The IC Underground

DALLAS – Nov. 19, 2009 – Contrary to current thinking, a condition called gastroesophageal reflux disease (GERD) might not develop as a direct result of acidic digestive juices burning the esophagus, UT Southwestern Medical Center researchers have found in an animal study.

Rather, gastroesophageal reflux spurs the esophageal cells to release chemicals called cytokines, which attract inflammatory cells to the esophagus. It is those inflammatory cells, drawn to the esophagus by cytokines, that cause the esophageal damage that is characteristic of GERD. The condition is manifested by symptoms such as heartburn and chest pain.

Research by Drs. Stuart Spechler and Rhonda Souza suggests that gastroesophageal reflux disease might actually be an immune-mediated injury rather than a direct result of acidic digestive juices burning the esophagus.
“Currently, we treat GERD by giving medications to prevent the stomach from making acid,” said Dr. Rhonda Souza, associate professor of internal medicine at UT Southwestern and lead author of the study appearing the November issue of Gastroenterology. “But if GERD is really an immune-mediated injury, maybe we should create medications that would prevent these cytokines from attracting inflammatory cells to the esophagus and starting the injury in the first place.”

In the study, researchers created GERD in rats by connecting the duodenum to the esophagus. This operation allows stomach acid and bile to enter the esophagus. Researchers were surprised to learn that esophagitis didn’t develop for a number of weeks after the operation.

“That doesn’t make sense if GERD is really the result of an acid burn, as we all were taught in medical school,” said Dr. Stuart Spechler, professor of internal medicine at UT Southwestern and senior author of the study. “Chemical injuries develop immediately. If you spill battery acid on your hand, you don’t have to wait a month to see the damage.”

About 40 percent of Americans suffer symptoms of GERD at some point, and 20 percent on a weekly basis, Dr. Souza said. Over the long term, GERD could eventually lead to esophageal cancer.

Previous studies had shown that if an animal esophagus is perfused with highly concentrated acid, esophageal damage develops quickly. In humans, however, the large majority of reflux episodes do not contain such highly concentrated acid, Dr. Souza said.

“In animal models of reflux esophagitis designed to mimic the human disease, researchers hadn’t looked at the early events in the development of esophageal injury,” Dr. Souza noted. “Most of those investigators have been interested in the long-term consequences of GERD, and we found virtually no published data about what happens later that induces gastroesophageal reflux.”

Dr. Souza, who is also a staff physician at the Dallas Veterans Affairs Medical Center and part of the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern, and Dr. Spechler, chief of gastroenterology at the Dallas VA, said the method they used to produce GERD in rats is a reasonable representation of how GERD develops in humans – acidic digestive juices from the stomach surge into the esophagus.

Soon after the operation, they expected to see the death of surface cells of the esophagus, and they expected to see the injury progress later to the deeper layers. Instead, they found the opposite. Three days after the surgery, there was no damage to surface cells, but the researchers did find inflammatory cells in the deeper layers of the esophagus. Those inflammatory cells didn’t rise to the surface layer until three weeks after the initial acid exposure.

The next step for researchers is to conduct additional studies in humans.

Other UT Southwestern researchers involved in the study included Dr. Xiaofang Huo, postdoctoral researcher in internal medicine; Dr. Vivek Mittal, postgraduate trainee in internal medicine; Dr. Susanne Carmack, postgraduate trainee in pathology: Dr. Huiying Zhang, instructor of internal medicine; Dr. Robert Genta, clinical professor of pathology and internal medicine; Dr. Kathy Hormi-Carver, assistant professor of internal medicine; and Dr. Xi Zhang and Dr. Chunhua Yu, both research associates in internal medicine.

The study was supported by the Dallas VA Medical Center and the National Institutes of Health.

Visit http://www.utsouthwestern.org/digestive to learn about UT Southwestern’s clinical services for digestive disorders.

