Dr. Jay Burstein
Dekalb Clinic
217 Franklin St.
Dekalb, IL 60115
815-758-8672

Dr. Jay D. Burstein is a
Board Certified Urologist
specializing in painful voiding syndromes and incontinence.

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Created: March 2000
JO & JB
Revised: August 2001
Diane Manhattan

You are here: IC Network > Q&A with an MD > March 2000

Q & A with Dr. Jay : March 2000

Please remember that Dr. Jay does NOT give personal medical advice via the web. Always review any information that you receive on-line with your personal medical care provider. Only your personal doctor can and should make medical recommendations to you.

16. What is the link between UTI's and IC?
17. Are some IC patients only treated by the diet?
18. Should contraceptive pills should be used by IC patients?
19. Urine leakage and IC
20. Multivitamins and IC
21. Is urethral dilation helpful for IC?
22. Artificial sweeteners and IC; is there a connection?
23. I am moving out of state. How do I find a new Uroligist?
24. How does "chronic cystitis" in the bladder differ from IC?
25. Is IC hereditary?
26. Would the herb Kava Kava create any discomfort for an I.C. patient?
27. BOTOX injections for IC, IBS, and Vulvar Vestibulitis
28. Urethral Pain and pelvic floor dysfunction
29. Why are nighttime symptoms worse than during the day?
30. When someone eats the no-no foods, generally how long does it take for the bladder to react?
31. IC and vulvodynia & Disability vs returning to work
32. IC specialists in Sydney, Australia
33. What types of birth control are best for IC patients?
34 What is the link between pelvic floor dysfunction and IC.
35. Can stress makes your IC symptoms worse?
36. Can IC come and go with different levels of severity?
37. Why is Rimso-50 (DMSO) unavailable?
38. While on DMSO treatments and Elmiron should pregnancy be considered?
39. Can a vaginal infection cause similiar symptoms to IC?

16. What is the link between UTI's and IC? I am still getting UTI's after being diagnosed with IC. Are the antibiotics being perscribed making the IC worse?

They are two separate conditions. It's likely that the IC is chronic and the urinary tract infection is just incidental. Some people might be more sensitive to antibiotics but, as a class of medications, there is no known direct effect.


17. Are some IC patients only treated by the diet?

Yes, there are. There are patients who find that the diet is all that they need for their symptom relief. It's a minority. Most patients require some other treatments and/or symptom relief.


18. As chairman of the IC Patients' Association in the Netherlands, I have been asked by a number of members whether the contraceptive pill should be used by IC patients. Could you shed any light on this for me?

Hormones certainly play a role in exacerbating the symptoms of some IC patients. We know, for example, that patients may flare when they ovulate, as well as before their menstrual cycle. The role of birth control pills in exacerbating IC, however, is uncertain. It's like pregnancy and IC. Some patients may get better during pregnancy, and some may get worse. It may require some trial and error before you find a combination that works effectively for you.


19. After I urinate, I stand up and some urine squirts out or I will walk a few steps into another room and it will do this. I do not have incontinence problems other than a few drops but it is enough for me to feel uncomfortable. This never happens any other time. I have IC. Why is this?

Sounds like you're having some bladder spasms at the bladder neck or even spasms of the pelvic floor. It may be valuable for you to have a pelvic floor assessment and/or to try some kegel exercises to improve your overall muscle tone.


20. I've talked with several patients who are unable to take multivitamins. Why is this?

Some IC patients simply can't tolerate the acidity of ascorbic acid, a common form of Vitamin C. In addition, Vitamin B-6 (pyridoxine hydrochloride) and magnesium have been reported to exacerbate the symptoms of some IC patients. Bev Laumann, in her book
"A Taste of the Good Life: A Cookbook for an Interstitial Cystitis Diet" has an excellent section discussing vitamins and supplements. She reports that while some patients may be unable to take commercial vitamins, they can usually tolerate the same vitamins found directly in foods. Bell peppers, for example, are an excellent source of Vitamin C. Sunflower seeds, cashews and almonds are an excellent source of B-6. It's worth noting that most commercial vitamins also have food coloring, fillers and extra stuff which can react negatively with a sensitive IC bladder.


21. Is urethral dilation helpful for IC?

No. Dilations have no role in the treatment of IC. They are certainly indicated for congenital urethral stenosis (an abnormal narrowing of the urethra) which is a relatively uncommon congenital abnormality. It is usually found in a pediatric age group. Unfortunately, many urologists continue to consider this meaningful treatment.


