This FAQ is a synthesis of postings from the vulvodynia list since its inception in August, 1997. It represents knowledge that the women on this list have researched, heard, or experienced. It should NOT, however, be construed as medical advice.

The first section of this document outlines the user protocol that has kept this list running smoothly so far. Sections 2 - 5 present some general information. Section 6 details some possible causes of vulvar pain. Section 7 outlines different treatments you may want to try. (If there is only one treatment for a particular possible cause of vulvodynia and it is not recommended for those whose pain may be due to some other agent, the treatment for that cause appears along with the description of
the problem in section 6.) Section 8 covers what NOT to try. Sections 9 and 10 address dealing with doctors and  dealing with relationships, respectively. Section 11 gives some suggestions on raising awareness about this problem. Finally, section 12 is a list of resources -- helpful postal and e-mail addresses, books, and URLs.

Feel free to copy and distribute this information as desired. One exception: due to privacy concerns PLEASE DO NOT PUT THIS INFORMATION ON ANY WEB SITE! (If archived by a search engine, the URL would show up any time someone searched on the name or e-mail address of any of the
individuals mentioned in this document.) FAQ modifications and additions should be sent to rbennett@darkwing.uoregon.edu.

Table Of Contents

_7.1 Test your doctor_
_7.2 Sample treatment plan_
_7.3 Acupuncture_
_7.4 Antibiotics_
_7.5 Anti-convulsants (anti-epileptics)_
_7.6 Antidepressants & anxiolytics_
_7.6.1 Some tricyclics used by list members_
_7.6.1.2 Side effects (and remedies)_
_7.6.2 Other useful non-tricyclic antidepressants_
_7.6.3 Anxiolytics_
_7.7 Anti-inflammatories_
_7.8 Antivirals_
_7.9 Bacterial infection treatments_
_7.9.1 Pain from past infections_
_7.10 Biofeedback_
_7.10.1 Cost_
_7.10.2 Which trainer?_
_7.10.3 What's the goal?_
_7.10.4 How are Kegel exercises different from biofeedback?_
_7.10.5 What about TENS units?_
_7.10.6 What about self-stretching and vaginal massage?_
_7.11 Exercise_
_7.12 Hormonal treatments_
_7.12.1_ Estrogen_
_7.12.1.2_ What about other estrogen-delivery products?_
_7.12.1.3 Do I need to take progesterone?_
_7.12.2 Testosterone_
_7.12.3 Is it the cream or is it the hormone?_
_7.12.4 Nutritional supplements for hormones_
_7.12.5 Systemic hormone disruption_
_7.13 Low-oxalate diet_
_7.14 Nutritional supplements_
_7.15 Pain medication_
_7.16 Surface irritants_
_7.17 Surgery_
_7.18 Yeast_
_7.18.1 Prescription treatments_
_7.18.2 A damn good alternative to fungal creams_
_7.18.2.1 Doesn't it kill roaches?_
_7.18.3 Natural yeast killers_
_7.18.4 Replacing the "good" bacteria_
_7.19 Symptom treatments_
_7.20 Other miscellaneous treatments_

**8. IS THERE ANYTHING I SHOULDN'T TRY?**

**9. HOW DO I DEAL WITH DOCTORS?**

**10. HOW DO I DEAL WITH RELATIONSHIPS?**

_10.1 Vulvodynia and the single girl (woman)_

**11. GETTING THE WORD OUT**

**12. RESOURCES **

**1. LIST PROTOCOL**

Besides common-sense things like ZERO tolerance for flames (we're
all in pain, here), the two main issues are (1) privacy and (2) message
volume.

_1.1 Privacy_

Although vulvodynia is not shameful, many of us have careers in
which we really don't want our colleagues' perceptions of us to be
filtered through information about ANY sort of medical condition we may
have. Thus, if you share any listserver postings with anyone -- either via
e-mail or hard copy -- please remove ANY reference to anyone's name or
e-mail address. Many women reveal personal things on this list, or
deliberately or accidentally include full names and contact information in
their signature files. It is to be understood that this information is NOT
to be spread.

Many women receive vulvodynialist mail at work. For that reason,
we ask that you NOT use explicit subject headers: e.g., avoid words like
"vulva", "sexual lubricants", or names of any STDs. Please DO try to make
your subject descriptive of your message, but be discreet. Usually you can
manage to be euphemistic in a way that every list member will understand
but that won't raise the eyebrows of any co-workers at the next terminal.

_1.2 Volume of mail_

A tricky issue. Yes, we do want to hear from you. However, there
are over 100 women on the list, and if every woman sent 10 messages a day,
any useful information would be drowned in the volume. Many women do not
have the time to read 100+ messages per day, and the work-related messages
we do need to see can get lost in the mail from the vulvodynialist. We
have actually lost list members due to high mail volume, and that
represents a loss of potentially useful resources to us all. A few useful
guidelines:

+ If someone asks a question thoroughly answered in this FAQ,
privately e-mail them the FAQ.

+ If you're about to ask a question, check this FAQ first to see
if it already answers it.

+ Do NOT send an e-mail which simply says "me too" (or along those
lines). E-mail that person PRIVATELY if you want to let them know
that you share the whatever. Exception: if you are expanding on
the original person's post. (e.g., your symptoms are similar, but
also have these other features)

+ Do NOT send an e-mail which simply expresses thanks. E-mail the
person privately for that.

+ Do NOT e-mail the whole list to ask where one person lives.
There is a list of where members live that is maintained by
Christie, available in the "Resources" section.

+ If you find that you're putting in the subject line "Reply to
so-and-so", chances are that you should just send it privately to
so-and-so.

+Please do not send text as HTML attachments. Not all e-mail
programs can read them, they arrive as huge files, and many of us
have tight restrictions on the total size that's allotted for our
incoming mail.

+ When you are responding to a survey, PLEASE respond ONLY to the
person who initiated the survey. The initiator of the survey will
tally the results and make them available to all -- there's no
point in everyone seeing the data twice, and this can clog up the
list faster than anything else.

+ When quoting someone else's message in your reply, delete all
the information irrelevant to the point you are making. Put your
own response BEFORE the message you are quoting (or indicate
explicitly that your response follows the quoted message).
Please use blank lines around your response so it will be easy to
find.

+ Please make sure you delete all extraneous information (like
the "tag" the list automatically appends to every message) from
the messages you're quoting.

+ Some list members have requested that people preface subject
lines with "VV", so that 'group-select'-type mail commands can be
used.

+ If you do e-mail a list member privately, please explicitly
state if you DO NOT WANT the content of your conversation to be
reported back to the list. Otherwise, the person receiving the
e-mail will assume that you don't mind if your comments --
without your name attached -- are made public.

+ If you find that you're sending more than three messages a day,
chances are you aren't following one of the above guidelines.

_1.3 Leaving the list_

Please do not e-mail the list or John Perry with a request to
unsubscribe. The instructions for removing yourself from the list are
attached in a footer at the bottom of every message that appears on
the list.

If you do leave, PLEASE send the list a message explaining why.
Too much mail? Put off by something you read? Feeling better? This is
CRUCIAL information for us to have, both so that we can continue to try to
make the list a useful resource for EVERYONE and so that we can get an
idea of whether the treatments discussed (or others) are working for
people.

**2. WHAT ARE VULVODYNIA AND VULVAR VESTIBULITIS?**

Vulvodynia is a general term which means, simply and literally,
"pain in the vulva." It is not the name of a disease, but a symptom, just
like "headache." Vulvar vestibulitis is a syndrome in which there is pain
at specific points in the vulvar vestibule (the portion surrounding the
entrance to the vagina). Imagine a clock superimposed on the area, with
noon pointing towards the clitoris. Women who experience vulvar
vestibulitis tend to experience pain from the 3 o'clock position to the 9
o'clock position, as well as just inside the vaginal opening. This pain
can be sharply focalized, and there may be small sores, bumps, or what
feel like small grains of sand beneath the skin's surface in these areas.

The term vulvodynia is usually used to describe burning or
stabbing pain that is felt more diffusely throughout the vulva. Many women
have both vulvodynia and vulvar vestibulitis. In both cases, the skin
usually feels extremely dry, and tears easily, leaving tiny and painful
"fissures." Both cases may also involve "referred pain", in which the pain
feels as though it travels from the vulva to the lower body.

Although it isn't mentioned in the literature, there seems to be
another category of women who are somewhere in between having vulvar
vestibulitis and vulvodynia -- they don't have generalized vulvar pain,
but have pain (and bumps or sores) not only around the vestibule but also
around the opening to the urethra, which causes burning after urination.
Others may also experience rectal pain or itching.

On this list, both vulvodynia and vulvar vestibulitis are
frequently abbreviated "vv"; "vvs"; or "vvd."

**3. DO WOMEN WHO HAVE VULVAR VESTIBULITIS OR VULVODYNIA HAVE ANYTHING ELSE IN COMMON?**

There are many women on this list who suffer from fibromyalgia
("FMS"), interstitial cystitis ("IC"), irritable bowel syndrome ("IBS"),
or autoimmune disorders. However, many other women have no problems except
for vulvar pain.

There is some research being conducted into a possible genetic
component of vulvodynia (see "Dr. Bornstein", in "Resources"). However,
many women do not have family members who suffer from vulvodynia or the
other illnesses mentioned above.

Age of onset varies from late teens to post-menopause. Some women
report difficulty with bladder irritations or vulvar pain from childhood;
others have had no such history. Those who have had vestibular pain from
the first time they tried to have intercourse or insert a tampon are said
to have "primary vulvodynia." Those whose pain started only after
initially pain-free penetration are said to have "secondary vulvodynia."

