Frequently Asked Questions

Robert J. Echenberg, M.D.


Dr. Robert J. Echenberg is a board certified obstetrician-gynecologist, who completed his residency training at the University of Michigan in 1972, practiced privately in Bethlehem,Pennsylvania for more than 20 years, and has worked for hospital based systems since 1994 in New Mexico and more recently back in Bethlehem with St. Luke's Hospital. In 2006, he has returned once again to private practice in Bethlehem , PA.

In years past he had a full obstetric and gynecological surgical program with emphasis on team approach, education, family participation and holistic management. He has had extensive experience with sexual counseling, grief counseling, and provided special programs for premenstrual syndrome, infertility, pre-conceptual and renatal education, and has provided a caring approach to women throughout the life cycles from adolescence through the menopausal years.

He has spoken at local, regional and national levels concerning women's health care issues. He was most influential in helping to establish many of the family-centered and technologic changes in obstetric and gynecological practice at St. Luke's Hospital in Bethlehem, PA for over twenty years, and was instrumental in helping to allow families to participate in and fully appreciate their birthing experiences.  Dr. Echenberg has demonstrated his technical expertise and skills in both basic
gynecologic surgery and in all aspects of obstetrics as he maintained at least 15-20 births
per month and a comparable number of surgical procedures throughout most of his career.

Even while maintaining a busy practice of clinical medicine throughout those years, Dr. Echenberg's administrative skills and management activities focused on patient centered issues. All of the committees, programs, and organizations that he either helped to establish or that he participated in required a high degree of organizational skills as well as a deep commitment of time and energy. He was recognized throughout the Lehigh Valley in Southeast Pennsylvania as one of the key forces and influences in fighting for the best interests of the women and children of his community for over two decades.

His foresight and vision paved the way for many of the changes that took place in the routine medical care of women, both in the various community hospitals in the region as well as in the private offices and clinics throughout that community in Pennsylvania. Upon moving to New Mexico in 1995, Dr. Echenberg was part of a multi-specialty hospital-based group in Las Cruces, New
Mexico. Working for the "First Step Women's Health Center", Dr. Echenberg practiced in professional collaboration with other physicians and Certified Nurse-midwives, caring for a large population of indigent women in the Southern New Mexico region. The physicians within the group were responsible for all of the high risk Ob and operative births.

Dr. Echenberg took great satisfaction in working within collaborative groups and took pride in helping to maintain an excellent record of quality outcomes of mothers and babies in these programs. There were approximately 120-130 births per month in this high risk population among almost exclusively uninsured and mostly indigent families in this economically poor region of Southern New Mexico. The C-section rate of about 11% was only one example of the quality care provided by this multi-disciplined group sponsored by Memorial Medical Center in Las Cruces.

Dr. Echenberg's teaching skills and experience can be appreciated by the fact that throughout all the years in Bethlehem, Pennsylvania, St. Luke's Hospital maintained an accredited Ob/Gyn Residency program and he was on the teaching faculty for that program. He was also affiliated with Temple University as an associate faculty member, working with Temple University medical students who rotated through that service.   For one year before coming to New Mexico, Dr. Echenberg was on the faculty of the Ob/Gyn Residency program at Lehigh Valley Hospital Center in Allentown,
Pennsylvania.. He remained actively teaching in New Mexico in their Family Practice Residency program. In 1999, he was appointed Clinical Instructor by the Health Sciences Center of the West Virginia University School of Medicine.

In addition, for the past 25 years, Dr. Echenberg has guest lectured at many courses in local colleges and universities in both Pennsylvania and New Mexico.

Finally, for about the past 18 years, Dr. Echenberg's biggest professional interest outside of women's healthcare has been in the area of medical ethics. Once again, his managerial and executive skills have been utilized in creating and chairing various ethics committees and programs both in Pennsylvania and New Mexico, including one of the first Perinatal Ethics Committees in the country in 1984. It should be mentioned that without him, the ethics program at Memorial Medical Center in Las Cruces, NM would probably not have been established in its current form, and that he was commended for his work after JCAHO gave the hospital high marks in this complex area of ethics-related programming.  Additionally, in 1999, he sat on the ethics committee of St. Joseph?s Hospital in Buckhannon, WV, and is currently back on the Ethics Consultation Committee at St.
Luke?s Hospital in Bethlehem, PA. He was also reappointed Chair of the Perinatal Ethics Committee at that institution.

During the last 2 years of his stay in New Mexico, Dr. Echenberg was Chairman of the Ob/Gyn Department at Memorial Medical Center. He ran regular administrative meetings in this capacity and sat in on numerous other decision-making meetings for his department. In his position on the Medical Executive Committee, he was sent to several management training seminars by the hospital.  In addition to all of these hospital-related professional activities, Dr. Echenberg has
devoted extensive volunteer time to the local community sexual assault crises centers, both in Pennsylvania and in New Mexico, as a member of the Board of Directors. He was on the personnel committee in New Mexico, and spent extensive time participating in the recruiting and hiring of an executive director for this organization. He was also medical director of the "SANE" program in which nurses were trained to perform sexual assault physical exams and collect forensic evidence, and then testify in court when needed.

It should be noted that virtually all of the professional and community activities that Dr. Echenberg has participated in outside of his regular clinical duties required a great deal of managerial and leadership skills. This has been the case for many years, and he has been recognized in numerous ways for his vision, depth of interest and accomplishments in these endeavors.

Chronic Pelvic Pain

Description of Overall Program

The following is a descripton of the program for chronic pelvic pain that has been developed by Dr. Echenberg. This program is unique in the Lehigh Valley and is based on sound principles of evidenced based medicine. Chronic pelvic pain and lower genital tract disorders including painful bladder syndrome (interstitial cystitis), irritable bowel syndrome, low back disorders, vulvar burning/pain and sexual pain disorders, are among the most common reasons for women seeking help from their gynecologists or other primary health care providers. Special hours are set aside for Dr. Echenberg to be able to spend the time necessary to sort out, diagnose, and provide appropriate therapies for these varied disorders.


WHAT IS THE CHRONIC PELVIC PAIN PROGRAM?

