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Pain Pathways Facebook chat Transcript: Dr. Elliot Lander & Karen Liberi, MS, MPT, WCS

8/11/2018

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Understanding Chronic Pelvic Pain


Transcripts highlights from Facebook chathosted by Dr. Lander and Karen Liberi, MS, MPT, WCS on November 6, 2014
Welcome! Thank you for joining us today for “Women and Pain: Pelvic Issues Including Chronic Pain Experienced in the Reproductive Region”. This Facebook chat will be hosted by Dr. Elliot Lander and Karen Liberi of Bridge for Pelvic Pain and will cover topics such as:    What is pelvic inflammatory disease?

- Various causes of pelvic pain including IBS, urinary tract infections, Interstitial Cystitis

- Pelvic conditions, such as pelvic organ prolapse

- Pain during sexual intercourse

- Treatments for pelvic pain

- And more
Dr. Lander has served as Chief of Urology at Eisenhower Medical Center and Chief of Surgery at John F. Kennedy Hospital. He has been on staff at Eisenhower Medical Center for eighteen years and is also an Expert Reviewer in Urology for the California Medical Board.






Karen Liberi is one of only 150 physical therapists in the United States with the designation of Women’s Health Clinical Specialists. She is committed to educating health care providers and community members alike about the importance of addressing the often neglected area of the body between the belly button and the upper thighs.











Now, please join us in welcoming Dr. Lander and Ms. Liberi!

Dr. Lander: Hello, this is Dr. Lander, happy to be here.

Karen Liberi: Thank you so much for inviting me to this chat. I am very excited to be here

Reader: "Can Botox injections help with pain I bladder or PFD/?"

Dr. Lander: Botox is primarily for overactive bladder but some patients report improvement in pain.

Reader: My husband and I both have IC and severe pelvic pain, but doctors keep putting us off. Prostate issues are our concern.

Karen Liberi: If your husband has non-bacterial prostatitis, then physical therapy can be useful in minimizing the tension surrounding the prostate to minimize his pain. Relaxation breathing for both of you for belly expansion and pelvic floor relaxation can take some tension away from the bladder to help "take the edge off." One really great resource can be Dustienne Miller's Yoga for Pelvic Pain to allow for relaxation and quieting our "fight or flight" nervous system to assist with managing your pain.

Link for book: www.amazon.com/Your-Pace-Yoga-Relieving-Pelvic/dp/B0076Z4BBG

Reader: I think the reason people use the term "down there" is that it's so hard to even determine where your pain is actually coming from. Is it urological, vaginal, the bladder, the stomach? Where does one start when beginning to deal with pain in this generalized region?

Karen Liberi: It can be difficult as there are urologists, gynecologists, colo-rectal doctors. I think that an urogynecologist would be a good start as they can address the various components of "pain down there"

Reader: Seven years ago I had a colposcopy done after they found a possibility of precancerous cells. It came back negative. Since that procedure, I have had monthly UTIs, bladder infections and rarely but a few yeast infections. I am 25 now and unfortunately my conditions have worsened. I am afraid to go pee, because I'm afraid to get the UTI feeling and I can’t have sex because my bladder is in constant pain, which hurts more during sex. It’s a terrible thing to go through with my soon to be husband. I have become depressed over this because my sex life and daily lifestyle used to be normal. I have seen urologist and OB-GYNs, and my primary care. One thinks I have IC, but is not 100% certain. What do you think it could be or what should I do?

Karen Liberi: Have your bladder infections been confirmed? Have you had a "work up" for IC? UTI feeling can come from muscular tension around the urethra? Has your doctor tried you on Pyridium (takes away urethral pain if pain is coming from the urethra)? If you feel you can’t have sex, this may be related to "anticipatory gripping reflex" as your muscles are tightening in anticipation of pain. There are positions to avoid deeper penetration to minimize pressure and pain at the bladder. I would recommend seeing a women's health physical therapist to help you navigate what is happening with you. Here is a link to help you find one. There is a good book that addresses how your pelvic pain impacts your relationship, Secret Suffering. Also, Pelvic Pain Solutions actually has a heating pad that you CAN wear around town. Hopefully, these suggestions can help you get started on a successful path of healing for you!

Dr. Lander: You need a good urological evaluation including physical exam and cystoscopy to check the integrity of the bladder lining. You need to find out if you have positive cultures with your UTIs or are you just feeling like it’s a UTI, which may be the beginnings of IC. Ask your urologist about a low dose suppressive antibiotic for a three- to six-month period.

Link shared for heating pad: http://pelvicpainsolutions.com/cart/

Link for book: ‪http://www.amazon.com/Secret-Suffering.../dp/0313359210

Reader: Can pelvic dysfunction masquerade as sacroiliac joint pain...radiating across the buttocks? Do you have any recommendations for physical therapists and pelvic pain departments in North Carolina?

Dr. Lander: Some pelvic pain is felt in the back but it’s usually part of a pain spectrum that extends to other areas as well. Isolated sacro-iliac pain can be many things including arthritis, certain auto-immune conditions, muscle spasm, disk pain, etc. Some patients are responding to BOTOX injections into the bladder wall. They can be performed in the office under local anesthesia or under sedation. Safety appears to be reasonable but some patients have difficulty voiding afterwards which is usually temporary.

Links shared: ‪http://www.carolinashealthcare.org/cmc-mercy-pelvic-health

Reader: I have been diagnosis with Pelvic Floor Dysfunction in which I have a lot of pelvic pain. The worst pain for me to deal with is a spasm type pain that comes from the vagina area to my labia minora which causes it to swell up and has caused it to enlarge on the right side. Is this typical of pelvic pain? I also get a lot of UTI. I have went to P.T. and it has helped but not with the labia pain that much. There are times I feel like I have been in a car wreck and the pelvis was damaged the most. Another question is-- can a herniate disc that is pressing on nerves of the L4 and L5 cause pelvic pain? I have pretty much become a invalid since June the 16 when this all begun in a blink of an eye.

Dr. Lander: The UTI may not be related to the pelvic pain. Those require a formal workup including cystoscopy and possible imaging, and urine testing. The pudendal nerve has a branch that innervates the labia and you may have damage on the right side. Your physician should be able to evaluate that with MRI and physical exam. Karen can discuss many interventions that are effective for pelvic floor dysfunction.

Reader: I have been diagnosis with Pelvic Floor Dysfunction in which I have a lot of pelvic pain. The worst pain for me to deal with is a spasm type pain that comes from the vagina area to my labia minora which causes it to swell up and has caused it to enlarge on the right side. Is this typical of pelvic pain? I also get a lot of UTI. I have went to P.T. and it has helped but not with the labia pain that much. There are times I feel like I have been in a car wreck and the pelvis was damaged the most. Another question is-- can a herniate disc that is pressing on nerves of the L4 and L5 cause pelvic pain? I have pretty much become a invalid since June the 16 when this all begun in a blink of an eye.

