Re: Does anyone know of a helpful doctor in Florida?

[Guest guest]

Hi , Good news! I have just started seeing a doctor at the Cleveland Clinic of Florida in Weston. She seems really commited to trying to help me which, after 14 years of this I know is rare! She said she is not going to give up until I have found some relief. If you would like to know more, let me know! shan_non_63 wrote: Hi everyone, I've been to several doctors and I cannot find one who is willing to do anything beyond Elavil and PT. It's very frustrating as I'm sure many of you

know.In fact every different doctor I have seen has had the same stock answer when I go to see them which is basically" no one knows anything about this and you look fine to me." The PT didn't help but the therapist seemed to be the only knowledgable person I've spoken with. She told me that there aren't any doctors in the area that would be able to help me and told me to contact the Mayo clinic in ville. Mayo told me that they couldn't help and to contact the State Universities. I've contacted them also to no avail. Obviously by reading all the different messages on this board it is clear to me that there are doctors somewhere that are attempting to do something to help. I just can't find one. I found something on the net looking for research participants needed in South Florida so I am hoping to hear from that. I live in East Central Florida but I am willing to travel somewhat. My

biggest fear right now is that I will travel a long distance just to fork out a few hundred dollars and hear the same stock answer I've already gotten. Also, thank you for this board! I feel less alone when I visit here. __________________________________________________

[Guest guest]

I don't know what kind of PT you are doing, but have you looked into:

www.clearpassage.com

www.roadtoslainte.blogspot.com she is from fla

love, Molly

Re: Does anyone know of a helpful doctor in Florida?

Hi , Good news! I have just started seeing a doctor at the Cleveland Clinic of Florida in Weston. She seems really commited to trying to help me which, after 14 years of this I know is rare! She said she is not going to give up until I have found some relief. If you would like to know more, let me know! shan_non_63 <sdavis2 (AT) cfl (DOT) rr.com> wrote:

Hi everyone, I've been to several doctors and I cannot find one who is willing to do anything beyond Elavil and PT. It's very frustrating as I'm sure many of you know.In fact every different doctor I have seen has had the same stock answer when I go to see them which is basically" no one knows anything about this and you look fine to me." The PT didn't help but the therapist seemed to be the only knowledgable person I've spoken with. She told me that there aren't any doctors in the area that would be able to help me and told me to contact the Mayo clinic in ville. Mayo told me that they couldn't help and to contact the State Universities. I've contacted them also to no avail. Obviously by reading all the different messages on this board it is clear to me that there are doctors somewhere that are attempting to do something to help. I just can't find one.I found something on the net

looking for research participants needed in South Florida so I am hoping to hear from that.I live in East Central Florida but I am willing to travel somewhat. My biggest fear right now is that I will travel a long distance just to fork out a few hundred dollars and hear the same stock answer I've already gotten. Also, thank you for this board! I feel less alone when I visit here.

____________ _________ _________ _________ _________ __

[Guest guest]

,

I live in ville and went to Mayo Clinic and saw the

urogynecologist there: Anita Chen. She was very nice but she

didn't know that Estrace can sometimes be used for vulvodynia

for dry skin in the area (which I do because of the surgery that

caused my vulvodynia). Also, she tried to tell me that my

pelvic floor muscles were spasming (aka Levator Ani Syndrome)

and said that I would need to go to PT for it. I told her no

thank you, plus I knew that it wasn't true that my pelvic floor

muscles were spasming (no I didn't tell her that although I

wished I had). If I do consider PT in the future it will be

with a specialty doctor called a physiatrist (not the same as a

psychiatrist). I'm thinking about going to one to have them try

to do an EMG or at least a nerve conduction study on the nerves

in that area because it didn't get done in the Spring as I had

hoped it would.

I never went back to her and have found other ways to deal with

my vulvodynia thanks to my local doctor.

