need to vent a bit

[Guest guest]

Dear Cahouse5,

I remember you from 8 yrs ago. I teach school also. I tend to get my flares just before going back to work. Stress related??? Who knows. So glad you have found an answer to get you out of that HELL!!!!!

I just bought a urinary test kit because it just felt like I might have one...I tested purple on one and tan on the other. Results...test again later...that's what it said! I can't even get a straight answer from a lousy Rite-Aid test kit!!!!

I had to laugh..Gee Whiz!!!

Talk w/ you gals tomorrow.

Sara from Syracuse, NY(Where the only dr. that treats VV is an oncologist!!!!!!!!!!!!!!!!!! Mr. Pill Dispenser..w/ the personality of wet cardboard!!)

Re: need to vent a bit

In a message dated 8/25/08 3:40:51 PM, prairiefireus (AT) yahoo (DOT) com writes:

What does everyone think?Here is what I think: I've never had my VV diagnosed as a nerve issue. But it is one. Just like everyone else, I went through hell and high water to get some pain relief. I too was offered surgery and a pain specialist wanted to go in and just take a look with floroscopy (sp?) needle in spine injecting dye that the xray would pick up etc. NO WAY was I going to allow that NOR surgery cutting parts of me from "down there" out of my body. And I was in excruciating 24/7 burning, hot needles, the whole ugly nine yards. So it came down for me to try the anti-depressants WITH pain meds AFTER it was explained to me that the Doc WAS NOT giving me anti-depressants because he thought it was all in my head. I agreed. He assured me it was probably a nerve issue and that the meds would eventually get the nerve calmed down and stop firing and thus the pain stops. OH. OK. I had been in pain for months and months with this. So, I was out of work and school anyhow (teacher/summer) so I went with the elavil and oxycontin he prescribed for me. The elavil for the firing nerves and the oxycontin was the ONLY thing that brought relief. We tried other narrcotic pain meds that did not touch it. Oh the tears trying to find something, anything. It took awhile and I continued to cry alot of tears but that was the combination that worked for me. Within about 6-8 weeks, with the oxycontin, I got the elavil up to a level that it worked on the firing nerve(s). It stopped hurting. Of course those six weeks were spent all but drooling and sleeping until at each phase of going up on the elavil my body adjusted and turned a good corner.That was 8 years ago. I was 38 years old. I eventually weaned down the elavil and the oxycontin and didn't have to take either. I have had flareups. When that happened, I would usually wait until about the third day to see if it was going to calm down or get worse. Doing this I discovered a few triggers (hormones, or after my period, certain foods which I cut completely out of my diet, I will share the list if you want, it is very short). If I didn't have relief on its own after the third day, I went back on the regimen I KNEW worked. And that is how I have "cured" my VV. I was told the same thing, incurable. I just wanted to die. The pain was horrible. Luckily I had a great doc, the time and I prayed alot for an answer. I recently had a flareup 7/27 until this past weekend, which is the first one I have had in YEARS that went on like that and forced me to go back to the elavil. Same regimen (the slow trek up to 150mgs) only no oxycontin. I did have tramadol which very much helped. The VV just responded over the weekend--but for all intents and purposes I lost three weeks out of my life. Again. As I sit here now I am not burning, or irritated or anything, whereas a week ago I was laying in bed crying, I coudln't sit--only had comfort if you can call it that on my side. Had burning on the tops of my legs and thighs, cheeks and face like a sunburn but no redness. It was a nightmare AGAIN. I am lucky that I don't have a predisposition to addiction with the narcotic pain relievers (all though tramadol is not a scheduled drug). When I get things calmed down, I wean down the elavil from 150 to 75 for a fw weeks, then 75 to 50 for a LONG time and I feel secure things are undercontrol. I stop the pain meds when the pain stops, immediately that day. I have a doctor who believe me and TREATS ME. So that's my story, in case it helps anyone at all. As usual your mileage may vary--this is just my story to give hope. DO NOT GIVE UP. There is an answer for you too. It might be a different combination of things, but there is something. This list saved my life. : ) Hang in there!**************It's only a deal if it's where you want to go. Find your travel deal here.(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Cahouse5,

I also have that inner ear burn and itch!!! The quack dr. does not think it's related to the bottom problems...but I do. They usally run together.

