RE: Goldstein, MD and article

[Guest guest]

Anne, if you are close to Baltimore, land - then why don't you avail yourself of s Hopkins University, where you can find, I believe, at least 2 therapist to do the vaginal work, one was located at Hopkins proper and one at the Bayview facility. Her name is and she is with the physical therapy facility at Bayview. They take insurance. In the meantime, couldn't you contact the doc you work with now for scripts for the Cymbalta and Neurontin?

painkillers

I asked a question the other day and had not received any replied relating to pain killers such as Voltaren or Ibuprofen. I was at one point on a large dosage of these and I was wondering if that could have changed my vuvlar pain significantly. I was feeling better at the time and was on a treatment for vulvar pain (guaifenesin). I was wondering which one contributed the best to pain releif: guai or pain killers. I have never heard of Voltaren and Ibuprofen to be used for this type of pain. Does that mean that I should give all the credit to guai rather than painkillers?ThanksAnja

[Guest guest]

I wish Debbie were here right now Dee. lol

Kristy

__________________________________________________

[Guest guest]

True Arline, but I know that if Debbie were here right now she

would have something to say.

Kristy

__________________________________________________

[Guest guest]

Sorry, I don't know a thing about him and I don't know the backstory

that is being hinted at in the posts. If I did I'd tell you straight

away.

> Has anyone seen him or been treated by him? I just talked with him

on the

> phone, and told me that dyesthetic vulvodynia is nerve damage. He

says

>

[Guest guest]

I know, Kristy, and wish she were here, too. Since I

didn't go to Law School, I don't feel comfortable in

doing anything but " hint " around, as they say, but

also add I wouldn't go to him. If anybody has

something good to say, they ought to say it. I had to

read that email several times as I wondered if this

were another trick being played.

> True Arline, but I know that if Debbie were here

> right now she

> would have something to say.

>

__________________________________________________

[Guest guest]

Here is what Goldstein said about treatment of dysesthetic vulvodynia:

August 3, 2003

Treatment

The concept of treating neuropathic pain is very simple. Numb the

nerves. If you limit electrical signals going through the nerves,

then the nerve can start to heal. Healing only begins when you are

out of pain. Secondly, nerves heal very slowly over months not

days/weeks.

So which medicines numb nerve? Of course, the tricyclic

antidepressants – amitriptyline, nortriptyline, desipramine do this

(probably the best) but they have side effects: sleepiness, dry

mouth, constipation, palpitation. Just because you may have a side

effect- even palpitations does not mean that the medication is

dangerous. I do not have a " favorite " in the group. If one is not

tolerated, then I try the next.

Neurontin (gabapentin) an anti- seizure medication, also " numbs

nerves. " I find that it works best for focal pain such clitorodynia.

There is a HUGE range of doses that can work – from 100-4500mg. It

is a relatively safe medication. In my experience it sometimes works

Very well, other times not at all. If I suspect that the pain may be

from herpes (herpetic neuralgia) then I will start with Neurontin

first.

>Has anyone seen him or been treated by him? I just talked with him on the

>phone, and told me that dyesthetic vulvodynia is nerve damage. He says

>you have to hit it hard with nerve numbing medications (neurontin, cymbalta,

>etc,) and introvaginal physical therapy at the same time. He says

>biofeedback stinks by itself.

>

>

>

>If I went to see him, his first visit would be 600-1000 dollars. He has

>offices in Ny and Washington DC. He does not take any insurance.

>

>

>

>He says he has about a 80% success rate, with success being defined as 8-90%

>reduction in pain and functioning.

>

>

>

>Wondering if anyone has any experiences with him?

>

>

>

>Thanks,

>

>

>

>Anne

>

>

>

>http://www.ourgyn.com/article_retrieve_printer.php?articleid=63

>

>

>

>

>Vaginal Pain and Itching with No Known Cause?

>

>By:

>

> Goldstein, MD

>

>It Could be Vulvodynia. Here's a Book-Mark Guide

>

>

>

><http://www.hisandherhealth.com/cgi-bin/ubb_newshe/ultimatebb.cgi?/forum/2.h

>tml>

>

>

>READER CAUTION NOTE: This article contains medically graphic images of

>female genitalia to illustrate the symptoms of vulvodynia.

>

>Your visit to the gynecologist has ended with you thinking that you're

>crazy. You've got vaginal burning, pain, and rawness that won't go away.

>Your genital area may be red and irritated looking. Your doctor has said

>that there is no infection, nor any other disease that is causing the

>problem. You've tried creams, over-the-counter yeast infection treatments,

>and every other itching treatment available. It's not in your head; you are

>not losing your mind. It could be vulvodynia.

>

>The International Society for the Study of Vulvovaginal Disease (ISSVD)

>defines Vulvodynia as chronic vulvar discomfort or pain, characterized by

>burning, stinging, irritation or rawness of the female genitalia in cases in

>which there is no infection or skin disease of the vulva or vagina causing

>these symptoms. Burning sensations are the most common, but the type and

>severity of symptoms are highly individualized. Pain may be constant or

>intermittent, localized or diffuse.