Karen Liberi: the swelling may be coming from a lymphatic blockage, this is not typical, but certainly there can be a reasonable explanation for this. Sometimes if manual lymphatic drainage is added to the PT treatment - this may be helpful for the labia as well. Usually S234 is where pain to the pelvic floor comes from (pudendal nerve)

PainPathways Magazine: This is a resource from Dr. Lander that may be helpful: http://www.painpathways.org/wp-content/uploads/2014/11/ic-optimist-magazine-2014.pdf

Reader: Hi my I have a mass the size of an orange and growing I've Benn to two obgyn and two cancer drs the mass is on my overies know one wants to do surgery because I'm overweight one cancer dr said he'd do surgery if I agreed to have gastric bypass surgery first I'm in a lot of pain and I'm at the end of my rope

Dr. Lander: Your experts apparently have concurred with resection of the mass but sometimes physicians will defer surgery that is not emergent if a person's body mass index is high since surgical risk goes up dramatically in such cases. Make sure your surgeon is well versed in the latest laparoscopic techniques.

Reader: Can IC/PFD cause erectile issues in men? and can PT help, or other treatments help

Dr. Lander: from Karen: PFD can absolutely cause erectile issues in men. PT can be very valuable in helping this. Here is a resource you can use to find a pelvic floor therapist. http://www.womenshealthapta.org/pt-locator/
http://hermanwallace.com/practitioner-directory

Dr. Lander: I've been able to maintain my IC with water and diet, I have minimal pain compared to others I've read about, so I feel really fortunate. Now my 26 year old son is having issues. Do you think IC can be hereditary our had there been any studies in that area?

Dr. Lander: Studies of mothers, daughters, and twins who have IC suggest a hereditary risk factor but no specific gene has been identified. Your son will need a full work-up to evaluate other causes of pelvic pain but men do get IC and his physician should look specifically for it (the ratio of women to men with IC is approx 10 to 1).

Reader: Where is a good place to start when trying to get pelvic pain diagnosed?

Karen Liberi: An urogynecologist would be a great place to start

Reader: Since no one can pinpoint exactly what cause the brain to have nerve ending issues that contribute to chronic pain----- is it possible for the brain/nerves or whatever to heal and the chronic pain STOP?

Karen Liberi: There is tremendous research coming out of Australia on the brain's role in chronic pelvic pain. Look into the NOI group as you will find lots of great information.
There is a great new book called why pelvic pain hurts which discusses the brain's role in chronic pain. You can also Google Lorimer Mosely and pain videos as these can be valuable to you as well.

Here is a link to videos that you may find helpful: https://www.youtube.com/watch?v=4b8oB757DKc

Reader: A doctor's procedure gave me severe pelvic pain for about a decade. It finally lessened - and I chose to never have a pap smear again due to the severe pain the procedure induced. In January, my regular gyno tried to give me a pap and by the time I yelled "bloody murder", the damage had been done - and I was back to square one. I won't see a doctor or PT, but have chosen self-care. I'm slowly improving. Any self-care ideas or advice?

Dr. Lander: This sounds like the procedure resulted in a flare of pain which may be related to pelvic floor spasm. Karen may be helpful here.

‪PainPathways Magazine: A qualified PT could be really helpful for you! Here are the links to find a good PT:

‪http://www.womenshealthapta.org/pt-locator/
‪http://hermanwallace.com/practitioner-directory

‪PainPathways Magazine: also yoga for pelvic floor relaxation can be helpful:
‪www.yourpaceyoga.com

Reader: A doctor's procedure gave me severe pelvic pain for about a decade. It finally lessened - and I chose to never have a pap smear again due to the severe pain the procedure induced. In January, my regular gyno tried to give me a pap and by the time I yelled "bloody murder", the damage had been done - and I was back to square one. I won't see a doctor or PT, but have chosen self-care. I'm slowly improving. Any self-care ideas or advice?

Dr. Lander: This sounds like the procedure resulted in a flare of pain which may be related to pelvic floor spasm. Karen may be helpful here.

Reader: I've been told I may have interstitial cystitis. What is it and what are the treatments? Have there been any recent discoveries or treatments?

Karen Liberi: A great website for IC - http://www.ic-network.com/

Reader: What area of IC is helping the most in your stem cell therapy, pain, burning, frequency, etc... Also many women who have tried stem cell therapy at your clinic are also doing other treatments simultaneously. If this is the case, how does one really know what therapy is working??

Dr. Lander: Some patients have better response to pain but overall the bladder symptoms do the best. Most of our patients have tried everything they know but sometimes it is difficult to sort out what factors are most beneficial.

PainPathways Magazine: A great website resource: http://paindownthere.com/


PainPathways Magazine: ‪A link to the Ending
Female Pain book: ‪http://www.endingfemalepain.com/

PainPathways Magazine: A link to the Secret Suffering book: ‪http://www.amazon.com/Secret-Suffering.../dp/0313359210

Reader: I've had the IC diagnosis six months ago, although I have treated urinary infections almost 20 years. I have done lots of exams and after the third specialist I consulted, I have had the following advice: to urinate every two hours, no diet, no medications, but I keep feeling horrible pain. I almost have no sexual relationship, and I am depressed. I don't know what to do, since I've consulted the major specialists on this area in Brazil. I really want to know a way to have my life back.

Karen Liberi: Have these bladder infections have been confirmed? Sometimes IC or urethral syndrome can mimic a urinary tract infection; however, there is no sign of an infection upon testing. Knowing more about the exams performed would help me better to help you move in the right direction for help. Knowing specifically WHERE your pain is would be helpful. (Lower, central abdomen, urethra and/or vaginal) Understanding your pain better can help to feel less depressed about it. Depending on where the pain is coming from, strategies can be used to help to return to sex.

Resources such as bridge for pelvic pain, Wendy Cohan's book The Better Bladder Book, the soon to be released DVD Healing the Pain “Down There” as well as Isa Herrera's book Ending Female Pain could all be good starts in getting some answers and sharing the information you learn with your doctors. In terms of the dynamics of your relationship, the book Secret Suffering may be useful for you as well. Hope this helps to give you some direction on your journey to feeling better!

Reader: I have PFD and IC and Fibro I am now hurting with siatiac nerve pain. It goes into the buttock-area and down the back of my one leg. What will help this?

Karen Liberi: For the sciatica - generally a piriformis stretch can be helpful and sometimes lumbar extension exercises depending on where the nerve is being irritated along its path.

Reader: Dr. Lander: I had a full hysterectomy over 10 years ago. I have never had a pelvic exam since. Is there a need for one after a hysterectomy?