Let's see if the elavil will help me check out for awhile.Thanks for all the responses girls. Talk w/ you tomorrow.

Sara in Syracuse

Re: need to vent a bit

In a message dated 8/25/08 10:43:02 PM, spenna (AT) twcny (DOT) rr.com writes:Sara, I remember you also. I wonder about the stress connection also. I had just finished tutoring the week of my flare. It was mostly uncomplicated tutoring, so I didn't attribute the flare to that. I think the real issue now is that I am 46 and in perimenopause...irregular periods. I think that hormones (among other things) play havoc, somehow with the nerves. Then again who knows. I remember thinking when the flare started, well I hope I can get this undercontrol before school starts and also that I am not faving school in an elavil haze. So school starts for me on Wednesday. I keep the urine test stuff around, also, because in the past what I thought was a flare turned out to be a UTI. This time around, I tested negative for the UTI two days in a row. It really plays havoc with your mind though, because when mine flares there is a lot of urethral burning that feels identical to a UTI or a bladder infection. What hell, eh? This time, by the end of the first week, I had it all--burning, pins, needles, raw feeling, and this is when I know it is really hitting hard--my skin, legs and arms and my inner ears itch and burn. I mention all this so that if anyone else is wandering around losing their mind over the weird symptomology they don't give in to the mind games this disorder plays on a woman and get into the lonely, black place of hopelessness. I was in a panic too, because I had a limited amount of pain control meds. The doctor couldn't see me until tomorrow and so this flare I mostly suffered in agony--because I knew they wouldn't prescribe the pain meds over the phone and the elavil would take at least 3 weeks to get to that "golden" dosage and level in the blood to bring relief. When I see her tomorrow, I am going to discuss with her--how to put a plan in place for when this happens again, so I won't have to explain everything to a nurse who has "never heard of this" and so hinders me getting the elavil and pain med on board while I wait for an appointment with her three (weeks later). I could have been seen by the other docs, but they are all dinks--and also, male--therefore useless. Ack. I could so use not to have this. To lose precious time out of my life, to have to lay in bed crying and praying for sleep...just awful. But there is hope out there. It's just hard to find it and the right combinations of things to find a personalized cure. Have a good school year!**************It's only a deal if it's where you want to go. Find your travel deal here.(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

I just went to a " Pain Specialist " .

She evaluated my Pudendal Nerve. She said that it was irritated and it

was a permanent condition that would never cure.

So I have had two doctors tell me that I will never get better, one of

them today.

I really felt like crying, but told myself to hold it together.

This doctor offered a device that she would implant in my back right

where the Pudendal Nerve comes off the spinal cord. It is like an

electric needle. If you turn it on it soothes the nerve with electricity.

The idea of an electric needle implanted in my spine grossed me out

and then I felt like throwing up and fainting, but I told myself to

hold it together.

She said I should try taking Nortriptyline and increasing my Neurontin

to 3600 mg per day. This is the conservative thing to try for 6 weeks

and if that fails to try the electric gadget.

After I got home I went for a long run and calmed down. I decided I

really didn't want to add even more drugs. I just want to go straight

to the gadget. Gross or not, it is something new to try. I am thinking

I will call her and explain that I want to skip the extra drugs.

What does everyone think. Do you know anyone that has one of these things?

I'll post more details after I watch the DVD.

- the person who will never get better.

[Guest guest]

What does everyone think?

