Can't believe this.

[Guest guest]

I had HEAVYperiods, so heavy I could not leave the bathroom. I got my hormones tested and I was on the low side of DHEA and testosterone. I started using both and the periods stopped being heavy! I then went on the candida diet and took nystatin antifungal and my burning and itching went away. This was after seeing 20 doctors and gyns that could not help me. I think a combination of natural medicine with traditional medicine has helped me feel better. If I would have just listened to that first set of docs that told me what I was eating had nothing to do with it, I would still be in much misery. The first set of doctors also told me my hormones were FINE. Then I got one to admit that they were on the LOW side of normal. I read up about hormones on the internet and realized that I had a lot of the symptoms of low testosterone and low DHEA. Sometimes you have to do your own research!

susanMake your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

I have been trying to get a referral to a Gyno who comes to the area

once a month. I am rural so getting any decent Dr. isn't easy. I've

already seen my GP, two NP's and one gyno who did nothing but scribe

Yaz for me.

So I finally got a call back from the NP and she's going to send a

note to the Gyno's office and see if he'll see me.

And here's where I have a problem. I do have a history of pain and

fibroids and heavy bleeding and she knows that and she also knows

that my issue here is 4 months of vulvar pain and itching. But she's

going to put that as a sidenote basicly and focus on the internal

stuff to try to get him to see me.

Maybe I'm wrong here but I think having pain and itching so bad you

can't wear pants, can't stand to ride in the car long, have to do

schoolwork standing up (thank God I am doing online classes!), and

can't have sex or even let your husband touch you because of pain

should be a big enough deal!!

Then she went on to say how we've exhausted options and she thinks

he'll just tell me we have to wait it out and see. We've done, med

for bv then hormone cream, I mean come on is that all there is?!

I can't believe this.

[Guest guest]

Well after some phone calls I got an appt for the 20th, a Saturday.

I pray he'll know something about this or can help me in some way.

The itching the last few days is enough to make me scream.

>

> I had HEAVYperiods, so heavy I could not leave the bathroom. I

got my

> hormones tested and I was on the low side of DHEA and

testosterone. I started using

> both and the periods stopped being heavy! I then went on the

candida diet

> and took nystatin antifungal and my burning and itching went

away. This was

> after seeing 20 doctors and gyns that could not help me.

> I think a combination of natural medicine with traditional

medicine has

> helped me feel better. If I would have just listened to that

first set of docs

> that told me what I was eating had nothing to do with it, I would

still be in

> much misery. The first set of doctors also told me my hormones

were FINE. Then

> I got one to admit that they were on the LOW side of normal. I

read up about

> hormones on the internet and realized that I had a lot of the

symptoms of

> low testosterone and low DHEA. Sometimes you have to do your own

research!

> susan

> **************Make your life easier with all your friends, email,

and

> favorite sites in one place. Try it now.

> (http://www.aol.com/?optin=new-

dp&icid=aolcom40vanity&ncid=emlcntaolcom00000010)

>

[Guest guest]

No that is not all there is. Being rural as you are is not a plus. You

will have to keep pushing and if your budget and insurance allow, make a

trip to the BIG city nearest you and see a specialist. Be sure to take your

records with you. hugs, ml

[Guest guest]

R. - I'm so sorry for what your dealing with, but unfortunately it sounds familiar. When docs don't understand vulvar pain, it sure adds to our distress. I hope the ignorance is on the referring doc's end and that the other doc will 'know' something about vulvar pain. Maybe you should call the doc's office and ask to speak with a nurse and ask if the doc treats patients with vulvar pain! Just a thought, and it might save you some time and money if he/she doesn't. I spent years going from dr. to dr. and paying for unnecessary meds and copays around my area. I finally got fed up...and began to travel out of state to see practitioners. It's hard to shell out the money, either way, but if I had it to do over again, I would have gone out of state first (many, many years ago)! Time is precious...and I lost a

lot of it by seeing incompetent jerks! You said Reno is the largest area closest to you, right? Check the database on the homepage to see if we've listed any practitioners even remotely close to your area. I'll see if I can come up with anything! On another note, I hope things are going well with the house you and your hubby were bidding on...we made an offer the other night on the one I mentioned, but the couple wants several thousand more than our highest offer. *sigh* We are gonna try one more time to work with them and hope for the best. Take Care,Chelle

[Guest guest]

>>>>Sometimes you have to do your own research!, isn't that the truth!!! We could rephrase that by saying, "MOST of the time you have to do your own research!" Ha! Chelle

[Guest guest]

OK I'll check and see if there are any close listed there. I know

this gyn is at least a good listener so I'm hoping that he will have

some experience too with this. He's from a bigger area so I have my

fingers crossed.

Oh sorry to hear about the offer. Hopefully it can still work out

for you. I went ahead and sent the contract off on ours. It's out of

the area so I won't be out there for a while though.