22. What evidence is there of a connection between a history of heavy consumption of artificial sweeteners and IC?

Artificial sweeteners, such as Nutrasweet (aspartame), are well known triggers for IC flares. I continue to see in my practice patients whose symptoms are exacerbated by artificial sweeteners. I stopped using artificial sweeteners myself about five years ago because I am unsure of the metabolites/byproducts that are formed in the body.


23. I am starting with a new urologist because of relocation out of state. I feel that I have IC because I haven't been responding to antibiotics. I have been through a term of levaquin and zithromax since mid January when my symptoms resurfaced. Now I have the added discomfort of pain along with the unbearable relentless urge to pee. How do I get the care I need from my new urologist? Should I be more assertive or suffer through the endless trial and error?

This is not the time for you to be passive. You should be assertive and proactive. Make sure that you get a urologist that is interested in treating patients with IC. Also, it will be helpful if you bring in a voiding diary as well as additional medical records. You can check the ICN Physician Listings, or the ICA and/or contact your local county medical association. On-line, the AMA (http://www.ama-assn.org) offers a Dr. Finder service where you can search for physicians by zip code.


24. When I had my hydro and bladder biopsy, the pathologist reported that there was evidence of "chronic cystitis" in the bladder but not enough mast cells for an IC diagnosis. How does "chronic cystitis" in the bladder differ from IC, in terms of the bladder wall?

Mast cells are naturally found throughout the body, particularly in the skin, the nasal passages and the GI tract. When you have a cold or suffer from fever, mast cells react to pollen or a virus by producing histamine and other substances. This leads to pain, inflammation and swelling. Mast cells are also normally found in the bladder wall and muscle. The role of mast cells in IC is disputed in part because research studies have demonstrated that not all IC patients have high levels of mast cell activity.

The level of mast cell activity may relate to the type of IC that you have. In the March 200 Journal of Urology, "Recruitment, distribution and phenotypes of mast cells in interstitial cystitis" by Peeker R, Enerback L, Fall M, Aldenborg F states that patients with "classic IC" (ulcerative) do have more mast cells in their bladders than in "non-ulcerative" IC. The NIDDK suggests that IC be diagnosed with an analysis of your urinary frequency, urgency and/or pain. I, personally, don't use a mast cell analysis in my diagnosis of IC patients.In using the term "chronic cystitis," it appears that your physician has found evidence of long term inflammation in your bladder, which could have been caused by a variety of factors, such as a long term infection or even a bladder stone. But, we don't know if your doctor found the characteristic "petechial hemorrhaging" (glomerulations common in IC patients) in your bladder.

I suggest that you sit down with your doctor and discuss your concerns. If you fit the other diagnostic criteria for IC, it may be helpful for you to try the IC diet to see if that helps to reduce your discomfort and symptoms.


25. My 6 year old daughter has been voiding every 10 minutes for approximately 6 weeks she had had urine cultures. These are showing negative. Her doctor thinks she is just nervous, I know this is not true. I have IC and I am wondering if this is hereditary. I'm sure it is. My daughter is getting very aggravated over this should I taker her to a specialist or assume she is going to take after me.

You have to make sure that she is seen by a pediatric urologist. Whenever people use the term "nervous" I think that that's a sign that they just don't know. It's important to first rule out any anatomic difficulties that could be contributing to the frequency, such as a neurogenic bladder, urethral stenosis (stricture).

She should have a neurological exam, an ultrasound to make sure that she empties her bladder completely, and, in some situations, a specialist may want to do a urodynamics exam on her. The whole idea is to rule out an anatomic basis to her problem. If none can be found, then behavior modification (timed voiding) would likely improve her situations.


26. Would you know if Kava Kava, a calming herbal supplement, would create any discomfort for an I.C. patient?

I have patients I recommend Kava Kava too. It's an anxiotylic (anti anxiety) medication. In animal tests, kava kava produces sedation, an antispasmodic effect and is a muscle relaxant. It can be used for nervous anxiety, stress and restlessness. No health hazards are known with the proper administration of therapeutic dosages. As with any medication, specific allergic reactions can occur. It should not be taken for longer than 3 months without a doctors supervision. For dosage information, please talk with your doctor.


27. My urogynecologist suggested BOTOX injections for my pelvic pain, ie. IC, IBS, and Vulvar Vestibulitis. What do you think about that treatment?

I have no idea. I would get a second opinion.