Dr. Lander: This summer, The American College of Physicians (the group that represents INTERNISTS, not GYNECOLOGISTS) published a recommendation stating that non-pregnant women who do not have specific complaints need not have a gynecologic exam.The American Congress of obstetricians and gynecologists still recommend yearly exams. The performance of a physical examination is a key part of an annual health assessment visit, and the components of that examination may vary depending on the patient’s age, risk factors, and physician preference. If the patient had a total hysterectomy and bilateral oophorectomy, some physicians may omit the exam.

Reader: I am dealing with constant chronic pain and extreme pressure in the lower pubic mons above the pubis symphysis area that does not respond to internal pelvic therapy release of trigger points in the vagina and levator ani. I do have IC. What are the options for dealing with pelvic neuralgia and nerve pain? Dr. Weiss up in San Francisco has a pelvic pain center that exclusively deals just with pelvic pain. He believes pudendal nerve neuralgia and PNE are frequently undiagnosed conditions. Most docs seem to group pelvic pain under IC referred pain. Do you agree? Since I live in San Diego, are there are docs in the Southern CA area that do trigger point injections and other modalities to deal with non specific pelvic pain?

Dr. Lander: I do not have a specific referral but you are correct to pursue pudendal neuralgia with trigger point injections since it may not just be IC referred pain.

Reader: I'm a 28 year old female whose had fibromyalgia, weight gain, and severe IBS the last 10 years. I thought my pelvic pain had to do with my monthly cycle, but an entire week after my cycle ended, I was in a lot of lower abdominal pain.

Karen Liberi: There are so many contributing factors to abdominal pain including hormonal influences (i.e surrounding your cycle) digestive influences as well as bladder influences and myofascial/muscular pain. Finding a good doctor and Physical therapist can help you further determine the cause of your pain and therefore set you on a plan for improving your pain. There are a couple of books called Heal Pelvic Pain and ending female pain which have good educational components as well as exercises that can be helpful. Relaxation breathing and Iyengar based yoga can be helpful.

Here is a link to a great yoga DVD for pelvic pain: www.yourpaceyoga.com

Reader: I started menstruating at age og 12, and since then I go through sever pain during and before too . Now at 41 situation has been improved but sometimes it causes unbearable pain. i have defected spine since birth , at L5 , I do not remember medical term. and arthritis too. After my son's birth through caesarian section, i could not stand for long and had sever pain all the time in pelvic area .many therapies were applied , in last I used homeopathy, I feel better but still pron to either infection or have PMS and period pain . any alternate therapy would you suggest

Karen Liberi: a good resource for you may be "The hormone cure" which may assist with pain stemming from hormonal fluctuations and will give you a direction on where to go to help with your pain.

Reader: How to test the pelvic floor for hyper/hypo tonicity - for women who do not have access to a pelvic floor specialist. Are there any external palpation techniques that exercise specialist (pre/postnatal) can teach our clients? Best exercises for hypotonicity? Best exercises for hypertonicity? How surrounding muscles might play a part in pelvic pain? What muscles should we focus on in regards to myofascial release for both hypo/hyper?

Karen Liberi: I would refer to the reference
http://www.amazon.com/Evidence-Based-Physical-Therapy-Pelvic-Floor/dp/0443101469

Reader: Can you please explain sensory pain and why sounds and vibrations hurt? Also, the delayed pain response...

Karen Liberi: The NOI group has so many great answers to this question . . I will refer you there.

Reader: I've been getting Botox for about a year now. Every 3m. 1st couple of times were just in the office (excruciating) I had both bladder & pelvic floor done.
After those initial injections I've been in retention ever since. I go to PT once a week and do gentle yoga. My concern is what's the next step if I cannot void on my own ever again? My uro-gynecologist will not do my bladder again. Only pelvic floor. I've gotten great relief so it's worth it to me to cath all the time. I just wonder if there's something I can do to get back to urinating on my own. Thanks!

Dr. Lander: It is very rare to be in retention for up to a year. Botox has occasionally been known to affect nerves for 6 to 8 months. Please ask your doctor to perform formal urodynamic studies to assess your nerves and muscles of the bladder and it may be prudent to not obtain any more botox until this is resolved.
Reader: I had a cystoscopy done a few weeks ago and the Dr said my bladder could only hold 200 cc and then my blood vessels would start bursting he said that it was severe! What are your thoughts on that?

Dr. Lander: I don't know your history but it sounds like your doctor was working you up for IC. IC can result in scarring and loss of bladder compliance.

Reader: 7 years ago I had a colposcopy done after they found a possibility of pre cancerous cells, it came back negative. Since that procedure, i have had monthly UTIS, bladder infections and rarely but a few yeast infections. I am 25 now and unfortunately my conditions have worsen. I am afraid to go pee, because I'm afraid to get the UTI feeling and i cant have sex because my bladder is in constant pain which hurts more during sex. Its a terrible thing to go through with my soon to be husband. I have become depressed over this because my sex life and daily lifestyle used to be normal. ..i have seen urologist and obgyns, and my primary care. One thinks I have IC but is not 100% certain. The pain in my bladder has left for a few days now, however I still can't have sex and it's now left me in never wanting to have sex, i lost that feeling of wanting it...sadly I feel I'm too young for this. What do you think it could be or what should I do? I suffer from UTI(s), bladder infections and now major bladder pain. Heating pad helps but i cant wear it around town... i now live my life in fear of that area and carry around UTI medication just in case, would love for everything to disappear

Dr. Lander: One of the problems with recurrent uti's is that each infection makes the bladder more susceptible to another infection often leading to non-stop problems. We occasionally use chronic suppression antibiotics. Certain antibiotics are less associated with yeast infections and are safe in low doses over extended time periods. Ask your urologist about that.

PainPathways Magazine: Another great website resource for women: http://www.instituteforwomeninpain.com/

Reader: I've been told I may have interstitial cystitis. What is it and what are the treatments? Have there been any recent discoveries or treatments?
Dr. Lander: Learn about pentosan in liposomes for instillation. http://www.painpathways.org/wp-content/uploads/2014/11/ajceu-pentosan.pdf

Reader: "Will cannibus , in pill form, be allowed for IC pain."

Dr. Lander: there are some derivatives of cannabis that have few "cannabis" effects but more pain relief effects. They are being studied now.

Reader: Does a women's age affect the success of the stem cell therapy for IC. Just concerned about the quantity of stem cells that you are able to obtain based on one's age?

Dr. Lander: If you use stem cells from fat, they do not degrade in proliferation and differentiation potential (quality) with age or chronic disease like the bone marrow derived stem cells.

Reader: I have IC and many other problems. I have many female surgeries. Does all that weaken the bladder? Plus the scar tissue I have. (I've had a hysterectomy due to endo).