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FDA Public Health Notification: Serious Complications Associated with Transvaginal Placement of Surgical Mesh in Repair of Pelvic Organ Prolapse and Stress Urinary Incontinence

Issued: October 20, 2008

Dear Healthcare Practitioner:

This is to alert you to complications associated with transvaginal placement of surgical mesh to treat Pelvic Organ Prolapse (POP) and Stress Urinary Incontinence (SUI). Although rare, these complications can have serious consequences. Following is information regarding the adverse events that have been reported to the FDA and recommendations to reduce the risks.

Nature of the Problem

Over the past three years, FDA has received over 1,000 reports from nine surgical mesh manufacturers of complications that were associated with surgical mesh devices used to repair POP and SUI. These mesh devices are usually placed transvaginally utilizing tools for minimally invasive placement.

The most frequent complications included erosion through vaginal epithelium, infection, pain, urinary problems, and recurrence of prolapse and/or incontinence. There were also reports of bowel, bladder, and blood vessel perforation during insertion. In some cases, vaginal scarring and mesh erosion led to a significant decrease in patient quality of life due to discomfort and pain, including dyspareunia.

Treatment of the various types of complications included additional surgical procedures (some of them to remove the mesh), IV therapy, blood transfusions, and drainage of hematomas or abscesses.

Specific characteristics of patients at increased risk for complications have not been determined. Contributing factors may include the overall health of the patient, the mesh material, the size and shape of the mesh, the surgical technique used, concomitant procedures undertaken (e.g. hysterectomy), and possibly estrogen status.

Recommendations

Physicians should:

Obtain specialized training for each mesh placement technique, and be aware of its risks.

Be vigilant for potential adverse events from the mesh, especially erosion and infection.

Watch for complications associated with the tools used in transvaginal placement, especially bowel, bladder and blood vessel perforations.

Inform patients that implantation of surgical mesh is permanent, and that some complications associated with the implanted mesh may require additional surgery that may or may not correct the complication.

Inform patients about the potential for serious complications and their effect on quality of life, including pain during sexual intercourse, scarring, and narrowing of the vaginal wall (in POP repair).

Provide patients with a written copy of the patient labeling from the surgical mesh manufacturer, if available.

Additional patient information can be found on the following FDA Consumer website at http://www.fda.gov/cdrh/consumer/sur…sh-popsui.html.

Reporting Adverse Events to FDA

FDA requires hospitals and other user facilities to report deaths and serious injuries associated with the use of medical devices. If you suspect that a reportable adverse event was related to the use of surgical mesh, you should follow the reporting procedure established by your facility.

We also encourage you to report adverse events related to surgical mesh that do not meet the requirements for mandatory reporting. You can report directly to MedWatch, the FDA Safety Information and Adverse Event Reporting program online at www.fda.gov/MedWatch/report.htm, by phone at 1-800-FDA-1088, or obtain the fillable form online at www.fda.gov/MedWatch/getforms.htm, print it out and fax to 1-800-FDA-0178 or mail to MedWatch, 5600 Fishers Lane, Rockville, MD 20852-9787.

Getting More Information

If you have questions about this notification, please contact the Office of Surveillance and Biometrics (HFZ-510), 1350 Piccard Drive, Rockville, Maryland, 20850, Fax at 240-276-3356, or by e-mail at phann@cdrh.fda.gov. You may also leave a voice mail message at 240-276-3357 and we will return your call as soon as possible.

FDA medical device Public Health Notifications are available on the Internet at http://www.fda.gov/cdrh/safety.html. You can also be notified through e-mail each time a new Public Health Notification is added to our web page. To subscribe to this service, visit: http://service.govdelivery.com/servi…?code=USFDA_39 .

Sincerely,

Daniel G. Schultz, MD
Director
Center for Devices and Radiological Health
Food and Drug Administration
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WASHINGTON, D.C., October 20, 2008 – The National Association of Nurse Practitioners in Women’s Health (NPWH) today announced the launch of Interstitial Cystitis Awareness Week, October 20-24, 2008. This week of activities, planned in partnership with the Interstitial Cystitis Network (ICN) with the support of Ortho Women’s Health & Urology™, aims to raise awareness of this painful bladder condition and demonstrates the transformative power and support that new communications technologies can provide for small patient groups.