28. Having visited several doctors for pain in the urethra area (the problem started after a bladder infection), a wonderful doctor in B'ham AL discovered I had something similar to IC in the urethra--basically he said the lining had been destroyed and I have nerves exposed. My pain intensifies when I sit. The pain is not extreme, but constant. I do not have the constant urge to urinate that most IC patients seem to have. Have you heard of this and do you know of any treatments? Any info you can provide would be appreciated--it is getting difficult for me to work because of the constant pain.

This could be possible but I'm wondering if you may have pelvic floor dysfunction? Why? Because when you sit (and the underlying muscles adjust), your pain worsens. I think a pelvic floor evaluation would be in order. It could be urethritis, but I would suggest a pelvic floor evaluation to rule out a hypertonic spasm of the pelvic floor muscles.


29. Why do I have a problem only at night while sleeping then when I get up there is no pain most of the day?

It may just be distraction. We have many patients who report that, at night, their symptoms seem worse because there is nothing to distract them from their bladders symptoms. If it is preventing you from sleeping, you'll want to talk with your doctor about other alternatives. Some medications can be very useful in improving patient sleep patterns, such as a low dose antidepressant or hydroxyzine (Vistaril/Atarax). The ICN also has some insomnia self help tips.


30. When someone eats the no-no foods, generally how long does it take for the bladder to react? How long should the reaction last?

Since I'm not an IC patient, it's hard for me to give you the specifics. Jill tells me that she can tell, often within an hour, if she's eaten something that bothers her bladder, particularly soda. In other cases, in may be that night or the next day before the symptoms appear. How long should they last? It depends upon the state of your bladder health. If you're bladder is generally in good condition, the reaction should resolve relatively quickly. However, if your bladder is very sensitive (i.e. you have Hunner's Ulcers or are already in a flare), it may be the proverbial "straw the broke the camels back" and cause a longer flare.


31. Because of IC and vulvodynia, I had to give up an elementary teaching job eight years ago. I have been told getting disability is almost impossible. My husband may be losing his job and cannot collect unemployment. I want to help. Can the people at Vocational-Rehabilitation help me find a good paying job. I cannot sit for long periods of time and have frequent urination problems. Some days I am homebound because my underclothes are too irritating. Can anyone out there help me to help myself?

This is an excellent question and depends, in large part, on how your doctor evaluates your health. If your doctor agrees that you are fully disabled and should not work, then an application for SSA disability makes sense. Yes, the denial rate is high, but more and more patients are also being approved.

If your doctor states that you can work, without risk, then you may be able to look for work. Obviously, you'll need access to a restroom frequently and it may be helpful for you to use a chair cushion that would make sitting easier. The ICN has one that has helped several others sit for longer periods of time.

You can read more about vulvodynia and the disability application process in the ICN Patient Handbook (http://www.ic-network.com/handbook/). Make sure that you read the self help chapter, that can help you identify some of the common irritants, such as laundry soap, bath soaps, etc. that seem to exacerbate vulvodynia and IC symptoms.


32. I am 23 years old and have had symptoms of IC for a few years. Doctors kept giving me antibiotics even though (as I later discovered) there was no infection in my urine. I am now having trouble getting a diagnosis from urologists, have been put through every test imaginable and feel that I am not being taken seriously. Do you know of any IC specialists in Sydney, Australia?

I would contact the Australian and New Zealand IC support groups for their list of providers. You can find that info on-line at: http://www.ic-network.com/handbook/support.html


33. I was diagnosed with IC in 1990 and have been in remission since 1992. I started taking birth control pills for the last 6 months and my IC symptoms have returned. What types of birth control are best for IC patients? Does the type of hormone in oral contraceptives matter?

As I mentioned in an earlier question, hormones can certainly impact IC. Some patients report that progesterone based pills can cause flares, while others find that estrogen can cause problems. Symptoms may also relate to a chemical sensitivity to the additives or fillers found in pills, such as in premarin. It may be preferable for you to try non-pill related contraception, such as condoms, spermicides, etc.


34. Please explain the link between pelvic floor dysfunction and IC. The first time I developed major pain from pelvic floor muscle dysfunction, that is when the IC symptoms began to appear. Does sexual intercouse increase IC bladder inflammation or symptoms?

The bladder sits on several muscle groups that collectively are called the pelvic floor. If these muscles are loose it may lead to a "fallen" bladder which can cause urine leakage with a laugh, cough or sneeze (stress incontinence). If the muscles are over- active or go into spasms, a variety of clinical symptoms can result such as urinary frequency and burning ,bladder and/or pelvic pain (very similar to IC).