Karen Liberi: You would definitely benefit from a pelvic floor physical therapy evaluation. Here are some websites to find a therapist near you.
http://www.womenshealthapta.org/pt-locator/
http://hermanwallace.com/practitioner-directory

Scar tissue can definitely impact the strength of the pelvic floor and support of the bladder.

The tension you hold from the pain from the IC can also weaken your muscles and decrease support of your bladder.


Reader: Dr. Lander, What area of IC is helping the most in your stem cell therapy, pain, burning, frequency, etc... Also many women who have tried stem cell therapy at your clinic are also doing other treatments simultaneously. If this is the case, how does one really know what therapy is working??

Dr. Lander: Some patients have better response to pain but overall the bladder symptoms do the best. Most of our patients have tried everything they know but sometimes it is difficult to sort out what factors are most beneficial.

Reader: Dr. Lander, I had a full hysterectomy over 10 years ago. I have never had a pelvic exam since. Is there a need for one after a hysterectomy?

Dr. Lander: This summer, The American College of Physicians (the group that represents INTERNISTS, not GYNECOLOGISTS) published a recommendation stating that non-pregnant women who do not have specific complaints need not have a gynecologic exam.The American Congress of obstetricians and gynecologists still recommend yearly exams. The performance of a physical examination is a key part of an annual health assessment visit, and the components of that examination may vary depending on the patient’s age, risk factors, and physician preference. If the patient had a total hysterectomy and bilateral oophorectomy, some physicians may omit the exam.

Reader: I am dealing with constant chronic pain and extreme pressure in the lower pubic mons above the pubis symphysis area that does not respond to internal pelvic therapy release of trigger points in the vagina and levator ani. I do have IC. What are the options for dealing with pelvic neuralgia and nerve pain? Dr. Weiss up in San Francisco has a pelvic pain center that exclusively deals just with pelvic pain. He believes pudendal nerve neuralgia and PNE are frequently undiagnosed conditions. Most docs seem to group pelvic pain under IC referred pain. Do you agree? Since I live in San Diego, are there are docs in the Southern CA area that do trigger point injections and other modalities to deal with non specific pelvic pain?

Dr. Lander: I do not have a specific referral but you are correct to pursue pudendal neuralgia with trigger point injections since it may not just be IC referred pain.

Reader: "Will cannibus , in pill form, be allowed for IC pain."

Dr. Lander: there are some derivatives of cannabis that have few "cannabis" effects but more pain relief effects. They are being studied now.

PainPathways Magazine: Everyone, our time is unfortunately up. We appreciate all of your thoughtful questions and our experts’ informative responses. This has been a great dialogue, and we are excited to have another Facebook chat soon!

PainPathways Magazine: This is our last for 2014 - please let us know what topics you would be interested in chatting about next year!

PainPathways Magazine: This is Amy North, editor of PainPathways Magazine. On behalf of Dr. Richard Rauck, we’d like to thank Dr. Lander, Karen Liberi and all those who participated in tonight’s chat! We are excited to be offering this great forum for information and inspiration. We’ll post transcripts of the chat to our website within a week.

Have a good night everyone!

Professional and Individual subscriptions to
PainPathways Magazine
are available at www.painpathways.org.


All information provided is for educational purposes only. Neither PainPathways nor their Facebook Chat hosts are
responsible for a medical diagnosis. Individuals should seek a physician for evaluation and personalized treatment plan.

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Interview with Dr. Robert Echenberg about IC/Chronic Pelvic Pain

6/18/2018

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Dr. Robert Echenberg did his undergraduate work at Brown University, medical training at Jefferson Medical College, and his residency in Obstetrics and Gynecology at the University of Michigan Medical Center.  He is currently the founder and director of The Institute for Women in Pain based in Bethlehem, PA and the co-author of the book Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships, which features on his web site both an endorsement from and an audio clip from Jill Osborne, founder and director of the IC (Interstitial Cystitis) Network.



Carin Willis: Good afternoon and thanks again for your time-I am excited to learn more about your background and your current work helping women with chronic pain issues.

Dr. Echenberg: Thank you, Carin. I would like to begin by getting a little background on your own personal story of pain and IC.

Carin Willis: In 2004, when my story with IC begins, I was pushing myself too hard with full-time work and college schedule and I began to exhibit symptoms of what I would later find out to be IC. I also had IBS as a child and some unresolved issues stemming from my childhood. I began to have severe chronic pain in my bladder and vagina. When my IC was at its worst I would rate my level of pain and its affect on my quality of life to be at 7-9 on a scale of 1-10. In addition to IC I had severe food and chemical sensitivities, migraines, vulvodynia and dyspareunia.

Dr. Echenberg: I am so sorry to hear it, Carin. Do you mind sharing with me how you were treated by doctors and the medical community?

Carin Willis: I did have some compassionate doctors, the most caring being my OB/GYN, but for the most part I was bounced around and around and went through many of the typical tests to finally rule out all other diagnoses. The second urologist I saw wanted to give me the potassium sensitivity test to 'prove' that I had IC but I had read and researched too much about this test, so I refused having it done.

Dr. Echenberg: Carin, unfortunately your story with IC is a common one and one that I trust will be gradually changing. Did you find that any of the medications or recommended treatments helped with your IC? For instance, did anyone suggest pelvic floor retraining exercises?

Carin Willis: I was initially given medication for overactive bladder and medication for depression, because in 2005, I was lead to believe that those were the two main pill-form treatments for IC. I did decline any bladder instillations recommended by the urologist-again out of reading too much about the ineffectiveness of those types of therapy at the time. I felt left alone by the medical community after refusing their drug treatments and bladder instillations and no one even mentioned trying pelvic floor retraining exercises. The question I often asked the doctors and myself was how I could have developed a disease as painful and devastating as IC- knowing that I was not born with it! I felt as if I did not go along with the doctors’ treatments that I was alone to figure out my own path to well-being.

Dr. Echenberg: Again, I am so sorry to hear that most of the doctors you came into contact with left you feeling alone and that your pain was invalidated. I am not sure how much you have read about my clinic-but every day I work with women in severe chronic pain who share similar stories with us. Often they have travelled far and wide to find help and have spent great sums of money to do so – and still have not been helped. Nonetheless through your research and your own journey back to health you have realized that there are doctors and health care practitioners who have a commitment to help women with chronic pain. You also touch on an interesting key point that I commonly point out to my own patients-that often the chronic pain that develops in women - develops gradually over a period of time and is not something that they are born with. Can you share with me some of the treatments that you utilized to get to the place that you are at today? How would you rate your pain level now?