Here is what I think: I've never had my VV diagnosed as a nerve issue. But it is one. Just like everyone else, I went through hell and high water to get some pain relief. I too was offered surgery and a pain specialist wanted to go in and just take a look with floroscopy (sp?) needle in spine injecting dye that the xray would pick up etc. NO WAY was I going to allow that NOR surgery cutting parts of me from "down there" out of my body. And I was in excruciating 24/7 burning, hot needles, the whole ugly nine yards. So it came down for me to try the anti-depressants WITH pain meds AFTER it was explained to me that the Doc WAS NOT giving me anti-depressants because he thought it was all in my head. I agreed. He assured me it was probably a nerve issue and that the meds would eventually get the nerve calmed down and stop firing and thus the pain stops. OH. OK. I had been in pain for months and months with this. So, I was out of work and school anyhow (teacher/summer) so I went with the elavil and oxycontin he prescribed for me. The elavil for the firing nerves and the oxycontin was the ONLY thing that brought relief. We tried other narrcotic pain meds that did not touch it. Oh the tears trying to find something, anything. It took awhile and I continued to cry alot of tears but that was the combination that worked for me. Within about 6-8 weeks, with the oxycontin, I got the elavil up to a level that it worked on the firing nerve(s). It stopped hurting. Of course those six weeks were spent all but drooling and sleeping until at each phase of going up on the elavil my body adjusted and turned a good corner.

That was 8 years ago. I was 38 years old. I eventually weaned down the elavil and the oxycontin and didn't have to take either. I have had flareups. When that happened, I would usually wait until about the third day to see if it was going to calm down or get worse. Doing this I discovered a few triggers (hormones, or after my period, certain foods which I cut completely out of my diet, I will share the list if you want, it is very short). If I didn't have relief on its own after the third day, I went back on the regimen I KNEW worked. And that is how I have "cured" my VV. I was told the same thing, incurable. I just wanted to die. The pain was horrible. Luckily I had a great doc, the time and I prayed alot for an answer.

I recently had a flareup 7/27 until this past weekend, which is the first one I have had in YEARS that went on like that and forced me to go back to the elavil. Same regimen (the slow trek up to 150mgs) only no oxycontin. I did have tramadol which very much helped. The VV just responded over the weekend--but for all intents and purposes I lost three weeks out of my life. Again. As I sit here now I am not burning, or irritated or anything, whereas a week ago I was laying in bed crying, I coudln't sit--only had comfort if you can call it that on my side. Had burning on the tops of my legs and thighs, cheeks and face like a sunburn but no redness. It was a nightmare AGAIN. I am lucky that I don't have a predisposition to addiction with the narcotic pain relievers (all though tramadol is not a scheduled drug). When I get things calmed down, I wean down the elavil from 150 to 75 for a fw weeks, then 75 to 50 for a LONG time and I feel secure things are undercontrol. I stop the pain meds when the pain stops, immediately that day. I have a doctor who believe me and TREATS ME.

So that's my story, in case it helps anyone at all. As usual your mileage may vary--this is just my story to give hope. DO NOT GIVE UP. There is an answer for you too. It might be a different combination of things, but there is something. This list saved my life. : ) Hang in there!

**************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

HI ,

I am sorry you have such pain and they seem to want to do something that really

is scary.

Anyway, I was reading some " stuff " and found a page where it has some women

talking about their adventures with this and thought I would send it along in

case you haven't read it. It might give you some ideas. Somehow if you have only

seen this pain specialist once?? I don't know how he can determine it will never

go away and you must have this implant. But what do I know--nada.

Here is the link:

http://www.healthboards.com/boards/archive/index.php/t-75718.html

Arline

>

> Subject: need to vent a bit

> To: VulvarDisorders

> Date: Monday, August 25, 2008, 3:40 PM

> I just went to a " Pain Specialist " .

>

> She evaluated my Pudendal Nerve. She said that it was

> irritated and it

> was a permanent condition that would never cure.

>

> So I have had two doctors tell me that I will never get

> better, one of

> them today.

>

> I really felt like crying, but told myself to hold it

> together.

>

> This doctor offered a device that she would implant in my

> back right

> where the Pudendal Nerve comes off the spinal cord. It is

> like an

> electric needle. If you turn it on it soothes the nerve

> with electricity.

>

> The idea of an electric needle implanted in my spine

> grossed me out

> and then I felt like throwing up and fainting, but I told

> myself to

> hold it together.

>

> She said I should try taking Nortriptyline and increasing

> my Neurontin

> to 3600 mg per day. This is the conservative thing to try

> for 6 weeks

> and if that fails to try the electric gadget.