There are frequent attempts made on the list to use surveys to
discover what else may correlate with our vulvar pain. While such attempts
are valuable (IF information is collected via private e-mail -- see "List
Protocol"), please note that many medical conditions have a high base rate
of occurrence -- without comparing women with vulvodynia to women WITHOUT
vulvodynia, knowing that a large percentage of us experience a particular
symptom does not actually tell us that the symptom is more than
coincidentally associated with the pain. Nonetheless, a few of the more
striking correlations: many women with vulvar pain are light-skinned and
of Northern or Eastern European descent; and many have previously injured
their lower back. Many have had problems with recurrent yeast infections.
A very large number have reported the pain has intensified when they were
on birth control pills and also gets worse before or during their periods.

Some have other skin disorders, such as bumps or blisters on the
hands and fingers, which might be warts, allergies, or fungal infections
and may or may not be related to the bumps and sores in the vulvar area.
Bumps may also appear on the upper or lower eyelid or close to the eye.
Some have reported "geographic tongue", in which the tongue has a
yellowish coating and red spots, but we aren't yet certain how many list
members this applies to or whether a connection to vulvar abnormalities
exists.

**4. CAN IT GET WORSE?**

Some women experience a constant and unchanging level of pain for
years. Others describe their pain as occurring in cycles, with partial or
complete remissions, followed by flare-ups. Many women with vulvodynia say
that their pain began with vestibulitis and gradually spread in area;
however, it is equally clear that not all vestibulitis will turn into
vulvodynia. Then, too, there are women with vulvodynia who do NOT have
vestibulitis.

Many women have reported worsening after being on birth control
pills, using antifungal creams, or being on antibiotics. In most, but not
all, cases, the additional pain seems to eventually recede when these
things are discontinued.

Inexpertly performed laser surgery may be the biggest risk factor
for long-term worsening of the pain!

**5. CAN IT GET BETTER?**

YES. It is extremely important to remember that the women who are
on this list are those who have not yet found a satisfactory level of pain
reduction; women whose symptoms have disappeared are not on this list, but
they exist! Many women on this list have been able to lessen their pain
through following the suggestions others have provided. You are not doomed
to spend the rest of your life at your current pain level; there ARE
options you can try.

One suggestion is that you keep a pain diary, in which you keep a
daily record of what treatment(s) you're trying, what the pain feels like
(burning, itching?) and a note of your total pain level on a numeric scale
(i.e., 1-10). It can also be useful to note where you are in your
menstrual cycle. This information can be tremendously helpful to review --
or to graph -- and can give you some insights into what, for you, works
and what doesn't.

**6. WHAT CAUSES VULVODYNIA AND VULVAR VESTIBULITIS?**

We'd love to know this one! It's VERY important to remember that
there are likely to be multiple causes of vulvar pain. After all, we don't
expect that everyone gets headaches for exactly the same reasons! And,
just as in headaches, your body may be able to tolerate ONE cause, but the
pain results when you have a COMBINATION of causes acting all at once.
Below are listed some of the possible causes we've discussed. Because some
treatments may be appropriate for more than one suspected cause, they are
listed separately (alphabetically) in section 7.

_6.1 Allergies_

Unfortunately, allergies can also be to the building blocks of
food (i.e., certain acids) which can make it difficult to figure out which
foods might be causing the trouble. Rather than try to self-diagnose, you
may want to try to talk to an allergist knowledgeable about vv -- or, if
you can't find one, ask your gynecologist to consult with a specialist in
allergic vaginitis. Most allergy tests are done by examining samples of
your blood for the presence of specific antibodies, or by injecting small
amounts of typical allergens and looking for skin reactions. While
frustrations with the inability and apparent lack of interest of "Western
medicine" to address our problems is perfectly understandable, please be
especially careful about trusting "alternative" medicine in this arena:
many, many ways are touted for determining allergies -- from noting
reactions to spoken lists of foods, to impressive-looking but useless
"computers", and most are expensive and scientifically worthless. Once
your allergies are identified you can undergo a course of injections, or
"Enzyme Potentiated Desensitization" (EPD), in order to curb the
inflammatory response to the allergen.

_6.1.1 Chemical sensitivities_

Dermatological immune reactions can also occur from exposure to
different kinds of chemicals. Many women find propylene glycol (an
ingredient in many sexual lubricants!) to be an irritant. Frequently,
cosmetics and "health and beauty" products, like many shampoos, contain
chemicals that are absorbed through the skin and that can cause autoimmune
or skin reactions in some people.

_6.1.2 Oxalate sensitivity_

One theory -- closely associated with Clive Solomons -- is that
some women have pain because they have sensitivity to plant oxalates,
which form crystals and lodge in the vulvar tissue. This theory is
somewhat controversial. Solomons is not a medical doctor, and his theory
has not been scientifically validated. Many women with vulvar pain do test
as having high levels of oxalate in their urine, but it is not clear if
this is significantly different from the general population. Other critics
of Solomons are concerned by his unorthodox practices (such as charging
women to take part in his studies) and by the fact that he sells some of
the nutritional supplements he recommends.

On the other hand, many women on this list have talked to and
worked with Dr. Solomons and are pleased with him, with his work, and with
his commitment to helping women who have vulvodynia. Quite a number of
women have achieved pain reduction or even pain elimination through
following the low-oxalate diet along with calcium citrate supplementation.
No matter which way you feel about him, you should be aware that the
Vulvar Pain Foundation (listed in the "resources" section) strongly
supports Solomons' work.

_6.1.2.1 Why does the diet work?_

One possibility is that oxalates do, in fact, form crystals that
are painfully excreted. Another possibility is that oxalates in the blood
irritate or ulcerate the skin. Yet another possibility is that some women
are simply allergic to oxalates. Finally, the possibility cannot be
overlooked that the oxalate diet works for so many simply because it is so
restrictive that it is likely to remove from your diet any foods you ARE
allergic to, and has nothing to do with oxalate sensitivity.

_6.1.2.2 Diagnosis_

Your doctor can test your urine for oxalate levels. This is done
either by testing urine collected at different times during the day, or by
testing urine pooled together over the course of 24 hours. Many favor the
first method, as oxalate levels rise and fall during the day, and
treatment is supposedly easier when it can be timed to your individual
oxalate peaks. Solomons also offers a urine-testing service. Contact
information is in section 12.

The current treatment for oxalate sensitivity is to follow a
low-oxalate diet (see "low-oxalate diet", 7.13), usually with calcium
citrate supplementation. If you have your urine tested by Dr. Solomons,
he will let you know when you should take the calcium citrate so that it
will optimally combat your peak oxalate times. Many women also use the
nutritional supplements listed in section 7.14.

_6.1.3 Yeast allergies_

Regardless of whether you culture positive for yeast (see
"atrophic yeast infections", in section 7.18), you may be sensitive to
even small amounts of mold or yeast.

_6.2 Autoimmune disorders_

Autoimmune problems occur when the body fails to differentiate
between its own tissue and the pathogens it needs to attack. Autoimmune
disorders tend to run in families, and often there will be more than one
site the body is attacking. Two autoimmune disorders that are known to be
associated with vulvar pain are Sjogren's syndrome (a general drying of
the mucous membranes) and Lupus erythematosis, a systemic debilitating
disease. If you suspect you have autoimmune problems, ask your doctor to
perform an Anti-Nuclear Antibody (ANA) test. Elevated levels of ANAs can
indicate that your antibodies are attacking healthy tissue.

Please note that attempts to strengthen your immune system may
only strengthen the attack against healthy tissue. Ask your doctor about
the use of immunosuppressants. This is, of course, a dangerous course of
treatment -- make sure your physician is knowledgeable in this area.

_6.3 Bacterial infections_

High white-blood-cell count (WBC) signals some sort of infection
in your body. The infection may be either bacterial or viral (herpes,
HPV). For treatment for both bacterial infections listed below, see
section 7.9.

_6.3.1 B-Strep _

Yes, you can get strep in the vagina, just as you can get strep in
the throat. You can be diagnosed with a culture. Some women with B-strep
report that symptoms are worse after sex and improve by drinking lots of
water.

_6.3.2 Cytolic vaginosis_

Also called "lactobacillosis" or "Doederlein cytolysis." This
results from an overgrowth of the "good" bacteria normally present in the
vagina. Symptoms can feel much like yeast. If you repeatedly feel you have
yeast infections and no yeast is ever found in your cultures, this may be
your problem. Your doctor can also culture for this. If there is bacterial
overgrowth, your vaginal pH will be too alkaline. Treatment is with
antibiotics; usually Augmentin. (But, see also section 7.4.)

_6.4 Erythema nodusum_

This is normally a condition in which large, painful red nodules
appear on the legs (or sometimes other areas). The condition is thought to
result from an abnormally activated immune system. Inflammation occurs in
the fatty layer of the deeper layers of skin.

It is possible that the sore raised red areas in our vulvas may be
either a form of (or related to) erythema nodusum. Consider that factors
predisposing one to erythema nodusum include:

-strep infection
-fungal infection
-birth control pill use
-estrogen treatment
-sulfa medications (antibiotics)
-consumption of foods with food dyes or preservatives
-irritable bowel syndrome

...which sounds like a collection of things frequently noted as
problematic by many women on the list.

Treatments include anti-inflammatories (section 7.7), topical
steroids (section 8), or topical treatment with potassium iodide (SSKI).
 
_6.5 Excessive sympathetic arousal_

Chronic activation of your body's "fight or flight" system may
result in tense or unstable pelvic muscles, reduce the volume of blood
flowing to the genitals, and overstimulate the nerve pathways, leading to
pain. People with excessive sympathetic arousal tend to experience
generalized anxiety or panic attacks (flushing, racing heart, feeling of
loss of control, feeling of unreality). For treatment, see section 7.6 and
section 7.10.