The Chronic Pelvic Pain Program is a special program for women who have a history of pain in the lower abdomen, pelvis, lower back, or in the lower genital tract for a period of at least 3 - 6 months. Chronic female pelvic pain also involves many women with long term histories of bladder irritability (urinary frequency, urgency, and night time voiding), vaginal irritation, and increasingly difficult discomfort with sexual relations, all of which may have been unresponsive to many different attempts at therapy.

There is only a limited amount of appointment times available due to the amount of time spent with each patient. Dr.Echenberg works in association with health care psychologists and physical therapists, in Bethlehem, Allentown, and Emmaus.

WHAT TESTS SHOULD BE DONE BEFORE BEING SEEN?

We recognize that you may already have had various tests, including urine tests, blood tests, ultrasound and x-ray examinations, and even surgical procedures such as laparoscopy (surgery done to view the pelvic organs). There is no need to get any further testing before entering our program, but it is very important that you make arrangements to get your previous medical records to us. Please contact your doctor?s office to sign the necessary releases to send us these records. (We will send you the necessary release forms when you make an appointment).

These forms as well as other health questionnaires and registration and insurance forms for our office can be mailed or E-mailed to you depending on your preference.


WILL MY INSURANCE COVER THESE VISITS?

Yes. Appropriate coding of your visits will be submitted to insurance in order to maximize coverage of your specific problems.

WHAT HAPPENS AT THE FIRST VISIT?

A detailed history of your problem will be assessed by the doctor and his nurse. This first visit usually concentrates on a great deal of education and offering you many resources in the form of handouts, both published and Internet sites. Usually a comprehensive physical examination, concentrating on the areas of greatest concern, is carried out as well. If you feel that it would be helpful for you to have a significant other person with you at any visit it would be acceptable for you to do so. These first visits will range from 60-120 minutes.

WHAT ABOUT SUBSEQUENT VISITS?

We feel strongly that mind and body
issues are very closely linked in anyone having chronic pelvic pain. Everyone entering our program will likely be asked to see a health psychologist and/or a physical therapist as part of their therapeutic program. An overall assessment and plan of treatment will then be implemented on an individual basis.

WHAT ARE THE GOALS OF THE PROGRAM?

Our major goal is to help you regain control of your life. Chronic pain affects every part of your life - work, family, and social relationships. Stressful times in your life can also make pain worse. Therefore, we use a holistic approach in helping you learn to manage your pain - things like stress management, exercise, nutrition, and relaxation techniques. We also treat specific causes of pain. This will include various medications and treatments for your specific problems.

DO WE THINK THAT YOUR PAIN IS ALL IN YOUR HEAD??

No! We know that your pain and its impact on your life are very real. That does not mean that there is a major disease causing your pain that has been missed. We often find treatable conditions which are not dangerous but which can trigger very serious chronic pain. The model of therapy for these chronic pelvic pain issues is very similar to the model of treatment used in many established chronic pain management centers. Also, very few of our patients are found to have dangerous illness, and surgery is rarely indicated.

WHAT DO WE FEEL ARE SOME ?NO ? No?s??

There are some things that we do not recommend in the Pelvic Pain Program, since they do not seem to help and may make pain or disability worse.

1. We do not routinely prescribe long term narcotics. (Research shows that these drugs can make chronic pain worse over time). (Opiates may be used as rescue medication for severe pain flares).
2. We do not sign permanent disability papers. (Our goal is to help you get back to work!)
3. We rarely recommend surgery. (We do not think surgery helps in the vast majority of cases of chronic pelvic pain.)

Program for Female Lower Genital Tract Disorders and Chronic Pelvic Pain

A Therapeutic Program offered by
Robert J. Echenberg MD

A variety of common symptoms in many women may result from disorders of the various organ systems in the female pelvic area. Some of these disorders are quite common but are often not diagnosed routinely or easily. Combinations of these disorders may sometimes be present for months or even years, and may lead to varying degrees of physical and emotional disabilities if they remain undiagnosed or treated ineffectively.

Lower genital tract disorders may include any combination of the following symptoms complexes:

- Symptoms of Recurrent Urinary Tract Infections: Recurrent episodes of increased urinary frequency, urgency, and night time awakening for urination ? often with negative urinalysis and cultures.
- Symptoms of Recurrent Vaginal Infections: Recurrent episodes of vaginal burning, itching, redness, irritation, and variable vaginal discharges ? often with inconclusive vaginal smears and cultures.
- Persistent or Recurrent Vulvar Pain: burning, itching, redness, and unexplained hypersensitive painful areas on the vulva or the vaginal opening.
- Chronic Dyspareunia: increasingly difficult and painful sexual intercourse.

Conditions such as Interstitial Cystitis and Vulvodynia are examples of disorders that may cause any or all of the above symptoms and often go undiagnosed for many years.

Chronic pelvic pain may also co-exist with any or all of the above symptom complexes. The presence of unexplained non-cyclic persistent or recurrent lower abdominal pain, back pain, hip or even inner thigh pain may alert one to this diagnosis.

Any of these symptoms, especially if associated with variations of chronic pelvic pain for 3-6 months or longer, may represent a diagnosis of a Central Regional Pain Syndrome. Other examples of central regional pain syndromes include Fibromyalgia, Reflex Sympathetic Dystrophy (RSD), Irritable Bowel Syndrome (IBS), Migraine Headaches, Chronic Fatigue Syndrome, and Trigeminal Neuralgia. Severe Seasonal Allergies may also be associated with these syndromes.

Quality of life can be greatly impaired with these symptoms and syndromes, and many women suffer for years without being adequately diagnosed. Many have seen multiple specialists and often are treated both medically and surgically without significant reduction of their symptoms.

Our program offers a careful assessment of these diverse problems and symptoms, and focuses on diagnostic accuracy. Individualized treatment plans are initiated early, and often include multidisciplinary therapeutic approaches.

Dr. Robert Echenberg is the primary medical provider of these services. Dr. Echenberg has over 30 years of experience as a practicing Board Certified Obstetrician and Gynecologist, and he has developed special interest and expertise in the diagnosis and management of chronic pelvic pain and lower genital tract disorders over the past several years - since 2001.