An estimated one million Americans suffer from interstitial cystitis (IC), a painful, and often debilitating, chronic condition in which the bladder lining becomes irritated and inflamed. The condition mostly affects women, who make up an estimated 90 percent of IC patients. “Imagine you have a deep paper cut that you pour an acidic liquid onto, continuously. That is only a fraction of what many IC patients feel in their bladder and pelvis on a regular basis. Some IC patients describe throbbing, stabbing pains and muscle spasms that take their breath away,” says Susan Wysocki, President and CEO, National Association of Nurse Practitioners in Women’s Health.

NPWH and ICN share a strong commitment to raising awareness of IC because it is neither a well-known nor well-accepted medical condition. The symptoms of IC – pain in the pelvic area, going to the bathroom urgently or frequently, and pain during or after sex – are easily mistaken for other pelvic conditions such as endometriosis, recurrent urinary tract infections and overactive bladder.

“Research shows that most patients consult at least five physicians, including psychiatrists, over a period of more than four years before being diagnosed with interstitial cystitis. This is devastating. No one should have to suffer in silence for so long,” adds Wysocki. “By increasing awareness of the three symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call ‘the 123 of IC’, we aim to help people ask ‘could it be IC?’ sooner.”

Treatment approaches differ from one patient to the next, but most IC patients find success with a combination of dietary modifications and medication. IC patients should avoid acidic foods and drinks as well as carbonated, caffeinated, and alcoholic beverages. Others have success with medical therapies like ELMIRON® (pentosan polysulfate sodium), the only FDA-approved oral medication to relieve the bladder pain or discomfort associated with IC. In addition, medications to ease pain, reduce night-time bathroom visits, aid in sleep, and block the effects of allergens may also benefit IC patients.

New ways to connect a small determined patient community

Given the complications of getting diagnosed, IC patients have gone online in large numbers in recent years, seeking support and information from other patients. There are currently hundreds of national and state-based IC support groups online as well as groups on MySpace, Facebook, Revolution Health, DailyStrength, and many other online communities.

“Providing access to information is the number one way to ensure that IC patients get the support they need,” says Jill Osborne, founder of the Interstitial Cystitis Network and the first to recognize the IC community’s need for online support and information. “The ICN is really pleased to be a part of IC Awareness Week 2008 – a week full of online videos, webinars, podcasts, and other digital communications, with important information on how to diagnose, treat, and live with IC. This would not have been possible five years ago.”

IC Week 2008 activities started in September with a grassroots viral campaign to spread awareness of ‘123 IC’. The campaign attracted almost 1300 signatures to the petition of support and encouraging words from 389 patients across 45 states.

This week, NPWH, ICN, and Ortho Women’s Health & Urology™ invite you to participate in the following activities:

Monday, October 20
• PBS “Healthy Body, Healthy Mind: Interstitial Cystitis” special begins to air nationally. Check local listings for more information
• 123 IC contest winners & 2008 IC Ambassadors announced on www.AllAboutIC.com
• Updates to All About Interstitial Cystitis groups on Facebook and MySpace

Tuesday, October 21
• IC Week Podcast: “Interstitial Cystitis 101” on www.AllAboutIC.com

Wednesday, October 22
• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on www.AllAboutIC.com

Thursday, October 23
• IC Week Podcast: “When the going gets tough, Don’t let IC isolate you!” with ICN’s Jill Osborne on www.AllAboutIC.com

Friday, October 24
• Check out real patient stories and encouraging words on www.AllAboutIC.com

For more information, please visit: www.AllAboutIC.com
Ortho Women’s Health & Urology™ is a Division of Ortho-McNeil Pharmaceutical, Inc. AllAboutIC.com is published by Ortho-McNeil Pharmaceutical, Inc.

