Date: August 31, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Topic: Understanding Vulvodynia & Vulvar Vestibulitis
Speaker: Joanne Yount, Executive Director, Vulvar Pain Foundation

<icnmgrjill> Greetings everyone and welcome to the ICN support chat for August 31, 1999. We have a very special guest speaker tonight. Her name is Joanne Yount and she is the Executive Director of the Vulvar Pain Foundation. I've placed the room under moderation so that we can begin the presentation. This means that only she and I can talk in the room. But you can submit your questions to any ICN volunteer and we will make sure that you get placed into the question queue.

You can also, of course, whisper to each other during the meeting. To whisper, just highlight a name and then write normally. To stop whispering just unclick their name!

As always, we want to remind you of our disclaimer. Informed IC patients understand implicitly that no internet source should be considered personal medical advice. Only your physician can and should make medical recommendations to you. So, if you hear something interesting during this chat, or in any of our message boards, as always, please talk to your doctor about it first. Let's go ahead and get started!

<icnmgrjill> Joanne, welcome to our meeting! It's very nice to have you here tonight!

<VPFjoanne> Thank you for inviting me!

<icnmgrjill> We have some questions & answers that we're going to do as a mini presentation and then we'll take your Q&A from the floor.

<icnmgrjill> What is vulvodynia and vulvar vestibulitis?

<VPFjoanne> Vulvodynia means "vulvar pain" from the Greek root words, vulv (vulvar) and odynia (burning). Vulvar vestibulitis means "inflammation of the vulvar vestibule." The vulvar vestibule is an oval shaped area of the genital skin tissue which surrounds and includes the opening of the vagina and the opening of the urethra.

In the case of vulvar vestibulitis, "inflammation" is a misnomer because, as many of you know, vulvar vestibulitis can occur with little or even no visible, or discernible inflammation. In the case of vulvar vestibulitis, "inflammation" is a misnomer because, as many of you know, vulvar vestibulitis can occur with little or even no visible, or discernible inflammation. It can also occur with barely visible red spots, only slightly pinker than normal skin, wildly inflamed skin, paper cuts, ugly purplish sores, white patches, and more. Quite commonly, however, only a trained eye can detect what is the most typical expression of the disorder.

Both of these terms (vulvodynia and vulvar vestibulitis) are anatomical and symptomatic descriptions that are not diagnostic in any way. They are often used by medical professionals very confusedly. Most women who have vulvar pain disorder or syndrome have many overlapping symptoms, and mixed symptoms, in specific genital areas as well as throughout the body frequently.

<icnmgrjill> What are the symptoms?

<VPFjoanne> Genital symptoms can including itching, hypersensitivity, deep, boring pain, shooting pains, burning pain, tingling pain, symptoms only on touch (with a Q-tip, chair bottom or penis), or when pubic hair is pulled; or constant symptoms, regardless of position or activity; symptoms only as a result of movement, or any combination or all of those circumstances.

Genital symptoms can occur not only in the vulvar vestibule, but also in the labia, large and/or small, the clitoris, the anus or rectum or skin surrounding the rectum. They can also occur inside the vagina and inside the rectum. Symptoms can extend to urological tissue, the urethra and/or bladder, causing urinary urgency and frequency, burning pain across the pubic hair line, burning pain in hip sockets, shooting pains through the buttocks and/or down to the thighs.

Many women who suffer from vulvar pain develop overall muscle soreness, stiffness, fatigue, poor and non-restorative sleep, headaches and all the complex of symptoms associated with the disorder known as fibromyalgia. Sometimes sufferers have been told they have arthritis. One of the most typical symptoms is burning hands and/or feet. Burning mouth and/or tongue may also occur.

Some women also develop irritable bowel syndrome, which is characterized by varying degrees of constipation and/or diarrhea, often see-sawing between the two. They frequently have numerous bowel movements in quick succession. Many women who have the syndrome develop sensitivities and/or genuine allergies to medicine, cosmetics, chemicals and more. Sometimes, these are merely minor and pesky. Sometimes they develop into full-blown cases of Multiple Chemical Sensitivity disorder. They cause headache, disorientation, a feeling of sickness to the smell of offending substances, prickly or burning skin and more.

All of these symptoms can occur with or without vulvar pain symptoms and, in any combination. Instead of naming vulvar pain syndrome by such a specific anatomical part, it should have an all-encompassing name which describes all of the disorders and syndromes that apparently overlap with each other, and their common diagnostic cause.