_6.6 Fibromyalgia_

Fibromyalgia is a systemic but non-inflammatory and
non-degenerative disease of unknown etiology. Fibromyalgia sufferers
generally have muscle and joint pain all over the body as well as high
levels of fatigue. Clive Solomons believes fibromyalgia may result when
the same type of oxalate crystals he hypothesizes cause vulvar pain lodge
in muscle tissue. Some doctors, like Dr. St. Amand believe that all vulvar
pain is a manifestation of fibromyalgia, and he recommends treatment with
guaifenesin (see section 7.14). There are many women on this list,
however, who do not fit the fibromyalgia profile. Some of the more
successful ways to relieve the pain of fibromyalgia seem to be
antidepressants, exercise, and nutritional supplements.

_6.7 Hormone problems_

A number of women on the list suffer from some hormone
disruption -- either irregular periods, endometriosis, ovarian problems,
or the mis-named polycystic ovarian syndrome, which is actually related to
insulin resistance. Hormones clearly appear to play a role in vulvar pain,
although the extent of the role isn't known. A majority of women worsen
while on birth control. A number of women have reported an improvement of
symptoms during pregnancy. And a very large number report fluctuations in
pain dependent on where they are in their menstrual cycle. Systemically
low levels of estrogen, or low levels of estrogen reaching the vulva, may
be especially predictive of vulvar pain.

Ask your gynecologist to consult with a reproductive
endocrinologist on this one. If bloodwork is done (especially by a
non-specialist), be aware that hormone levels fluctuate throughout the
day, and, of course, across your cycle. Many hormone tests unfortunately
report the results as "normal" if your hormone levels are within the
extremes that would be expected from the lowest normal point to the
highest normal point in the cycle. As a result, only women with very
severe hormone problems are told they have abnormal results. It's
important for you and your doctor to establish whether your results are
normal for WHERE YOU ARE in your cycle.

Irregular hormonal changes can also play into chronic infections.
The healthy vagina contains a balance of different types of bacteria, and
different hormonal environments can allow the overgrowths of some types.
Vaginal discharge becomes alkaline at ovulation, which can result in
burning -- and the presence of semen may cause the same effect.
Progesterone increases prior to menstruation can allow an overgrowth of
lactobacilli, which can result in a painfully acidic feeling; yeast may
flourish during menstruation; and low estrogen after menstruation may
cause drying and cracking. The key to symptom treatment in this case is
awareness of which of these components is active at any time, given where
you are in your cycle. For instance, baking soda and water douches may
help with lactobacillus overgrowth; boric acid may help during
menstruation; lubricating ointments may help post-period.

Addressing the underlying hormonal imbalance is discussed in
section 7.12.

_6.8 Human Papilloma Virus (HPV)_

This is also a controversial one. The papilloma virus is actually
a family of viruses, thought to be spread through sexual contact, but
probably also spread through other forms of close contact. It can also be
transmitted congenitally. The viral incubation period can last for years.
A large number of people have the virus, and the majority of them will
experience no pain and may not know they are infected. Some studies have
shown that the rate of HPV occurrence is no higher among vulvar pain
sufferers than it is among the general population. However, it is possible
that specific immunodeficiencies, or specific strains of the virus -- or
both -- may make a pain response more likely. The virus cannot currently
be cured, although therapeutic vaccines are being researched. Though there
are exceptions, women with HPV and vulvar pain tend to have vestibulitis
(with or without pain around the urethra), "clock points" of pain, and
identifiable sores, raised areas, or tiny bumps below the skin. Please
note that if you have HPV, you are more likely to develop cervical cancer.
Yearly pap smears and quitting smoking can reduce your risk. See section
7.8 for treatment information.

_6.9 Irritation to the skin_

Soaps, pantiliners, pads, detergents, and toilet paper with dyes
or fragrance can all theoretically cause contact dermatitis and irritate
the vulva. See section 7.16.

_6.10 Lichen sclerosis_

This is a skin disorder of unknown etiology that can occur on any
part of the body. Typically, the affected skin turns white, shiny, and
thin, although the disorder is also less commonly manifested by thick
white patches or simply by reddened and irritated skin. The primary
symptom of lichen sclerosis is itching of the affected area, though it may
also cause painful fissures. The skin can be biopsied to look for changes
characteristic of the disease. Treatments usually involve use of topical
steroids (but, see warning in section 8), although some women with this
condition have also responded well to the low-oxalate diet or the use of
topical testosterone or progesterone creams. Be aware that lichen
sclerosis may increase a woman's predisposition to malignant changes in
the afflicted area.

_6.11 Molluscum contagiosum_

This is a contagious and common viral infection (DNA-pox virus
group) of the skin, generally described as "benign." Molluscum contagiosum
can occur both in children and adults.  The lesions are usually small (1-2
millimeters), smooth, domed bumps with a central dimple covered by
transparent skin. Generally, there are multiple bumps, although there may
be a single lesion. When opened or squeezed,  the lesions contain a white
core of curd-like material.  Lesions may also be found on the lower
abdominal wall, pubic area, inner thighs, as well as on the vulva. The
incubation period for the virus may extend for months, making it difficult
to identify the source of the exposure.

The lesions produced by molluscum contagiosum are usually
described as painless. However, at least one sources notes that lesions
can become red and sore when the virus triggers an immune response.

While many women who have been told they have HPV do NOT have
genital warts characteristic of that disease, the description of molluscum
contagiosum sounds more like the vestibular bumps that some women report.
When molluscum contagiosum occurs elsewhere on the body, treatment
involves opening the lesion with a small blade or needle and removing the
core by scraping (local anesthetic is used). This may obviously not be
practical for widespread vulvar lesions, but it IS still worth asking your
doctor whether you appear to have this virus. You may want to try
antivirals like those noted in section 7.8, but be aware that  some
treatments that you may be prescribed for HPV may not work as well for
molluscum contagiosum. Then too, different viruses have different levels
of fragility. For example, repeated applications of heat may affect one
virus and not another. A dermatologist may be able to answer these
questions (and come up with creative antiviral suggestions) better than
can a gynecologist.

_6.12 Nerve damage_

Particularly for women who experience generalized vulvodynia,
"stabbing" pain, "shooting" pain, or "referred" pain (pain that seems to
travel from the vulva to the legs, feet, or buttocks), the problem may be
damage to the nerves. Many of the women reporting this kind of pain have
been in some kind of accident or have otherwise injured the base of the
spine. Doctors can use temporary nerve blocks to try to isolate the nerve
pathways that are causing you trouble. The best doctor to consult for this
type of pain may be one affiliated with a general chronic pain clinic --
NOT a gynecologist. Knowledgeable chiropractors or physical therapists may
also be able to help you identify nerve problems, especially if they stem
from a misalignment of the spine or from a tilted pelvis. At this time,
painkillers and antidepressants may be the best option. For extreme pain,
nerves can be removed, but this will result in permanent numbness.

_6.13 Muscle tension_

Glazer's paper, which you no doubt saw on the website that guided
you here, posits that the pain may result from chronically high levels of
tension in the pelvic muscles. This may occur with or without the kind of
excessive sympathetic arousal mentioned in 6.5 -- some women may have
simply gotten into the "habit" of tensing their pelvic muscles. Treatment
involves the use of biofeedback-guided contractions to exert the muscles
to the fatigue point so that relaxation follows. Consciously breathing
from the abdomen, as well as engaging in hatha yoga and other exercises,
can help.

_6.14 Sex abuse_

Experts used to believe that childhood sexual abuse was the
primary cause of vulvodynia/vulvar vestibulitis. Unfortunately, there are
still practitioners out there who believe this and hence regard vulvar
pain as a psychological and not physical problem. A past history of sex
abuse certainly could result in vulvar pain, but studies have shown that
women who have vulvodynia are no more likely to have been abused than
women who don't have vulvodynia.

_6.15 Vaginismus_

Many women with vulvar pain also have some degree of vaginismus,
which is the term given to involuntary painful vaginal muscle spasms.
Because vaginismus is commonly found in sex-abuse survivors, this has
helped establish the abuse/vulvodynia link in the minds of some doctors.
However, a history of any sort of vulvar pain can also lead to secondary
vaginismus -- if you expect pain, your muscles will often involuntarily
tense up. This is called "guarding", and it's an adaptive response to the
situation. Chronically tense pelvic muscles might also result in painful
spasms. Vaginismus can be treated with dilators and progressive
relaxation, but unless the underlying causes of the pain that caused the
vaginismus in the first place are treated, this is unlikely to have a
great effect on vulvodynia sufferers.

_6.16 Yeast_

Ask your doctor to extend the incubation of the yeast culture.
Many women with yeast problems who are repeatedly told that they don't
culture positive for yeast find that if the culture is allowed to grow for
longer periods of time, yeast will be apparent. If you have chronic yeast
infections, you may need to address intestinal yeast overgrowth, check
that your hormone levels are normal, that your blood sugar is normal, and
that you are not insulin resistant. If you have constant symptoms but
don't test for yeast, you may have "atrophic erythematous candidiasis" --
which is when the candida cells grow beneath the surface of the skin and
are thus not captured by an external swab (or affected by topical
antifungals!). Be aware that frequent use of antifungals (especially the
topical "-azole" creams) may increase your pain. Yeast treatments are
addressed in section 7.18.

**7. WHAT SHOULD I TRY?**

This will depend on what you (and an informed doctor, if you can find one)
feel are the main causes of your pain.

_7.1 Test your doctor_

If your doctor tells you your ONLY options are surgery or
interferon shots, find another doctor! (This is sort of like going to a
doctor when you have a bad headache and being told, "Ok, let's open your
skull and ablate some areas. If that doesn't work, we'll try aspirin.")
Your doctor probably will NOT know a lot about this condition. What is
critical is whether they are willing to research it and consult with
doctors who ARE more knowledgeable.

_7.2 Sample treatment plan_

Your doctor will probably start out with a "Q-tip test." This
overglorified term means that your doctor will poke the vestibular area or
other regions with a swab and ask you what hurts. The only reason for your
doctor to do this is if he or she doesn't believe you've correctly named
the parts that hurt; however, this seems to be a standard way to begin an
exam.

