Re: Strickly in the Muscles?-Vestibulitis

[Guest guest]

Hi Arline,

Yes there is a reason muscles spasm and I think I got the reason today. I finally explored the urogynecologist route to rule out the potential for IC. So I went to highly respected womens hospital in Pittsburgh (McGee Womens Hospital) and the woman doctor I saw told me I have vestibulitis and thats why my muscles are spasming. So why the two "specialists" I saw in the MD area don't think I have it is confusing. She did the q-tip test and it hurt like hell.

One of the doctors I saw in land, said my vestibule pain was due to my pelvic floor muscles spasming and it was a referred pain to the vestibule- suggested baths, valium and pt (no nerve pain meds). The other specialist in land, told me again, not vestibulitis- but vulvodynia (not sure why because all my pain is in the vestibule area) anyway, he recommended the topical concoction that I mentioned in previous emails with the E & T in it and cymbalta.

But today, when she told me vestibulitis, it all kinda made sense, driving home I was in such pain from the q-tip test, that Im sure now that this pain causes my muscle spasms and not vice versa as the one doctor diagnosed. So, with that being said, Im more confused than ever lol! But she put the lidocaine on the vestibule area and re-did the q-tip test and I had no pain there. So, to me, it kinda indicates that no this is not referred pain from the muscles since the lidocaine masks the pain there- does that make sense?? Please anyone feel free to comment, I am so darn confused right now

C Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

Dr Goldstein and Dr Marvel both did

Dr. Gerwin, its not really his thing, hes a neurologist but has been the most helpful. Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

Neither Goldstein nor Gerwin gave you a q-tip test????HollisHi Arline, Yes there is a reason muscles spasm and I think I got the reason today. I finally explored the urogynecologist route to rule out the potential for IC. So I went to highly respected womens hospital in Pittsburgh (McGee Womens Hospital) and the woman doctor I saw told me I have vestibulitis and thats why my muscles are spasming. So why the two " specialists " I saw in the MD area don't think I have it is confusing. She did the q-tip test and it hurt like hell. One of the doctors I saw in land, said my vestibule pain was due to my pelvic floor muscles spasming and it was a referred pain to the vestibule- suggested baths, valium and pt (no nerve pain meds). The other specialist in land, told me again, not vestibulitis- but vulvodynia (not sure why because all my pain is in the vestibule area) anyway, he recommended the topical concoction that I mentioned in previous emails with the E & T in it and cymbalta. But today, when she told me vestibulitis, it all kinda made sense, driving home I was in such pain from the q-tip test, that Im sure now that this pain causes my muscle spasms and not vice versa as the one doctor diagnosed. So, with that being said, Im more confused than ever lol! But she put the lidocaine on the vestibule area and re-did the q-tip test and I had no pain there. So, to me, it kinda indicates that no this is not referred pain from the muscles since the lidocaine masks the pain there- does that make sense?? Please anyone feel free to comment, I am so darn confused right now C ___________________________________Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

Carolyn,

I think you are very wise to be confused. What a lot of nonsense we keep getting I think. Just a lotta words that mean nothing.

Arline

Subject: Re: "Strickly in the Muscles"?-VestibulitisTo: VulvarDisorders Date: Monday, February 2, 2009, 6:01 PM

Hi Arline,

Yes there is a reason muscles spasm and I think I got the reason today. I finally explored the urogynecologist route to rule out the potential for IC. So I went to highly respected womens hospital in Pittsburgh (McGee Womens Hospital) and the woman doctor I saw told me I have vestibulitis and thats why my muscles are spasming. So why the two "specialists" I saw in the MD area don't think I have it is confusing. She did the q-tip test and it hurt like hell.

One of the doctors I saw in land, said my vestibule pain was due to my pelvic floor muscles spasming and it was a referred pain to the vestibule- suggested baths, valium and pt (no nerve pain meds). The other specialist in land, told me again, not vestibulitis- but vulvodynia (not sure why because all my pain is in the vestibule area) anyway, he recommended the topical concoction that I mentioned in previous emails with the E & T in it and cymbalta.