>

> R. - I'm so sorry for what your dealing with, but unfortunately it

sounds familiar.  When docs don't understand vulvar pain, it sure

adds to our distress.  I hope the ignorance is on the referring

doc's end and that the other doc will 'know' something about vulvar

pain.

>

> Maybe you should call the doc's office and ask to speak with a

nurse and ask if the doc treats patients with vulvar pain!  Just a

thought, and it might save you some time and money if he/she

doesn't. 

>

> I spent years going from dr. to dr. and paying for unnecessary

meds and copays around my area.  I finally got fed up...and began to

travel out of state to see practitioners.  It's hard to shell out

the money, either way, but if I had it to do over again, I would

have gone out of state first (many, many years ago)!  Time is

precious...and I lost a lot of it by seeing incompetent jerks! 

>

> You said Reno is the largest area closest to you, right?  Check

the database on the homepage to see if we've listed any

practitioners even remotely close to your area.  I'll see if I can

come up with anything! 

>

> On another note, I hope things are going well with the house you

and your hubby were bidding on...we made an offer the other night on

the one I mentioned, but the couple wants several thousand more than

our highest offer.  *sigh*  We are gonna try one more time to work

with them and hope for the best. 

>

> Take Care,

> Chelle

>

[Guest guest]

That is SO not ok!

Meds for bv and hormone creams are just the beginning. There are antidepressants, anticonvulsants, topical steroid creams, estrace (NOT premarin), botox injections, antifungals, physical therapy, the low oxalate diet. You might want to take in some medical journal articles and insist on some of these treatments. It took me 12 docs and traveling several hours befor I found somebody decent. I hope it works out.

Take care,

Lindsey

[Guest guest]

You're near Reno? I went to high school in Gardnerville.

There are a few docs in the , CA area (outside of Sacramento, where I live) and in SF area that are good, along with good PTs in San Francisco.

Lindsey

[Guest guest]

, since I live on the East Coast, I didn't realize you are so close to some good practitioners in CA. I hope the doc you see on the 20th will be able to help you...but at least you now have some more ideas (that Lindsey posted). Many of us have had to travel to find good help, but it can be worth it when you are in pain! Take Care,Chelle

You're near Reno? I went to high school in Gardnerville.

There are a few docs in the , CA area (outside of Sacramento, where I live) and in SF area that are good, along with good PTs in San Francisco.

Lindsey

[Guest guest]

I'll check around but it's hard for me to travel that far because I

have an anxiety disorder and need my husband to take me if it's far.

The weather is just getting bad and he's working nights right now.

So Reno or Truckee is good for now if there is anyone but further

has to wait I guess. I'm hoping something will work out with this

Doc or that a miracle will fall out of the sky. I'm ok with either

right now I so appreciate the input and suggestions from

everyone! I'm keeping all options open even if some of them will

have to wait a bit.

>

>

>

>

>

>

>

>

>>

[Guest guest]

,

I don't blame you one bit for moving forward with the new doc soon, but

'if' he doesn't know anything about vulvar pain, I would definitely

make an appointment with someone in CA that does know what they are

doing. Most of the time we have to wait a little bit before we can get

in with the good ones anyway. I have to admit, though, the longest

I've ever had to wait for a particular specialist has been two months,

at the most.

Sorry to hear about the anxiety. Have you spoken with your family doc

about that? There are treatments you can try...since I've had trouble

with my hormones the last few years, I've had some problems with

anxiety. When my hormones are balanced...I feel fine, when they drop I

have heart palpitations and anxiety. *ugh*

Take Care,

ChelleI'll check around but it's hard for me to travel that far because I have an anxiety disorder and need my husband to take me if it's far. The weather is just getting bad and he's working nights right now. So Reno or Truckee is good for now if there is anyone but further has to wait I guess. I'm hoping something will work out with this Doc or that a miracle will fall out of the sky. I'm ok with either right now I so appreciate the input and suggestions from everyone! I'm keeping all options open even if some of them will have to wait a bit.

[Guest guest]

sorry to hear that you are in pain tonite Tina. Ugh, I know how it is I was like that the last 3 days. Im wracking my brain trying to figure out why some days are literally pain free and others I am dealing with the lousy pain.

I have concluded that I think diet is a huge factor for me. Im not sure what you are dealing with, but I started the whole calcium citrate, low oxalate, low acid, lots of water- keeping my fingers crossed but today was one of my best days yet. I am also revisiting the concoction of topical estrogen that I was prescribed.

Those that use the topical estrogen, how long did it take to see results? Also, the diagnosis of vulvodynia can that include pain in the vestibule area? or is that just vestibulodynia?

Hope you feel better soon, Tina

C

New year...new news. Be the first to know what is making headlines.