Next, your doctor may want to do a colposcopy. In this procedure,
the skin is examined under magnification, through a colposcope. Your
doctor will probably want to wash the skin with acetic acid (vinegar)
first; areas that turn white indicate skin abnormalities.

Colposcopy pros: it will tell your doctor whether a biopsy is
warranted and whether your skin is damaged.

Colposcopy cons: the vinegar wash can sting; the procedure can be
very expensive.

If the colposcopy shows damaged areas, your doctor may want to do
a biopsy. Request that the biopsy be examined for both lichen sclerosis
and HPV. IF YOU DO A BIOPSY FOR HPV, make sure you ask that IF HPV IS
FOUND, THE HPV "TYPE" IS DETERMINED.

A biopsy that finds evidence of HPV only through looking at skin
inflammation and not DNA-typing may in reality simply tell you that you
have skin inflammation -- which you already knew, of course! Plus, some
subtypes of HPV are linked to higher rates of cervical cancer, especially
in the presence of estrogen (at least in rats...). Most types of HPV are
harmless, affecting the external genitalia as well as other places on the
body. Some, however, do target the cervix, and if you're undergoing the
pain of a biopsy, you might as well find out how much you need to be
concerned with cervical problems at the same time.

Biopsy pros: you can rule out vaginal cancer (a rare, but not
unheard-of cause of pain); you can find out whether you have lichen
sclerosis, or a form of HPV that might put you at risk for cervical cancer

Biopsy cons: can REALLY hurt; take a long time to heal, or create
a cyst; and may not tell you how to proceed with your treatment.

A good doctor will also test your vaginal pH (which will tell you
whether your bacterial levels are normal), culture for yeast and for as
many sexually-transmitted diseases as possible, do a thorough visual
inspection for molluscum contagiosum (be sure to point out to them the
areas in which you feel bumps), and do a hormone panel. He or she may also
want to see whether your white blood cell count is elevated (indicating
infection) and take steps to rule out autoimmune problems, such as by
performing an ANA blood test (see section 6.2). He or she may also numb
the surface of your skin with lidocaine and perform a Q-tip test. In this
case, it IS helpful and can tell you whether your problems are superficial
skin irritation or represent deeper neuromuscular damage.

Where you go from there depends on what you feel the primary
cause(s) of your pain are. Some treatments we've tried are listed below,
in alphabetical order.

_7.3 Acupuncture_

Check out your practitioner carefully -- talk to his or her
previous or current clients if you can. It doesn't seem to be necessary
for the acupuncturist to know exactly where your pain is for you to
experience benefit from this technique. Many women report deep relaxation
or temporary pain relief from acupuncture, but it doesn't seem to be a
cure. Vulvar pain can lead to a "pain cycle" in which tissue irritation
leads to tensed muscles and emotional and physical stress, which furthers
the skin irritation. Acupuncture almost certainly releases endogenous
opiates -- our natural painkillers -- and interrupts this vicious cycle.

_7.4 Antibiotics_

The use of antibiotics is highly controversial. Your doctor may
want to put you on some, especially if your white blood cell count is
high. Many women have reported that antibiotics seem to help at first but
then cause a "rebound" effect in which the pain returns worse than it was
before. Others believe that their vulvar pain STARTED with antibiotic use.
Whether or not there is a link, antibiotic use CAN lead to yeast
infections, and repeated use can lead to resistant bacteria, or outbreaks
of erethyma nodusum, which are reasons enough to question your doctor
carefully about the need for them. One exception: if your doctor has
diagnosed you with vaginal B-strep, Augmentin may be the best treatment
for you to try. As Augmentin is a form of penicillin, be careful to watch
for allergic reactions.

_7.5 Anti-convulsants (anti-epileptics)_

Generally, these drugs are prescribed when it is believed that
nerve damage is the underlying cause of the pain. The idea behind the use
of these drugs is that they raise the threshold for the amount of stimuli
needed for nerves to fire -- thus raising your pain threshold. Women with
vulvodynia (as opposed to vestibulitis) or who report "stabbing" pain may
have more success with these. These drugs are typically taken at higher
doses than are the antidepressants and have a more substantial effect on
the central nervous system. Of course, they have their own set of side
effects: dizziness, mental fog, fatigue. It may be best to try them only
after trying antidepressants first. Some anticonvulsants used by list
members: Neurontin (gabapentine), and Tegretol (carbamazepine). Tegretol
is also called Atretol, Depitol, or Epitol. It is chemically related to
the tri-cyclic antidepressants and may cause liver damage -- be sure to
get your liver enzymes periodically checked if you're taking it.

_7.6 Antidepressants & anxiolytics_

Just because these drugs are used primarily to lower anxiety and
decrease depression does NOT mean that vulvodynia is "in your head." The
amount of the neurotransmitter dopamine in your central nervous system
affects your perception of pain. These drugs alter that perception by
raising your dopamine levels.

Most of the antidepressants available today are SSRIs (selective
serotonin reuptake inhibitors), like Prozac, Paxil, and Zoloft. While
these drugs act primarily on the serontonergic system, they also have some
secondary effect on the dopaminergic system. Because the dopamine action
is not direct, many find that these drugs are not especially effective at
reducing pain, though some women on the list have reported good results.

An older class of drugs, tricyclic antidepressants, work directly
on the brain's dopamine pathways and can offer relief, even at low doses.
Some people think that tricyclics simply "mask" the pain. Others, who
believe that the pain is due to neurotransmitter imbalances or nerve
damage, feel that this is more than psychoactive aspirin -- it IS
addressing the underlying problem.

A few notes on all tricyclics: many have side effects that range
from annoying to incapacitating. Start with a low dose -- as little as 10
mg/day -- and increase by 10 mg each week or every two weeks until you
notice a difference in the pain, in order to minimize side effects. The
time of day you take the medication may affect your experiences: Some
women have reported that taking their pills a few hours before they go to
sleep minimizes the feeling of grogginess the next morning. It is
important not to combine tricyclics, or tricyclics and SSRIs or natural
antidepressants like St. John's Wort. Equally important is that you slowly
taper off your use when you want to discontinue the medication. Stopping
the medication abruptly may or may not worsen your pain, but it CAN lead
to severe "rebound depression" if your dose was high enough.

_7.6.1 Some tricyclics used by list members_

Pamelor (nortriptyline hydrochloride), Triavil (a combination of
perphenazine and amitriptyline), Doxepin (doxepine hydrochloride),
Desipramine (desipramine hydrochloride), Elavil (amitriptyline).

Which one works best for you seems to be a matter of trial and
error.

_7.6.1.2 Side effects (and remedies)_

One of the most commonly reported side effects is weight gain.
Other problems can involve constipation, dry mouth, mental fuzziness, and,
less frequently, difficulty reaching orgasm. Constipation can be avoided
by increasing fiber intake or with the use of magnesium supplements --
take three 500 mg pills/day; increase slowly to avoid diarrhea. Magnesium
oxide may be the most easily-absorbed form of the mineral. For many, the
side effects will diminish after a month or two at the maximum dose you
decide on, as your body adjusts.

_7.6.2 Other useful non-tricyclic antidepressants_

+ Desyrel (trazadone hydrochloride; frequently also called
"Trazadone")

This is an atypical SSRI. It differs from other antidepressants in
that it is a triazolopydridine compound. Some have reported fewer side
effects with it, though it may have such central nervous system effects as
confusion or agitation.

+ Trilafon (perphenazene)

This also functions as an antihistamine and anticholinergic agent.
Common side effects are drowsiness, blurred vision, and discolored urine.

+St. John's Wort (hypericum)

St. John's has been shown to compare favorably with SSRIs in
clinical trials, though it seems to act more like a tricyclic. Since St.
John's is nonprescription and unregulated, the trick is finding a
manufacturer who can actually provide an honest product. You should take
900 mg/day of extract that has been standardized to provide .3% hypericin.
Expect to wait many weeks before seeing a difference. An URL for obtaining
research-grade hypericum is in the "Resources" section. Be aware that: (1)
St. John's Wort is a phytoestrogen. It has potentially dangerous
interactions with other herbs affecting hormonal balance, such as licorice
root. St. John's Wort also interacts with the Pill, drastically decreasing
its effectiveness. (2) Some of the effects of SJW indicate that if
functions somewhat as an MAO-inhibitor, a powerful older class of
antidepressants. It is EXTREMELY important that you do not take another
MAO-inhibitor while taking SJW. (3) St. John's Wort can photosensitize
your skin. This fair-skinned author can readily attest to how taking SJW
can dramatically decrease the time required for a sunburn. Look for a good
daily moisturizer with an SPF of at least 15, and bear in mind that taking
sulfa drugs at the same time (also photosensitizers) can intensify this
effect.

_7.6.3 Anxiolytics_

Anxiolytics are anxiety-reducing or sedative drugs. An older
class, the benzodiazepines (usually drugs ending with "-epam"), work by
increasing the amount of the neurotransmitter GABA available in your
brain. These drugs are, unfortunately, addictive. Newer anxiolytics have
been developed that target different neurotransmitters and that have less
addictive potential.

The theory behind the use of these drugs in treating vulvar pain
is that they may help with excessive sympathetic arousal. Unfortunately,
they may be "too little, too late" for people who have already learned
physically detrimental ways of expressing their stress and anxiety. Still,
this might be a useful measure in conjunction with another treatment. Talk
to a psychiatrist about your options, and check out your pills carefully:
Some can make you mentally sluggish, and some will cause an initial
"paradoxical effect" -- make you MORE anxious -- before they finally start
giving you relief.

