by Howard
I. Glazer, PhD, OBGYN.net Editorial
Advisor
Table Of Contents
**1. WHAT ARE VULVODYNIA AND VULVAR VESTIBULITIS?**
**2.
DO WOMEN WHO HAVE VULVAR VESTIBULITIS OR VULVODYNIA HAVE
ANYTHING
ELSE IN COMMON?**
**5. WHAT CAUSES VULVODYNIA AND VULVAR VESTIBULITIS?**
_5.1 Allergies_
_5.1.1 Chemical sensitivities_
_5.1.2 Oxalate sensitivity_
_5.1.2.1 Why does the diet work?_
_5.1.2.2 Diagnosis_
_5.1.3 Yeast allergies_
_5.2 Autoimmune disorders_
_5.3 Bacterial infections_
_5.3.1 B-Strep _
_5.3.2 Cytolic vaginosis_
_5.4 Erythema nodusum_
_5.5 Excessive sympathetic arousal_
_5.6 Fibromyalgia_
_5.7 Hormone problems_
_5.8 Human Papilloma Virus (HPV)_
_5.9 Irritation to the skin_
_5.10 Lichen sclerosis_
_5.11 Molluscum contagiosum_
_5.12 Nerve damage_
_5.13 Muscle tension_
_5.14 Sex abuse_
_5.15 Vaginismus_
_5.16 Yeast_
_6.1 Test your doctor_
_6.2 Sample treatment plan_
_6.3 Acupuncture_
_6.4 Antibiotics_
_6.5 Anti-convulsants (anti-epileptics)_
_6.6 Antidepressants & anxiolytics_
_6.6.1 Some tricyclics
_6.6.1.2 Side effects (and remedies)_
_6.6.2 Other useful non-tricyclic antidepressants_
_6.6.3 Anxiolytics_
_6.7 Anti-inflammatories_
_6.8 Antivirals_
_6.9 Bacterial infection treatments_
_6.9.1 Pain from past infections_
_6.10 Biofeedback_
_6.10.1 Cost_
_6.10.2 Which trainer?_
_6.10.3 What's the goal?_
_6.10.4 How are Kegel exercises different from biofeedback?_
_6.10.5 What about TENS units?_
_6.10.6 What about self-stretching and vaginal massage?_
_6.11 Exercise_
_6.12 Hormonal treatments_
_6.12.1_Estrogen_
_6.12.1.2_What about other estrogen-delivery products?_
_6.12.1.3 Do I need to take progesterone?_
_6.12.2 Testosterone_
_6.12.3 Is it the cream or is it the hormone?_
_6.12.4 Nutritional supplements for hormones_
_6.12.5 Systemic hormone disruption_
_6.13 Low-oxalate diet_
_6.14 Nutritional supplements_
_6.15 Pain medication_
_6.16 Surface irritants_
_6.17 Surgery_
_6.18 Yeast_
_6.18.1 Prescription treatments_
_6.18.2 A damn good alternative to fungal creams_
_6.18.2.1 Doesn't it kill roaches?_
_6.18.3 Natural yeast killers_
_6.18.4 Replacing the "good" bacteria_
_6.19 Symptom treatments_
_6.20 Other miscellaneous treatments_
**7. IS THERE ANYTHING I SHOULDN'T TRY?**
**8. HOW DO I DEAL WITH DOCTORS?**
**9. HOW DO I DEAL WITH RELATIONSHIPS?**
**11.
RESOURCES **
**1.
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."
**2.
DO WOMEN WHO HAVE VULVAR VESTIBULITIS OR VULVODYNIA HAVE
ANYTHING ELSE IN COMMON?**
There are many women 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 to use surveys to
discover what else may correlate with vulvar pain. While
such attempts
are valuable, 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 whether a connection to vulvar
abnormalities
exists.
**3. 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!
**4. CAN IT GET
BETTER?**
YES. There are women whose symptoms have disappeared! Many women 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.
**5.
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
6.
_5.1 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.
_5.1.1
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.
_5.1.2 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 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.

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