Interstitial Cystitis Network IC Expert Guest Lecture Transcript
Date: February 27, 2001
Topic: IC From the Perspective of a Female Urologist
Speaker: Susan McSherry, MD, New Orleans, LA
Moderator: Jill Osborne, ICN Founder
(icnmgrjill) Greetings and welcome to the ICN Meet the IC Expert Chat series. Our speaker tonight is Dr. Susan McSherry. Before we get started, I would like to remind our participants of our disclaimer. Active, informed IC patients understand implicitly that no online resource, chat, message board, or book should be considered personal medical advice. Only your doctor can and should give you advice. If you hear something interesting tonight that you'd like to explore further, we encourage you to research it via our web site and then bring that information to your physician.
(icnmgrjill) We'd link to thank our sponsor for tonight's chat: Farr Laboratories (makers of Cysta-Q). With their support, this and many other IC support activities are made possible. We are very grateful that they believe in the needs of IC patients.
(icnmgrjill) Dr. Susan McSherry comes to us from her urology practice in New Orleans, Louisiana. She has a passionate interest in caring for IC patients and will be sharing her insight with us on IC and her perspective as a female urologist. She is board certified in Urology and one of only 300 female urologists in the country. She attended and graduated from Tulane Medical School and completed her residency at Chapel Hill, North Carolina. She is currently in private practice. Welcome Dr. McSherry.
(DrMcSherry) Thank you Jill. I am happy to be here. This is my first online chat.
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(icnmgrjill) Tonight... we're just going to do Q&A. We have a lot of questions that have been submitted by email and from users currently in the chat room.
(icnmgrjill) Our first question comes from a man. He says "I visited four male physicians in four years who misdiagnosed me. It wasn't until I visited a female urologist in Florida that someone actually made the diagnosis and treats me with care the most knowledgeable care that I've had. In my opinion, women make better urologists so why are there so few of them?
(DrMcSherry) Women make great physicians and urologists. (I am biased!) In general, we are compassionate and make good listeners. I think there are so few because there are few role models. It is a very hard training course and takes 5 to 6 years after medical school. If you have access to a female urologist, try to see her.
(icnmgrjill) Susan asks "My doctor did not do a hydrodistention to diagnose me. In fact, he said that I didn't have IC because my cystoscopy was negative though now he has changed his mind. Should he have done a hydrodistention or can a diagnosis be made without it?"
(DrMcSherry) The diagnosis can be made in several ways: by symptoms and/or by cystoscopy with or without hydrodistention. It is not necessary to have a hydrodistention but is helpful if there is any doubt or if you need to be absolutely sure of the diagnosis. Some patients want a cystoscopy to insure there is nothing such as a bladder growth or cancer involved. In summary, the diagnosis can by made by symptoms or by cystoscopy or by cystoscopy with hydrodistention.
(icnmgrjill) Sonja asks "Can IC be caused by trauma to the bladder.. such as surgery?"
(DrMcSherry) Since we don't know exactly what causes IC, we can only speculate. Many patients state that it happens after surgery especially hysterectomy (or other female surgery) or a difficult catheterizations.
(icnmgrjill) Is it fair to say that trauma to the pelvic floor.. via a procedure.. plays a role?
(DrMcSherry) Yes. Pelvic floor dysfunction is definitely part of the problem and trauma to the pelvic floor can lead to IC.
(icnmgrjill) Dawn asks... "What is the best way to deal with pain after sex???"
(DrMcSherry) This is one of the most difficult problems for men and women with IC and also for the doctor. I suggest they use ice pack and use all of their IC medications. Make sure you are well lubricated. Female patients can also consider trying Estrace vaginal cream which replenishes the healthy vaginal tissue.
(icnmgrjill) Some patients can experience muscle spasms after sex and find that soaking in a tub can also be helpful to help relax those muscles. If you need additional information and ideas on sex, we have a section on sex self help in our online patient handbook and a message board that deals with relationships and sex.
(icnmgrjill) Our next question is from Laura. She asks about DMSO. She just had her first treatment and found that it burned badly and that she couldn't hold it. She's wondering what the success rate of DMSO is.
(DrMcSherry) About 85% of all patients respond to DMSO. You have the typical response, the burning and should feel better the next day. Usually, each week, the burning is less and the response is longer. Try to stick with it because when it works it really works.