>

>Vulvodynia has been classified into the following subtypes: Dysesthetic

>vulvodynia, Vulvar Vestibulitis Syndrome, and Vulvar Dermatoses. In

>addition, vulvar skin disorders known collectively as " Vulvar Dermatoses "

>can also cause vulvar pain. This article describes in detail dysesthetic

>vulvodynia, vulvar vestibulitis, and the vulvar dermatoses in detail so that

>you can have the knowledge to speak with your doctor about your particular

>symptoms.

>

>Dysesthetic Vulvodynia

>Dysesthetic vulvodynia is defined as vulvar burning, rawness, and irritation

>without know cause. The pain is generally non-provoked- there is pain

>without any contact. It is usually generalized to the entire vulva, but

>sometimes can be located in one area (e.g. pain of the clitoris only called

>clitorodynia). The cause of this disorder is unknown. Most experts believe

>that the pain of dysesthetic vulvodynia is caused by a combination of nerve

>damage (with central sensitization) and pelvic floor muscle dysfunction.

>What does this all mean?

>

>Nerve damage: The sensation of burning is almost always neuropathic pain

>(nerve pain.) How can you get nerve damage? Many ways. Back problems,

>allergic reactions, trauma, stretching the nerve, persistent infections

>(however, infection is almost always overemphasized as a cause of nerve

>damage).

>

>Central sensitization: There are pain nerve centers in the pelvis, spine,

>lower parts of the brain, and the cortex (higher parts) of the brain. When

>these pain centers get persistent signals, they get more sensitive, so

>almost all sensations are then perceived as pain. This does NOT mean " it's

>in you head " or " you're crazy. " This is a physiologic process and can be

>seen on brain scans called PET scans. Women with central sensitization

>experience pain more easily. Lastly, this is why stress and anxiety increase

>pain. The chemicals (called neurotransmitters) that activate these pain

>centers are the same neurotransmitters that are increased during

>stress/anxiety.

>

>Pelvic muscle dysfunction: The muscles of the pelvic floor become

>dysfunctional- too tight and weak. When there is an increase in muscle tone

>then the blood flow through the muscles decreases. A 10% increase in muscle

>tone decreases blood flow by 50%. When there is decreased blood flow there

>is decreased oxygen, decreased glucose, decreased nutrients not just to the

>muscles, but to the rest of the tissue of the vulva. Lactic acid builds up

>and the muscles become tight and weak and they hurt. It is as if they are

>running a six-month marathon.

>

>Treatments for Dysesthetic Vulvodynia

>

>We must address all of the components above to treat DV. If you ignore one

>of these you are much more likely to remain in pain. The concept of treating

>neuropathic pain is very simple: " Numb the nerves. " If you limit electrical

>signals going through the nerves, then the nerves can start to heal. Healing

>only begins when you are out of pain. Secondly, nerves heal very slowly over

>months not days/weeks.

>

>So which medicines numb nerves?

>

>Tricyclic antidepressants - amitriptyline, nortriptyline, desipramine do

>this (probably the best), but they have side effects: sleepiness, dry mouth,

>constipation, palpitation. Just because you may have a side effect (even

>palpitations) does not mean that the medication is dangerous. I do not have

>a " favorite " in this group. If one is not tolerated, then I try the next.

>

>Neurontin (gabapentin) an anti- seizure medication, also " numbs nerves. " I

>find that it works best for focal pain such as clitorodynia. There is a HUGE

>range of doses that can work - from 100-4500mg. It is a relatively safe

>medication. In my experience it sometimes works very well, other times not

>at all. If I suspect that the pain may be from herpes (herpetic neuralgia)

>then I will start with Neurontin first.

>

>Venlafaxine (Effexor). Dr. Wasserman and I were awarded a large grant

>from the NVA to do a randomized study for these two medications for DV. We

>have had excellent results with these medications and are very excited about

>this study. I expect that we will start enrolling patients in our study in

>October 2003. I will post more details about the study when we have received

>the final OK from our investigational review committee.

>

>For most diseases the general rule is to try to treat with one medication

>only. This is NOT true of DV. Usually, I use at least two (sometimes three

>or four medications). For example I often combine Effexor with Neurontin +

>an anti-inflammatory (such as Celebrex or Bextra) + topical lidocaine. This

>has proven to be an excellent combination.

>

>It is ESSENTIAL that the pelvic floor dysfunction is also addressed. A

>combination of biofeedback and physical therapy often work the best. The

>concept behind both biofeedback and physical therapy is that the muscles of

>the pelvis become very tight and tender when a woman is in chronic pain.

>When the muscles are tight, they constrict the blood vessels and nerves that

>run through the muscles. This leads to decreased oxygen and nutrients going

>to the pelvis and can help perpetuate vulvodynia. In biofeedback a machine

>with vaginal sensors measures the activity of the muscles of the pelvis

>(a.k.a. the " pelvic floor " muscles). By using the biofeedback machine a

>woman is able to train the muscles of the pelvic floor to relax. Normally

>the muscles of the pelvic floor are not under voluntary control; however,

>the machine " teaches " you how to controls these muscles. There are several

>different types of physical therapy including reflexology, cranio-sacral

>therapy and myofascial release, and trigger point muscle message. All of

>these modalities are used to relax overly tight and tender muscles of the

>pelvic floor.