>

> After I got home I went for a long run and calmed down. I

> decided I

> really didn't want to add even more drugs. I just want

> to go straight

> to the gadget. Gross or not, it is something new to try. I

> am thinking

> I will call her and explain that I want to skip the extra

> drugs.

>

> What does everyone think. Do you know anyone that has one

> of these things?

>

> I'll post more details after I watch the DVD.

>

> - the person who will never get better.

>

>

> ------------------------------------

>

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

> Thanks for your cooperation! **

>

> ***

[Guest guest]

>Hi ,

I am sorry to hear about your Pudendal nerve, I was just Dx with PN

also , it is horrible, I had a nerve block done had short term relief

and now I am having a bad flare.

I went to see Dr. Conway in NH he never mentioned such a device to

me, he wants to try the blocks first and if that does not work

surgery, I can not take medications due to an eye condition, so for

now I am praying that the blocks will help I know all about the how

hopeless this condition can make you feel I have cried a river sice I

have been dx.

What test did they perform to know that your Pudendal nerve was gone?

and how do they know it will not get better?

Hang in there..

> I just went to a " Pain Specialist " .

>

> She evaluated my Pudendal Nerve. She said that it was irritated and

it

> was a permanent condition that would never cure.

>

> So I have had two doctors tell me that I will never get better, one

of

> them today.

>

> I really felt like crying, but told myself to hold it together.

>

> This doctor offered a device that she would implant in my back right

> where the Pudendal Nerve comes off the spinal cord. It is like an

> electric needle. If you turn it on it soothes the nerve with

electricity.

>

> The idea of an electric needle implanted in my spine grossed me out

> and then I felt like throwing up and fainting, but I told myself to

> hold it together.

>

> She said I should try taking Nortriptyline and increasing my

Neurontin

> to 3600 mg per day. This is the conservative thing to try for 6

weeks

> and if that fails to try the electric gadget.

>

> After I got home I went for a long run and calmed down. I decided I

> really didn't want to add even more drugs. I just want to go

straight

> to the gadget. Gross or not, it is something new to try. I am

thinking

> I will call her and explain that I want to skip the extra drugs.

>

> What does everyone think. Do you know anyone that has one of these

things?

>

> I'll post more details after I watch the DVD.

>

> - the person who will never get better.

>

[Guest guest]

Sara, I remember you also. I wonder about the stress connection also. I had just finished tutoring the week of my flare. It was mostly uncomplicated tutoring, so I didn't attribute the flare to that. I think the real issue now is that I am 46 and in perimenopause...irregular periods. I think that hormones (among other things) play havoc, somehow with the nerves. Then again who knows. I remember thinking when the flare started, well I hope I can get this undercontrol before school starts and also that I am not faving school in an elavil haze. So school starts for me on Wednesday.

I keep the urine test stuff around, also, because in the past what I thought was a flare turned out to be a UTI. This time around, I tested negative for the UTI two days in a row. It really plays havoc with your mind though, because when mine flares there is a lot of urethral burning that feels identical to a UTI or a bladder infection. What hell, eh? This time, by the end of the first week, I had it all--burning, pins, needles, raw feeling, and this is when I know it is really hitting hard--my skin, legs and arms and my inner ears itch and burn. I mention all this so that if anyone else is wandering around losing their mind over the weird symptomology they don't give in to the mind games this disorder plays on a woman and get into the lonely, black place of hopelessness.

I was in a panic too, because I had a limited amount of pain control meds. The doctor couldn't see me until tomorrow and so this flare I mostly suffered in agony--because I knew they wouldn't prescribe the pain meds over the phone and the elavil would take at least 3 weeks to get to that "golden" dosage and level in the blood to bring relief. When I see her tomorrow, I am going to discuss with her--how to put a plan in place for when this happens again, so I won't have to explain everything to a nurse who has "never heard of this" and so hinders me getting the elavil and pain med on board while I wait for an appointment with her three (weeks later). I could have been seen by the other docs, but they are all dinks--and also, male--therefore useless.