_7.7 Anti-inflammatories_

This is one of the least invasive, least expensive (sometimes) and
most logical places to start. Regardless of the deeper underlying reason
WHY your vulva is inflamed, the fact is that it IS, and anything that can
reduce the inflammatory reaction is going to give you relief and may even
help break the pain cycle. There are some over-the-counter
anti-inflammatories that can help:

+ Zinc lotion (can be bought in the form of 'Anusol' - non-steroid
formula)
+ A&D lotion (may be in the "diaper rash products" section of the
store)
+ Compresses made with Aveeno
+ Calendula ointment (can be homeopathic or an herbal salve)
+ Comfrey ointment
+ Pau D'arco ointment
+ St. John's Wort ointment (note: may have a different efficacy
than taking SJW orally)
+ Teabags (black, not herbal) moistened with either warm or cold
water, and applied to the painful areas. Be aware,
though, that you CAN get wired from intervaginal
caffeine absorption!
+ Vitamin E oil (can be obtained in gel caps, in small bottles
from "Cabot's" company, or from Jason Natural Cosmetics
    Company.)

Note: not all the different types of vitamin E oil being
marketed seem to work equally effectively, and some women may be sensitive
to the oil -- do a patch test before applying it to a wide area. The two
sources mentioned above are ones that have been used to good effect.

Two prescription anti-inflammatories that may help:

+ Aldara cream (see next section)
+ Isoprenosine

A note on isoprenosine: this is a drug mentioned in an
bibliography on Howard Glazer's website as something that can be used to
treat vulvar pain symptoms. None of us have been able to find a doctor
knowledgeable about it, and it is unlikely that the drug has FDA approval
in the United States. The reference in which the drug is mentioned is:
Sand Petersen C., & Weismann K. Isoprenosine improves symptoms in young
females  with chronic vulvodynia. Acta Dermato-Venereologica. 76(5):404,
1996 Sep. If you have access to this journal or have experience with this
drug, we'd love to hear from you!

Also keep your eye on:

+ Celebra
+ Vioxx

These are both drugs that are in advanced clinical trials and do
not yet have FDA approval. They selectively target and inhibit
prostaglandins (COX-2) that are implicated in the inflammatory response.
Initial tests have shown them to be powerful and without serious side
effects. They will initially be approved only for arthritis, so your
doctor probably will not have heard about them. You can monitor their FDA
journey on the internet by periodically reading the pharmaceutical company
press releases (in this case, the manufacturers are Montesano and Merck).

_7.8 Antivirals_

If your pain is due to herpes, acycolvir may help. It is not clear
whether this drug is otherwise beneficial to vulvar pain sufferers.

Interferon is an injectable anti-viral drug that is sometimes
given to women who appear to have HPV. Typically, the drug is injected
around the vestibule -- into the wart or sore, if any are present -- three
times a week for three or four weeks. Interferon is extremely expensive,
and the frequent office visits required for its use make it even more so.
Ask your doctor about the possibility of self-injecting the drug in your
upper thigh -- it is not clear whether vaginal or intramuscular injection
is superior, although larger doses may be required for the latter. If done
by your doctor, lidocaine can be mixed into the preparation to ease the
pain of the shot. Many women report flu-like symptoms with the use of
interferon, but these can range from very mild and only shortly after the
shot to chronic. Some women have gotten either temporary or permanent
relief from interferon -- about a 50% success rate is reported in most
studies. Many journal articles report that when interferon is used at the
same time as other techniques, such as surgery, the recurrence rate of
pain is lower than with the use of either technique alone. Benefits from
interferon may not be apparent until some time after the treatment is
completed.

One of the new antiviral medications being used for HPV is Aldara
cream. Aldara's active ingredient, imiquimod, is a substance that is
believed to stimulate the body's own interferon response. The cream is
expensive (around $120/month) and may cause mild-to-severe initial skin
reactions that diminish after the first month (however, it is MUCH less
traumatic for most than interferon shots). It is used for up to 16 weeks,
and it may take longer than that for results to be seen.

Some doctors -- dermatologists, in particular -- may be interested
in killing off wart viruses through less conventional means. Surface viral
material may be destroyed by repeated applications of heat (which may,
however, cause other problems -- see section 7.19). Others may recommend
the use of a high-dose antihistamine like cimetidine for several months.
You may find that this slows your metabolism or disturbs your sleep, and
it may not be especially effective for your pain.

_7.9 Bacterial infection treatments_

For strep or for bacterial overgrowth, the antibiotic Augmentin
may be effective. For those wishing to avoid antibiotics, a douche
consisting of 1 part water to 1 part hydrogen peroxide might be effective.
Use every other day for five days.

For cytolic vaginosis, or other bacterial overgrowth, betadine
douches may help. You can purchase one at the drugstore -- it'll probably
be labeled "medicated douche"; just check the ingredients. Or, more
cheaply, you can buy a bottle of betadine and add it to an ordinary (and
re-usable) douche.

Baking soda douches can also be used: to make these, mix 2 to 3
tablespoons of baking soda per 1/2 gallon water, and use three times a
week.

Note that if you have a yeast infection rather than a bacterial
one, these treatments can make you worse by making the vagina less acidic
and hence more hospitable to yeast.

_7.9.1 Pain from past infections_

If you do not currently have a bacterial or viral infection, it is
possible that the Bartholin glands located in the vulvar vestibule, as
well as other vulvar glands, may have been blocked or otherwise damaged
from past infection. Treatment would involve draining the glands (lancing
or aspirating them). Anti-inflammatories may also help for milder forms of
irritation.

Removal of the Bartholin's glands is sometimes discussed for
vulvodynia that doesn't respond to anything else (see "surgery"). Before
going that far, it may be useful to have the doctor merely open and drain
the glands. This can be done at the doctor's office and without the use of
general anesthesia.

Treatment of chronic irritation of Skene's glands is more
controversial. Skene's glands surround the urethra, near the bladder, and
are the homologue of the male prostate gland. Removal of these glands may
lead to incontinence, as well as making vaginal orgasm impossible. If the
glands seem to be inflamed, lancing, rather than removal, is strongly
recommended.

_7.10 Biofeedback_

The rationale for biofeedback can be found in Glazer's paper on
the vulvodynia.com website. The goal is not to strengthen the pelvic
muscles (which can be quite strong in vulvodynia sufferers), but to RELAX
them by learning to work them to the fatigue point. One of the biggest
problems in pursuing this treatment is locating a physical therapist or
other practitioner who can help you assess what the current resting levels
of your pelvic muscles are, and thus whether biofeedback would be
appropriate for you. Check the professional registry on the vulvodynia.com
website.

_7.10.1 Cost_

Successful biofeedback requires access to (purchase or rental of)
a home trainer, which is expensive, and many insurance companies simply
won't pay for "biofeedback." You'll need your practitioner's help to pitch
this as something more along the lines of "pelvic floor dysfunction." (If
they don't go for that, try "neuromuscular rehabilitation.") When your
physical therapist's report comes back with the measurements showing you
have weak and spasming pelvic muscles, send it to your insurance company,
along with Dr. Glazer's published study results, and copies of articles
from both the national vulvodynia organizations, which supply additional
data from other sources. A letter from a sympathetic doctor stating your
muscular problems have led to "loss of functioning" may be helpful.
Identify the home trainer you wish to buy or rent, and which features it
has that will enhance your recovery. THEN, present your plan's definition
of durable medical equipment and how the home trainer meets that
definition. Also investigate whether your insurance covers biofeedback for
migraines -- many do -- and you might be able to build a case on the
similarity of the need for tension reduction. If your insurance comes back
with a denial, don't fade away.  In writing, ask the company to inform you
of which medical sources they used in determining lack of medical
necessity, and ask for a copy of their written policy and criteria for the
use of biofeedback, as well as the company's policy/criteria/treatment
protocol for vulvodynia. The golden rule, for dealing with both insurance
companies and doctors: Don't be afraid to be a bitch!

_7.10.2 Which trainer?_

Features to look for are portability, programmability, memory,
ability to hook up to PC for printing out hard copy reports, type of
sensor used, light bar and audio feedback, and cost.

One list member has favorably mentioned the "Regain" machine.
Howard Glazer recommends the U-Control machine, citing that it's compact,
easy to use, reliable, and possibly the least expensive on the market.
John Perry, however, feels this to be a false economy. (See
http://www.vulvodynia.com)

_7.10.3 What's the goal?_

The idea behind biofeedback is not to strengthen the pelvic
muscles, but to get them to relax. If your physical therapist uses
biofeedback primarily to treat incontinence or interstitial cystitis, he
or she might recommend that your resting levels of pelvic tension be below
1 microvolt. Glazer and Perry recommend that, for the treatment of vulvar
pain, you learn to bring -- and keep -- muscular tension below 0.5
microvolts.

_7.10.4 How are Kegel exercises different from
biofeedback?_

The idea behind Kegel exercises is to strengthen the muscles of
the pelvic floor. This is often recommended for older women or for women
after childbirth to reduce the occurrence of incontinence and restore the
tone of the vaginal muscles, and is sometimes recommended for all women,
to improve the strength of contractions felt during orgasm. You can
practice contracting the muscles on your own, or you can buy (often very
expensive) "Kegel weights" to assist you. If you practice on your own, you
might want to meet at least once with a physical therapist first so that
you can ensure that you're doing the exercises correctly -- done
incorrectly, they can be harmful.

Since the goal of biofeedback isn't strengthening but relaxation,
it is a very different process than Kegel exercises. Theoretically, if one
were to use Kegels to exercise the muscles to fatigue, relaxation would
result. It is difficult, however, without the feedback the machine
provides, to isolate the correct muscles and have an accurate sense of the
level of work the muscle is experiencing. If you simply strengthen the
muscles without learning how to relax them, you may make your vulvodynia
worse by making the chronic pelvic tension BETTER at cutting off blood
flow to the vulvar tissue.

_7.10.5 What about TENS units?_

TENS machines are sometimes recommended for nerve or muscular pain
of all types. These machines work by electrically stimulating the muscles.
There are no published reports of success at using TENS units to reduce
vulvar pain, and we are not aware of anecdotal reports. This does not mean
they aren't potentially useful, however.