Carin Willis: I feel that the best approach to treating IC or any chronic pain disease is through a combination of both Eastern (holistic) and Western medicine. I used the IC elimination diet, two TCM (Traditional Chinese Medicine) doctors, acupuncture, natural anti-fungals with high doses of acidophilus, as well as Reiki, meditation and yoga to improve and eventually remove most of my IC and related conditions. I also finally sought out some much needed emotional counseling as I also believe in the mind/body connection.

Dr. Echenberg: In general I would agree with you, Carin, and many of the women who come to my clinic tell me they want to be treated 100% “naturally” but usually the pain levels are so severe that I initially recommend more aggressive techniques for pain management in order to begin turning down the dial on their pain.

We have also found at our “Institute for Women in Pain” that the best approach to chronic pain is taking an integrative path to healing so we have connected with doctors and a variety of other health care professionals in order to begin to effectively manage the pain associated with their diagnosis of IC.

Now I would like to give you more of an overview about pelvic pain and a little bit more about my background, and how I have changed my focus to helping women with chronic pain issues. A recent article by Dr. Fred Howard, Chairman of the International Pelvic Pain Society, points out that at least 85% of all women with otherwise unexplained chronic pain in the pelvic region have the urinary bladder as at least one of the most significant “triggers” of their pain.

The definition of chronic pelvic pain (CPP) is any type of persistent pain or discomfort between the “belly button” and mid-thigh that lasts for at least beyond 3-6 months. In the medical community we should be separating “acute” pain from “chronic” pain because “acute” pain is actually necessary for our survival. If we did not feel ourselves stepping on a nail, breaking our leg, or having a heart attack, we would be in great danger. However, once all of those “injuries” are long since healed, “chronic” pain sometimes takes over and our nervous system and muscular systems “remember” all of the previous traumas we have experienced (physical, emotional and otherwise). All of this information is now exploding out of the pain research world over the last 10-15 years. Over the course of my 30+ years as an Ob/Gyn physician, I now realize that I knew none of this type of information which is now linking previous traumas to common ongoing functional disorders such as IC, IBS, endometriosis, vulvodynia, vulvar vestibulitis, pudendal neuralgia, etc. and that they are all common components of CPP.


I joke with patients that I actually won the anatomy prize in medical school but then never needed to remember that there were muscles, nerves and ligaments in the pelvis, and that these structures are commonly the cause of the immediate pain the individual is experiencing. So in our program now, I introduce these important relationships to each new patient. I admit, that over the course of those 30 years, I often was not asking the right questions and did not have the appropriate knowledge base and “model” in my medical thinking to best take care of their CPP.

Carin Willis: Is it an issue of medical schools and residency programs not teaching about these chronic pain issues?

Dr. Echenberg: Absolutely, that is a significant problem lacking in most programs. I recently spoke to a class of medical students about CPP and it was quite clear that these concepts were new to them. The basic science in pain research and certainly in pelvic pain research usually does take a great deal of time filtering down to the day to day care of patients. I am afraid that it will still be a number of years until more physicians will have the overall knowledge base to care for these common pain disorders in women. One of my biggest goals is to help speed up that process and also to alert younger women and girls about the combination of symptoms that could more easily be diagnosed and treated if they were aware of “connecting the dots” earlier – often even in their teenage years.


Back in 2001, I was asked to start a program for the treatment of CPP that would primarily be non-surgical. Many young women were receiving multiple invasive diagnostic procedures and surgeries for pain and either “nothing” was being found to explain their pain or often the wrong things were seen that were not necessarily the reasons for the pain. You commonly cannot view IC or other dysfunctional pelvic pain issues using CAT scans, Ultrasounds, MRIs, and various surgeries and scopes. Consequently, many patients suffering with sometimes extreme losses in the quality of their lives are accused of being “drug seekers” or that the pain must “be in their heads” because none of the tests adequately “explain the pain”. Doctors generally need a test to be positive before diagnosing most diseases. There is a great need for a simple urine test to diagnose IC so that more docs would believe that the illness even exists. Fortunately there are many researchers out there who are in the process of developing such a test, but it may still take some time to be on the market.


Dr. Lowell Parsons is a prominent Urologist in California who has been researching IC for over 20 years. When I first heard Dr. Parsons talk about IC back in the 1990s, I didn’t pay much attention, especially when he said at a large Ob/Gyn symposium that even the secretaries at his front desk could diagnose IC over the phone. I now know that that is not only possible but my own office staff often is able to do so. What he said then and what I believe now is that the combination of urinary frequency, urgency and any type of persistent pelvic pain that results in a patient seeking one or more specialists and not getting a diagnosis, had to be IC until proven otherwise. When those sets of symptoms hamper a person’s life, and their urine cultures are negative and the drugs for “overactive bladder” don’t work, I would challenge any physician to explain that set of facts as anything other than IC. Unfortunately, people are still being told they have a “small bladder”, that they simply are drinking too much, and that they just need to learn to live with the problem.


Tragically, what once was felt to be a rare condition, IC is now felt to affect about 16-18% of all reproductive age women in America and a growing number of men as well. That means that about 1 out of every 6 women between ages 14 and 50 have some degree of IC or “painful bladder syndrome”. That adds up to tens of millions of young women in this country who continue to suffer more and more with CPP in general. It is also estimated that 90% of all women with CPP have some degree of sexual pain (dyspareunia) as well. My own experience over the past decade confirms these unfortunate stats.


Carin Willis: Oh my goodness – those are large numbers!

Dr. Echenberg: Yes, Carin. I have just given you some very hard statistics about the numbers of women with chronic pelvic and sexual pain issues. Remember that the studies and my own experience shows also that IC is a major culprit from early on in many of these women who end up with significant pain later. Their IC symptoms may stay largely “under the radar” for quite some time when they are younger and not really become consciously upsetting until some event such as a childbirth, surgery, accident, emotional or physical trauma, etc. “throws them over the edge”.


Another interesting thing to note is that there seems to be a link to girls who participate in various sports throughout their younger years who commonly sustain multiple minor injuries (sometimes more major) and those injuries may also contribute to later nerve and muscle “pain memory”. Many coaches and trainers urge their better athletes to “stretch it out and get back in the game”, and these young women learn to “play through the pain” and later go on to learn how to live their lives through the pain including “having sex through the pain”. Recent research shows that even ankle or ACL injuries can lead to structural strains and/or injury to the pelvis later in life. Slowly over time, these collections of “good pains” (injuries sustained while having fun and doing something with ongoing passion), and “bad pains” (which can include physical, sexual and/or emotional abuse) all can contribute further to the muscle and nerve “memories” that I mentioned earlier.


These prototypes of young women who later develop chronic pelvic and sexual pain disorders include many who have developed a high pain tolerance. Often they are very strong people who after enough of these “traumas” begin to feel that their bodies are failing them and that they now have developed chronic pain issues that can become debilitating. So you were on the right track, Carin, when you realized that your chronic pelvic pain symptoms were not something you were born with, but happened after a series of traumas throughout your life, along with developing IC along the way.