The major goal of this therapeutic program is to aid patients with these debilitating problems regain control of their lives. With a combination of medical therapies, physical therapy of the pelvic floor musculature, psychological counseling and acupuncture and relaxation techniques when indicated, this holistic approach has proven itself by regularly contributing to improved quality of life of those women cared for in our program.

We know that your chronic symptoms and pain have had a significant impact on your life. You will not be treated as though your problems are only ?in your head?. However very few of our patients are found to have serious diseases and seldom are surgical interventions required. Painful symptoms that have been present for prolonged periods of time may show no current acute tissue damage. We believe that these chronic problems need to be addressed entirely differently than acute pain and discomfort.

Please fill out the questionnaire and bring it with you to your first appointment. We will go over the questions with you at the time of your visit. We have a limited number of new appointment spaces due to the amount of time spent with each patient.


A large part of recovery in this therapeutic program depends on positive patient motivation. We encourage each patient to learn as much as possible about her specific condition and participate actively in her own treatment. Time will be spent for education, and reading materials and web sites will be provided.

Bladder Issues and Pelvic Pain

Painful Bladder Syndrom/Interstitial Cystitis


Background
Interstitial cystitis can be a chronic, debilitating disease. Since there is no known cause or cure, our approach has been one of active patient participation and patient education. We welcome the opportunity to assist those in need of attention and understanding as our practice grows with an increasing number of interstitial cystitis patients.

Interstitial cystitis (IC), also known as "painful bladder syndrome" or "frequency- pain syndrome," is a complex, chronic disorder that has baffled doctors for as long as it has been recognized. Patients with interstitial cystitis may have an inflamed bladder wall that can lead to scarring, decreased bladder capacity, glomerulations (pinpoint bleeding) and, in rare cases, ulceration. In other cases, the bladder wall can appear normal without any evidence of disease process.

Estimates of the number of people who have been diagnosed with IC vary. Studies have indicated that up to 20 to 25% of all reproductive age women have some degree of this disorder. It is likely that millions who suffer this disease have yet to be diagnosed. About 90 percent of IC patients are women. While people of any age can be affected, about two-thirds of the patients are in their twenties, thirties, or forties. IC is rare in children. In a few cases, IC has afflicted both mother and daughter, but there is no evidence that the disorder is hereditary, or genetically passed from parent to child.

Because IC varies so much in symptoms and severity, many researchers have considered that it may actually be not one, but several diseases. In the past, cases were mainly categorized as ulcerative IC or non-ulcerative IC, based on whether ulcers had formed on the bladder wall. But many clinicians have questioned the usefulness of this classification, since the vast majority of cases do not involve ulcers, and their presence or absence does not influence treatment options or response to treatment as much as other factors do.

CAUSE
The cause of IC is unknown, but the disorder is believed to be a real, physical phenomenon, not a result, symptom, or sign of an emotional problem. Research has focused on the glycocalyx (mucus) lining of the bladder made up primarily of mucins and glycosaminoglycans (GAGs). This layer normally protects the bladder wall from toxic effects of urine and its contents. Researchers at the University of California, San Diego, found that this protective layer of the bladder was "leaky" in about 70 percent of IC patients they examined and may allow substances in urine to pass through the bladder wall mucosa and trigger IC symptoms. The researchers also found that patients with bladder wall ulcers had "leakier" bladders than patients without the ulcers.

An allergic reaction that causes specialized mast cells to release histamine is considered another possible cause, however these changes are seen in a minority of biopsy specimens. Infection, drug reactions and autoimmunity are other causes under investigation, however no significant advances have been forthcoming.

SYMPTOMS
The symptoms of IC vary greatly from one person to another but typically have similarities to those of a urinary tract infection:

* Decreased bladder capacity
* Severe urinary frequency, day and night
* Feelings of pressure, pain, and tenderness around the bladder, pelvis and perineum that may increase as the bladder fills and decrease as it empties.
* Painful sexual intercourse
* In men, discomfort of pain in the penis and scrotum
* In most women, symptoms usually worsen around the menstrual cycle
* As with many other illnesses, stress may also intensify symptoms.

DIAGNOSIS
Because symptoms are similar to those of other disorders of the urinary system, and because there is no definitive test to identify IC, other conditions must be ruled out before considering a diagnosis of IC. Among these disorders is a urinary tract or vaginal infection, bladder cancer, radiation cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, and in men, prostatitis. Spasm of the muscular pelvic floor must also be considered.

IC may also be associated with diseases such as vulvodynia (vulvar/vaginal pain), fibromyalgia (musculoskeletal pain) and irritable bowel disease.

Complete evaluation may include a urinalysis, urine culture, urodynamic (bladder pressure) study, cystoscopy (looking into the bladder using a miniature telescope with anesthesia), biopsy of the bladder wall, and, in men, laboratory examination of prostate secretions.

Because bladder distension is painful in IC patients, cystoscopy must be performed with either regional or general anesthesia. The diagnostic finding is pinpoint hemorrhage, known as "glomerulations" which appear only after the bladder is distended. A small bladder capacity under anesthesia also helps to support the diagnosis of IC.

In review, the diagnosis of IC is based on:

* Presence of frequency, urgency, with pelvic/bladder pain (PUFF Scale questionairre)
* Cystoscopy sometimes indicated - Cystoscopic evidence (under anesthesia) of bladder wall inflammation and pinpoint bleeding (glomerulations) or Hunner's ulcers
* Absence of other diseases that may cause the symptoms

TREATMENT
We have not yet found a cure for IC, nor can we predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, however, they may return after weeks, months, or years. This is known as IC FLAIR and it is important to understand that the symptoms of IC can recur or "flair" up at any time without cause or reason.

Because we do not know the cause of IC, treatments are aimed at symptomatic relief. One or a combination of treatments, many of which are described below, helps most people for variable periods of time.

Bladder Instillation:

Bladder instillation is a treatment procedure that is done in the office. A tiny soft catheter is placed into the bladder. Medication is then poured into the bladder and the catheter is removed. The patient then leaves the office and is instructed to empty her bladder about 1 1/2 to 2 hours later.