EMPI markets an "Innosense" machine which is a combination
stimulator (like the TENS machines) and EMG biofeedback device. This
product has not been available very long, and we do not have information
about its effectiveness.

_7.10.6 What about self-stretching and vaginal massage?_

If your skin irritation allows it, it might not be a bad idea to
acquaint yourself with your pelvic muscles. An URL to help you learn can
be found in the Resources section. If nothing else, you can get a better
understanding of where your pain seems to be coming from, and you can try
to practice isolating particular muscles and contracting and relaxing
them. This can help make you aware of the times during the day in which
you unthinkingly tense up. You may find it helpful to try pushing the
muscles out (as if you were going to the bathroom); to try pushing against
(NOT clamping down on) an inserted finger; or to imagine that your vagina
is sucking on a straw. Remember to breathe deeply while doing this.

_7.11 Exercise_

Vigorous exercise releases endorphins and can thus break the pain
cycle in a way similar to acupuncture. For women with hormone problems,
especially those related to insulin resistance, exercise can help by
increasing insulin uptake in the muscles. Gentle exercise is particularly
recommended for women with fibromyalgia. A consistent program of exercise
also boosts mood, helps the immune system, and improves sleep.

Some women find that sweat is too irritating to the vulva to
pursue strenuous exercise. Try doing an aerobics video at home naked from
the waist down. (Your partner may be especially encouraging on this one!)
Even if this still generates too much sweat, there are other forms of
exercise available, like T'ai Chi or yoga, or -- if the chlorine isn't
irritating -- swimming.

_7.12 Hormonal treatments_

There are several possible ways hormone problems might cause
vulvar pain, so there are several possible hormonal treatments.

_7.12.1_ Estrogen_

Dr. Willems, at the Scripps Clinic in San Diego, advocates the use
of Estrace (estrogen cream). This is NOT used to increase systemic
estrogen levels, but is used to vascularize (increase bloodflow) to the
vulva, as well as to thicken it. You will almost certainly have to educate
your doctor about this. Estrace is normally used by postmenopausal women,
who insert an applicatorful, and doctors are reluctant to prescribe it for
premenopausal women. Instead, you will be using an amount about the size
of a jellybean and will be applying it only to the external vulva. Dr.
Willems claims that, used in this way, Estrace is only minimally absorbed.
Blood levels of estrogen do not change, and patients do not exhibit
symptoms of hyperestrogenism, such as increase in breast size. However, be
aware that long-term studies on the use of low-level estrogen creams do
not exist, and the effects on the risks of breast- or endometrial cancer
are unknown. Furthermore, it is not clear whether discontinuing Estrace
causes a rebound effect: increasing the amount of hormone in the vulva
causes the estrogen receptors there to "down-regulate" -- become less
sensitive to -- the hormone. Thus, ceasing the cream can cause what little
estrogen is naturally there to be even less effective. Many women
experience initial irritation with Estrace, and some report itching that
feels like a mild yeast infection (this may actually be indicative of your
skin *healing* -- much in the same way that a healing scar itches). It
will probably take about six weeks to notice any benefits. Your doctor can
call in a prescription for Estrace to the Women's International Pharmacy,
which offers estrogen preparations in more soothing bases than are
normally used, and which may be considerably cheaper than your local
pharmacy. If you have a local compounding pharmacy, they may be able to
make an estrogen cream in a vitamin E base, which gives you the benefit of
an agent many have found helpful.

_7.12.1.2_ What about other estrogen-delivery
products?_

There is an insertable device, called Estring, which is left in
the vagina and which time-releases estrogen. The benefits of Estring are
that it has very little systemic absorption, doctors may more readily
prescribe it, and it is relatively inexpensive. Unfortunately, the device
itself is rather large and may cause discomfort for smaller women or women
prone to pelvic muscle spasms; the material the device is made of can
itself be irritating to the walls of the vagina; it also can uncomfortably
block menstrual bloodflow.

Premarin cream has been anecdotally suggested by women on the list
to not be as effective as Estrace, although no research has been conducted
on this question.

_7.12.1.3 Do I need to take progesterone?_

Dr. Willems suggests that the amount of estrogen you will be
absorbing should be too small to require additional progesterone, as long
as you cycle regularly. You may want to request that your doctor take a
baseline estrogen reading before you begin the treatment and then take a
reading a few months later (*when you're in the same place in your cycle*)
to make sure your blood hormone levels are not elevated. If you or your
doctor feel you should be taking progesterone -- or if you don't cycle
regularly -- be aware that "natural" progesterone can have far fewer side
effects than the synthetics usually prescribed. In Canada, an oral natural
progesterone called Prometrium is available. In the US, you can either get
your doctor to prescribe Prometrium and contact a foreign pharmacy to fill
it, or a compounding pharmacy can make an oral natural progesterone for
you that's similar to Prometrium.

_7.12.2 Testosterone_

Testosterone cream has been useful for some women with lichen
sclerosis and also for others with unspecified vulvar pain. Again, this
can be provided by a compounding pharmacist as a gel of 2% testosterone in
a 60 gm base of petroleum jelly (or other proportions your doctor
recommends). Some women using testosterone cream at higher doses or for
long periods of time have complained about permanent virilizing side
effects. This is also probably not a good option for women with irregular
periods or "polycystic ovarian syndrome", as androgen levels are already
high.

_7.12.3 Is it the cream or is it the hormone?_

Some doctors have suggested that it is not the hormone content of
the cream that matters; what really provides relief is the physical
barrier between your vulva and urine and outside irritants. This does not
seem to be wholly the case for most women. While physical barriers DO
offer some degree of relief, the same woman will generally find that some
creams are helpful and others do nothing. Many who use Estrace can see the
difference in visible irritation and thickening of the skin. The content
of the cream does seem to matter.

_7.12.4 Nutritional supplements for hormones_

There are some clinical studies suggesting that a variety of herbs
may be useful in regulating hormone cycles. These include licorice root,
black cohosh, and dong quai. (CAUTION: there is some evidence that
licorice root and St. John's Wort interact in a way that may be
dangerous.) Remember that none of these treatments are regulated, and that
finding a product that is as pure and potent as its labeling suggests may
be difficult. It is probably best not to try these treatments at the same
time, both so that you know what's working for you if you experience
improvement, and also to avoid unknown effects of interactions.

_7.12.5 Systemic hormone disruption_

If you have irregular periods along with hypo- or hyperglycemic
symptoms, a family history of diabetes, and some signs of too-high
androgen levels (facial hair, adult acne), you may have the so-called
polycystic ovarian syndrome, which is actually a form of insulin
resistance. A  low-carbohydrate and low-sugar diet may help you cycle, and
the resulting rise in estrogen levels may help the vulvar skin. Two drugs
are currently on the market which re-sensitize insulin receptors:
troglitazone (Rezulin) and glucophage (Metformin). Like the diet, these
drugs may make you resume having ovulatory cycles, which can help
normalize your hormones (as well as relieve your hypoglycemic symptoms).

_7.13 Low-oxalate diet_

A low-oxalate cookbook is available from the Vulvar Pain
Foundation (address in "Resources"), and there are websites (also in
"Resources") that list the oxalate content of many foods.

Some women use calcium citrate -- 500 mg, three times a day -- to
help bind the oxalates and prevent crystal formation. This doesn't
necessarily LOWER oxalate levels, but it may reduce the pain. If you can't
tolerate (or can't find) calcium citrate, calcium carbonate (such as is
found in TUMS) seems to also work, albeit for fewer people. Usually,
magnesium is taken as well (up to 1500 mg/day), to avoid constipation and
to help with calcium absorption. Some controversy exists as to when the
calcium should be taken. Clive Solomons argues that the calcium should be
timed to one's oxalate peaks; others argue it should be taken 20 minutes
before eating (for maximum absorption); still others feel it makes no
difference. Please note that many women have achieved success with the
diet regardless of whether they have had urinary oxalate levels tested and
without taking the citrate at specific times. The importance of *some
kind* of citrate supplementation to the low-oxalate diet is not disputed
by any of the different groups supporting the oxalate theory. Length of
time until pain reduction on the diet varies greatly, with some women
reporting improvement after a week or two, and others requiring six months
or more to see progress.

Reducing your oxalate intake may not curb your pain, even if your
problem is oxalate sensitivity. The amount of uric oxalate is determined
not only by dietary intake of oxalate but also by the ability of your
intestines to break down the oxalate.

There's been some discussion of a "good" bacterium, "oxalobacter
formagenis", which is being studied at the University of Iowa as something
that helps break down oxalates. As many women report that their pain was
triggered by antibiotic use, some have wondered whether the destruction of
oxalobacter formagenis through this kind of treatment is the source of
their problems.

Some women following the low-oxalate diet also make use of some of
the nutritional supplements listed in the next section.

_7.14 Nutritional supplements_

For all of the following, please bear in mind the usual warnings
that the FDA does NOT regulate the "nutrition supplement" industry, except
in ensuring that they can't make specific claims of beneficial results.
Independent consumer rights groups who have tested these products
frequently find that the potency and purity is NOT as high as what's
claimed on the label. If you find a specific brand that seems to work
well, please share that information with the list.

Also, taking a vitamin (or, for that matter, an antidepressant) is
not like popping an aspirin. It will take time (on the order of weeks) for
the substance to build up before you notice an effect.

+ biotin

Some seem to feel this reduces inflammation and itching. Also note
that if you do have intestinal yeast problems, you may have a biotin
deficiency.

+ calcium citrate

Usually taken to help bind oxalates (see 6.1.2 and 7.13).

+ chondroitin

This is a preparation containing cartilage, usually from sharks.
Chondroitin and glucosamine (see below) are often used together. Clinical
studies show that these treatments can help improve arthritis, and some
feel they have helpful effects on vulvodynia and fibromyalgia as well.
While many feel that glucosamine is more effective when used in
conjunction with chondroitin, there are not currently studies showing the
effectiveness of chondroitin by itself.