(icnmgrjill) Our next question is from Ann. She asks "Is there any such thing as an antidepressant that does not affect your libido?" She says that she has zero feeling and sex drive. She is taking Elavil, Diazepam and Celexa.
(DrMcSherry) Almost all of the antidepressants cause a decrease in libido. Usually it is one of the serotonin uptake inhibitors such as Celexa, Paxil, Effexor, Prozac and Zoloft. However, these drugs are excellent for IC type pain and the situational depression that comes with a chronic illness. In low doses, Elavil and Diazepam (valium) don't have a severe effect on libido but be careful with the Diazepam because it can be habit forming.
(icnmgrjill) Dr. McSherry. One of the things that we commonly see is that because patients often see multiple doctors. They end up with a drawer full of prescriptions and often don't know what they are supposed to do. They don't know what the medication is for or what it is supposed to do. This just happened yesterday with a patient who called and was groggy. Turns out that she was taking generic Amitryptiline and Elavil.. and didn't know that they were the same drug. So if you, as a patient, are experiencing extreme side effects, take some time out with your doctor or pharmacist to learn about *all* of the drugs that you've been prescribed and how to use them appropriately.
(DrMcSherry> Try to bring all of your medications each visit and have a nurse or the doctor or nurse practitioner review the medications with you.
(icnmgrjill) Cabby asks.. "Do patients totally stop sex to avoid flare ups?"
(DrMcSherry) This is a very difficult topic between couples. There must be open communication between couples and there are many ways to please a partner. (Click here for the ICN's 15 Rules for an Intimate Relationship.)
(icnmgrjill) Our next question is from Sharon. She says that she just had a hydrodistention and a chlorpactin treatment three weeks ago and that the pain has been unrelenting since. She says that she wished that she had not had the chlorpactin and asks how long will the symptoms last and what suggestions you have for settling the pain down?
(DrMcSherry) I am not able to answer very well because I have not seen chlorpactin used in many years. I hope your doctor has some other treatments to help the pain caused by the chlorpactin and/or you may want a second opinion. You may also benefit from a washout of the bladder with a non-inflammatory mix or aloe vera solution. I have been getting some good result with aloe vera and also aloe vera capsules.
(icnmgrjill) I think that I'll just add here that chlorpactin is an old school approach to IC and is not usually done by urologists today. Most urogynecologists prefer "less damaging" treatments. You may also want to purchase the IC Survival Guide by Robert Moldwin, MD, which has an excellent discussion of the many IC treatments AND pain management strategies for IC. It is currently available for sale in the ICN marketplace.
(icnmgrjill) Allen asks "Would silver nitrate help IC?"
(DrMcSherry) Again that is an old treatment and not frequently used anymore because it didn't seem to help IC patients.
(icnmgrjill) Linda asks... Do vitamins negatively affect IC?
(DrMcSherry) I try to get my patients to take a multivitamin if it does not cause a dietary flare. There seem to be many patients who can tolerate a vitamin but others who can't. If you are on a restricted diet you need some type of supplements, especially magnesium, calcium and others. So try to find something you can take.
(icnmgrjill) I should have asked this question first... so let's ask it now. What's your first line treatment for IC?
(DrMcSherry) #1. Listening to my patients. We often use urised, imipramine or elavil at night, elmiron and bladder instillations. We have about 90% success rate with that.
(icnmgrjill) What bladder instillations do you most frequently use?
(DrMcSherry) We use one of three: a non-inflammatory mixture, a DMSO cocktail or the aloe vera.
(icnmgrjill) Missy asks "I just had a Medtronic Interstim test and it was a failure because the wire pulled out the first day. It was also very painful. I had back pain for months afterwards. Do you feel that this is a successful way of treating IC? or is it still too experimental?
(DrMcSherry) I feel it is still experimental and do not currently recommend it for my patients.
(icnmgrjill) Interstim is NOT FDA approved for IC. You can learn much more about this very controversial treatment in our handbook online and in four message boards. Suffice it to say that if this is recommended to you, you must research it carefully. Talk with patients who have had successes AND failures. Carefully review it with your doctor. It is NOT a first line treatment for IC.. but should only be considered after every other treatment has been explored.