Since The Vulvar Pain Foundation has been established (1992), nearly 50,000 people have corresponded, called or met with us in support groups, seminars or other conferences. Many have poured out their hears and their histories to us in lengthy letters and copies of medical histories. It is very clear that vulvar pain is part of a much larger syndrome.

As with any major syndrome, the people who suffer from it do not necessarily have identical symptoms. They occur in difference combinations in different people. Some people develop only one aspect of the syndrome, and never develop others. Symptoms do not always develop in the same order, or to the same degree, or at the same rate. They may fluctuate or go into temporary remission, only to return at a later date

<icnmgrjill> What is the average age of women diagnosed with this?

<VPFjoanne> There have been a few small studies which have shown an average of onset of symptoms to be around 25. While this may be true as an average, mean, or a typical age, thousands of women who have communicated with the Foundation have experienced the onset or gradual development of vulvar pain symptoms at all ages. Some report pain and/or discomfort since their earliest memories. Mothers of 2.5 year olds and women up to the age of 92 have connected with Dr. Solomons and have been tested and all ages in between. The VPF hears from all ages and vulvar pain appears to be irrespective of age.

<icnmgrjill> What causes it???

<VPFjoanne> Although there is a great deal of controversy and politicization in this field as to the cause, I do have a definite opinion about causation or "etiology." Since 1992, the VPF has been working with a biomedical research scientist, Clive Solomons. He is a retired professor and director of research at the University of Colorado Health Sciences Center. For over a decade, he has run a prior consulting and biomedical research firm, Scientific Connections.

As a group, we VP sufferers met him after he had been working locally with around 10 to 12 women in the late 1980's. With each patient, vaginal creams for yeast and bacteria, hormones, surgeries of all kinds, incisional and laser, had been exhausted over a period of years. Upon biochemical investigation, Dr. Solomons found an abnormal pattern of calcium oxalate excretion in their urine.

He has since tested around 2,000 people, most women. Many of them have been given additional diagnoses of IC, fibromyalgia, lichen sclerosis, lichen planus, irritable bowel syndrome, arthritis, allergies and more. Not to mention the whole gamut of symptoms listed in the answer to question #1.

What is common in all of these people is the *pattern* of abnormal oxalate excretion. Oxalate causes pain and causes histamine release which causes pain. This has been known by scientists to cause pain for over half a century. There is a whole body of knowledge of oxalate irrespective of vulvodynia.

<icnmgrjill> Can you share with us how it is diagnosed?

<VPFjoanne> Generally, either by some or all of the four described symptoms, and/or through the laboratory analyses provided by Dr. Solomon's.

<icnmgrjill> What are the common self help strategies?

<VPFjoanne> In addition to treatments that go to the cause, there are a number of what we call natural measures and practical tips that women can do to reduce their symptoms. One of the best is rinsing off the genital skin after every urination. Another is rinsing their underwear several times after washing. It doesn't matter what you wash it in. The important thing is to get it all out! Dermatologists tell you to put it through the wash cycle at least two times after you wash it, without any soap or fabric softeners. No chemicals at all.

Wear cotton underwear. Nearly everyone with this problem wears long skirts or things with long crotches. Don't wear binding things, like pantyhose. I think a lot of people would be pleasantly surprised to wear old fashioned stockings and garter belts. They are actually very comfortable. Also knee highs with long skirts and thigh highs. We work closely with the Scanty Hose company in Canada and have a lot of information in our newsletters about that particular product.

When people have flare-ups or reactions to commercial menstrual pads, there are several 100% cotton alternatives. One is simply 100% cotton cloth pads and there are numerous companies that do this. We work with the Glad Rags company in Oregon. There are some companies that make 100% cotton fiber disposable pads. Some women simply use rolls of cotton.

Some other good things: Compresses with wet tea bags, like Lipton teabags. Sometimes they'll just put them on a menstrual pad and push it next to themselves. A lot of patients swear by that for reducing symptoms. Other patients will make a tea sitz bath.. and then sit in that. Just for temporary relief.

Soaking in a tub with half a cup of instant oatmeal or aveeno can bring temporary relief or you can also make a paste of compress of instant oatmeal and warm water and just press it up against the skin and then leave it there 5,10 15 minutes. Baking soda in bath water can be helpful.