>

>

>

>VULVAR VESTIBULITIS SYNDROME

>

>Women with VVS have pain only in the vestibule, and only during or after

>touch or pressure is applied (see illustration above). Burning sensations

>are the most common symptom and may be experienced with some or all of the

>following: sexual intercourse, tampon insertion, gynecologic examination,

>bicycle riding, and wearing tight pants. Traditionally, VVS is diagnosed

>using three criteria established by Freidrich. These are: severe pain during

>attempted vaginal entry, tenderness to pressure localized to the vulvar

>vestibule, and erythema of the vulvar vestibule. In the last few years,

>increased awareness of vulvar vestibulitis syndrome (VVS) has led to

>exciting new research. This research focuses on many different aspects of

>VVS including possible genetic, infectious or allergic etiologies, and on

>multiple treatment regimens. Even basic assumptions of early researchers

>have been questioned, leading to a greater understanding of VVS.

>

>Two studies question our assumptions that VVS has an infectious etiology.

>Until recently, many physicians believed that VVS is a consequence of human

>papillomavirus (HPV) infection. Using polymerase chain reaction (PCR)

>amplification to detect HPV DNA, Morin and co-workers [3] showed, however,

>that HPV is not more common in women with VVS. Another study, by Bornstein

>et al. [4], questions the assumption that women with VVS have chronic

>candidal infections. They showed that prolonged treatment with the oral

>antifungal, fluconazole, was ineffective treatment for VVS. While both of

>these studies do not eliminate the possibility that VVS is caused by an

>initial infection, it appears that VVS is not a consequence of chronic

>infections of HPV or Candida.

>

>Recent studies from Sweden and Israel have independently shown abnormalities

>in the vestibular mucosa of women with VSS. Their conclusions showed that

>some women have ten times the area of nerve fibers within their vestibular

>mucosa. These nerve fibers are called nociceptors, which are " the pain "

>sensing endings. Therefore, even very light touch is extremely painful.

>Other studies have shown a possible genetic link that causes an exaggerated

>inflammatory or immune response. Data also indicates that some women have

>increased pain perception not limited to the vulvar area (such as

>fibromyalgia). [see Appendix A for detailed information on these particular

>studies.]

>

>Treatments for Vulvar Vestibulitis Syndrome

>

>Over the past few years many studies have examined treatment options for

>VVS. Several different treatment modalities have proven to be very

>successful in treating VVS. To date at least 10 papers were published

>examining the treatment of VVS with vestibulectomy (surgical removal of the

>mucosa of the vestibule). Bornstein et al. [11] performed a meta-analysis of

>all the published literature regarding vestibulectomy between 1981 and 1998

>and concluded that 89% of women who had a vestibulectomy experienced a

>significant reduction in pain, and 72% of women had a complete resolution of

>their symptoms. Schneider and co-workers [12] report similar success and

>also present data showing that 83% of women who underwent vestibulectomy

>would recommend it to others.

>

>Several papers have examined electromyographic (EMG) biofeedback for the

>treatment of VVS. McKay and colleagues [13] report that 52% of women

>demonstrated markedly decreased vestibular pain after EMG and 69% of the

>women resumed sexual activity. Sarig et al. [14] reported that 43% of women

>could have intercourse without pain after an average of 6 months of EMG

>treatment. Lastly, Bergeron et al. [15] performed the first randomized trial

>to compare EMG, group cognitive-behavior therapy, and vestibulectomy. They

>reported that all three treatment modalities offered significant improvement

>in the symptoms of VVS, but that women had a better outcome after

>vestibulectomy than with either EMG or cognitive-behavioral therapy.

>

>Several studies have also examined interferon injections for the treatment

>of VVS. While this treatment strategy was initially started to treat HPV

>infection (which we now believe is not the cause of VVS), new data by

>Schernthaner et al. [16] show that interferon inhibits mast cells. If our

>new hypothesis about the cause of VVS is correct, this may explain why

>interferon has been successful. Further evidence to support this theory is

>provided by Gerber and team [17], who show that women with VVS are less

>likely to produce interferon-beta when they were exposed to a

>lipopolysaccharide stimulus than a control group of women. Marinoff et al.

>[18] report that 49% of women experienced reduction in their pain after a

>course of interferon injections.

>

>

>

>

>

>Vulvar vestibulitis - notice the

>redness of the vestibule.

>

>There are many other treatments for VVS that have not well studied, but are

>being used at various medical center throughout the country. As there have

>been no randomized studies on any these medications, there usefulness cannot

>be accurately discussed. A list of these experimental treatments would

>include: Estrace cream, atropine cream, nitroglycerine cream, capsaicin

>cream, lidocaine, desipramine and other tricyclic antidepressant

>medications, antihistamines, and steroids.

>

>VULVAR DERMATOSES

>

>There are many dermatologic conditions that may cause pain in the vulva. The

>most common include: lichen simplex chronicus, lichen sclerosis, and lichen

>planus. These conditions may cause symptoms of itching and burning.

>Scratching the vulva and overusing topical medications may inflame the

>tissue, causing swelling and additional pain.