Carin Willis: Wow. That is exactly the personality that most people would describe me as having and that also sounds like me with the 'high tolerance to pain' scenario. That is very interesting that a lot of us with chronic pain fit into a prototype.


Dr. Echenberg: The hope is that we can use both the statistics and the information about the prototypes in the future to provide preventative measures with girls exhibiting similar personalities with a strong drive and high pain tolerance. Of course, young people, their parents, teachers, coaches, trainers, and certainly their school nurses and private doctors need to be able to understand and diagnose illnesses like IC and IBS much earlier as well.

Carin, I wanted to ask if you had a chance to read the book that I co-authored with Susan Bilheimer called “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects their Relationships”?


Carin Willis: I have read some of the reviews and it is definitely on my 'read soon' list for IC resources!


Dr. Echenberg: I cannot go into detail about the book now but I would highly recommend it to you and anyone reaching out to you via your website. You may find it helpful and even therapeutic to realize that the women featured in my book are very similar to yourself.


Carin Willis: I am looking forward to reading it, Dr. Echenberg and I noticed that it recently came out in paperback form-do I order it through Amazon?


Dr. Echenberg: Yes, it is available through Amazon.com or you can also order it through the IC Networks website. [http://www.icnsales.com/pain-care-overcoming_pain/]


Well let's get back to our discussion about the current costs associated with women suffering from chronic pelvic pain issues. These overall costs are very high and can include multiple trips to the ER, countless trips to the doctor, not to mention the time missed from work for all of these visits. All of this, of course, comes at a significant cost to our economy, health care system and to the patients themselves. More importantly, this entire process can be extremely devastating to the women dealing with these issues in yet another way. As I said earlier, so many of our patients relate to us that they have been told, and now actually believe, that their symptoms are “all in their heads”. Many of these women are clinically depressed and anxious and even thoughts of ending their lives begin to develop. We take some pride in our program by telling our patients that at the very least we will have succeeded if we are able to keep them out of the ER, out of the Operating Room, and out of the psyche wards.


Carin Willis: Dr. Echenberg, the prevalence and severity of these health issues for women here in the US is so much larger than I even suspected. That really makes me sad for my sisters here in America, but I noticed that you served on the board of the International Pelvic Pain Society and much of my reader base includes a significant percentage of women with chronic pelvic pain issues who live in other countries. Can you please touch on what is happening as far as research and treatments for pelvic pain sufferers on an international level?

Dr. Echenberg: Over the past 10-15 years, the US has been at the forefront of research on pelvic pain issues. IC is also quite common in Japan so there has been a good deal of Japanese research on IC for some years. There is also a great deal of work going on in Europe which is reported continually through the website of the European Urological Association. As I said earlier, there currently is no simple cost effective non-invasive chemical or urine test to diagnose IC. Doctors need a test to diagnose IC more convincingly. The potassium sensitivity test and hydro distention of the bladder under anesthesia have long been used to diagnose IC but they are invasive, more expensive and can be painful to the patient.

Carin Willis: The potassium sensitivity test has always seemed a barbaric way to diagnose someone with IC or bladder issues. I think most patients and doctors would agree that there has to be a better way for reaching a diagnosis.


Dr. Echenberg: Yes, I agree, but “barbaric” may a bit of a harsh term to use for those docs who at least are trying to make a valid diagnosis, especially if otherwise they would make no diagnosis at all. I believe that the potassium sensitivity test is almost never needed since the diagnosis usually is easy enough with just getting a good history and ruling out a few things. I mentioned Dr. Parsons earlier so I would like to know if you ever heard of the PUF scale for easier diagnosis of IC which he developed over a decade ago.

Carin Willis: No I am not familiar with the term.


Dr. Echenberg: The PUF score stands for Pain/Urgency/Frequency scale, and it measures these areas by the use of a quick easy set of about 8 or 9 questions that most people can answer in just a few moments. It can be used to screen patients in any doctor’s office that sees young women on a regular basis. The PUF score was later adopted for use by the International Pelvic Pain Society and is used as part of the questionnaire that I use for every new CPP patient. Dr. Parsons initially conducted thousands of potassium sensitivity tests and his research group developed the questions on the PUF scale and a scoring system that would simply give the doctor a statistically accurate comparison of how likely the answers to those few questions would compare to the results of the potassium test. So the score on the PUF was able to positively diagnose IC and chronic pelvic pain patients without causing the patient any pain.


Carin Willis: That was an incredible connection to be able to ask some simple questions of the IC patient without inflicting any further pain on them to come to the same diagnosis. Incredible!


Dr. Echenberg: Yes it was! We are now finding that IC is the cause of some of the “old wives tales” of 'honeymoon cystitis', repetitive bladder infections (UTIs) in young women, or doctors telling patients that they were simply born with a 'small bladder.' I am sure that you noticed the lines for women's restrooms are always longer and if women actually talked with one another about some of their pelvic and bladder issues they would discover that they are not so alone with pain, frequency and urgency issues.


Another area of confusion for years has been that of the diagnoses of endometriosis and IC. In the world of CPP research, these 2 conditions are aptly called the “Evil Twins” of pelvic pain. So many young women are diagnosed early with endometriosis and are labeled with that disorder forever more. Every pelvic pain they have is blamed on the endometriosis and many of these women undergo many surgical procedures to help their pain. The problem is that IC is also so common and so often, these surgeries don’t alleviate the pain successfully and in retrospect, these women have had bladder symptoms all along. We commonly and unfortunately see this in many of our CPP patients. We sometimes see as many as 6-8 laparoscopies having been performed on women before the age of 30 and even some hysterectomies – and these women are now sitting with us and telling us that they are in the worst pain ever. Both conditions are common so it is really important for your readers to try to find practitioners who understand how to determine the differences between them.


Carin, ultimately we are a pain management center for the pelvic region and it is important to know that all the research in “chronic pain” is now showing that the “pain itself is the diagnosis”. When I treat IC, vulvodynia, sexual pain, etc. I am treating all of those as “triggers” of the pain itself.


Carin Willis: That is a very powerful statement. I hadn't thought of it quite like that before.