There's one more real good one. There are several really good moisture barriers that protect you from your own urine or other irritants in the environment. One of the best that we have found is Vitamin E oil. It needs to be the pure product. Some people use it like twice a day and others use it after every urination. Every urination.. rinse.. pat dry.. and then use the oil.

And other things that also do the same thing are petroleum jelly, zinc oxide and frequently A&D ointment. A&D ointment does have a few chemicals in it.. but it doesn't bother many people.

<icnmgrjill> What treatments are currently available.

<VPFjoanne> I would say that they generally come under three categories.

<VPFjoanne> You can read more about the treatments at our web site at: http://www.vulvarpainfoundation.org

<icnmgrjill> Thank you Joanne. We so appreciate this info. Let's take some Q&A from the floor. Alison would like to know how vulvar pain symptoms differ from yeast infection symptoms, given that IC patients seem to suffer from both of these conditions.

<VPFjoanne> Well. they don't differ at all. Vulvar skin has a limited number of ways to express itself. If it gets irritated, it each burns or stings and you can't tell the difference. In this disorder, it is very important to have vaginal cultures.. which are very different from a wet mount. With a culture, the doc takes a swab of vaginal fluid and puts in a petrie dish and an incubator for three or four days. With wet mount, the doc just takes the swab and puts in on a slide and looks at it under the microscope. You see, everybody has some yeast in their body tissues and fluids. It becomes an infection when there is an overgrowth.

<icnmgrjill> Julie M says "I get a stingy pain on my vulva if I use certain cleaning products. Is that common?"

<VPFjoanne> That is very common and it is related to the oxalate. One of the worst offenders is formaldehyde/chlorine (i.e. swimming in a pool or in a lot of cleaning products.)

<icnmgrjill> She also says that when I get clitoral pain, it first feels as if it would be relieved by orgasm. It is not quite pain exactly but more over stimulation. The thing is that orgasm only brings momentary relief and then it is worse. What do you think is happening here?

<VPFjoanne> Clitoral pain is related to the oxalate problem. It will go away with comprehensive treatment for that. There is also symptomatic help, like a corticosteroid in an amount base. But the problem with that is that it thins the skin. So many doctors give people high amounts of corticosteroids for this condition. At the beginning it may help. But later on, it will make it worse because it thins the skin. Oxalates also thin the skin. It is breaking down connective tissue.

Corticosteroid ointments are only going to be a short term help and they should be used under the supervision of a dermatologist. Ice is not appropriate. The other thing you can do is a lot of rinsing off with water and rinsing well, especially the clitoral hood. Often if you look at that, there is often a lot of trash under there that is scratching an already irritated place. Just some dead skin. But the best thing is to get into a comprehensive low oxalate program.

<icnmgrjill> Next question. Does vulvar vestibulitis eventually cure itself on its own

<VPFjoanne> No.

<icnmgrjill> Suz says "I've had a white discharge for 40 years. Doctors test it and say its normal. It gets worse with dairy products. Any advice?"

<VPFjoanne> It's very normal for patients to have some white discharge, which is usually just old skin cells. When you have an inflammatory process going on, like oxalate, your skin cells are going to turn over faster(slough off faster). That's what makes the whitish discharge. Most peoples vaginal discharge can vary from whitish to clear, but that is absent infection.

<icnmgrjill> She also wants to know why doctors don't have any info to help her?

<VPFjoanne> I mean the reason that organizations like the ICN or VPF are formed is to heighten awareness to educate public, patients, professionals and that is what we are doing. Progress is slow but all of us within the field, when we look back to 15 years ago, more professionals have info in their hands than they used to. But its' not nearly enough.

And the other thing with problems like we are dealing with. We have to educate our health care provider and the ones that are helping us the most are the ones that are open minded and receptive to being educated regardless of where the knowledge comes from. One of our bigger tasks is to get reliable accurate proven helpful information into medical school curriculums. We have an enormous task in front of us. But that is what we are here for.

<icnmgrjill> Terri wants to know where Dr. Solomons is located and can he be seen?

<VPFjoanne> He's located in Denver Colorado, USA. He has a private consulting firm and laboratory downtown in an office building. The way to interface is to join his research project. You can get lots of information about that from us and directly from him to. For more information on that, please contact us!

After he tests peoples urine, he sends them his results with a ten page guide. He'll also send it to their physicians if they designate that. And it's not just having a test and getting results. He works everybody in this project with everybody in the mail who reports to him. He asks people to report to him once a month. The reason for this is that the timing and dosage for calcium citrate is critical for good results and its not an exact science, although it is total guess work.