About NPWH
The National Association of Nurse Practitioners in Women’s Health was founded in 1980. NPWH’s mission is to assure the provision of quality health care to women of all ages by nurse practitioners. To this end, NPWH works with a wide range of individuals and groups within nursing, medicine, the healthcare industry and the women’s health community.

About ICN
The ICN is an online resource owned and managed by Jill Osborne. The goal of ICN is to provide valuable and timely information and support resources for patients, physicians and researchers who are working to further the IC cause. ICN currently reaches more than 300,000 IC patients each month.

* Ortho Women’s Health & Urology™ is the sole sponsor of Interstitial Cystitis Awareness Week 2008. NPWH and ICN were provided funding to cover the time related to their involvement in these program activities to raise awareness of IC.

About Ortho Women’s Health & Urology™
Ortho Women’s Health & Urology™, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., is a leader in the fields of women’s health and urology, celebrating more than 75 years of partnering with women. Ortho Women’s Health & Urology™ is committed to helping people live healthier lives and to provide products to help meet the needs of healthcare professionals and patients. For more information on these products, birth control, bladder health or general women’s health issues, please visit www.orthowomenshealth.com.

This is yet another reason, if not proof, that Chinese manufacturers appear to place $$ higher than public health and safety. That ANYONE would be foolish enough to put melamine into a human consumable.. this AFTER how many hundreds of pets were killed last year by the same contaminant… is just shocking. I remain appalled and completely unwilling to trust any consumable product from China. Eat them at your own peril!

The real question, though, is how will China punish these individuals now that Chinese citizens have died. Then, based upon that, how should they treat those who added fake heparin to create the massive recall earlier this year that resulted in many more human fatalities. - Jill

FDA issued a Health Information Advisory to consumers and healthcare professionals regarding milk-based infant formula manufactured in China. The Chinese manufactured infant formula may be contaminated with melamine. Melamine artificially increases the protein profile of milk and can cause kidney diseases. Currently, no Chinese manufacturers of infant formula have fulfilled the requirements to sell this product in the United States. FDA officials are investigating whether or not infant formula manufactured in China is being sold in specialty markets which serve the Asian community. Caregivers should not feed infant formula manufactured in China to infants and should replace any product from China with an appropriate infant formula manufactured in the United States. Individuals should contact their health care professional if they have questions regarding their infant’s health or if they note changes in their infant’s health status.

Read the entire 2008 MedWatch Safety Summary, including a link to the FDA Health Information Advisory regarding the above issue:

http://www.fda.gov/medwatch/safety/2008/safety08.htm#formulaChina

We can’t say it enough, there are thousands of non-profit organizations desperately looking for funds. Some are legitimate, others are less so. Some send their pitches by regular mail, others by email. Some dedicate the majority of their funds for direct services (i.e. by funding research), others are top heavy and use much of that money to pay staff.

The Better Business Bureau has an excellent guide that will help you determine if the charity you would like to support is functioning in a prudent and healthy way. They ask you to evaluate how a non profit governs their organization, how they spend their money, their truthfulness and their willingness to disclose basic information to the public.

How an organization is managed is vital. We want to know if the Board of Directors is fulfilling its role and responsibiilities. Are they evaluating the performance of the organization? Are they reviewing the budget?? Are they providing performance reviews of the Executive Director?

We want to know if that board is meeting regularly (i.e. a minimum of three times a year). In some states (i.e. California), Board meetings are also required to be open to the public and organization members or donors. One simple way to check? Do they provide a calendar of board meetings on their websites.

Most of all, we want to ensure that the Board does not have a financial bias or interest in the organization. Normally and in most organizations, board members are generally volunteers. The BBB suggests that “Not more than one or 10% (whichever is greater) directly or indirectly compensated person(s) serving as voting member(s) of the board. Compensated members shall not serve as the board’s chair or treasurer.”

In addition to the governance of the group, we also want to know if they are spending our donations wisely. The BBB suggests that 65% of the budget should be directed towards program activities. Some organizations are very top heavy with 50% or more of their budget going to salaries and administrative overhead rather than programs. This is something to be aware of and to evaluate if you want to make long term donations to any group.