* "Rescue Solution" is now becoming first line treatment for initial severe pain and symptoms of flair. This is a mixture of lidocaine, (a topical anesthetic), heparin and Sodium Bicarbonate. It is very soothing and quickly reduces pain levels by "breaking the pain cycle". This results in dramatic reduction of anxiety and allows more time for office assessment to determine long term treatment options. Treatments are usually needed over the course of about 6 weeks to gain durable results.

* Heparin or pentosanpolysulfate (Elmiron) can also be instilled as a single agent and are thought to work by replacing or repairing the "leaky" bladder lining.

* A variety of other drugs have been used experimentally for bladder washes, but have not been shown to be beneficial and in many cases can be extremely irritating. These include silver nitrate, sodium oxychlorosene (Clorpactin WCS-90) and BCG.

Oral Medication
Pentosan polysulfate sodium (Elmiron) and amitriptyine are two medications that have been shown to be effective in randomized, placebo-controlled studies.

* Elmiron is an FDA approved medication which helps restore the damaged lining of the bladder. Results are evident by the third month of use and there appears to be a 40 % to 50% response rate. It is taken three times a day and is generally well tolerated.. The most common side effect is gastric upset and about four percent have hair loss that is completely reversible when medication is stopped.

* Amitriptyline (Elavil) is an antidepressant that has the ability to block pain and reduce bladder spasms. Studies have now documented statistically significant improvement in pain and urgency when compared to placebo. Most people who respond to this drug show improvement 3 or 4 weeks after starting treatment. Side effects include drowsiness and weight gain.

* Hyoscyamine (Levsin) and oxybutynin (Ditropan, Ditropan-XL) and tolterodine (Detrol, Detrol LA) have excellent properties to reduce bladder spasms and are well tolerated. Dry mouth is the most common side effect of this class of medication.

* Hydroxyzine (Vistaril, Atarax) is an antihistamine that has been reported to be effective in limited studies.

Supplements
Non-prescription supplements are also under investigation and some have been shown to benefit some patients in limited, uncontrolled studies.

* L-Arginine is an amino acid (protein building blocks) that breaks down into nitrous oxide, (a neurotransmitter) that can reduce pain and frequency in some patients.

* Kava Kava is an herbal preparation that has anti-anxiety effects. Even though this is a plant extract and is not under FDA control, it can produce serious side effects and a physician's supervision is needed if it is taken for more than 3 months.

* Quercitin is one kind of several substances called bioflavonoids that are found in onions, red wine, green tea and other plants. In limited and preliminary clinical reports, a non-standardized preparation seems to have improved symptoms in about half of the patients. Quercitin has strong anti-oxidant and anti-inflammatory properties that may explain its beneficial effects, but further well-controlled studies are needed to determine its effectiveness.

Diet
There is no scientific evidence linking diet to IC, however many patients obtain considerable relief by limiting intake of alcohol, tomatoes, spices, chocolate, caffeinated beverages, citrus and high-acid foods. Some patients also notice a worsening of symptoms after eating or drinking products containing artificial sweeteners. An "elimination diet" can be used to pinpoint specific food irritants and is recommended for all IC patients. For those who are sensitive to food acidity, "Prelief" is available locally as tablets or granules that reduce the acidity of food and helps to reduce pain. Their toll-free hotline is 1-800-994-4711.

PAIN CONTROL: A different kind of pain.
Most of us are familiar with typical pain of a sprained ankle or a cut finger. This is called "somatic" pain and is easily localized to the area of injury, is easy to describe (sharp, dull or aching) and heals in a short period of time. The pain of IC is called "visceral" pain and is very different because it arises from the bladder, an internal organ located deep in the pelvis. This kind of pain is difficult localize, can be very difficult to describe and occurs on a long-term, chronic basis. One reason why IC is so frustrating is because a patient may have difficulty telling a doctor where the pain is located and be unable to describe its character. A typical patient will point to several areas including the back thighs abdomen and pelvis calling the pain "pressure-like" or "cramping". This is not the typical description of distinct and localized somatic pain that most doctors are familiar with and feel comfortable treating. One of the most important aspects of receiving good care is to choose a physician who is experienced in treating IC and is comfortable assessing and treating visceral pain.

Opioid Narcotics
For some IC patients the most effective control of long-term pain is obtained with the use of opioid narcotics. They are derived from the opium poppy and are excellent at providing pain relief, Vicodin and oxycodone are the most commonly prescribed oral preparations. Side effects include sedation, respiratory depression and constipation. These can be very significant and require careful dose adjustment and monitoring.

Unfortunately, all opioids have the potential for tolerance, physical dependence, and addiction. These characteristics have lead to many misconceptions about narcotic use and prevent many health care providers from considering prescribing them for long-term use.

Tolerance to opioid medication is common. It refers to the progressive decrease in pain control and the need of higher doses to provide the same level of pain relief.

Physical dependence always occurs. with long-term use of opioids. If the medication is abruptly withdrawn or the dose is markedly reduced patients will experience a withdrawal syndrome that includes abdominal cramping, sweating, nausea, diarrhea and irritability. It is strictly a medical condition and should not be taken as a sign of psychological weakness.

Addiction is a behavioral disorder that results in psychological dependence of a substance. It refers to compulsive drug use and continuing drug use despite harm. Unfortunately, addiction is all too often incorrectly equated with physical dependence and withdrawal syndrome. To provide proper chronic pain management it is crucial for physicians to recognize this critical difference.

Objectives of Pain Control
The patient and physician should have realistic expectations regarding the use of opioids.

Obtaining an excellent Quality of Life should be the main goal by adequate control of pain, not the complete elimination of pain. Outcomes should focus on developing a daily routine schedule involving work, participation in social functions, and family needs.

Just like long-term medication controls but does not cure diabetes or high blood pressure, long term medication is required to adequately control chronic pain.

Because of the abuse potential of narcotic pain medication many physicians require patients to agree to an Opioid contract. This is a reasonable approach that creates the obligation of both parties to effectively communicate dose requirements, dose changes, reports of side effects and refill authorization.