While we're not sure exactly what causes IC, it's clear that the pelvic floor must be evaluated as a cause for urinary frequency, urgency and/or pain. Symptoms can come from a traumatic injury to the pelvis (like a bicycle accident), from a bladder infection and also from underlying muscle/nerve problems. The similarity is that both IC and PFD can cause all three symptoms. However, it's like the chicken or the egg, we're not sure which comes first or even if they are related.

There is some research supporting the fact that if you had a childhood muscle trauma, it can provoke some frequency and urgency in later years. It also makes sense that if you've had IC first and had significant symptoms over a long period of time, that the muscle tone of the pelvic floor could become overactive and lead to the development of PFD. In many cases, PFD can be relieved with the use of biofeedback and myofascial release techniques that help to relax the pelvic floor.


35. Do you feel stress makes your IC symptoms worse? I used to work full time, but I have found that I am completely exhausted and tired all the time. I used to work many hours, and have as little as 5 hours sleep. I was diagnosed with IC two years ago and the job I have is extremely stressful with long hours and I can't do it anymore. I believe that this makes my IC symptoms worse.

Yes, stress can make an IC flare worse. The more stressed you are, the more tense your muscles will be including those muscles around the bladder. That can easily lead to more pain and discomfort. If you feel that stress is a problem, then you may want to try, twice a day, a very simple five or ten minute guided relaxation that you can do in your office. There many audiotapes available that can help you, throughout the day, keep calm, collected and tension free.

We all "think" that we are good stress managers, but we've got to be willing to practice what we preach. Many Icers work successfully full time depending upon their physical condition, but the most successful usually have EXCELLENT stress management skills. They sleep well. They eat a balanced diet. They ask for help if needed, including taking a stress management or two. It can also be helpful for you to talk with a psychologist to get some ideas on how you can more effectively handle it all. Have faith!


36. I have not been diagnosed with IC, however, for 4 months now I have had bouts of bladder irritation/infection feeling episodes. When cultured I have no infection. I recently had a bladder and kidney ultrasound which proved normal. For three weeks I had no symptoms and then back it came. No blood tests have been performed. Can IC come and go with different levels of severity? And how is one determined not to have an infection? I'm on my second Urologist. What should the routine tests be to rule out IC?

Yes, IC is a condition of remission and flare. It may just be that you're flaring while you ovulate or before your period. It can be very helpful for you to do a voiding diary for a few months so that you can easily track your monthly flares.

Both bladder and vaginal infections are determined via a culture, which can be easily done. You should definitely have a urinalysis as part of the screening process. Other tests may include a urodynamics, VCUG, cystogram, IVP and, of course, a possible hydrodistention. A good OB-Gyn work up also makes total sense here.


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37. Just learned today that Rimso-50 (DMSO) is not available from manufacturer and no availability date has been released. The same thing happened in July, 1999, and I could not get treatment until September. What is going on? Is any action being taken to correct this situation? Many patients must be affected.

This is a complicated situation. Baxter Pharmaceuticals owns RIMS0-50. They contract with another company, Terra Pharmaceuticals, to manufacture it. Terra is currently going through an FDA review process which has limited its availability both last year and this year. Until that is resolved, some hospitals and physicians are obtaining "compounded DMSO," which is prepared (compounded) directly by qualified pharmacists. Check back issues of the ICN newsletter for more information on this.


38. I'm 27 and I've been diagnosed whit IC a year ago. I've been under treatment since (elmiron, DMSO). It was going really well until last week when the pain came back. I was planning a pregnancy for this summer. My doctor is putting me back on DMSO treatments and I'm still taking Elmiron. I'm afraid there's never gonna be a good time. Should I forget the idea of another baby?

Absolutely not. You're still very young and don't need to make this decision for many years more. There are many babies born successfully to IC patients. It's certainly important to wait until you're feeling a bit better for you go for it. You can talk with other women who hope to become pregnant, or are pregnant, in the ICN Message Boards. The ICA-US also has a pregnancy support telephone list.


39. Is it possible that another type of infection such as a vaginal infection can cause similiar symptoms to IC like urgency, pain, burning, itching? I took antibiotics for a long period of time and I am thinking the over use of them caused some of my problems which caused a build up of yeast. Is there such a thing as yeast cystitis?

Yes, it is. The hard part about treating pelvic diseases is that it's often hard to distinguish between the two. Certain vaginal infections can cause bladder sensitivity. Some patients also report that yeast infections can cause dramatic bladder irritation and symptoms.

 




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