The other way you can interface with Dr. S is by attending one of our regional seminars. We have about 4 or 5 seminars a year.. and we've had them over most part of the united states and one in Canada. I'd be happy to have them anywhere! Our seminars depend on local volunteers who come forward to coordinate it locally.

<icnmgrjill> Reba wants to know what you meant by "connective tissue strength"

<VPFjoanne> Oxalate degrades connective tissue. There are lots of different components of connective tissue, collagen, elastin, hyaluronic acid. Topical estrogen will rebuild some connective tissue components. NAG rebuilds others, particularly the hyaluronic acid pathway.

<icnmgrjill> ICer wants to know if topical lidocaine is helpful?

<VPFjoanne> Well, it's an anesthetic. It's as helpful as any other anesthetic for any other problem. Some people are sensitive to it and many women are problem to every pharmaceutical product because pharmaceutical products have chemicals in them. Your skin is broken down and in a vulnerable situation. If you are not sensitive to the vehicle in which the anesthetic comes. Yes, it will numb you for a while. But it's not a treatment. It's like getting novocaine for a tooth abscess. If you don't take care of the problem, its just going to wear off and still be there.

<icnmgrjill> LisaG wants to know if Dr. Solomons is continuing to test new patients.. and if he has found any other providers in the country willing to do the same testing?

<VPFjoanne> He's continuing to provide the test and I don't know if any other commercial or research laboratory has come forward to offer the test on a regular basis.

<icnmgrjill> Sue wants to know if there is a book she can buy that talks about this?

<VPFjoanne> Not yet, but I'm going to write one next year. But, we have a whole body of written articles and back issues of our newsletter. We have 16 issues currently available for ordering. I'm going to put that all together with the knowledge we've learned from people in our seminars to do a new book. We offer discounts for back issues to our members.

<icnmgrjill> Terri wants to know if oxalates can contribute to bladder pain and what foods have oxalates..

<VPFjoanne> All of the symptoms listed in the answer to question one can occur in connection to the oxalate problem. I'm pretty sure that every person diagnosed with IC that have also been tested by Dr. Solomon's have also had an abnormal level of oxalate. Now the problem is only exacerbated by foods high in oxalates. Oxalate is used by various tissues in the body and also produced by various organisms such as bacteria. It's effected by a lot of things. Certain antibiotics wipe out bacteria that feed exclusively on oxalates. That's why some patients have flares after they take an antibiotic. So, it's somewhat analogous to diabetes. Eating sugar doesn't cause diabetes. But cutting sugar and other carbs out of your diet is certainly part of the more comprehensive treatment of diabetes. The oxalate problem for us is similar. The low oxalate diet is part of an overall treatment problem.

Oxalates are found in plant sources to varying degrees.. that would be fruits, vegetables and grains. Now there are plenty of the same that don't have much oxalates, such as cauliflower, watermelon, wild rice. There are other fruits veggies and grains that have moderated amounts of oxalates that can be eaten in moderate amounts, such as white tomatoes, asparagus, apples.

Now, there is a whole group of foods that are extremely high in oxalates that it is better to avoid all together. Some of the bigger culprits are: chocolate, peanuts, tea, wheat germ or bran. This is a very comprehensive thing and we've published a whole book about it, titled "The Low Oxalate Cookbook." There are about twenty pages in their of the actual diet and tips along with many recipes. The book is $21 for VPF members and $30 for non members.

<icnmgrjill> One last question is about pelvic floor therapies. Some people feel that muscle tension in the pelvic floor is the root cause for some of the pelvic, vaginal and bladder symptoms that we feel. Any comments?

<VPFjoanne> Occasionally, muscle spasm is a solo cause of pain, such as vaginismus from honeymoon cystitis. Usually, muscle spasm is a *response.* For example, when a person has a back injury, like a ruptured disk, one of the first things that happens is that the muscle in the area tenses and spasms to guard the injury. It is a response to pain.

So, usually in the treatment of an injury like that, part of the treatment is to relax the muscles because the spasm itself does cause pain. It's an overlay of even greater pain, just like in IC. You've got this inflamed pain bladder, but then it goes into spasm and the spasm causes even more pain. You really can't tell the difference.