Dr. Echenberg: Yes, it is an important thing to note that chronic pain by itself can be its own diagnosis. When the body is subjected to chronic pain or danger signals the nervous system is in a state of hyper activity all the time. I explain this to all our patients and ask them to visualize the volume dial on a radio cranked up to 'high' and that it keeps on 'high' even after injuries are healed. They can then understand why even a small bladder cramp after drinking an acidy glass of juice, or a small bowel or uterine cramp can shoot their pain level to the ceiling. It also explains why added stress compounds the pain/danger signals and why it is so important to “turn that dial down”. We have been successful in treating patients with chronic pelvic pain by working through the central nervous system to turn down the “volume” - while also treating their “triggers” and referring almost all of them to specialized pelvic floor physical therapy. When the dial does not budge, the entire body stays in a “fight or flight” mode and makes it much harder for the spasming of the muscles and ligaments around the entire pelvis to relax. The nervous system is doing this to “protect” the individual but is really out of control in a very dysfunctional way. It is really helpful for our patients to understand these concepts in order to gain some control over their pain issues. It makes it so much easier for us to adequately treat the overall pain issue connected to their IC, IBS, endometriosis, etc. This analogy of the “dial being turned up” is beginning to explain how so many medications and other modalities such as meditation, yoga, acupuncture and even prayer actually work. It is also why the approach of integrative medicine is where we should be heading when it comes to chronic illness.


Carin Willis: So in essence the medical community has come full circle to embrace healing modalities that have been around for a long time?


Dr. Echenberg: Yes, that is a great way of seeing it. Clinical medicine is a bit behind, but at least the newest scientific studies are beginning to show us the way. I believe that in the future, chronic pain will be treated much differently by utilizing techniques to change the chemistry of the brain as well as how pain signals are processed. There is a great deal of research happening in the world of neuroscience related to chronic pain. This field of study is less than a decade old but they are making breakthroughs at a significant pace. For instance, there is a great team of doctors and scientists in Australia (www.noigroup.org) who have been conducting research educating individuals with chronic pain to retrain their brain.

Carin Willis: Are you referring to brain neuroplasticity?


Dr. Echenberg: Yes that is exactly the science behind it - that our brains are not the immovable structures that we once thought… that we can, in essence, retrain our brains to understand the difference between danger signals and pain signals and to not have the pain switched on all the time. It is important that when we come close to touching a hot stove that we back away – we learn by experience that that is a danger signal. The so-called “neuromatrix” within the brain's cortex is where this pain memory is stored. I am very encouraged by this research and will continue to utilize as many “tools” at my disposal to help these patients with CPP “turn down their dials”.


Carin Willis: Thank you Dr. Echenberg for your time today, and for the work you do to help women who suffer from IC, and other chronic pelvic and sexual pain disorders.


Dr. Echenberg: Thank you for having me.



Information/Resources referred to throughout this interview:


http://www.instituteforwomeninpain.com/ (Dr. Echenberg's institute)

http://drparsons.ucsd.edu/default.aspx (Dr. Lowell Parsons)

http://www.noigroup.com/ (Australia researchers and their chronic pain/brain retraining)

http://www.ic-network.com/ (References and to order “Secret Suffering”)
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Interview with Dr. Matt Rosenberg about IC

6/18/2018

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Dr. Matt Rosenberg did his surgery residency at UC Irvine and did additional studies through a urology residency at Harvard. He is currently a practicing family physician and is the Director of the Mid-Michigan Health Centers in Jackson, MI with a special interest in urologic disease. Dr. Rosenberg has published numerous peer reviewed articles pertaining to Overactive Bladder (OAB) and Interstitial Cystitis (IC). His work has been instrumental in creating a faster and more effective survey for primary care doctors to diagnosis IC. Dr. Rosenberg is paid for his consulting activities on behalf of Ortho Women’s Health & Urology™.   I am grateful to both Dr. Rosenberg and to Ortho Women’s Health & Urology™ for their support and for the opportunity to have an interview with a doctor so actively involved in treating IC.


Carin Willis: Good morning Dr. Rosenberg, thank you for taking my call this morning. This interview will be posted on my IC website and blog and for full disclosure purposes I am an IC patient- I appreciate your time. Let's start out with a question: How has the criteria for diagnosing IC changed in the past decade?

Dr. Rosenberg: I was originally trained in urology and I was taught, along with all the other doctors in med school that IC was a 'wastebasket' disease. Excuse the phrasing but that is what it was called, meaning we were instructed to use that name when no other medical diagnosis presented itself. This was during the early 1990s. At the time, the medical community thought that IC only occurred for a fraction of a percentage of the general population. The truth is that IC has a prevalence as high as 4-13%. I have two large epidemiological studies showing this.

A few years ago, I was at a research meeting on OAB to talk about the algorithms that I had created to simplify the diagnosis of OAB in my office. After I presented this data I was approached by someone who said they had a challenge for me in that if I was seeing as much OAB in my primary care office, I was missing IC patients. This same person challenged me to develop a protocol for identifying the IC patient in the primary care office.

If you think about the old prevalence data out there for IC, it suggests that IC is found in less than 1% of the general population. I initially thought I'd find maybe one or two patients. We then started using the PUF questionnaire (a diagnostic questionnaire that can help identify IC patients via their symptoms) in my office. You know how long it took me to figure out I was wrong? About an hour.  All of a sudden, all of these high PUF scores came up and we thought “what the heck is going on?” I did these surveys for one year and collected information from 4,000 patients.  Almost 1,000 came in with PUF scores that were six or greater, which suggested that they could be suffering from IC. 

Carin Willis: Those numbers are huge! That is amazing work in only a year's time.

Dr. Rosenberg: Yes, the data is finally able to capture the real number of people with IC. Urologists are taught to look for Hunner's ulcers but this is not a valid way of diagnosing IC since it is a symptom based disease and the ulcers are not present often, which reminds me of the National Nurse Health Study (both 1 and 2). Are you familiar with those studies?

Carin Willis: No I am not familiar with those studies.

Dr. Rosenberg: The National Nurse Health Study presented a questionnaire to 100,000 women asking them: “Do you have IC”. I am sure that you can guess the outcome of the questionnaire because at that time only a fraction of a percentage of the population was diagnosed with IC (if their attending primary care doctor even believed in IC) then a study asking a population of this size if they had IC the answer would be 'no'. The second part of The National Nurse Health Study tried digging a little deeper a few years later by phrasing the question as “Do you have IC as diagnosed by a hydro-distension?” Again, the questionnaire did not bring accurate results as the medical community would only suggest a hydro-distension to diagnose IC if the doctor knew about and believed in IC as a diagnosable disease. Which brings me to the question of when you look at how many people have the three hallmarks of IC: urgency, frequency and pain. How do you evaluate that it is IC? When people visit me in my office and they present urgency, frequency and pain my conclusion is IC or UTI as there isn't much else that it could be (unless they have blood if they have kidney stones, etc. then I test for that). But if I see urgency, frequency and pain presented, what does that mean is the origin?

Carin Willis: It means the bladder is the origin.