And I am going to be in the process of getting my bladder and

bowel checked out soon now that my mom's surgery for breast

cancer is in the books (done last week) to see just how much

they are playing in to my vulvar issues along with my endo and

fibromyalgia and other things.

Kristy

__________________________________________________

[Guest guest]

It sounds like the Doctor Chen was enlightened and up to date. Levator Ani syndrome is a huge part of vulvodynia. I wonder what PT she would have recommended, perhaps could look into her.

love, Molly

Re: Does anyone know of a helpful doctor in Florida?

,I live in ville and went to Mayo Clinic and saw theurogynecologist there: Anita Chen. She was very nice but shedidn't know that Estrace can sometimes be used for vulvodyniafor dry skin in the area (which I do because of the surgery thatcaused my vulvodynia). Also, she tried to tell me that mypelvic floor muscles were spasming (aka Levator Ani Syndrome)and said that I would need to go to PT for it. I told her nothank you, plus I knew that it wasn't true that my pelvic floormuscles were spasming (no I didn't tell her that although Iwished I had). If I do consider PT in the future it will bewith a specialty doctor called a physiatrist (not the same as apsychiatrist) . I'm thinking about going to one to have them tryto do an EMG or at least a nerve conduction study on the nervesin that area because it didn't get done in the Spring as I hadhoped it would.I never went

back to her and have found other ways to deal withmy vulvodynia thanks to my local doctor.And I am going to be in the process of getting my bladder andbowel checked out soon now that my mom's surgery for breastcancer is in the books (done last week) to see just how muchthey are playing in to my vulvar issues along with my endo andfibromyalgia and other things.Kristy ____________ _________ _________ _________ _________ __

[Guest guest]

Since I don't know what all of your symptoms are, I don't know if my

doc may help you but I only had pain on contact. I also live in the

Tampa area and went to the Cleveland clinic in Weston and the doc I

saw did the steroid injections on me a few times but unfortunately it

did not work. They also had not diagnosed me at that clinic but

thought I just had scar tissue which was my problem but come to find

out I had the VV. The docs at the Cleveland Clinic were very nice and

did more than any other doc previously to help me but it did not work.

That was when I found a doc in Tampa who diagnosed me with VV and did

the surgery. I am not sure if he does them anymore as these cases

exhaust him (that is what he told me) and he deals more with

cancer/oncolgy type patients, but may know someone fi he does not do

that anymore. If you are interested, let me know:)

Hi

everyone, I've been to several doctors and I cannot find one who

> is willing to do anything beyond Elavil and PT. It's very frustrating

> as I'm sure many of you know.In fact every different doctor I have

> seen has had the same stock answer when I go to see them which is

> basically " no one knows anything about this and you look fine to me. "

> The PT didn't help but the therapist seemed to be the only

> knowledgable person I've spoken with. She told me that there aren't

> any doctors in the area that would be able to help me and told me to

> contact the Mayo clinic in ville. Mayo told me that they

> couldn't help and to contact the State Universities. I've contacted

> them also to no avail.

> Obviously by reading all the different messages on this board it is

> clear to me that there are doctors somewhere that are attempting to

> do something to help. I just can't find one.

> I found something on the net looking for research participants

> needed in South Florida so I am hoping to hear from that.

> I live in East Central Florida but I am willing to travel somewhat.

> My biggest fear right now is that I will travel a long distance just

> to fork out a few hundred dollars and hear the same stock answer I've

> already gotten.

> Also, thank you for this board! I feel less alone when I visit here.

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Molly,

She wasn't enlightened about my case unfortunately especially on

the Estrace issue.

As for the PT she would have recommended it was someone over at

the hospital down the street from Mayo Clinic ville and

even if I had wanted to use her I couldn't because she would

have been out of network too like Mayo Clinic was at the time.

But I can see where for some the Levator Ani Syndrome would be a

big component to the vulvodynia aspect. It just isn't in my

case. Oh well, how different we all are when it comes to how

vulvodynia occurs. Mine was caused by a surgical procedure to

the left labia minora.

Kristy

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