+ glucosamine

Also called N-acetyl-glucosamine, and hence abbreviated NAG. NAG
is an essential building block of hyaluronic acid (HA), which forms a
gel-like substance in connective tissue and skin. Low levels of HA can
make the skin more prone to inflammation by many different agents. There
are three different forms of glucosamine: acetylated (NAG), hydrochloride,
and sulfated. The general consensus seems to be that the acetylated form
is best (and -- big surprise -- most expensive), followed by the sulfated
form. NAG may also help with urinary burning and frequency, fibromyalgia,
irritable bowel, and burning or tingling mouth.

+ grape seed extract

Grape seed is a powerful (and expensive) anti-oxidant.
Anti-oxidants are good for your body in general, since they absorb stray
oxygen particles ("free radicals") that can damage tissue. It has not been
conclusively shown that anti-oxidants can help *heal* damaged tissue. Try
100 - 150 mg/day. Many women have complained of increased urinary burning
while taking grape seed. If this occurs, try breaking up the dose taken
all at once, or start with a smaller amount. Also be aware that grapeseed
is not the same as grapefruit seed, which is touted as a powerful
antifungal/antibacterial and is sometimes recommended to combat yeast.

+ guaifenesin

According to Dr. St. Amand, who has alienated some vulvodynia
sufferers with his claim that all vulvodynia is a form of fibromyalgia,
guaifenesin is THE cure for vulvar pain. He also claims that the action of
guaifenesin is blocked by topical or internal use of salicylates, which
are found in numerous personal products (shampoo, deodorant).
Unfortunately, this makes his claim extremely difficult to conclusively
prove or disprove. However, some women have reported decreased pain while
taking guaifenesin, usually in conjunction with the low-oxalate diet.
Not a "nutritional supplement" per se, guaifenesin is available OTC as an
expectorant.

+ l-Arganine

This is a non-essential amino acid supplement that can be bought
over-the-counter. It can raise the nitrous oxide levels in the bladder and
help calm urethral spasms. Try 500 mg/ 3 times per day. CAUTION: if you
have herpes, use of l-arganine can cause an outbreak or possibly even
bring out previously dormant infections.

+ ox-absorb

This is a preparation supposed to help neutralize oxalates. Try
500 mg/3 times per day.

+prelief

This may help those whose pain seems to flare after eating acidic
foods. Take it before you eat the irritating food.

+ vitamins A or E

Some feel that these reduce inflammation or itching. Be aware that
these are NOT water-soluble, which means you can experience adverse
affects from taking too much.

_7.15 Pain medication_

These are generally used for vulvodynia and constant pain rather
than for pain with penetration. Research has shown that those who use
narcotic pain relievers out of necessity (as opposed to for recreation) do
not seem to develop addiction. You will have more success obtaining these
drugs if you go to a pain clinic, rather than going through a GYN or your
GP. Be aware that you can develop tolerance to any pain medication. Do not
increase your dosage without your doctor's approval. You may also want to
switch medications rather than increase your dosage.

+ Xylocaine (lidocaine hydrochloride)

Topical lidocaine IS used for vestibulitis. The cream, usually a
2.5% solution, can be applied before intercourse to temporarily numb the
vestibular area. (If you apply it sparingly and keep it away from the
clitoris, you should be left with plenty of sensation.) Some women find
that it initially stings upon application or that it loses its
effectiveness with continued use. Some doctors may insist that this is THE
cure for vulvodynia. Find another doctor.

+ Methadone

A powerful painkiller that is frequently given as an alternative
to morphine.

+ Morphine

To be taken internally only for extreme pain. Some doctors may
prescribe topical morphine cream, but it is not clear how much systemic
absorption takes place, or whether this is superior to the use of
xylocaine.

+ OxyContin

A narcotic pain reliever.

+ Percoset (also called Roxicet, Tylox, Roxitox)

Acetaminophen with codeine (an opiate).

+ Ultram

A centrally-acting analgesic. Doctors may prefer to prescribe this
one because it has less addiction potential than do narcotics. Because
this drug affects the serotonergic system, make sure to let your doctor
know whether you are taking St. John's Wort or prescription
antidepressants (especially MAO-inhibitors).

+ Vicodin (also called Anexsia, Co-Gesic, Duocet, Lorcet, or
Panacet)

Similar to Percoset, this drug is an even weaker mixture of
codeine and acetaminophen. Taking 500-1000 mg Vicodin can provide
temporary relief.

_7.16 Surface irritants_

Whether your problem is CAUSED by contact dermatitis, or your skin
has become easily irritated due to other causes, the following may help:

+ wearing only 100% cotton undyed underwear  (or going without
underwear!)
+ using only 100% flannel undyed menstrual pads
+ washing underwear and pads in a mild soap like Dr. Bronner's
+ double-rinsing everything coming in contact with the vulva
+ using toilet paper that has no added colors or perfumes
+ not using soap on the vulva

It is a myth that the vulva needs anything more than water to keep
clean. Soap can wreak havoc on the balance of vaginal flora and exacerbate
pain. If you feel you must use soap, oatmeal soap (or a bath with Aveeno
Oatmeal Powder) seems to clean without causing irritation.

_7.17 Surgery_

This is probably the single most controversial issue on the list.
The facts we all agree on: surgery should be a last resort, not a first
resort. Surgery can make you worse.

There are two types of surgery available: scalpel and laser. With
scalpel surgery, the "Woodruff procedure" is used; the sensitive areas
around the vestibule are excised, and the healthy skin is pulled over
them. Recovery can take weeks.

Many different types of lasers are used for laser surgery. The
worst results seem to be from doctors who laser too aggressively, damaging
healthy tissue. The skin CAN be pulled over the lasered area, but
generally is not. Recovery time can take longer and be more painful than
with scalpel surgery.

It seems that most of the cases of worsening after surgery come
from the use of laser surgery, but it's not clear whether that's because
more laser than scalpel surgeries are performed.

If you are considering surgery, it is absolutely imperative that
your doctor be able to provide you with the phone numbers of past
patients. Talk to them. There are horror stories out there (see, for
instance, http://detnews.com/menu/stories/26153.html). Do not allow
yourself to be talked into a vestibulectomy if all you need is a minor
resection. Despite the pain and expense and recovery time, it is better to
get a second operation if you need one than to have healthy tissue removed
or damaged.

The typical claims made are that 60% of women will benefit from
surgery and 10% may be made worse. This first number is lessened, however,
by the chance of pain recurrence, which tends to be high. If you do have
surgery, make sure your doctor is aware of the literature suggesting
recurrence rates are lower if a course of interferon shots is undertaken
at the same time as the surgery. For any "success rate" your doctor quotes
you, make sure you ask whether he or she has followed up with the patients
a year or two later.

_7.18 Yeast_

Yeast problems seem to come in two varieties: vaginal yeast
infections (frequent or resistant), and so-called "systemic" (or
intestinal, at least) yeast infections, which may make the vaginal ones
more likely. Most women on the list agree that antifungal creams (the
"-azole" creams) do NOT work and may make the pain worse. Intestinal yeast
treatment has two goals: to KILL the yeast present, and REPLACE it with
"good" bacteria. Many people get yeast overgrowth while taking antibiotics
because the drugs kill the "good" bacteria, which allows the yeast to gain
purchase in the intestines, and prevents the bacteria from recolonizing.
In an intestinal yeast infection, then, you really need to take both steps
-- both getting rid of the yeast while also supplying the kind of bacteria
that should be there.

The women on this list have recently become aware of an exciting
body of research on yeast allergies and vaginal yeast infections (see
"Marjorie Crandall, PhD" in the "Resources" section) in which the yeast
burrows into the submucosal (deeper) layers of skin and hence neither
shows up in cultures nor is responsive to topical antifungals. If you
suspect you may have these conditions, you can be tested for the presence
of elevated anti-candida IgE antibodies in your vaginal discharge. Yeast
allergies can be helped by hyposensitization (injection with tiny amounts
of the allergen), just like other allergies. Allergies and submucosal
infections can also be treated by a long course of oral antifungals. Be
aware that if your problems ARE yeast-related, your treatment may
initially make you feel much worse, because the dying yeast release toxins
into your body. This "die-off" reaction is only temporary.

_7.18.1 Prescription treatments_

+ Diflucan (fluconazole)
+ Nystatin
+Sporonax (itraconazole)

_7.18.2 A damn good alternative to fungal creams_

Boric acid is a white powder you can buy very cheaply at places
like Wal-Mart. (Look for it in the first aid supplies section.) You can
make it into a vaginal suppository by filling small empty gelatin capsules
with it. If you don't have access to empty gel caps, you can also have a
pharmacy create the suppositories for you if you have a prescription from
your doctor. Boric acid alters vaginal pH and is extremely effective at
stopping yeast infections. Some women find that the boric acid causes mild
burning when the capsule dissolves; the powder itself is also rather sharp
and can cause irritation. It is normal for this treatment to cause a thick
discharge, which can be uncomfortable, depending on where you are in your
cycle (if the discharge isn't too acidic, it can actually be soothing).
You may want to use a pad the next morning. Try using one suppository at
bedtime every other day for five or six days. For chronic yeast
infections, try one capsule per week. Note that, like topical antifungals,
this will only help kill the yeast in the surface layers of the skin.

_7.18.2.1 Doesn't it kill roaches?_

Probably. Which says nothing about its effectiveness at also
killing yeast. MOST of the treatments available are potentially harmful or
toxic; the trick is in using them judiciously for how they can help us.
Boric acid CAN be absorbed systemically and thus should not be used in
large doses for a long period of time. There is only a single instance of
fatality on record resulting from boric acid use, and that came from an
accidental large-dose ORAL ingestion.