But today, when she told me vestibulitis, it all kinda made sense, driving home I was in such pain from the q-tip test, that Im sure now that this pain causes my muscle spasms and not vice versa as the one doctor diagnosed. So, with that being said, Im more confused than ever lol! But she put the lidocaine on the vestibule area and re-did the q-tip test and I had no pain there. So, to me, it kinda indicates that no this is not referred pain from the muscles since the lidocaine masks the pain there- does that make sense?? Please anyone feel free to comment, I am so darn confused right now

C

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[Guest guest]

Okay if the pain causes the muscle spasms, what causes the pain and don't tell me that vulvodynia or vestibulitis causes it for gosh sakes.

Arline

Hi Arline,

Yes there is a reason muscles spasm and I think I got the reason today. I finally explored the urogynecologist route to rule out the potential for IC. So I went to highly respected womens hospital in Pittsburgh (McGee Womens Hospital) and the woman doctor I saw told me I have vestibulitis and thats why my muscles are spasming. So why the two "specialists" I saw in the MD area don't think I have it is confusing. She did the q-tip test and it hurt like hell.

One of the doctors I saw in land, said my vestibule pain was due to my pelvic floor muscles spasming and it was a referred pain to the vestibule- suggested baths, valium and pt (no nerve pain meds). The other specialist in land, told me again, not vestibulitis- but vulvodynia (not sure why because all my pain is in the vestibule area) anyway, he recommended the topical concoction that I mentioned in previous emails with the E & T in it and cymbalta.

But today, when she told me vestibulitis, it all kinda made sense, driving home I was in such pain from the q-tip test, that Im sure now that this pain causes my muscle spasms and not vice versa as the one doctor diagnosed. So, with that being said, Im more confused than ever lol! But she put the lidocaine on the vestibule area and re-did the q-tip test and I had no pain there. So, to me, it kinda indicates that no this is not referred pain from the muscles since the lidocaine masks the pain there- does that make sense?? Please anyone feel free to comment, I am so darn confused right now

C

___________________________________

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[Guest guest]

well, I'M not going to tell YOU that, Arline! ;-)you know, carol, as arline and chelle and others keep pointing out to you, attempting toget THE definitive diagnosis is just not going to happen, most likely. it's like the parableof the three men examining different parts of the elephant, each in their own individual way,and pronouncing their verdict on what they've found: you're going to get a different answer from each of them. and that's what been happening to you. (whom i am NOT equating to an elephant. . .lol). thus far you've seen four different people, right? and you've gotten four different views. and if you seek out more opinions, chances are you're going to receive that many more different takes on what's going on , based on their particular training/approach/biases. and the thing is, there could be elements of truth to each of what they're telling you. i think that chelle has it absolutely right when she suggests that there can be more than one thing happening simultaneously and multiple precipitating factors. it could be structural, from injuries or poor posture. it could be the culmination of years of emotional stress. it could be gluten and leaky gut issues, as arline suggests. it could be lyme. it could be mycoplasma or other infections. it could be thyroid and other hormonal imbalances. it could be -- and probably is -- a combination of these things or others. and while it would be nice if there were just one " truth " about a complex health issue like this, it doesn't usually work out that way. and it appears to me that the people who've been success in resolving their vulvar issues have, for the most part, employed a combination of strategies, and that it may require looking farther afield than one's crotch, to more systemic issues.in the kahuna shamanistic tradition of hawaii there's a tenet that says, " effectiveness isthe measure of all truth. " pick an approach or a combination of approaches, eithersimultaneously or sequentially, that makes the most sense to you and then see whatits effectiveness is, its " truth. " believe me, i know how practical matters can make thatdifficult. but if, for example, you think that what gerwin is suggesting about going tomd for pt in md makes a lot of sense to you on a gut level, then go for it. but idon't think it's realistic to think that there's some final verdict, some medical diety thatholds THE SINGLE ANSWER. and, to end as i began, with arline's question, i think that anyone with vulvar issuesshould be tested for gluten sensitivity via Enterolab, test for and correct any hormoneimbalances, and be tested (via IgeniX lab) for Lyme, which is known for creating bladderand/or vulvar issues, as well as be checked out for structural problems and look atdietary and nutritional problems. (did i miss anything? probably!). issues with any of these things could well be the underlying factor in creating pain that gets labelled with the ridiculous and ever-changing array of terms pertaining to pain in our crotches that we all find so confusing to keep straight. they're just labels, just words. and, ultimately, i think that the question of whether it's muscles or nerves simply becomes a distraction, keeping us stuck.hollis Okay if the pain causes the muscle spasms, what causes the pain and don't tell me that vulvodynia or vestibulitis causes it for gosh sakes. Arline Hi Arline, Yes there is a reason muscles spasm and I think I got the reason today. I finally explored the urogynecologist route to rule out the potential for IC. So I went to highly respected womens hospital in Pittsburgh (McGee Womens Hospital) and the woman doctor I saw told me I have vestibulitis and thats why my muscles are spasming. So why the two " specialists " I saw in the MD area don't think I have it is confusing. She did the q-tip test and it hurt like hell. One of the doctors I saw in land, said my vestibule pain was due to my pelvic floor muscles spasming and it was a referred pain to the vestibule- suggested baths, valium and pt (no nerve pain meds). The other specialist in land, told me again, not vestibulitis- but vulvodynia (not sure why because all my pain is in the vestibule area) anyway, he recommended the topical concoction that I mentioned in previous emails with the E & T in it and cymbalta. But today, when she told me vestibulitis, it all kinda made sense, driving home I was in such pain from the q-tip test, that Im sure now that this pain causes my muscle spasms and not vice versa as the one doctor diagnosed. So, with that being said, Im more confused than ever lol! But she put the lidocaine on the vestibule area and re-did the q-tip test and I had no pain there. So, to me, it kinda indicates that no this is not referred pain from the muscles since the lidocaine masks the pain there- does that make sense?? Please anyone feel free to comment, I am so darn confused right now C ____________ _________ _________ _____ Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