Anxiety and IC
Anxiety is a significant component of IC that tends to be misunderstood. Patients coping with chronic pain often restrict activities for fear of increased pain or further injury. Withdrawal from normal activities such as work, family responsibilities and social events can result in a high degree of anxiety, worry, frustration and fear of loss. Research has shown that individuals with a high disposition to become anxious report significantly higher pain levels than those with low levels of anxiety. It is also known that as anxiety increases, the intensity of reported pain increases. This results in a vicious cycle that needs to be treated.

Pain and Anxiety Cycle

Unfortunately, in many situations the pain-anxiety cycle is not treated because the physician or patient does not recognize or refuses to accept the presence of anxiety. The impact that psychological factors have on the perception of pain does not mean that the pain is "in the persons head" or not real. Those with IC who report pain are really experiencing it, even if a physical cause cannot be identified.

Relief of anxiety can be obtained by two approaches:

* Behavioral changes include relaxation techniques and stress management. There are many options available that can be individualized according to personal preference. These include:
o Progressive muscle relaxation
o Meditation
o Prayer
o Visualization
o Breathing techniques
o Biofeedback

* Medication can relieve symptoms quickly and safely. The most effective and most prescribed class of medication is benzodiazepines (Valium, Xanax, Klonopin). The most common side effect is drowsiness and tolerance (see above) can develop so short-term use is recommended. Because these drugs are often used in combination with antidepressants such as amitriptyline, the lowest possible dose should be prescribed to minimize side effects.

No one should ever be denied treatment for pain. But because of the reluctance of certain physicians to treat chronic pain, there is an alternative to help obtain proper pain management.

Pain Management Programs
Pain clinics are now becoming popular for patients who continue to have difficulty obtaining adequate pain control. These are specialized, integrative pain management programs that are available at many community and academic hospitals. Dr. Echenberg's practice offers such a comprehensive pain management program for chronic pelvic pain in women. Therapies offered typically include conventional pain medications, interventional pudendal nerve blocks, trigger point injections, referral for acupuncture, neural therapies (i.e. Neurontin, Lyrica, Topomax), massage therapy, physical therapy, deep tissue and spinal manipulation, dietary recommendations and counseling.

Sacral Nerve Stimulation
This can be used to relieve severe frequency when all other options have failed. Our program can refer you for this procedure though it is rarely needed. The InterStim device is an implanted stimulation system that sends electrical impulses to the nerve near the tailbone that influences bladder control. Stimulation of this nerve may relieve the symptoms related to urge incontinence.

The effectiveness of the therapy is first tested on an outpatient basis. If the test is successful, the patient may choose to have the device implanted.

The final procedure requires general anesthesia, A small wire is placed near the sacral nerve through an incision and is passed under the skin to a silver dollar sized neurostimulator. The neurostimulator is then placed under the skin in the upper buttock.

Adjustments can be made with a wireless programming device that sends a radio signal through the skin to the neurostimulator. The patient can make further adjustments at the doctor's office or at home.

This treatment is about 50% effective. Complications such as infection are frequent, permanent nerve damage have been reported and migration of the implanted wires can render the system ineffective. However, it is an excellent alternative to any major surgical procedure.


Self Help
The emotional support of family, friends, and other people with IC is very important in helping patients cope with the disorder. Studies have found that IC patients who learn about the disorder and become involved in their own care do better than patients who do not. We encourage our patients to visit the superbly designed web site: www.ic-network.com which has a wealth of information regarding all aspects of IC including chat groups. We also suggest our patients visit www.ichelp.com which provides access to professional publications, support groups and research funding.

RESOURCES
ICN Patient Handbook. This is an on-line manual available at www.ic-network.com . Very accessible and pertinent information.

The Interstitial Cystitis Survival Guide. Moldwin, New Harbinger, 2000. The most comprehensive review of IC available. Easy to read. Highly recommended.

Overcoming Bladder Disorders. Chalker and Whitmore, HarperPerennial, 1990. An excellent comprehensive manual including self-help strategies. A bit outdated but still extremely useful.

Conquering Bladder and Prostate Problems. Blaivas, Plenum Trade, 1998. Somewhat technical chapters covering all aspects of the urinary system.

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Interstitial Cystitis Updates

In an attempt to further understand this disease and to discover new treatment options and research discoveries, we will post reviews of recent articles and other significant matters that relate to interstitial cystitis.

Antiproliferative activity is present in bladder but not renal pelvic urine from interstitial cystitis patients.

Keay S, Warren JW, Zhang CO, Tu LM, Gordon DA, Whitmore KE Department of Medicine' University of Maryland School of Medicine' the Research Service' Baltimore Veterans Affairs Maryland Health Care System ë21201' USA.; J Urol; 1999 Oct; 162(4):1487-9

PURPOSE: To determine whether an antiproliferative urine factor that we previously discovered to be specific for urine from interstitial cystitis (IC) patients originated in the lower urinary tract or a more proximal site.

MATERIALS AND Methods: Sequential catheterized urine specimens were collected under sterile conditions from the bladder and renal pelvis of 20 IC patients and one control patient (with stress incontinence). Antiproliferative activity was determined by 3H-thymidine incorporation of primary normal adult bladder epithelial cells cultured with pH- and osmolality-corrected bladder or ureteral urine specimens; significant inhibition was defined as a change in 3H-thymidine incorporation greater than 2 standard deviations from the mean of control cells.

Results: Bladder urine specimens from 19 of 20 IC patients significantly inhibited 3H-thymidine incorporation as compared to cell medium alone (mean change for bladder specimens = -68.7+/-7.5%)' while a renal pelvic specimen from only 1 of 20 IC patients inhibited proliferation significantly (mean change for renal pelvic specimens = 3.2+/-3.4%) (p<.001 by Fisher's exact test). The one inhibitory IC renal pelvic specimen inhibited by 31% while a bladder specimen obtained during the same procedure inhibited by 94%. In comparison neither bladder nor renal pelvic urine from the control patient had inhibitory activity.

Conclusions: The antiproliferative factor previously found in the urine of IC patients appears to be made and/or activated in the distal ureter or urinary bladder.