_7.18.3 Natural yeast killers_

+ Biotin supplements
+ Black walnut hull
+ Capryllic acid
+ Cranberry juice (must be unsweetened), mixed with oatstraw tea
(or oatstraw tea on its own)
+ Echinacea
+ Garlic -- preferably lots of fresh, raw garlic (if you chop it
finely and swallow it without chewing, the odor isn't too
bad), or kyolic garlic tablets. Bonus: may lower
cholesterol. Garlic can also be used as a vaginal
suppository to combat yeast infections -- wrap a clove in
gauze and insert it. Be careful not to nick the
clove, or the garlic juice may burn you.
+ Goldenseal
+ Grapefruit seed extract (though this also acts as an antibiotic
and can cause digestive problems). You can also douche
with this, but make sure to use a VERY DILUTED
preparation.
+ Homeopathic treatments: Yeastaway, Yeastguard
+Pau D'arco tea
+Tea-tree suppositories

Dietary modifications will also help: cut sugar, reduce carbohydrates, and
eat more vegetables.

_7.18.4 Replacing the "good" bacteria_

+ FOS (fructo-oligosaccharides)

These are "food" for your system's good bacteria. Supposedly,
studies have shown that people using FOS have their levels of intestinal
yeast go down. Available at health food stores.

+ L. acidophilus and B. Bifidum

These are bacteria you WANT in your gut (probiotics), though you
may have to use a yeast-killing agent first in order to create space on
the intestinal wall for them. Most (but not all -- check the label)
yogurts contain them. You can also buy liquids containing these bacteria.
Go for one that offers a high count (over 3 billion L. acidophilus), and
by all means stick to the refrigerated variety -- it isn't at all clear
how many organisms survive the processing required to produce the chewable
acidophilus tablets. It may also be the case that yeast overgrowth starts
in the mouth, in which case liquid is better than taking capsules that
don't dissolve until they hit the stomach.

_7.19 Symptom treatments_

These are things that will not cure you, but may make you more
comfortable in the meantime (and may assist with healing by breaking the
pain cycle).

Oddly, one of the first best things you can do is to learn more
about your body. Use a hand mirror and see for yourself EXACTLY where the
pain is. There's a huge psychological difference between feeling you have
a diffuse pain "somewhere down there" and being able to tell yourself
EXACTLY WHICH five square centimeters your life would be different
without. Try it --  it really can alter how you mentally represent the
pain.

Non-hormone or non-vitamin creams (like vaseline) can soothe by
protecting the skin from physical irritants and urine. Over-the-counter
vaginal moisturizers (like "Replens") can help, as can sexual lubricants.
Check ingredients carefully, however. Many women have a sensitivity to
propylene glycol and other preservatives such as parabens that are found
in many lubricants (and other products). Some creams contain mineral oil,
which moisturizes the surface of the skin only by harmfully drawing out
moisture from deeper layers, creating the need for constant use. Oils
(even Crisco!) are fine for use on the external vulva, but if you're using
something vaginally, try to make sure it's water-soluble.

Spraying your vulva with water after or during urination can help,
as can applying vitamin E oil after urination. You can also purchase a
home bidet that installs into a standard toilet (info in "Resources").

Sitz bath containers can be purchased at drugstores. The idea
behind Sitz baths is to alternate hot and cold water, thus drawing blood
into and out of the affected area. Baths with sea salt or baking soda have
also been found to help.

There's been a bit of controversy over the application of cold or
heat to the vulva. Most agree that heat packs can dry out the skin, thus
leading to further problems. Heat in and of itself, however, is probably
GOOD for the vulva, as it draws blood (with its nutrients and lymphocytes)
into the area. Alternatives to the use of heat packs: hairdryers (also an
excellent idea after showering or bathing, particularly if you have
problems with yeast infections), or shining a reading lamp on the area.
The consensus on the use of cold is that is can provide dramatic temporary
relief, but care must be taken that the pack is not TOO cold or the use
too frequent, as more damage to the skin may result. Remember, cold keeps
blood AWAY from an area, and it is INCREASED vascularization that you
want.

Some women have reported that daubing the area with witch hazel is
soothing. Be aware that if you have even the tiniest fissures in your
skin, this could really burn. Many women also claim that drinking a large
amount of water each day -- either bottled or tap -- can really help.
Since this is one of the best things you can do for your health anyway,
it's a good place to start.

_7.20 Other miscellaneous treatments_

This is a collection of things that haven't really been fully discussed.

+ Magnets

Placed next to the vulva. Not as crazy as it sounds: there are
bonafide research studies being run investigating the effects of magnets
on fibromyalgia and chronic fatigue, and anecdotal reports of magnets'
effects on pain abound.

+ Neoglycopolymer

According to a recent report in the journal "Nature", this is a
substance which can remove inflammation at the cellular level, and may
fight autoimmune diseases by removing the antibodies that are produced in
those cases. This is currently being developed, and applications are years
away.

+ Thuja oil

Thuja Occidentalis, or northern White Cedar, can be applied
externally as an oil or taken internally as a herbal tincture or
homeopathic tablet. Although not scientifically verified, some claim that
it can treat HPV lesions.

**8. IS THERE ANYTHING I SHOULDN'T TRY?**

One of the first things doctors seem to want to prescribe are
steroid creams, which is strange, because they don't seem to help in most
cases and can definitely make things worse. Steroid creams thin the skin,
which can lead to more pain. Oral steroids like prednisone may temporarily
help the pain but are also powerful drugs that will disrupt your
hypothalamic-pituitary axis and thus cause hormone problems (and just
plain make you crazy). That being said, steroid creams CAN break the
inflammatory cycle, if you have a good response with only short-term use.
If you do use either oral or topical steroids, take care to taper the use
off gradually so as not to get a rebound effect (and don't expect your
doctor to tell you that).

As previously mentioned, don't let a doctor convince you to try
surgery as a first option. Be cautious about those who claim to "laser
aggressively."  Steer clear of ANY surgeon who can't produce the names of
satisfied women.

Many of the topical treatments commonly prescribed for HPV will
not work, hurt terribly, and can worsen your condition. These include
trichloracetic acid (TCA), Efudex, and podophilox (which is actually
absorbed systemically and is toxic). The idea behind TCA and podophilox is
to destroy the HPV lesion -- which won't work if your form of HPV is
subclinical (present without visible indications like warts). The idea
behind Efudex is to completely destroy the top layer of skin of the vulva,
to allow new healthy skin to grow back. (Efudex is generally the first
treatment option for vulvar cancer.) Creams containing very low
concentrations of Efudex (below 2%) MIGHT be helpful; creams containing
higher levels have given women severe burns on their labia. Be careful!

**9. HOW DO I DEAL WITH DOCTORS?**

First, put aside all your gender socialization...

The NVA (National Vulvodynia Association) and VPF (Vulvar Pain
Foundation) can refer you to a doctor in your state (hopefully) who knows
something about vulvodynia. Please note that this is not the same things
as a "Good Housekeeping Seal"; these organizations cannot guarantee the
QUALITY of the doctor. Some of the worst horror stories on this list have
been about doctors suggested by these organizations.

Doctors seem to come in three basic varieties: those who know
nothing about vulvodynia; those who think they know something, but don't;
and those who know something about it. If you find any in the last class,
please share their names with the list.

Doctors in the first category are fine if they are willing to do
some research on their own and consult with the doctors you alert them to.
Doctors in the second class are dangerous and tend to be rather defensive.
Make it clear to the doctor that you know that many women have to try a
number of different treatments before finding one that works for them.
Explicitly ask your doctor whether he or she is interested in dealing with
a chronic pain case or will lose motivation if the first few treatments
don't work. Don't be afraid to ask them for a referral for another
provider if it seems that your problems and their interests don't mesh.
Don't trust your doctor to provide the least invasive procedures first.
Don't assume that a confident tone means knowledge.

Don't be afraid to be a bitch. Be firm, and try to be unemotional.
Insist on getting all your questions answered, no matter how long it
takes. If you're getting examined, have the doctor let you get dressed
before you put your questions to them. Question dubious statements.

Do your homework. Bring printouts of articles, as well as at least
an outline of what you hope to accomplish during the appointment, if not
an explicit list of questions. Tell your doctor about Glazer's website and
the case collaboration feature  it has. Tell your doctor about this list
-- your anecdotal account of your symptoms is more compelling if you are
able to tell (or bring the e-mail) of a dozen other women who experience
exactly the same thing. Use positive reinforcement, too, of course:
express your gratitude to a doctor who goes the extra mile, and let the
NVA and VPF (and this list!) know if you find a particularly good one.

If you do have a horrible experience: (1) feel free to use the
list to vent; that's what we're here for. (2) Write a calm letter to the
doctor explaining why you aren't coming back. This really is necessary --
otherwise, from the doctor's point of view you mysteriously disappeared
(he or she may even count you in his or her "cured" rate!) and the next
patient will be as mistreated as you were. (3) Notify the NVA and VPF of
your experiences and suggest that the doctor should not be recommended to
vulvodynia sufferers.

Some good questions to ask any doctor:

1.  How many patients have you prescribed this treatment for, and how many
have actually followed through with it?
2.  What are your success rates?
3.  Are there any journal articles available for me to read that address
this treatment?
4.  Are there any patients that have made themselves available as
references that have undergone this treatment?
5.  What are the possible side effects? What are the side effects I may
hear about, but that you don't feel are actual side effects?
6.  What are my other treatment options?
7.  What will the next course of action be if this treatment does not
work?
8.  How many patients have come in for a follow-up visit six months or a
year after treatment so you could determine whether the treatment
had long-term positive or negative consequences?

**10. HOW DO I DEAL WITH RELATIONSHIPS?**

It is important for both you and your partner to recognize that
vulvodynia doesn't JUST affect the vulva, but your entire perception of
your sexuality. Many relationship problems arise less from the lack of
intercourse than