I also agree. It is so hard to cure because often there are multiple things going on.

Blueeberri

Good post, Hollis. I wish so much there was one quick, easy cure...but I think most of us realize you have to keep trying until you find what works. Many times that will be more than one thing! Chelle

and the thing is, there could be elements of truth to each of what they're telling you. i think that chelle has it absolutely right when she suggests that there can be more than one thing happening simultaneously and multiple precipitating factors. it could be structural, from injuries or poor posture. it could be the culmination of years of emotional stress. it could be gluten and leaky gut issues, as arline suggests. it could be lyme. it could be mycoplasma or other infections. it could be thyroid and other hormonal imbalances. it could be -- and probably is -- a combination of these things or others. and while it would be nice if there were just one "truth" about a complex health issue like this, it doesn't usually work out that way. and it appears to me that the people who've been success in resolving their vulvar issues have, for the most part, employed a combination of strategies, and that it may require looking farther afield than one's crotch, to more systemic issues.

and, to end as i began, with arline's question, i think that anyone with vulvar issues

should be tested for gluten sensitivity via Enterolab, test for and correct any hormone

imbalances, and be tested (via IgeniX lab) for Lyme, which is known for creating bladder

and/or vulvar issues, as well as be checked out for structural problems and look at

dietary and nutritional problems. (did i miss anything? probably!). issues with any of these things could well be the underlying factor in creating pain that gets labelled with the ridiculous and ever-changing array of terms pertaining to pain in our crotches that we all find so confusing to keep straight. they're just labels, just words. and, ultimately, i think that the question of whether it's muscles or nerves simply becomes a distraction, keeping us stuck.

hollis Great Deals on Dell Laptops. Starting at $499.

[Guest guest]

Good post, Hollis. I wish so much there was one quick, easy cure...but I think most of us realize you have to keep trying until you find what works. Many times that will be more than one thing! Chelle and the thing is, there could be elements of truth to each of what they're telling you. i think that chelle has it absolutely right when she suggests that there can be more than one thing happening simultaneously and multiple precipitating factors. it could be structural, from

injuries or poor posture. it could be the culmination of years of emotional stress. it could be gluten and leaky gut issues, as arline suggests. it could be lyme. it could be mycoplasma or other infections. it could be thyroid and other hormonal imbalances. it could be -- and probably is -- a combination of these things or others. and while it would be nice if there were just one "truth" about a complex health issue like this, it doesn't usually work out that way. and it appears to me that the people who've been success in resolving their vulvar issues have, for the most part, employed a combination of strategies, and that it may require looking farther afield than one's crotch, to more systemic issues.and, to end as i began, with arline's question, i think that anyone with vulvar