Last, but certainly not least, we want to make sure that this organization is functioning as transparently as possible. Conducting business behind closed doors, in my opinion, creates doubt for a publicly funded non-profit organization. We expect financial statements/annual reports to be available directly on their websites as well as their IRS form 990’s. The IRS Form 990 is the best document that you can use to evaluate an organization because it breaks down the budget indepth, provides salary figures, board members who are compensated, how much they receive etc. etc. Always remember that tax law requires that the 990 be made available to you at your request. If it is not provided, you can file a complaint with the IRS and we strongly suggest that you do so.

So, this year, as you receive yet more letters, emails, etc. asking for donations, we hope that you’ll take a moment to evaluate that organization and ask yourself if they are using your donations wisely. If not, there are plenty of other groups that may be far more deserving.

For more information on charities, please visit the National Charities Information Bureau at: http://www.give. org

To review some IRS Form 990’s related to various IC groups, please visit: http://www.guidestar.org. You’ll have to register (it’s free). To download the IRS forms, look for the “beta version” links… which give you direct access to the forms. You might find yourself surprised.

We, at the ICN, believe that your donor dollars would be the most appreciated when given directly to IC research centers, such as the University of Maryland. We offer an ICN Donation and Giving Guide that lists promising research centers and projects. http://www.ic-network.com/mgt/donations.html

My head almost popped off this morning as I was reading the newspaper. The great cheapskates in the world (i.e. businesses trying to save money by using cheap products from China), have, yet again, put our health at risk. How, you ask???

If you haven’t been following the recall of the blood thinner Heparin (yes, Heparin is also used in rescue instills) that began several weeks ago… you should. Baxter International and the FDA began noticing significantly higher rate of side effects with a recent lot of products. Normally, they received 60 or so complaints a year… but, in just January 2008, they had 150 reported side effects….. such a significant increase that it requires much further investigation. Apparently nineteen patients have now died.

According to the Baxter press release of January 28, 2008 … adverse reactions have included: stomach pain or discomfort; nausea; vomiting; diarrhea; low blood pressure; chest pain; fast heart rate; dizziness; fainting; unresponsiveness; shortness of breath; tachycardia; drug ineffectiveness; burning sensation; redness or paleness of skin; abnormal sensation of the skin, mouth, or lips; flushing; increased sweating; decreased skin sensitivity; headache; feeling unwell; restlessness; watery eyes; throat swelling; thirst; and difficulty opening the mouth. Some of these reactions may be severe or life-threatening. Rather chilling, eh? Read on!

Today, the Washington Post reported that testing of the heparin has revealed contamination of 5% to 20% of every sample tested. The contaminant is apparently a molecule similar to heparin that normal tests used by the industry don’t detect. It was a new, more sensitive testing method which found the contaminant.

The question is… was the contaminant part of a botched production/manufacturing method or was it “intentionally added to reduce costs.” Gee, doesn’t that sound familiar?? It should. Remember the melamine debacle last year where it was discovered that some suppliers in China were adding plastic melamine to artificially raise protein levels of products to be used in pet food?? Now, can you imagine a similar circumstance for drugs that are then shipped around the world?? You should.

According to the New York Times and CNN, Baxter International gets the active ingredient for Heparin from China… specifically a manufacturing plant outside of Shanghai. Heparin is made from pig intestine. The FDA also admits that they have NEVER inspected that plant.

Baxter and FDA representatives are now scrambling for answers. Baxter Chief Medical Officer Janet Woodcock said “We don’t know how… this compound got into the heparin but we are aggressively investigating it.” Baxter has also recalled all active ingredients “sourced from China that showed signs of possible contamination.”

Yes, I must clearly state that they are still unsure of exactly what is causing the adverse events. The FDA suspects that it is the contaminant but that IS speculation at this point. I have a logical suspicion. Given the absolutely terrible water quality and sewage treatment (or lack thereof) problems in China, could this have come from the water and/or foods fed to the pigs? Clearly, additional research is needed and must come quickly before we put yet more lives in danger.