Dr. Rosenberg: That is correct. So we isolate the bladder and no tools within a general office setting are necessary. If I numb someone's bladder [with Lidocaine and bicarb] within my office and their bladder pain goes away then the diagnosis is likely IC. There is no reason for a cystoscopy or hydro-distension So remember that IC is a symptom diagnosis not a pathological diagnosis. One of the doctors within my office had a woman present with bladder pain and a history of 'chronic UTIs', and urinary frequency and urgency. He asked my advice within the first five minutes of her appointment and I asked him if had considered IC as a diagnosis. Within ten minutes he numbed her bladder and her pain went away. The patient claimed that she had not felt that great in years! So within fifteen minutes of her appointment she had a diagnosis and her bladder pain was gone.

Carin Willis: That is incredible! I am of course remembering my own long battle for diagnosis and treatment of IC as you are describing this scenario and wishing that I had had such an enlightened primary care doctor many years ago.

Dr. Rosenberg: If I were to guess I would say it took many years and many trips in an out of doctors' offices trying to get someone to listen to your pain and symptoms?

Carin Willis: That is correct. I am sure my IC story is similar to many people with IC in that the road to a diagnosis was a long and painful one. So in fifteen minutes you were able to diagnosis and treat her IC pain-that is incredible to hear as an IC patient.

Dr. Rosenberg: Yes. And that is a key point right there. Treat early! The earlier that IC is treated the better it is for the IC patient so that further damage does not occur. The data shows that it takes an average of 5-7 years for the patient to get treated for their IC. We can change this by empowering the primary care physician. Again, the sooner that we can treat IC the better and the reason for this is that the bladder, vagina and bowels have a protective glycosaminoglycan layer, which protect a healthy person from all the nasty stuff in the urine. You might hear it described as the GAG layer. People often wonder why urine does not burn the bladder as it a caustic agent. The reason it does not burn the bladder is because of the protective GAG layer. If the layer gets destroyed for some reason, like what happens in IC patients, the layer gets compromised and then you get pain.

Carin Willis: The pain of IC does make a lot more sense when you explain it like that. My next question would be is awareness that IC is not just a women's disease becoming more widely known within the medical community?

Dr. Rosenberg: Yes, I have recently written a paper about this (about men with prostatitis). It still seems that men with IC are not as common as women with IC, but that might be because men with the symptoms of pain, frequency and urgency are diagnosed as having Chronic Prostatitis. Chronic Prostatitis in my opinion probably equals IC. Sometimes we get caught up in the naming, but if the main three symptoms are there, it is the same disease.

Carin Willis: So do you feel that the diagnosing tools and treatment plans are now becoming more standardized within the medical community?

Dr. Rosenberg: Standardization is on the horizon, but it is hard to be completely optimistic. Some doctors are getting there. Again, those of us in the medical community were taught in medical school that IC is a wastebasket disease. It will take a lot more research papers, seminars, training, etc. on what we've recently uncovered about IC for standardization to continue to occur within the future. Again, we need to get away from referring IC patients to a urologist for painful and unnecessary tests to diagnose IC. A lot of doctors and urologists still rely on the potassium sensitivity test, which I'm sure you know from a personal level can be quite painful to your bladder. If someone's already in pain, don't give them more pain! Numb the bladder and give them comfort and give the diagnosis of IC early so that you can start treating it.

Carin Willis: I was referred to have a potassium sensitivity test which I refused but I did have other painful and invasive tests such as a cystoscopy without pain medication. Oftentimes, there is pain associated with what an IC patient eats. Is diet modification still something that you recommend for IC patients?

Dr. Rosenberg: Yes, absolutely! It has been proven that diet modification can be very useful for IC patients. Unfortunately there is no set list of what not to eat but we can all agree that food items with high levels of acid such as tomatoes seem to be a culprit for most IC patients. Again, this goes back to the compromised GAG layers in the IC patient. I suggest an exclusionary diet for my IC patients by isolating known irritants and allow the patient to gradually add in foods to measure what may or may not be tolerated. It is not an exact science but diet does play a role in the IC patient treatment plan. Behavior is a huge part of this as well in order to determine what is or is not working for the IC patient. The more proactive and involved the IC patient is with their diet and treatment plan, the better hope for them as an IC patient to find some relief of their pain and symptoms.

So let me ask you this in relation to your own IC-do you have dyspareunia [pain during or after sexual intercourse]? Are you familiar with that terminology? Also, I would assume that you think you have a smaller than average bladder and you have known since childhood where the restrooms were located at every place you visited.

Carin Willis: Unfortunately, yes I have experienced dyspareunia with my IC. And you are correct about the fact that I probably urinated more than my friends as a child. For a moment I thought you were going to bring up having IBS since I have dealt with IBS since childhood.

Dr. Rosenberg: I am sorry to hear that and the reason that I could make a correct assumption is that nearly 100% of women with IC also have dyspareunia. Again, it's a matter of retraining primary care doctors in the screening process. There is connection as well for some people between IBS and IC. Also, I'm sure you've heard there is a huge part of the population being treated for OAB, but the doctors need to know if the patient has OAB with pain, to change the diagnosis to IC. And then from there the goal with any IC therapy (of course after early diagnosis) is: rebuild the bladder and break the pattern of pain and inflammation. Again the initial educational process is wrong for many primary care doctors and they need to know the minute they hear: urgency/frequency/pain they should be thinking IC. Awareness is key.

I believe that treating IC patients has made me a better doctor because they have taught me to listen better and to pay attention. I feel that both the doctor and the patient need to own the problem and have a time line for trying different treatments instead of sending an already overwhelmed IC patient home with only one treatment choice and no time line for testing it before moving on to something else. Otherwise the patient will feel like they're up a creek without any other options if the first treatment doesn't work. Again, along with medical treatments, food modification is important and if I have a patient saying they have food allergies or pain associated with eating, that tells me they have something affecting the GAG layer of the bladder. High levels of potassium can cause pain. The two most common trigger foods are orange juice and tomatoes but of course the list of foods that can hurt the bladder is much greater than two foods.

Carin Willis: Dr. Rosenberg you've just touched on all of the main things that affect an IC patient's daily life: pain, urgency, frequency combined with dyspareunia combined with issues eating and having to try a sometimes extreme diet modification. All of these things in combination create a lowered quality of life for the IC patient.

Dr. Rosenberg: That is correct Carin. Quality of life can be greatly affected by IC. Doctors should also be aware of this dynamic when treating their IC patients.

Carin Willis: Well Dr. Rosenberg our time is up for our interview. Thanks again for the interview this morning, I know it will be very helpful for IC patients to read your insights about diagnosing and treating IC on the IC support website. And even more importantly thanks for the wonderful work you are doing in the world of IC on behalf of all of us IC patients.

Dr. Rosenberg: Thank you Carin. I would also like to offer that if any IC patients would like to email me I would gladly take their questions at my personal email (please note the email address contains three 'ts' in a row): matttoren@yahoo.com

Carin Willis: That is wonderful. Thanks again, Dr. Rosenberg.









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