issuesshould be tested for gluten sensitivity via Enterolab, test for and correct any hormoneimbalances, and be tested (via IgeniX lab) for Lyme, which is known for creating bladderand/or vulvar issues, as well as be checked out for structural problems and look atdietary and nutritional problems. (did i miss anything? probably!). issues with any of these things could well be the underlying factor in creating pain that gets labelled with the ridiculous and ever-changing array of terms pertaining to pain in our crotches that we all find so confusing to keep straight. they're just labels, just words. and, ultimately, i think that

the question of whether it's muscles or nerves simply becomes a distraction, keeping us stuck.hollis

[Guest guest]

It is true, , isn't it? None of us can put a blanket statement out there that says hey, try this, and it WILL work for sure! I wish we could! But at least we have groups like this to 'share' our own experiences and sometimes there are similarities that can actually help someone on their way to feeling better. I think it's only normal that we are most knowledgeable about the things that have worked well for us, but I try not to lose sight of the fact that my way of treating this is not the only way. I just think we have to keep HOPE alive and encourage one another! Chelle

I also agree. It is so hard to cure because often there are multiple things going on.

Blueeberri</font>

Good post, Hollis. I wish so much there was one quick, easy cure...but I think most of us realize you have to keep trying until you find what works. Many times that will be more than one thing! Chelle

[Guest guest]

You are being a big MEANIE!!

well, I'M not going to tell YOU that, Arline!  ;-)

(I keed)

Yes, you say it well, Hollis. In fact any single one of the supposed causes that

we keep hearing about (say supposed cuz I think most are nonsense and single

symptoms) could cause a whole cascade of symptoms. I do think however that there

is a primary disease, the ultimate cause, that is responsible in many cases and

until that is discovered there will be little or no relief. The fact that gluten

sensitivity can be the cause of all these symptoms keeps coming back to me. I

have read that even Lyme Disease may be related to gluten in the way that it has

weakened the body to make it more susceptible to Lyme. Gluten affects every body

system and poisons it and that includes muscles, nerves, bones, endocrine,

teeth, hormones, fertility, brain development, mental health, skin--everything.

Last night I saw a program on TV about how FINALLY the scientists are beginning

to look at genetics as being involved in Parkinson's (duh!)(everything is about

genetics). They are all busy looking into a trigger that sets it off like

pesticides (again and again and again we keep looking into pesticides). (There

must be lots of money available for research into such a tricky and catchy

subject as genetics) Anyway, why they need to look into pesticides when they

completely ignore the food poisons that are daily put into our mouths and food

supply is way beyond me to answer rationally. (But irrationally I can do a great

job. Heh!). And I am talking about the foods that are recommended on the

government pyramid and not all the chemicals that are sneaked into the non food

additives in processed food.

Oh well, as Hollis says, one would be wise to be tested at Enterolab (only I

add) to make sure this isn't the original and primary problem. So many people

are affected it is really an epidemic and it could cause any of these symptoms.

I almost have nightmares when I think about all the ladies having physical

therapy and feeling a lot better while gluten is working on a nice lymphoma or

diabetes (er something). I get very nervous when I hear about babies who have

all these digestive problems with even mother's milk who may have been born with

damaged small intestines already from the mother's diet of gluten during the

pregnancy. In many places in Europe all children are tested for this before the

age of seven (and on the National Health, too.)

Arline

[Guest guest]

Hey Hollis yes I did, Goldstein says it is strictly muscular. Marvel said vulvodynia prescribed cymbalta and his topical concoction for vulvodynia patients- these doctors in my opinion pale in comparison to Dr Gerwin!!!!!!

C Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

so, are you saying that when goldstein and marvel did q-tip tests, you had no reactionto speak of?hollis Dr Goldstein and Dr Marvel both did Dr. Gerwin, its not really his thing, hes a neurologist but has been the most helpful. ___________________________________Stay up to date on the latest news - from sports scores to stocks and so much more.

[Guest guest]

Arline,

which test did you say u prefer that En Lab does?

C Stay up to date on the latest news - from sports scores to stocks and so much more.