Ack. I could so use not to have this. To lose precious time out of my life, to have to lay in bed crying and praying for sleep...just awful. But there is hope out there. It's just hard to find it and the right combinations of things to find a personalized cure.

Have a good school year!

**************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

asked: “This

doctor offered a device that she would implant in my back right where the

Pudendal Nerve comes off the spinal cord. It is like an

electric needle. If you turn it on it soothes the nerve with electricity. What

does everyone think. Do you know anyone that has one of these things?”

– my guess is that you’re referring to an Interstim implant. I had

one of those and it was remarkable. It really worked well.

The

procedure is a two step procedure – or at least it used to be. The first

surgery is a minor surgery where the surgeon inserts a tens unit into the same

area where the interstim would go. You get to spend several days with the Tens

unit. You adjust the strength of the pulses, etc. If you experience a bit of

improvement, chances are good that the interstim would work for you and if you

so choose, you move onto the second stage.

The

second stage is the actual surgery to insert the interstim. You’re awake

the entire time – but with plenty of anesthetic so that it doesn’t

hurt. But you need to be awake so that you work with the surgery team on the

placement of the leads – what feels right, what doesn’t etc.

The

control unit is put into your butt and you control the settings with an

external device that you put over the control unit on your rear-end.

Basically,

the interstim unit generates regular small electric pulses that forces the

pudendal nerve onto a regular cycle. You feel the electric charges as small

pulses in the genital area. I know it sounds very odd but you soon become

unaware of the pulses.

In

a period of six weeks, I was able to completely go off of medication. The

device really worked fabulously well for me.

Now

for the downside: I don’t generate much scar tissue. The interstim lead

relies upon generation of scar tissue to hold it in place. However, because I

didn’t generate scar tissue, my lead kept moving. I had two surgeries to

try to get it set in place, but we just couldn’t get it to stay.

The

other thing is that you do have a lead inside of you and I’m not entirely

convinced that it was inert – that it didn’t cause its own little

set of issues. I had my leads and control unit pulled out last year while I was

in for endometriosis surgery. My unit had been turned off for three years prior

to its removal. I never had discomfort or pain from it. But again, I just

thought I just probably have it taken it out.

Steph

[Guest guest]

Dear Prairie: it is wonderful how the TRAMADOL helps. Nice to know someone else takes it upon as needed to take the edge off a flare. love, ml who is down to 50 mg of Lyrica nitely.

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ]On Behalf Of cahouse5@...Sent: Monday, August 25, 2008 7:25 PMTo: VulvarDisorders Subject: Re: need to vent a bit