[Guest guest]

I live on the East Coast too in South Eastern Virginia and I'm in A LOT OF PAIN TONIGHT. One of those tougher times. Thank you for all your daily support. My love to you all.

Tina M.

Re:Can't believe this.

, since I live on the East Coast, I didn't realize you are so close to some good practitioners in CA. I hope the doc you see on the 20th will be able to help you...but at least you now have some more ideas (that Lindsey posted). Many of us have had to travel to find good help, but it can be worth it when you are in pain! Take Care,Chelle

You're near Reno? I went to high school in Gardnerville.

There are a few docs in the , CA area (outside of Sacramento, where I live) and in SF area that are good, along with good PTs in San Francisco.

Lindsey

[Guest guest]

Chelle are you out there tonight?

Tina M.

Re:Can't believe this.

, since I live on the East Coast, I didn't realize you are so close to some good practitioners in CA. I hope the doc you see on the 20th will be able to help you...but at least you now have some more ideas (that Lindsey posted). Many of us have had to travel to find good help, but it can be worth it when you are in pain! Take Care,Chelle

You're near Reno? I went to high school in Gardnerville.

There are a few docs in the , CA area (outside of Sacramento, where I live) and in SF area that are good, along with good PTs in San Francisco.

Lindsey

[Guest guest]

Thank you so much. Good night and sweet dreams.

Re: Re:Can't believe this.

sorry to hear that you are in pain tonite Tina. Ugh, I know how it is I was like that the last 3 days. Im wracking my brain trying to figure out why some days are literally pain free and others I am dealing with the lousy pain.

I have concluded that I think diet is a huge factor for me. Im not sure what you are dealing with, but I started the whole calcium citrate, low oxalate, low acid, lots of water- keeping my fingers crossed but today was one of my best days yet. I am also revisiting the concoction of topical estrogen that I was prescribed.

Those that use the topical estrogen, how long did it take to see results? Also, the diagnosis of vulvodynia can that include pain in the vestibule area? or is that just vestibulodynia?

Hope you feel better soon, Tina

C

New year...new news. Be the first to know what is making headlines.

[Guest guest]

Tina:i hear ya- been there many many times - take care - have you tried ice? When i have had flare ups that offers great relief.

KL

You're near Reno? I went to high school in Gardnerville.

There are a few docs in the , CA area (outside of Sacramento, where I live) and in SF area that are good, along with good PTs in San Francisco.

Lindsey

[Guest guest]

Carolyn:

I too have started the calcitrate supplements and the estrace/calendula cream concoction - it has only been a couple of weeks and I am experiencing great relief. I only hope it improves even more in the weeks to come. As you probably know, we have lived with this for so long that the pain becomes a part of everyday life. It is great to finally feel some relief. 2009 is the year to get better.

I recall that I was originally diagnosed with vestibulitis - but I truly believe its all part of the bigger pic, vulvodynia beccause then the pain was everywhere down there. Hope this helps.

KL

Subject: Re: Re:Can't believe this.To: VulvarDisorders Date: Monday, January 5, 2009, 8:34 PM

sorry to hear that you are in pain tonite Tina. Ugh, I know how it is I was like that the last 3 days. Im wracking my brain trying to figure out why some days are literally pain free and others I am dealing with the lousy pain.

I have concluded that I think diet is a huge factor for me. Im not sure what you are dealing with, but I started the whole calcium citrate, low oxalate, low acid, lots of water- keeping my fingers crossed but today was one of my best days yet. I am also revisiting the concoction of topical estrogen that I was prescribed.

Those that use the topical estrogen, how long did it take to see results? Also, the diagnosis of vulvodynia can that include pain in the vestibule area? or is that just vestibulodynia?

Hope you feel better soon, Tina

C

New year...new news. Be the first to know what is making headlines.

[Guest guest]

Tina: just used to think and say to myself.."this too will pass" over and over and over again. Can you get any Tramado..it takes the edge off for me. It is not a controlled substance. hugs, ML

"As for me and my house, we will serve the Lord.." ( 24:15b).

[Guest guest]

Vitamin D helps too. hugs, ML

"As for me and my house, we will serve the Lord.." ( 24:15b).

[Guest guest]

Vulvodynia can include vestibulodynia. But these can be other things -

I had vestibule pain that was finally figured out to be a lichen

disorder, for example, not vulvodynia at all.

Estogen can take months to work but many will see results sooner than

that, within a few weeks even.

Melinda C.

[Guest guest]

Hi, Everyone

Has anyone heard about using olive oil on the vulva? That is what my

doctor has told me to do. Also does anyone have any atrophy in their

perineum area and any suggestions for this? Thanks.

Debbie

>

> Vitamin D helps too. hugs, ML

>

> " As for me and my house, we will serve the Lord

> .. " ( 24:15b).

>