So, what you have to do is to treat the cause of the initial pain and you have to rehabilitate the pelvic floor muscle that is just glitched in response to all of that pain. If you do one and don't do the other, the pain may go down but it won't resolve all of the way. The only way to know for sure the condition of the muscle is to have a biofeedback evaluation.

An experienced physician or PT can probably have a general idea of the spasms, but when a muscle has been in spasm for a long time it gets weak. So, you have to rehabilitate and strengthen the muscle and also teach the muscle to relax. A good therapist teaches awareness of both at the same time. Muscles that have been in spasm for a long time make it difficult for you to feel what is actually going on. But, with a biofeedback monitor, a therapist can train you to be aware of what is going on with you, because you get immediate biofeedback from the monitor. You can learn how to contract the muscles to strengthen it.. and also how to release it to relax it.

<icnmgrjill> Someone says, my doctor believes that it will resolve on its own. I don't know who to believe now.

<VPFjoanne> The oxalate problem ebbs and flows a lot and people with all of these related diseases: IC, fibro, IBS. Some people get the disorder from hell and it's a pain that never lets up but a lot of people with these disorders go up and down.

In the early years, they may have complete remission of symptoms for short or long term periods of time. But there are a lot of clinicians and researchers that feel that this is a cumulative disorder in the body. Dr. Solomons believes that we are born with it and it's like having hardening of the arteries. A person will say "I was fine Thursday, but had a heart attack Friday." There is a certain point where you reach a threshold where it causes problems. People have contacted us who have had remissions for a day, week, month, year and up to ten years, and I suppose its possible for people who have remissions longer than that. Most people tell us that it went away but now it's back and what should I do.

The thing with doctors is that the person who first develops symptoms may never go back to the same physician. If the patient never comes back, the physician thinks it went away. I suppose there could be permanent spontaneous remissions but I just don't see it that way .

<icnmgrjill> How can patients find a competent, compassionate physician?

<VPFjoanne> My best advice is to join our foundation and use the VPF Network in their geographic area or region. The women who live near them have a history of visiting doctors! They can protect them from wasted office visits, procedures, money, emotional hurt and occasionally find a recommendation of that gem of a doctor another has found, not to mention physical therapists, biofeedback therapists, clinical psychologists, nutritionists, chiropractors, naturopaths and more.

Also, the VPF makes lists available to members of health care professionals who expressed an interest in this problem - by State and Country. It also includes professionals who have been recommended by our members who have seen them, either directly or through reports from support groups and network leaders.

There is a cover sheet explaining that these are merely people who have expressed an interest by joining as Professional members, writing and asking for information, attending a Professionals Session of one of our Seminars, etc. We explain that we do not have the resources to investigate and certify professionals, etc. We ask for feedback.

Also, on the cover sheet for the physical therapy and biofeedback referral network (a separate listing by State and Country, which is included in the HCP listings), there are tips for finding a therapist closer to you if there is not one on the list. These resources are available to members only and are the benefits of membership.

<icnmgrjill> What are the current projects of the Foundation?

<VPFjoanne> One is starting a program for testing the oxalate content of additional foods and beverages which have not previously been tested. We should get that off the ground within the next few months. We have had a fund collecting contributions for several years and recently accumulated enough to get started. Right now, we're trying to negotiate a contract with a commercial food testing laboratory.

Another long-term project is the VPF's Self-Assessment Survey. Several years ago, we developed a comprehensive scientific survey on vulvar pain and related disorders. However, the cost of administering it in a scientifically reliable way is exorbitant (about $50,000 utilizing lots of volunteer talent and services). We managed to accomplish a Pilot Study which showed that the instrument was good and helped us fine-tune it. We need contributions to the VPF Survey Fund to move forward with that.

Simply publishing a newsletter "regularly," holding 4-5 regional seminars a year and managing our network takes a great deal of the Foundation's modest resources. Our network is a combination of telephone, support groups that meet in person, correspondence by US Mail, as well as a large group of VPF leaders who have e-mail.

<icnmgrjill> Thank you so much Joanne for your time tonight!

<VPFjoanne> Thank you again for having me. I'd like to say that it is important for all of us to work together and to support the organizations that are serving us. You know that famous person during the revolutionary war who said "Who must all hang together or surely we will hang separately" (something like that). We need your help.. We need your money... We need your volunteerism.. Just find a way to get involved! Work hard to get well.. but then stay involved and help the others!

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© 1999, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Joanne Young and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.