What does everyone think?Here is what I think: I've never had my VV diagnosed as a nerve issue. But it is one. Just like everyone else, I went through hell and high water to get some pain relief. I too was offered surgery and a pain specialist wanted to go in and just take a look with floroscopy (sp?) needle in spine injecting dye that the xray would pick up etc. NO WAY was I going to allow that NOR surgery cutting parts of me from "down there" out of my body. And I was in excruciating 24/7 burning, hot needles, the whole ugly nine yards. So it came down for me to try the anti-depressants WITH pain meds AFTER it was explained to me that the Doc WAS NOT giving me anti-depressants because he thought it was all in my head. I agreed. He assured me it was probably a nerve issue and that the meds would eventually get the nerve calmed down and stop firing and thus the pain stops. OH. OK. I had been in pain for months and months with this. So, I was out of work and school anyhow (teacher/summer) so I went with the elavil and oxycontin he prescribed for me. The elavil for the firing nerves and the oxycontin was the ONLY thing that brought relief. We tried other narrcotic pain meds that did not touch it. Oh the tears trying to find something, anything. It took awhile and I continued to cry alot of tears but that was the combination that worked for me. Within about 6-8 weeks, with the oxycontin, I got the elavil up to a level that it worked on the firing nerve(s). It stopped hurting. Of course those six weeks were spent all but drooling and sleeping until at each phase of going up on the elavil my body adjusted and turned a good corner.That was 8 years ago. I was 38 years old. I eventually weaned down the elavil and the oxycontin and didn't have to take either. I have had flareups. When that happened, I would usually wait until about the third day to see if it was going to calm down or get worse. Doing this I discovered a few triggers (hormones, or after my period, certain foods which I cut completely out of my diet, I will share the list if you want, it is very short). If I didn't have relief on its own after the third day, I went back on the regimen I KNEW worked. And that is how I have "cured" my VV. I was told the same thing, incurable. I just wanted to die. The pain was horrible. Luckily I had a great doc, the time and I prayed alot for an answer. I recently had a flareup 7/27 until this past weekend, which is the first one I have had in YEARS that went on like that and forced me to go back to the elavil. Same regimen (the slow trek up to 150mgs) only no oxycontin. I did have tramadol which very much helped. The VV just responded over the weekend--but for all intents and purposes I lost three weeks out of my life. Again. As I sit here now I am not burning, or irritated or anything, whereas a week ago I was laying in bed crying, I coudln't sit--only had comfort if you can call it that on my side. Had burning on the tops of my legs and thighs, cheeks and face like a sunburn but no redness. It was a nightmare AGAIN. I am lucky that I don't have a predisposition to addiction with the narcotic pain relievers (all though tramadol is not a scheduled drug). When I get things calmed down, I wean down the elavil from 150 to 75 for a fw weeks, then 75 to 50 for a LONG time and I feel secure things are undercontrol. I stop the pain meds when the pain stops, immediately that day. I have a doctor who believe me and TREATS ME. So that's my story, in case it helps anyone at all. As usual your mileage may vary--this is just my story to give hope. DO NOT GIVE UP. There is an answer for you too. It might be a different combination of things, but there is something. This list saved my life. : ) Hang in there!

[Guest guest]

Wow, thank you! It means the world to me to hear good news about this

scary device.

Scary or not, I was going to get it done but I really wanted to hear

from someone who had it work.

Thank you thank you!

>

> asked: " This doctor offered a device that she would implant in my

> back right where the Pudendal Nerve comes off the spinal cord. It is

> like an

> electric needle. If you turn it on it soothes the nerve with

> electricity. What does everyone think. Do you know anyone that has one

> of these things? "

>

>

>

> - my guess is that you're referring to an Interstim implant. I had

> one of those and it was remarkable. It really worked well.

>

>

>

> The procedure is a two step procedure - or at least it used to be. The

> first surgery is a minor surgery where the surgeon inserts a tens unit

> into the same area where the interstim would go. You get to spend

> several days with the Tens unit. You adjust the strength of the pulses,

> etc. If you experience a bit of improvement, chances are good that the

> interstim would work for you and if you so choose, you move onto the

> second stage.

>

>

>

> The second stage is the actual surgery to insert the interstim. You're

> awake the entire time - but with plenty of anesthetic so that it doesn't

> hurt. But you need to be awake so that you work with the surgery team on

> the placement of the leads - what feels right, what doesn't etc.

>

>

>

> The control unit is put into your butt and you control the settings with

> an external device that you put over the control unit on your rear-end.

>

>

>

> Basically, the interstim unit generates regular small electric pulses

> that forces the pudendal nerve onto a regular cycle. You feel the

> electric charges as small pulses in the genital area. I know it sounds

> very odd but you soon become unaware of the pulses.

>

>

>

> In a period of six weeks, I was able to completely go off of medication.

> The device really worked fabulously well for me.

>

>

>

> Now for the downside: I don't generate much scar tissue. The interstim

> lead relies upon generation of scar tissue to hold it in place. However,

> because I didn't generate scar tissue, my lead kept moving. I had two

> surgeries to try to get it set in place, but we just couldn't get it to

> stay.

>

>

>

> The other thing is that you do have a lead inside of you and I'm not

> entirely convinced that it was inert - that it didn't cause its own

> little set of issues. I had my leads and control unit pulled out last

> year while I was in for endometriosis surgery. My unit had been turned

> off for three years prior to its removal. I never had discomfort or pain

> from it. But again, I just thought I just probably have it taken it out.

>

>

>

> Steph

>