I was dismayed to learn that drug manufacturing and/or the development of drug active ingredients is a fast growing industry in China. Given their track history of environmental contamination and track record of putting cash ahead of product quality and safety, I think we’re foolish to purchase anything from China that is meant to be consumed and/or placed in our bodies.

Maybe we need new legislation that requires a disclosure of where the drugs are source from. If I could see “Some ingredients imported” or “Made in China” on the label, I wouldn’t buy the product. I’d rather buy a product made from ingredients found in the USA that supported the US farmers, employees and, most of all, complied with our much better product safety and testing standards. We do have a thriving pig industry in the USA, don’t we??

Nuff said…

Jill O.

References:

1- http://www.baxter.com/about_baxter/n…rin_multi.html
2 - http://www.cnn.com/2008/HEALTH/03/05…ant/index.html
3 - http://www.nytimes.com/2008/02/29/us/29heparin.html?hp
4 - http://www.washingtonpost.com/wp-dyn…ail/components
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I’m repeating here what I just offered by PM to an IC patient who was frustrated with a local urologist who wouldn’t offer more than the basic treatments. I hope this helps us all understand just how these clinics differ, etc. - Jill

Local Urology Clinics
The smaller urology offices in smaller towns or just small clinics run by one or two doctors are usually the first line of intervention but they often don’t have the funding, resources, experience and/or knowledge of newer therapies. They often stick to the conventional Elmiron, DMSO approach to treating IC though many more are finally using rescue instillations with great success.

Regional Urology Clinics
Thus, we then look for larger clinics in more urban areas that have a strong interest in IC, female urology and/or pelvic pain. They tend to have five or more urologists on staff, one of which is usually interested in chronic bladder disorders or female urology. They may also have a pelvic floor specialist that they refer patients too. These clinics usually have the resources to attend more conferences and often offer the traditional AND more experimental therapies, such as botox. Dr. Jay Burstein and the DeKalb Clinic (Illinois) is a good example of a regional urology clinic.

University Medical Centers & Medical Schools
We then look at University run Medical Centers and Schools which function, primarily, as referral centers for the more complex cases that the smaller clinics can’t or won’t handle.

The advantage of a university medical center urology clinic is that they see far more patients, have more experience with diagnostic methods (inotherwords, they often do a cystoscopy with less pain and discomfort because they have so much more experience.) Stanford University, for example, the primary referral center for Northern California and they are superb at diagnosis, assessment and offer a wide variety of treatments available.

Universities are also far more heavily involved in some IC clinical trials that are testing new potential treatments for IC. Many pass rigorous reviews from the National Institutes of Health that prove that the doctors have sufficient knowledge, staff and resources to conduct studies. These researchers are almost always found at the big IC conferences and thus are on the absolute cutting edge of IC.

IC Specific Clinics
Though few and far between, there are clinics devoted specifically to IC/pelvic pain. Dr. Moldwin, for example, does run an Interstitial Cystitis Center at the Long Island Jewish Medical Center. It doesn’t pay all the bills though and may just devote two days a week to IC though some centers do offer daily instillation therapy. Most urologists see a wide variety of patients with other conditions besides IC.

What I look for, often, are doctors who attend conferences, conduct some research and facilitate IC support groups because that tells me that that doctor really understands the support and care that IC patients need.

Hope that helps!

Jill

Imagine having an implant done. You’re told “You’ll need constant medical care.” You’re told “The Device will need to be adjusted occasionally.” And then your finances became so challenged that you’re forced to go on Medicaid or lose your insurance entirely. Can you still receive care?? Apparently not if you’ve received Interstim and you live in Florida.