New Clinical Marker for Interstitial Cysitis

The cause of interstitial cystitis is thought to be a deficiency in the protective mucous layer of the bladder. More specifically, it is thought that potassium diffusion becomes more prominent and potassium acts as an irritant to the superficial and muscle layers of the bladder, producing symptoms of interstitial cystitis.

GP 51 is a urinary glycoprotein that functions as a protective barrier to the bladder wall. A recent study at Thomas Jefferson University evaluated urinary GP 51 levels in patients with and without interstitial cystitis. It was found that these levels are significantly reduced in patients with the disease. Although, it does not explain why levels were lower, it certainly raises the possibility of using GP 51 as a clinical marker for diagnosing interstitial cystitis using a non-invasive urinary test. It may also become an excellent way of monitoring treatment and the ongoing effects of drug therapy.

Reduce Acid Content in Foods

Many patients with interstitial cystitis have difficulty tolerating acidic foods such as pizza, tomato sauces, coffee and juices. It is thought that the bladder pain is caused by high levels of potassium that leaks through the bladder wall. A product called Prelief, which reduces acid content in food, is available over the counter as tablets and granules and may be of value in the diets of interstitial cystitis patients who are sensitive to acidic foods. Check out their website at www.prerelief.com.

Vulvar pain/Vestibulitis

Dr. Echenberg may have prescribed Lidocaine Ointment for you for your persistant irritation at the vaginal opening. 5% Lidocaine Ointment is a local topical anesthetic ointment that has been shown to gradually diminish the senstivity of the nerve fibers that supply the vaginal opening (the "vestibule" of the vagina). The instruction for use of this ointment is as follows: Apply a small portion of the Lidocaine Ointment to a cotton ball each evening at bedtime and place it in the vaginal opening overnight and throw it away in the morning or if you have to get up to the bathroom during the night. Some patients find that the Lidocaine provides a soothing comfortable feeling when it is there overnight while it gradually is desensitizing the nerve endings that cause the burning and pain during intercourse. Please call for an appointment with Dr. Echenberg if you wish to be evaluated for this all too common problem.


For Patients
Guidelines for Vulvar Skin Care


NOTE: The goal is to promote healthy vulvar skin. This is done by decreasing and/or removing any chemicals, moisture, or rubbing (friction). Any products listed below have been suggested for use because of their past success in helping to decrease or relieve vulvar/vaginal itching and burning.

LAUNDRY PRODUCTS
Use a detergent free of dyes, enzymes and perfumes (such as ALL-Free and Clear or Earth-Rite) on  any clothing that comes in contact with your vulva such as your underwear, exercise clothes, towels, or pajama bottoms. Use 1/3 to 1/2 the suggested amount per load. Other clothing may be washed in the laundry soap of your choice.  Do not use a fabric softener in the washer or dryer on these articles of clothing. If you do use dryer sheets with the rest of your clothes, for any loads, you must hang dry your underwear, towels, and any other clothing that comes in contact with
your vulva.  Stain Removing Products. Soak and rinse in clear water all underwear and towels on
which you have used a stain removing product. Then wash in your regular washing cycle. This removes as much of the product as possible.

CLOTHING
Wear white all cotton underwear, not nylon with a cotton crotch. Cotton allows air in and moisture out.  Avoid pantyhose. If you must wear them, either cut out the diamond crotch (if you cut out the crotch be sure to leave about 1/4 to 1/2 inch of fabric from the seam to prevent running) or wear thigh high hose. Many stores now carry thigh high nylons. Avoid tight clothing, especially clothing made of synthetic fabrics. Remove wet bathing and exercise clothing as soon as you can.
 
BATHING AND HYGIENE
Avoid bath soaps, lotions, gels, etc. which contain perfumes. These may smell nice but can be irritating. This includes many baby products and feminine hygiena products marked "gentle" or "mild". Dove-Hypoallergenic, Neutrogena, Basis, or Pears are the soaps we suggest. Do not use soap directly on the vulvar skin just warm water and your hand will keep the vulvar area clean without irritating the skin.  Avoid all bubble baths, bath salts and scented oils. You may apply a neutral
(unscented, non-perfumed) oil such as Keri Oil to damp skin after getting out of the tub or shower. Do not apply oils directly to the vulva. Do not scrub vulvar skin with a washcloth, washing with your hand and warm water is enough for good cleaning.  Pat dry rather than rubbing with a towel. Or use a hairdryer on a cool setting to dry the vulva.  Baking Soda soaks. Soak in lukewarm (not hot) bath water with 4-5 tablespoons of baking soda to help soothe vulvar itching and burning. Soak 1 to 3 times a day for 10-15 minutes. Use white, unscented toilet paper. If paper has a perfumed scent or lotion, avoid using it. Avoid all feminine hygiene sprays, perfumes, adult, or baby wipes. Pour
lukewarm water over the vulva after urinating if urine causes burning of the skin. Pat dry rather than rubbing with a towel. Avoid the use of deodorized pads and tampons. Tampons should be used when the blood flow is heavy enough to soak one tampon in four hours or less. Tampons are safe for most women, but wearing them too long or when the blood flow is light may result in vaginal infection, increased discharge, odor, or toxic shock syndrome. Also, use only pads that have a cotton liner that comes in contact with your skin. Avoid all over the counter creams or ointments, except A&D Ointment. Ask your health care provider first. Small amounts of A&D Ointment may be applied to your vulva as often as needed to protect the skin. It may also help to decrease skin irritation during your period and when you urinate. Brands that have been helpful are the Fougera brand, Toys R Us
brand, Rugby brand, or NMC brand.

DO NOT DOUCHE. Baking soda soaks will help rinse away extra discharge and help with odor.

DO NOT SHAVE the vulvar area.
Some women may have problems with chronic dampness. Keeping dry is important. Choose cotton fabrics whenever you can.  Keep an extra pair of underwear with you in a small bag and change if you become damp during the day at work/school. Gold Bond Powder or Zeosorb Powder may be applied to the vulva and groin area one to two times per day to help absorb moisture. Dryness and irritation during intercourse may be helped by using a lubricant. Use a small amount of a pure vegetable oil such as Crisco (solid or oil). The vegetable oils contain no chemicals to irritate vulvar/vaginal skin. Vegetable oils will rinse away with water and will not increase your chances of infection. Water-based products like K-Y Jelly are helpful, but may tend to dry before intercourse is over and also contain chemicals that can irritate your vulvar skin. It may be helpful to use a non-lubricated, non-spermicidal condom, and use vegetable oil as the lubricant. This will help keep the semen off the skin which can decrease burning and irritation after intercourse.

