she is suggesting
		the difference of opinion among doctors and patients about the usefulness of the test


	L. If you have a statement about any of these tests that is important to you, please do so in less than 30 words, if possible. If you want to, please give us your e-mail address, so we can contact you if we need more information: (Please, limit your text to 30 words)

36. Please indicate whether you have had the following TREATMENTS for symptoms of urgency and frequency, and sometimes other pelvic pain. Please indicate whether the treatments you had improved your symptoms, made your symptoms worse, had no effect on your symptoms. If you don't know exactly how many times you had a particular treatment done, please indicate an approximate number. If you did not have a treatment, just go on to the next question and leave answers blank. Thank you.
	A. ANTIBIOTICS		Yes
			No
			Don't know

		I have taken antibiotics for cystitis	1-3 times
			4-6 times
			6-10 times
			more than 10 times

		I have taken the following kinds of antibiotics for cystitis:	ampicillin
			penicillin
			sulfa drugs
			nitrofurantoin/Macrodantin
			tetracycline
			erythromycin
			neg gram
			bactrim
			cipro
	other? (Please, limit your text to 30 words)

		I took antibiotics at the same time as treatments:	1-3 times
			4-6 times
			6-10 times
			more than 10 times

		Please indicate which tests or treatments you received antibiotics with: (Please, limit your text to 30 words)


B. The following is a list of medications which are prescribed by some doctors for cystitis - most in theory to treat symptoms and relatively unexplored. Please indicate the medications you have used by checking the radio buttons that best discribe the effect of the medication on your symptoms (American brand names for each drug are in blue ink and if there are different names for each drug in Canada, Europe, Australia and South Africa they follow the American drug names, in red. Not all the brand names are listed):
	helped	had no effect	made symptoms worse	side effects intolerable
Advi, Excedrin, (Motrin, Brufen, Neobrufen, Antiflam)
Allegra (Telfast)
Arthotec
Atarax, Vistaril
Benedryl, Unisom (Mereprine, Medinex, Insomnal, Restavit, Restwell, Somnil)
Bicitra, Citra pH, Urocit-K (Polycitra-K, Cystocalm, Cystemme, Soludial, Alkala T, Citrosodina, Kation, Bullrich Salz, Kajos)
B&O suppository
Cardura (Cardular, Alfadil, Prostadilat Supressin)
Celebrex
Chlor-Trimeton (Chlor-Tripolon, Piriton, Trimeton, Polaramine, Histamed)
Codeine
Cox-2 Inhibitor
Cystospaz, Levbid, Levsin, Levbid, Levsinex, Anaspaz (Peptard, Duboisine, Egacene Durettes, Egazil)
Detrol
Ditropan
Ditropan XL
Dolophine, Methadone (Martindale Methadone Mixture DTF, Symoron, Metasedin, Ketalgine, Eptadone, Physeptone)
Duragesic, Innovar (Marcain plus Fentanyl, Thalamonol, Leptanol, Leptofen)
Elavil (Elavil Plus, Levate, Adepril, Laroxyl, Equilibrin, Saroten, Triptizol, Tryptizol, Saroten, Tryptanol)
Elmiron (Hemoclar, Febrezym, Fibrase, Fibrocid, Polyanion, Tavan-SP54)
	helped	had no effect	made symptoms worse	side effects intolerable
Flexeril (Flexiban, Yurelax)
Flomax glucosamine &controitin
Hismanal
Hytrin (Hytrinex, Flotrin, Heitrin, Itrin, Teraprost, Urodie, Deflox, Magnurol)
Levo-dromoran
Levsin, Cystospaz
Lorcet,Tylenol (Panadol, Panodil)
Lortab, Vicodin (Vapocet, Dicodid, Hydrokon, Bicodone, Dicodid)
Lupron (Prostap, Lucrin, Procren, Procrin)
MS contin, Roxanol (Morcap, Kapanol, Moscontin, Capros, MSI, MST, Morfina)
Naprosyn, Aleve (Naproxen, Apranax, Synflex)
Neurontin
Norpramine (PMS-Desipramine, Pertofran, Nortimil)
Ovadis
Ovamorph
OxyContin, Percodan (Supeudol, Oxycodone, Endone)
Pamelor (Apo-Nortriptyline, Allegron, Aventyl, Nortrilen)
Percodan, Oxycontin
Percoset
Polycitra (Polycitra-K, Cystemme, Cymalon, Cystocalm, Soludial, Natron, AlkalaT, Citrosodine, Cystopurin, Kajos)
	helped	had no effect	made symptoms worse	side effects intolerable
Prelief, Citracal (Calcium-Sandoz)
Pyridium (Phenazo, Uroprine)
Pyridium Plus
Resiniferatoxin
Roxanol, MS Contin (Morcap SR, MST Continus)
Sinequan
Singular
SSRIs
Tagament (Cimetag, Cimetimax, Cimetine, Cimepuren, Cimebeta, Cimehexal, Cimemerck, Cimephil, Cimeldine, etc.)
Talacen, Tylenol (Panedol, Panodil, Fortagesic)
Talwin (Fortral, Fortagesic, Sosegon, Sosenol)
Tofanil, Imipramine (Imiprin, Impril)
Tylenol, Talacen (Anacin, Panadol, Atasol)
Ultram (Zydol, Topalgic, Amadol, Tradol, Tramagetic, Zydol, Tramal)
Uripas
Urised (Perodontal, Urodil, Munvatten, Barostyrol, Carl Badens Divinal, Lip-Sed)
Vicodin, Lortab
Vistaril, Atarax (Multipax, Aterax)
Zantac (Zantic)
Zydone (Vapocet)
Zyrtec (Zirtek, Reactin)
	helped	had no effect	made symptoms worse	side effects intolerable
If you found any of these medications made your symptoms much better please tell us how long you took the medication before symptoms improved: (Please, limit your text to 30 words)