>

>Lichen simplex chronicus: Lichen simplex chronicus (aka: neurodermatitis,

>pruritus vulvae, squamous hyperplasia, and hyperplastic dystrophy) is the

>end stage of an itch- scratch-itch cycle. The cause of the initiating

>itching that leads to lichen simplex chronicus includes atopic dermatitis,

>contact dermatitis, and eczema. Intense, chronic itching from these diseases

>results in repetitive rubbing and scratching. The skin responds by

>thickening, with increased skin markings called lichenification.

>

>

>

>

>

>Lichen Simplex Chronicus

>

>Lichen sclerosis: Lichen sclerosis is a chronic skin disorder with a

>predilection for the vulva. The typical lesions of lichen sclerosis are

>white plaques, often with areas of bruising and ulceration. Often, there is

>destruction of vulvar architecture with scarring of the clitoral prepuce,

>resorption of the labia minora, and narrowing of the opening of the vagina.

>Symptoms of lichen sclerosis include: chronic itching and soreness of the

>vulvar area. There can be splitting of the vulvar skin, causing stinging,

>pain, inflammation and swelling. The skin becomes fragile and pale and white

>in appearance and these skin changes often cause difficulties with sexual

>intercourse. Historically, the treatment of lichen sclerosis until the early

>1990s was topical testosterone. Well-designed randomized studies, however,

>demonstrated that clobetasol propionate, an ultra potent topical

>corticosteroid, was significantly more effective in the treatment of lichen

>sclerosis with fewer side effects. Lichen sclerosis must be followed closely

>as 3-6% of women with LS develop vulvar cancer.

>

>

>

>

>

>Lichen Sclerosis

>

>Lichen Planus: Lichen planus is a skin condition that can occur on the

>limbs, mouth, vulva and vagina. When it occurs on the mucous membranes of

>the mouth or vagina it causes erosions or ulceration. Lichen planus is an

>auto-immune disease- your own body starts to attack a component of the skin

>causing breakdown of the tissue. Lichen planus may be painful in the mouth

>and vagina and secondary infection may occur. If the areas touch one

>another, scarring may occur resulting in a narrowing of the vagina. Lichen

>planus is most often treated with topical steroid creams. If scarring has

>occurred, vaginal dilators may be used to help prevent further scar

>formation. Surgical separation of the vaginal scar tissue is sometimes

>necessary.

>

>

>

>

>

>Lichen Planus

>

>While the diagnosis and management of vulvodynia or the vulvar dermatoses is

>often difficult, once an accurate diagnosis is made there are very effective

>treatments. If one treatment does not work, do not hesitate to ask your

>doctor to try something else. Remember, these are conditions that may take

>months to relieve. Take heart that you are not alone. It's not in your head.

>Your determination to find relief can help the medical community continue to

>develop treatment for millions of women.

>

>Appendix A

>

>Although some of our previously held beliefs about VVS have not survived

>scientific scrutiny, several new ideas do have strong experimental backing.

>Bohm-Starke and colleagues [5] used PGP 9.5 immunohistochemistry to

>demonstrate that the number of intraepithelial nerve endings in the

>vestibular mucosa in women with VVS is significantly increased. In addition,

>they showed that calcitonin gene-related peptide, which is known to exist in

>nociceptive afferent nerves, was the only neuropeptide detected in the

>superficial nerves of the vestibular mucosa. Therefore, the increased free

>nerve endings within the vestibular mucosa of women with VVS are

>nociceptors. Bornstein et al. [6] confirmed these results and used

>computer-assisted histomorphometry to show that women with VVS have ten

>times the area of nerve fibers than women without VVS. Furthermore, they

>demonstrated the presence of increased mast cells in the mucosa of women

>with VVS [6]. If we examine these results along with data from Velangi [7]

>that shows that the skin of women with VVS is more sensitive to chemical

>irritants than asymptomatic women, we can formulate a new hypothesis about

>the cause of VVS. VVS may be initiated by an allergic reaction to a chemical

>irritant in the vulvar vestibule. This irritation - possibly to topical

>antifungal agents used to treat suspected candidiasis (yeast infection) -

>causes mast cells to migrate to the vestibule. If the irritation persists,

>activation of mast cells leads to an uncontrolled proliferation of

>nociceptors in the mucosa. This hypothesis explains why up to 80% of women

>with VVS complain of an acute onset of symptoms that includes burning and

>itching, which then progress to severe pain on touch. The pain on touch

>often then persists even after the initial symptoms of itching and burning

>disappear. Of course, further studies should be performed to assess the

>validity of this hypothesis.

>

>Witkin and associates [8] are the first to examine a possible genetic link

>to VVS. They examined the relation between vulvar vestibulitis and

>polymorphisms in the gene coding for the interleukin-1 receptor antagonist,

>a naturally occurring down-regulator of pr-inflammatory immune responses.

>They demonstrated a unique distribution of interleukin-1 receptor antagonist

>alleles among women with vulvar vestibulitis. This suggests that

>polymorphism in this gene may lead to elevated levels of interleukin-1

>(IL-1), thereby creating an exaggerated inflammatory or immune response.