BIRTH CONTROL OPTIONS
The new low-dose oral birth control pills do not increase your chances of getting a yeast infection.
Lubricated condoms, contraceptive jellies, creams, or sponges may cause itching and burning. Ask your health care provider for help. The use of latex condoms with a vegetable oil as a lubricant (#14 above) is suggested to protect your skin. Oil based lubricants may affect the integrity of condoms when used for birth control or prevention of sexually transmitted diseases. Our experience has not  found this to be a problem with vegetable based oils. However,the Centers for Disease Control recommends that condoms not be used with any oil based lubricants for birth control or prevention of sexually transmitted disease.

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The Vulvar Self-Exam

Just as you would examine your breasts or skin for changes, you should examine your vulva. Many diseases of the vulva have similar symptoms. The vulvar self-exam will help you to be aware of any changes in the vulvar area that may need ongoing evaluation. Some changes in the vulva may mean cancer. Tell your physician if you see any changes or have symptoms that don?t go away, such as itching, bleeding or discomfort. If a problem does occur, catching it at an early stage--when treatment is most successful--is in your best interest. Learning how to do a vulvar self-exam can best accomplish this.

1. Wash your hands carefully before you begin.
Lie or sit up in a comfortable position with good lighting and a hand mirror (a magnifying mirror may work best). It may help to prop up your back with pillows, or you can squat or kneel. Finding a comfortable position is important so you can clearly see the vulvar area, perineum, and anus. First, just look and learn. Things may appear different from what you expect, and that does not necessarily mean they are abnormal.

2. Gently separate the outer lips of the vulva. Look for any redness, swelling, dark or light spots, blisters, bumps or other unusual colors.

3. Next, separate the inner lips and look carefully at the area between them for the same changes. Also, look at the entrance of the vagina.

4. Gently pull back the skin covering the clitoris and examine the area under the hood at the tip of the clitoris.

5. Be sure also to inspect the area around the urethra, the perineum, the anus, the outside of the labia majora and the mons pubis.


SOME SUGGESTED VULVAR PAIN & ITCHING MEASURES

The vulva is the external genitalia in the female. The skin of the vulva can be quite sensitive. Because it is moist and frequently subjected to friction while sitting and moving, this area can be easily injured. There are various strategies that can be used to prevent irritation and allow the vulva to heal. Keeping this area dry can accelerate healing. Chemicals found in toilet tissues, laundry soaps and detergents that come in contact with the vulva can cause irritation. Avoiding contact with potential irritants that contain chemicals is important. Fabric softeners in undergarments, chemicals in deodorant soaps, bubble baths, feminine hygiene spray and panty liners etc., can all cause irritation to the vulva. The following recommendations are specific measures that can help minimize vulvar irritation.

Wear white 100% cotton underwear, and do not wear pantyhose, tights, or other close-fitting clothes. Enclosing this area with synthetic fibers holds both heat and moisture in the skin, conditions which potentiate the development of secondary infections. Tight-fitting clothes may also increase your symptoms of discomfort.

After washing underwear, put it through at least one whole cycle with water only. Some women have suffered needlessly from irritants in detergents whose residue was left in clothes by incomplete rinsing. Rinsing clothes thoroughly is more important than which detergent is used although to be on the safe side, the milder the soap, the better. Wash new underwear before wearing. Fabric softeners and dryer sheets should not be used.

Rinse skin off with plain water frequently. Use tap water, distilled water, sitz baths, squirt bottles, or bidets. Pat the skin gently dry, or dry with a cool setting on a hair dryer if you prefer.

Use very mild soap for bathing. It is best not to use any soaps on the vulva. The vulva should be rinsed with warm water. Bars of soap such as Neutrogena unscented face soap, Basis, Pears (made in England), and castile soap with olive oil (Conti) are gentle to the other skin areas. They are found at pharmacies or health food stores. Remember that frequent baths with soaps may increase the irritation. You cannot wash away your symptoms.



A compress of oiled Aveeno (a powdered oatmeal bath treatment) has been recommended by some. It is placed over the vulva three to four times a day. Put two tablespoons of Aveeno in one quart of water. Mix in a jar and refrigerate. This is often helpful after intercourse or when symptoms of burning and itching are present.

Use lubricants suggested by your physician to make intercourse more comfortable. Astroglide is a product with a natural lubricating action. Other water-soluable lubricants include Lubrin, Moisturel, Replens and KY Jelly. Vegetable oils such as olive oil also provide lubrication.

Use 100% cotton menstrual pads and tampons. Many women with vulvar pain experience a significant increase in irritation and pain every month when they use commercial paper pads or tampons. This monthly increase in pain can often be reduced by using 100% washable and reusable cotton menstrual pads. Some disposable cotton pads are available. Pure cotton tampons are also available.

Don?t sit or remain in a wet bathing suit for prolonged periods.

Avoid condom and spermicidal creams or gels if they cause increased irritation of sensitive tissues.

Additionally, it is often recommended that the vulva is left uncovered at night (i.e. no underwear) to allow adequate exposure to the air.

Many of the disease processes will require a biopsy to diagnose your condition. If a biopsy is performed during your visit, after care is important. Keep the area clean and dry. Avoid application of creams or ointments to the biopsy site. Sitz baths twice a day for three or four days following the biopsy will aid in healing. If increase redness, severe pain, heavy discharge, or heavy bleeding occurs at the biopsy site, call for further instrucitons. Avoid intercourse until the biopsy site is healed.

Adapted From:

The Vulvar Pain Foundation, "Natural and Prophylactic Measures Suggested", Vulvar Pain Newsletter 1993: Spring: 5-6

The Interstitial Cystitis Association Vulvar Pain handout


Vulvar Pain

A large proportion of the patients seen at the University of Michigan Center for Vulvar Diseases have vulvar pain. The following information is a comprehensive review of the different aspects of vulvar pain.