	C. DILATION OF THE URETHRA ("widening" of urethra)		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		It seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know
THE EFFECT WE MEAN IS ONE THAT IS A LONG TERM EFFECT, PREFERABLY LONGER THAN SIX MONTHS. FOR EXAMPLE, IF YOUR SYMPTOMS BECAME WORSE FOR A FEW DAYS AND THEN RETURNED TO WHAT THEY WERE BEFORE THE TEST OR TREATMENT, THEN YOU WOULD ANSWER "NO AFFECT ON SYMPTOMS." IF YOUR SYMPTOMS BECAME BETTER FOR A FEW DAYS AND THEN BECAME WORSE, YOU WOULD ANSWER "MADE SYMPTOMS WORSE." WE ARE INTERESTED IN THE LONGER TERM EFFECT.

		How many urethral dilations have you had? If you don’t know exactly how many, please estimate.	one
			two
			3-4
			5-10
			11-15
			16 and more

		Did the doctor explain the procedure to you before performing it?
			yes
			no
			Don't know

		Was anesthesia used?	yes
			no
			Don't know

		Was the procedure painful?	yes
			no
			Don't know

		Do you think it improved your condition?	yes
			no
			Don't know

		Would you undergo this procedure again?	yes
			no
			Don't know

		Do you know other women who have had dilation done?	yes
			no
			Don't know

		If you had dilation of the urethra, please give the code that the doctor assigned the treatment. You can leave this blank if you prefer but it would be helpful to know if you can provide it: (Please, limit your text to 30 words)

	D. URETHROTOMY (cutting of the urethral tissue):		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Urethrotomy seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	E. MEATOTOMY (cutting of the opening of the urethra):		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Meatomy seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	F. HYDRODISTENTION of the bladder (filling of the bladder to capacity as a treatment for interstitial cystitis):		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Hydroristention seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	G. ELECTRIC CAUTERIZATION of any part of the bladder or urethra:		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Cauterization seemed to effect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	H. CRYOSURGERY and nitrous oxide (surgery using freezing temperatures):		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Cryosurgery seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	I. INTRAVESICAL TREATMENTS (instilling various solutions in the bladder):		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Intravesical treatments seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

	Please check the chemicals which were instilled:		DMSO ® was instilled
			b. toxin treatments ® was instilled
			DMSO ® plus other substances such as steroids and heparin
			BCG ®
			Clorpactin WCS-90 ®
			Cystistat ®
			Cromolyn sodium ®
			heparin sodium ®
			Hyluronidase ®
			Marcaine ®
			Lidocaine ®

		I had this procedure done:	1-2 times
			3-5 times
			6-10 times
			more than 10 times

	J. NEUROSTIMULATOR- an implant to interrupt pain signals to the brain:		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		The neurotransmitter seemed to affect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

		I had this procedure done:	1 time
			2 times
			3 times

	K. HYSTERECTOMY - removal of the uterus as a way of treating the cystitis:		Yes, I had this procedure
			No, I didn't have this procedure
			Don't know

		Hysterectomy seemed to effect my symptoms in the following way:	improved my symptoms
			made symptoms worse
			no effect on symptoms
			Don't know

	L. Please check the information that your doctor/s gave you when proposing your treatment/s: (We recognize that we may be asking you about different doctors who proposed different or even the same treatment, and in that case, please check the ones that you feel you were adequately informed about by the majority of doctors that treated you for cystitis).		his or her reasons for wanting you to have the treatment
			what was the rate of success.
			that there is considerable disagreement in the urological community about the cause of cystitis and about how to treat it.

			that some urologists believe that some of these procedures may be harmful.
			that there might be possible negative side effects, short term.
			that there might be possible negative side effects, long term.
			whether there have been long-term, well-controlled studies of the treatment that would support its use on the basis of its technical merits.
			about alternatives to the treatment/s the doctor was suggesting.
			about the difference of opinion between American doctors and doctors in other countries practicing western medicine regarding the use, affectiveness and possible negative side effects of the treatment he or she is suggesting.
			about the difference of opinion among patients regarding the usefulness of the treatment.

37. If you have a statement about any of these treatments that is important to you, please tell us here. (For example, if you feel that the treatment really helped, please explain. If you feel that the treatment caused any damage or worse symptoms, or caused another illness, please tell us. Please tell us anything that you think other patients should know about any or all of the treatments listed in the survey. We will publish all comments when we have 1000 surveys.)
Also, if you have had other tests or treatments that were not listed here, please tell us what they were and whether you feel they improved your symptoms, made you worse or had no effect. (Please, limit your text to 50 words)


37A. Please tell us which of the above urological treatments AND/OR which "alternative" treatments (for example accupuncture, Chinese medicine, Native American medicine, Chinese medicine, etc.) or home remedy you feel really was successful in improving your symptoms, and explain. (Please, limit your text to 30 words)


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