>This hypothesis is further supported by data from and Hasday [9], who

>showed that tissue levels of IL-1 were 2.3-fold greater in women with VVS

>than in controls.

>

>Several articles have suggested that women with vulvar vestibulitis have

>increased pain perception that is not limited to their genitalia. Pukall and

>colleagues [10] used modified von Frey stimuli to measure tactile and pain

>thresholds around the vulvar vestibule and in five non-vestibular areas.

>Their data show that women with VVS had significantly lower tactile and pain

>thresholds than controls in the vulvar vestibule in non-vestibular regions

>such as the deltoid. This may imply that VVS is part of a systemic pain

>syndrome (such as fibromyalgia) and not just a genital condition.

>

>09/2003

>

>Copyright© Vibrance Associates, 2003-2004D

>

>

>

> painkillers

>

>

>

>I asked a question the other day and had not received any replied

>relating to pain killers such as Voltaren or Ibuprofen. I was at one

>point on a large dosage of these and I was wondering if that could have

>changed my vuvlar pain significantly. I was feeling better at the time

>and was on a treatment for vulvar pain (guaifenesin). I was wondering

>which one contributed the best to pain releif: guai or pain killers.

>I have never heard of Voltaren and Ibuprofen to be used for this type

>of pain. Does that mean that I should give all the credit to guai

>rather than painkillers?

>

>Thanks

>

>Anja

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

>

>Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

>to search our archives, files, articles, etc.

>

>***

[Guest guest]

I live in Houston. I would have to

fly there. My mom lives on Long

Island so I could stay there.

I have tried those meds, but never

together. I could do it, but I don’t know how much to ask

for.

It’s an interesting idea.

Thanks for the reply,

Anne

RE:

Goldstein, MD and article

Anne, if you are close to

Baltimore, land - then why don't you avail yourself of s Hopkins

University, where you can find, I believe, at least 2 therapist to do the

vaginal work, one was located at Hopkins proper and one at the Bayview

facility. Her name is and she is with the physical therapy facility

at Bayview. They take insurance. In the meantime, couldn't you

contact the doc you work with now for scripts for the Cymbalta and Neurontin?

[Guest guest]

I live in Houston. I would have to

fly there. My mom lives on Long

Island so I could stay there.

I have tried those meds, but never

together. I could do it, but I don’t know how much to ask

for.

It’s an interesting idea.

Thanks for the reply,

Anne

RE:

Goldstein, MD and article

Anne, if you are close to

Baltimore, land - then why don't you avail yourself of s Hopkins

University, where you can find, I believe, at least 2 therapist to do the

vaginal work, one was located at Hopkins proper and one at the Bayview

facility. Her name is and she is with the physical therapy facility

at Bayview. They take insurance. In the meantime, couldn't you

contact the doc you work with now for scripts for the Cymbalta and Neurontin?

[Guest guest]

Please tell me the story. I am desperate

and was thinking of investing a lot of time and money to go see him. I am not

trying to stir the pot, but truly seeking referrals/recommendations…

Please…

Anne

Re:

Goldstein, MD and article

Sorry, I don't know a thing about him and I don't know

the backstory

that is being hinted at in the posts. If I did I'd

tell you straight

away.

> Has anyone seen him or been treated by

him? I just talked with him

on the

> phone, and told me that dyesthetic vulvodynia

is nerve damage. He

says

>

[Guest guest]

I would not go to Dr. Goldstein because he is not straightforward and sometimes

stretches the truth. Also his charges are well above normal and he does not

accept insurance.

If you like I can send you treatment information which he posted to another

vulvodynia group and you could use that information get his recommended

treatments from another doctor whose charges are more in line with the norm.

Ora

>Please tell me the story. I am desperate and was thinking of investing a

>lot of time and money to go see him. I am not trying to stir the pot, but

>truly seeking referrals/recommendations.

>

>

>

>Please.

>

>

>

>Anne

[Guest guest]

Yes, please do! I have a gyn that

will help me with anything that I want to try. I am starting biofeedback

and physical therapy next week, so if he’s right that you have to do it

all at once, I could do that here in Houston if I knew what dosages to try. I could really use that

information, please send it on. I can’t thank you enough for your

offer.

Sincerely,

Anne

Re: Re:

Goldstein, MD and article

I would not go to Dr. Goldstein because he is not

straightforward and sometimes

stretches the truth. Also his charges

are well above normal and he does not

accept insurance.

If you like I can send you treatment information

which he posted to another

vulvodynia group and you could use that

information get his recommended

treatments from another doctor whose charges are

more in line with the norm.

Ora

[Guest guest]

He didn't post anything about dosages, he only mentioned which drugs he used and

I have already sent one quote from him. If you want something more detailed you

should look it up on the Web because I do not have any dosage information.

Ora

>Yes, please do! I have a gyn that will help me with anything that I want to

>try. I am starting biofeedback and physical therapy next week, so if he's

>right that you have to do it all at once, I could do that here in Houston if

>I knew what dosages to try. I could really use that information, please

>send it on. I can't thank you enough for your offer.