One IC patient has tried contacting dozens of doctors to find atleast one who would adjust her Interstim device and they’ve all said that they don’t take her insurance, the state run Florida Medicaid program. She called the Patient Assistance Line and was told that it was her responsibility to find a doctor who would work with her insurance. Well, what is she supposed to do if NO doctors in the state who work with Interstim take Medicaid? So far, every doctor she’s contacted on the Medtronic list has said “No”… though she still has a few more to contact.

I don’t know about you but this infuriates me. If you were a candidate considering Interstim and were told “Oh yeah, if you ever lose your job and your forced to go on Medicaid … no doctor will maintain your device?” would you have it done?? Am I crazy??? Doesn’t the manufacturer have some responsibility in maintaining a diverse list of physician providers that will serve not only rich patients but also the poor??? God forbid a patient lose their insurance entirely. How can they possibly receive care for a device that requires constant care and monitoring.” Clearly, this may be a serious lapse in medical device industry.

Do you have an implant story to share?? Have you had difficulty finding someone to maintain your device?? Have you been discriminated against because you have Medicaid?? Please share your story!

Jill

When someone calls our office struggling with urethral burning, we usually go over five potential contributing factors. I thought that it would be nice to include these here as well!

(1) UTI
This is always worth mentioning because IC patients do get infections and the one typical symptom of a UTI is that sharp, burning sensation that occurs DURING urination. So, if you find that you’re biting your lip as you start to pee, it’s helpful to rule out infection… even with a home UTI kit.

(2) Paraurethral Gland Infection
Your urethra is roughly the size and width of your pinkie finger. About halfway up the urethra is a small, spongy gland that kind of wraps around the urethra that we call the paraurethral or periurethral gland. It’s a ‘homologue’ to the male prostate gland which means that it’s identical in cell structure to the male prostate. And, like the prostate gland, it’s known for becoming stagnant and infected. I’ve personally worked with several patients who have had urethral pain due to infections that had to be drained. They can often be felt as small bumps, roughly the size of a small pea, near the base & front of the vagina . Here’s an article that might be helpful: http://www.ic-network.com/newsroom/796.html

(3) Pelvic Floor Dysfunction
Pelvic floor muscle spasms or tension have a “burning” quality to the pain. When I have a bladder spasm or strong pelvic floor spasm, I often feel a burning sensation in the vagina almost like a yeast infection. Others have experienced symptoms closer to their urethra. If you haven’t had a pelvic floor assessment, it might be worth doing so we know that many IC patients struggle with tight, tender, burning muscles. PFD is VERY treatable! We have a great new CD from the WISH program at Beaumont Hospital (MI) for women with pelvic pain that you might find helpful. http://www.icnsales.com/Guided-Image…ain-p-104.html

(4) Urine Burn
If your urine feels hot and that it’s burning the tissues outside of your urethra (i.e. the vulva), we call this “urine burn” and you’re not alone. This is very common and that burning sensation is really more a sign of irritation. It can be dramatically reduced by spraying cool or room temperature water on your urethra/vulva during and after urination. We have some periwash bottles in our shop at: http://www.icnsales.com. Look under restroom supplies. They’re like $2.99. Just fill with water (no other chemicals please) and rinse each time you use the restroom. It works amazingly well!

(5) Chemical SensitivityIf I put on a pair of underwear washed in Cheer or Tide, within five minutes I’ll have vulvar and urethral discomfort and burning. Really!! I think it’s because our nerves have become more sensitized and thus vulnerable to chemicals & stimulation. We’ve got two great articles on this in our patient handbook that you might want to review. The most gentle bath soaps are either Basis or Dove bars of soap… or the Very Private Body Wash. For the laundry detergent, we suggest either Ivory Snow or Dreft and always rinse twice to get any and all soap residue off of your clothes. Also, you shouldn’t be using any fabric softeners or products that make your laundry smell better. These are very irritating to the crotch area.

IC Self Help Strategies - http://www.ic-network.com/handbook/slfhlp.html#soaps

The Case of the Poison Underwear - http://www.ic-network.com/handbook/selfhelp1005.html

Just a few ideas worth considering!

Jill
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