Definition: Throughout history many different terms have been used to describe vulvar pain. Vestibulodynia (previously called vulvar vestibulitis) consists of pain at the entranceway to the vagina. Vulvar dysesthesia (previously called dysesthetic vulvodynia) consists of a burning or pain on the vulva present in areas outside of the vestibule. Patients with dysesthetic vulvodynia may also have burning or pain at the vestibule. Symptoms consist of burning, stinging, irritation or rawness. Other terms used to describe the vulvar discomfort include: itching, stretching and throbbing.

Causes: Vulvar pain can be divided into two major categories: those with a known cause and those where a cause cannot be identified.

Pain with a known cause

Vulvar pain can be associated with simple chemical irritation, so-called contact dermatitis. Common irritants include soaps, shampoos, scented toilet paper, douches, fabric softeners and scented menstrual pads. It can also be caused by certain medications which have been used to treat vulvar problems. Various infections can also be causes of vulvodynia. Women with chronic vulvar and vaginal yeast infection can frequently have vulvar itching and burning. Often symptoms worsen before menses as the changes in ovarian hormone production and the local vaginal environment can favor yeast growth during that time. Recurrent herpes simplex virus infection can also cause vulvar pain. These infections wax and wane, often starting at stressful times and lasting anywhere from a couple of days to a week or more. Irritation of the nerves which supply the vulva can also cause vulvar pain. This type of vulvar pain may radiate from the vulva to the perineum and into the groin and thigh. Some patients have lower back problems which may be associated with this pain also. Vulvar pain also results from injury (i.e. childbirth, vaginal/vulvar trauma).

Pain without a known cause

Physical examination of this group of patients does not demonstrate any visible abnormalities. It is important to understand that vulvar pain with a normal appearing vulva does not mean that there is not a cause of the vulvar discomfort, rather a cause cannot be identified. Despite the fact that a cause of vulvar pain cannot be established in all cases, two things are important to keep in mind: 1) frequently the discomfort associated with vulvar pain can be controlled, and 2) it is clear that there is generally no relationship between vulvar pain and the subsequent development of vulvar cancer.

Pain on the Vestibule of the Vulva: Some women present with distinct tenderness and at times erythema (redness) in the vestibule. Intercourse is painful and, in some cases, impossible due to the severe pain. Typically, women with pain on the vulvar vestibule present with a varying duration of symptoms from weeks to several years. Symptoms often begin after experiencing some type of infection or trauma followed by difficulty with intercourse. Burning, stinging, irritation or rawness at the vaginal opening with intercourse are the most common complaints. This same sensation may also be experienced when placing tampons or touching in the area of the vestibule. Women with severe symptoms may also feel this same sensation when riding a bicycle, horseback riding or jogging. In more extensive cases, some patients experience these symptoms while sitting, walking or even without any movement. Typically, these women have seen a number of health care practitioners and have had numerous attempts at therapy with topical or oral antifungals, topical steroids, and antibiotics. Usually, these provide no long term relief.

The cause(s) of pain on the vestibule is not known. Early studies implicated the human papilloma virus as a cause, but this is no longer considered to be associated with vulvar vestibulitis. There appears to be a small subset of women who have chronic yeast infection as a cause of their vestibular pain, and long-term yeast suppression has met with promising results in these women. There is also another group of women who appear to have both pain at the vulvar vestibule and interstitial cystitis (a condition of the bladder which causes urinary frequency and burning). Because the vestibule and a portion of the bladder are the only two tissues in the body derived from the same embryologic tissue, investigators have begun to look for an irritant which might affect both of these structures. To date, no causative agent has been proven. Some patients relate the onset of their pain to a gynecological or obstetric event. It is important to recognize that there is absolutely no evidence that vestibular pain is a sexually transmitted disease, therefore, it cannot be contracted from or given to your sexual partner.

Treatment: Treatment of vulvar pain conditions is confounded by the fact that the cause is unknown in a great majority of cases, and the best treatment will likely come only when the cause has been identified. Where chronic yeast infection can be identified, suppression of yeast growth can be gratifying. Other topical therapies such as steroids and antibiotics have not met with success. Topical anesthetic agents (e.g., viscous or liquid xylocaine) can sometimes help with temporary relief. The greatest success in treating vulvar pain conditions comes from using a group of medications called antidepressants. This group of drugs (e.g., Elavil?, Pamelor?, Norpramin?) has been used to treat many chronic pain conditions where a cause cannot be found. The TCA (tricyclic antidepressant) may work by inhibiting certain pain fibers which supply (innervate) the vulva. This in turn can prevent these specific nerves from transmitting the message to the brain where it is processed and pain is perceived. Another group of drugs, anticonvulsants, are used as treatment for other chronic pain conditions and may be used for vulvar pain. The use of the CO2 laser has not been successful, and in some cases, the results of treating vestibulitis with the CO2 laser have worsened the pain.

It has been suggested burning on the vestibule may be associated with elevated levels of oxalates in the urine. A group of investigators have described patients whose symptoms improve while on a low oxalate diet combined with taking a mineral called calcium citrate. Calcium citrate may decrease calcium oxalate formation in the urine, which is proposed to cause vulvar pain. (See page 21) Surgical excision of the vulvar vestibule may be offered as treatment for pain on the vestibule if conservative measures have failed.

There is no standard treatment for patients with vulvar pain since there are likely multiple causes. Treatment suggested will depend on your individual case. Modifications of treatments and medication dosages may need to be altered if your symptoms vary. The doctors and nurses at the Center for Vulvar Diseases will discuss your individual case with you and develop an individual treatment plan based on your history, prior treatments and severity of symptoms.

Vulvar pain can be a difficult process to treat. Improvement may take weeks to months (even years) of long-term treatment. Spontaneous remission of symptoms has occurred in some women, while with others multiple attempts with medical management has proven unsuccessful in relieving 100% of symptoms.


IMPORTANT THINGS TO REMEMBER
ABOUT VULVAR PAIN
 



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