>

>

>

>Sincerely,

>

>

>

>Anne

>

>

[Guest guest]

I am sorry, I must have misunderstood…I

thought you offered to send me some additional information. The quote

that you sent me was from the article I sent in originally. I got the

impression that he must have had a post that you saved from another

group. If that’s true, would you mind sending it? If there’s

nothing different from the article I send you, then it looks like I’ve

got his repertoire.

Thanks for trying to help me.

Warmly,

Anne

He didn't post anything about dosages, he only

mentioned which drugs he used and

I have already sent one quote from him. If

you want something more detailed you

should look it up on the Web because I do not have

any dosage information.

Ora

On Fri, 9 Sep 2005 20:37:58 -0500,

" Anne " wrote:

>Yes, please do! I have a gyn that will

help me with anything that I want to

>try. I am starting biofeedback and

physical therapy next week, so if he's

>right that you have to do it all at once, I

could do that here in Houston if

>I knew what dosages to try. I could

really use that information, please

>send it on. I can't thank you enough for

your offer.

>

>

>

>Sincerely,

>

>

>

>Anne

>

>

[Guest guest]

I had not read your first post on the subject in its entirety so I did not

realize that you had posted so extensively.

However all the nerve meds that he mentioned have their own web pages with

information as to dosages, etc. Your gyn should be able to look them up to help

come up with the correct dosages.

Dr. Goldstein could be right about nerve damage being the instigator for DV but

I certainly would not want to start trying out various nerve meds and increasing

the dosages then switching to another one over a long period of time.

For example the recommendation for elavil is to take it in increasing doses over

a period of six months and if it doesn't work then what. You need to switch to

another one. Doing that from your home to New York would certainly not be

feasible I should think.

Also I wonder if when he mentioned a cure rate of 80% he was not talking about

DV but VVS surgery.

Ora

>I am sorry, I must have misunderstood.I thought you offered to send me some

>additional information. The quote that you sent me was from the article I

>sent in originally. I got the impression that he must have had a post that

>you saved from another group. If that's true, would you mind sending it?

>If there's nothing different from the article I send you, then it looks like

>I've got his repertoire.

[Guest guest]

Hi again Arline,

I know what you mean about the just hinting at in regards to

this dr. I didn't bother to read the article b/c I had an idea

of what might be said in there and thought what you were

thinking about a " trick " .

Kristy

__________________________________________________

[Guest guest]

Hi Anne,

I was around at the time of the Dr. G contraversy. I think he asserted that surgery was the main answer and when people protested he got offended. You know... that God complex. It happened about a year or two ago and you could probably go to the www.vulvodynia.com site and look into the archives to learn more but it was quite an ugly state of affairs for the list.

Now, I live in CT and see Pam on for PT. She has some patients of his and says he is an excellent diagnostician. I said to her "doesn't he just push surgery", and she said no he is good at diagnosing too and using other methods. She said the greatest complaints she hears about him from her patients is the cost.

Personally, I wouldn't rule out seeing him for my own situation. But I do take offense at anyone making a huge profit off our suffering, which at those rates, is price gouging. I would pay anything to get better, but when there is no guarantee... Then some people say that NYC itself is so expensive, but to put it in perspective, Pam charges $150 per hour for PT and I would say she is one of the world's best. She is in NYC. For him to charge $800 for a visit is obscene!

Good luck!

SandiAnne wrote:

I am sorry, I must have misunderstood…I thought you offered to send me some additional information. The quote that you sent me was from the article I sent in originally. I got the impression that he must have had a post that you saved from another group. If that’s true, would you mind sending it? If there’s nothing different from the article I send you, then it looks like I’ve got his repertoire.

Thanks for trying to help me.

Warmly,

Anne

He didn't post anything about dosages, he only mentioned which drugs he used andI have already sent one quote from him. If you want something more detailed youshould look it up on the Web because I do not have any dosage information.Ora>Yes, please do! I have a gyn that will help me with anything that I want to>try. I am starting biofeedback and physical therapy next week, so if

he's>right that you have to do it all at once, I could do that here in Houston if>I knew what dosages to try. I could really use that information, please>send it on. I can't thank you enough for your offer.>> >>Sincerely,>> >>Anne>>

[Guest guest]

I guess you have all been through a lot to

have had this reaction. I guess you don’t know who I am, although

you could search for my posts and see that I am for real. Listen, I just

came across his article and was surprised that after having had DV for over a

year that I hadn’t heard much about him. A web search for him

turned up an article stating that he had received a research grant for the NVA

for Effexor in treating DV. That was a medication that I hadn’t

heard us talk about very much, so I called his office to ask if that study had

ever concluded anything about the use of Effexor. I am almost at the end

of the road medication-wise, and pain-killers have the unfortunate side effects

of stopping my colon, so I am between a rock and a hard place. I was

wondering if this really had any success.

I was surprised when he called me back

personally, but was intrigued by his postulate that we need to address DV

aggressively, and with multiple meds and therapies at the same time. I have

tried all the meds he has used, but never simultaneously and never with therapy

and biofeedback at the same time. I have multiple prolapses and celes, so I

know I have nerve damage.

Before I spend thousands of dollars and

abandon my six children to go see him, though, I thought I would ask here if

anyone was seeking treatment from him. If you notice, one of my first

posts before was about seeing Dr. Metzger in CA, another DR. I had read about on the internet and came here

to find out about.