(icnmgrjill) Susan asks "I've been a pain patient for some time but my symptoms and pain are very well controlled. It breaks my heart to see patients in pain and sleep deprived without proper care. This is akin to torture. Why would a doctor want this for his patients?"
(DrMcSherry) One of the most difficult issues doctors face is how to deal with chronic pain. Unfortunately, some people do abuse pain meds but most doctors realize that is not the problem in chronic pain patients and that sometime narcotics need to be used. However, it is important to make sure your doctor tries all the non-narcotic meds such as Neurontin, Ultram, Celebrex, Vioxx and then add a low dose narcotic. Also, don't forget that many antidepressants and some other meds have a pain relieving effect also.
(icnmgrjill) Patricia asks "I've been diagnosed with IC, fibromyalgia, rheumatoid arthritis and a few other autoimmune diseases. Now, I'm confused. Which disorder should be treated first?" She would also like to know if most IC patients have been sick all of their lives like her.
(DrMcSherry) Actually many of the medications used for IC are used for the other diseases. I would ask the urologist and the rheumatologist to each treat their disease but make sure you check the meds with the other doctor. I think you can get relief from both. Don't forget that pain clinics and pelvic floor rehab specialists can usually deal with many of those diseases also. I do think many patients have symptoms of IC for many years and don't seek help.
(icnmgrjill) Irma asks "My husband has been taking Elmiron for close to a year but he still has intense pain. He is on coumadin and is limited to the use of pain killers. Do you have any suggestions for him?"
(DrMcSherry) Aspirin is in many pain meds and can never be taken with Coumadin but there are many pain meds that do not contain aspirin, such as Ultram, Tylenol, Neurontin, Vicoden, Percocet and more.
(icnmgrjill) Francine asks "I've just been diagnosed with IC and we discovered that I also have spina bifida in the last three of my vertabrae. Should I have a spinal work up???"
(DrMcSherry) Everyone with Spina Bifida should have an MRI of the spine because they can have a "tethered cord." This person may have IC but also may have a neurogenic bladder. I would recommend a complete work up of the spine and the bladder.
(icnmgrjill) Erie asks "My husband is frequently in New Orleans and I haven't gone with him because of my IC. If I had bad flare. would you possibly see me?"
(DrMcSherry) How can you stay away from our great town! I am more than willing to fit you in. I have a wonderful nurse practitioner who sees most of my IC patients with me and all of my staff would be happy to see any new IC patients.
(icnmgrjill) Our last question is from Judy. She says that she's had IC for 16 years and is having trouble sleeping due to bladder pain. Do you have any suggestions?
(DrMcSherry) I usually start with Imipramine or Elavil and increase the dose if needed. Librax also works well, and neurontin makes patients sleepy, or atarax .
(icnmgrjill) Sonja says "I have so many questions... is there a connection between IC and bowel problems?"
(DrMcSherry) IC should be called pelvic pain syndrome. The bladder, urethral area, vaginal and rectal areas seem to cause similar symptoms. This is one of the main reasons the patients should consider seeing a pelvic floor specialist for help. Yes, IC patients often experience Irritable Bowel Syndrome and/or constipation (from medications).
(icnmgrjill) Linda asks "Can antibiotics cause an IC flare. Are there any that are recommended for IC patients?"
(DrMcSherry) I think antibiotics and other meds can cause IC flares but it seems very individualized from person to person. I usually try to use Macrodantin.
(icnmgrjill) Last question - How can we find a female urologist to see and are more females entering urology or is it still an old boys club??
(DrMcSherry) There are a few more entering urology but not enough to make a big difference anytime soon. Mostly I would use the ICN site to locate a doctor interested in IC but also consider uro-gynecologists as a source of treatment for IC because many of the uro-gynecologists are interested in treating IC patients and don't forget that many nurse practitioners are female and want to specialize in women's health, including IC.
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Susan McSherry, MD
4429 Clare St., Suite 600
New Orleans, LA 70115
Books & Resources That You can Purchase:
Patient to Patient: Managing IC & Related Conditions By Gaye & Andrew Sandler
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers
Group Discounts Available for purchases of 5 or more!
The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider.
© 2001, The IC Network, All Rights Reserved.
This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Susan McSherryand Jill Osborne. For additional use, please contact the ICN at (707)538-9442.