My feelings are a little hurt that everyone

is veiling their words and seemingly accusing me of something, although of what

I’m not really sure. My guess is that you think I am from his

office, trying to trick you into saying libelous things about him, so that he

can sue you. I suppose if you have already had that experience, I can

understand why you might react that way. However, if you want to come and

verify my suffering, or ask my family if I am for real, email my privately and I’ll

give you my number. Or I can fax you my medical records to show you how many

things I have tried to overcome this condition that is wrecking the very fabric

of my life and my marriage.

I can’t do anything anymore –

no exercise, no sex. I’m so tired of giving oral sex to my husband

just to keep that part of our marriage tolerable for him. I’m so

tired of pain in such a vulnerable area. I’m so tired of no

solutions. I’m sick to death of medications that have terrible side

effects that ruin my life. I’m so lonely in this condition. I’ve

never met a real life person who has this.

Please give me a break. I was just

asking an honest question.

Anne

Hi again Arline,

I know what you mean about the just hinting at in

regards to

this dr. I didn't bother to read the article

b/c I had an idea

of what might be said in there and thought what

you were

thinking about a " trick " .

Kristy

[Guest guest]

Sandi,

Thanks for trying to explain this reaction

to me. I appreciate you taking the time to help me.

Did he say surgery was good for DV or just

VV? Because I have DV and he never mentioned surgery. His prices

are high, though, and it would be very difficult for me to get to NY

often. But if he could help me for sure, I’d go. Who wouldn’t?

I wonder if my doctor here could figure

out from his article how much to give me of what types of medications. I

have a very demanding life, with lots of little children who need their mommy,

so for me to check out mentally due to meds is a scary proposition – but so

is a lifetime of pain. I am so worn out from thinking about my vagina L it’s the only

thing that rules the day. It has sucked the joy and happiness out of my

entire life.

I have an appointment for PT next Wed. and

biofeedback on Fri. I hope this will start helping me.

Of course I would have to have yeast and

BV on top of it all – so I might not be able to even go.

Yuck,

But thanks for reaching out,

Anne

RE: Re:

Goldstein, MD and article

Hi Anne,

I was around at the time of the Dr. G

contraversy. I think he asserted that surgery was the main answer and

when people protested he got offended. You know... that God

complex. It happened about a year or two ago and you could probably go to

the www.vulvodynia.com site and look

into the archives to learn more but it was quite an ugly state of affairs for

the list.

Now, I live in CT and see Pam on for PT.

She has some patients of his and says he is an excellent diagnostician. I

said to her " doesn't he just push surgery " , and she said no he is

good at diagnosing too and using other methods. She said the greatest

complaints she hears about him from her patients is the cost.

Personally, I wouldn't rule out seeing him for my own

situation. But I do take offense at anyone making a huge profit off our

suffering, which at those rates, is price gouging. I would pay anything

to get better, but when there is no guarantee... Then some people say

that NYC itself is so expensive, but to put it in perspective, Pam charges $150

per hour for PT and I would say she is one of the world's best. She is in

NYC. For him to charge $800 for a visit is obscene!

Good luck!

Sandi

Anne

wrote:

I am sorry, I must have

misunderstood…I thought you offered to send me some additional

information. The quote that you sent me was from the article I sent in

originally. I got the impression that he must have had a post that you

saved from another group. If that’s true, would you mind sending

it? If there’s nothing different from the article I send you, then

it looks like I’ve got his repertoire.

Thanks for trying to help

me.

Warmly,

Anne

He

didn't post anything about dosages, he only mentioned which drugs he used and

I have already sent one quote from him. If

you want something more detailed you

should look it up on the Web because I do not have

any dosage information.

Ora

On Fri, 9 Sep 2005 20:37:58 -0500,

" Anne " wrote:

>Yes, please do! I have a gyn that will

help me with anything that I want to

>try. I am starting biofeedback and

physical therapy next week, so if he's

>right that you have to do it all at once, I

could do that here in Houston if

>I knew what dosages to try. I could

really use that information, please

>send it on. I can't thank you enough for

your offer.

>

>

>

>Sincerely,

>

>

>

>Anne

>

>

[Guest guest]

With Spalt's first office visit was about 800 + bucks. They do not take my

insurance

so I had to pay out of pocket. The visits thereafter were about 90 bucks or

less. I posted to

Dr.G's list and told him my background and things I have tried he mentioned if

you failed

3 things you should get surgery...

's office disagrees with that and that you have to try everything and only

THEN can

surgery be talked about---for me that seems like a 3 years process of trail and

error...I

also saw Rodke in NYC and she was very expensive.

It's all very annoying---I wish all the Dr.'s would work together so we wouldn't

travel all

over creation to find different treatments.

>

> >Yes, please do! I have a gyn that will help me with anything that I want to

> >try. I am starting biofeedback and physical therapy next week, so if he's

> >right that you have to do it all at once, I could do that here in Houston if

> >I knew what dosages to try. I could really use that information, please

> >send it on. I can't thank you enough for your offer.

> >

> >

> >

> >Sincerely,

> >

> >

> >

> >Anne

> >

> >

>

>

>

>

>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

>

> Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> to search our archives, files, articles, etc.

>

> ***

[Guest guest]

Going back a few posts -- I went to Dr. Goldstien a few times; he put

my in. My visits were all a thousand plus; which sucked. He did

diagnose me, and provided some initial help. However, he really

likes to treat with drugs and biofeedback. And he only wants you to

use his biofeedback person in NYC -- I looked around and found a

local practicioner and explained what I needed. was awesome and

much cheaper then going to NY. That said, he put me on an anti-

depressant; effexor. This has caused me to lose my mind and my

hearing. Literally, I'm not depressed so add that to my naturally

spastic blonde (stereotypically) body chemistry. I can't remember

squat! Which sucks, needless to say I'm Dr. hunting. If anyone

knows of a good one in the DC area.

Guenever

>

> >Yes, please do! I have a gyn that will help me with anything that

I want

> to

> >try. I am starting biofeedback and physical therapy next week, so

if he's

> >right that you have to do it all at once, I could do that here in

Houston

> if

> >I knew what dosages to try. I could really use that information,

please

> >send it on. I can't thank you enough for your offer.

> >

> >

> >

> >Sincerely,

> >

> >

> >

> >Anne

> >

> >

>

>

>

>

>

>

>

[Guest guest]

I guess if yu want the Dr. G touch just ask your Dr.'s to put you on Effexor.

Has anyone

here been put on that drug? BTW. Neurontin though HIGHLY EFFECTIVE drove me

crazy.

> Going back a few posts -- I went to Dr. Goldstien a few times; he put

> my in. My visits were all a thousand plus; which sucked. He did

> diagnose me, and provided some initial help. However, he really

> likes to treat with drugs and biofeedback. And he only wants you to

> use his biofeedback person in NYC -- I looked around and found a

> local practicioner and explained what I needed. was awesome and

> much cheaper then going to NY. That said, he put me on an anti-

> depressant; effexor. This has caused me to lose my mind and my

> hearing. Literally, I'm not depressed so add that to my naturally

> spastic blonde (stereotypically) body chemistry. I can't remember

> squat! Which sucks, needless to say I'm Dr. hunting. If anyone

> knows of a good one in the DC area.

[Guest guest]

Some of us (me included) are not deleting past messages when replying to posts.

Let's remember to do that because if we do not the posts get longer and longer.

Thanks, everyone.

Ora

[Guest guest]

Hi Anne,

You aren't the same Anne who seemed to be having success with the Baclofen and Zonegran, are you? I hope not, b/c I am really hoping that this was the cure for someone since I may try it in the future.

I believe you are a true sufferer. You don't have to justify yourself. Please don't feel unwelcome.

Love,

Sandi

Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

I am the same Anne, I’m sorry to say –

it worked amazingly for the first two weeks. No pain. At all. Then

I don’t know what happened. I guess I went in for the nerve blocks

(just to make sure) and right after that, the areas where a stupid nasty gyno had

previously and unexpectedly injected my vulva with 15 steriod shots blistered

and turned into white – lichen like areas. I freaked and went in

for another biopsy that just showed inflammation and thickening of the skin –

no lichen. So since the steroid shots blistered and freaked out I have

been a total mess of miserable burning pain. This last weekend I got BV

and a yeast infection (according to the wet smear) and now am suffering the

side effects of flagyl on top of it.

All that to say, I wish I had just stayed

with the Baclofen and Zonegran. I would definitely try it. I am so

sick of meds and side effects right now, though, that I’m taking a break from

all medications. I’ll try again after my nausea, cramps, and other

intestinal distresses go away.

And Dee, thanks for the best wishes, but I am not trying Elavil. I am

worn out from enduring the side effects of those drugs. I’m trying PT

and biofeedback over the next few months, with PF reconstructive surgery

scheduled in December for prolapse repair in the event that the prolapses are

causing all this distress.

See, I’m not making this up…

Anne

Mom to 7

One who died of anencephaly

One born with congenital heart failure

One autistic

Do you think I’ve been through

enough? You are all welcome to my pity party. L

Hi Anne,

You aren't the same Anne who seemed to be having

success with the Baclofen and Zonegran, are you? I hope not, b/c I am

really hoping that this was the cure for someone since I may try it in the

future.

I believe you are a true sufferer. You don't

have to justify yourself. Please don't feel unwelcome.

Love,

Sandi

[Guest guest]

Hi. I just started on Effexor this year. It has helped me a lot. I

have quit having spontaneous flareups.

In other words, I only have flareups if I *do* something, like if

something touches my crotch.

I consider it a vast improvement. There are some side effects

(weight loss) but it is worth it.

Dr. Hope Haefner at Univ of Michigan gave me a paper which described

all the meds used to treat VV and all their side effects.

Neurontin. I have a lot to say about it. I just learned some more

this week. Let me know if you want to hear it.

later,

> I guess if yu want the Dr. G touch just ask your Dr.'s to put you

on Effexor. Has anyone

> here been put on that drug? BTW. Neurontin though HIGHLY EFFECTIVE

drove me crazy.

>

>

..