Re: long post: VV and SS, new twist

[Guest guest]

I too have dry eyes, when I sleep Ithey get worse, wake up in the middle of

the night to pee and literally have to pry my eyes open, feels gritty and

sandy. Gets worse at night when iam tired and when the heat is on.

No dry mouth however. I believe, since many with fibro also have dry eye

syndrome, this all an autoimmune component. I also have dry skin and hair,

hair falls out actually.

My vuvlodynia is better with lots of water too, but I think that is pretty

common. Iknow quite a few women with IC and vulvodynia who also have

scleroderma.

jackie

[Guest guest]

Mayly,

THANK YOU so much for taking the time for writing such an informative

posting !!! I agree with you that VV can be linked or caused by other

illnesses. I suffer from vulvodynia in conjunction with Polycyctic

Ovarian Syndrome (I don't ovulate, and my related hormones /

endrocrine system are affected by this....) I continue to be VERY

proactive in my treatment, and question what things that my related

illness may affect my VV. I hope that more of us continue to be

proactive and question our treatment(s) so that we can help others.

Warmest regards,

>

> Dear all,

>

> I've been meaning to write for a long while but never got around it.

> I've listening to your stories on and off for some months now,

sometimes

> I just go away and then catch up through the archives. This post is

> rather long but I couldn't avoid it..

>

> In any case since my story has taken some new twists and I have come

> to realize how little attention is given to this and other health

> problems I feel maybe my story could help. None of this is intended

> as medical advise but it may help us all push doctors a little

further.

> I warn you this is a very long post, I hope it doesn't bother

anyone.

>

> So here is my story: three to four years ago I started I with a

> chain of yeast infections, one after the other.. or symptons of

> yeast maybe. The result? I got treated with a dozen creams

> and oral treatments. Well it turned out that at the end I didn't

> have yeast anymore but still had symptoms. So, I was still treated

> with more anti-yeast, cortisone, and so on.. Burning, stinging,

itching..

> more treatment, more burning.. Finally my NP gave me nizoral orally

> for 2 months. That got us convinced that it was not yeast anymore.

>

> For the record, I'm 27 years old, have had yeast before, had HPV

which

> got treated with cryosurgery (did I spell that right?), been

allergic

> to everything from dust to cats and had a pretty healthy life other

> wise ;-) and ohh yeah was on the pill at the time.

>

> In any case, NP sent me to the Gyn with unexplained symptoms. Gyn

said

> that it was VV. So took me off the pill I was taking (which was

orthocept,

> I think) and changed it to alesse. Ohh I forgot to mention another

detail:

> I had been on 6 different pills the last 2 years because of a nasty

nausea

> " side effect " , although I had used orthocept before not even that

was

> working well this time.

>

> The situation was pretty bad. My vulvar area was in pretty bad

shape,

> I had done all the usual recomended changes in lifestyle and it

allowed

> me to go by but it was no life. I gave up a lot of things but I

could

> not even have sex. I tried and tried but at the end I was so scared

> of it that I was even unconsciously avoiding it. My husband was

extremely

> supportive but it was so bad that it was taking a high toll on him

too.

>

> ********

>

> The Gyn started me on 10 mg Elavil to which I reported improvement.

> Now note how I say " reported improvement " , not that I actually

improved.

> It got better, went up to a plateu and slided down again. So Gyn

> raised to 20 mg Elavil. Same pattern.. all the way up to 80 mg!..

>

> That in about a year's time. Last appointment, she said well

> you can adjust your dose to what you think is better and

> I'll see you in 3 months. Now let me explain how I was better.

> Vulvar region was better as long as I don't wear jeans, don't

> have rubbing sex, don't eat weird stuff, don't stop drinking water

> (this last one is important). Vestibular region is better

> (just slightly) as long as I don't have intercourse, don't stop

> drinking water and remember to wash after urinating, in particular

> if I eat something weird.

>

> So we see a pattern here don't we? talked to my NP about it and

> she said that she had read about oxalates and so on and why didn't

> I try the low-oxalate diet and calcium citrate. Ok, so I tried.

> Well, since I was putting on weight because of the Elavil..

> I was sort of on a diet to avoid gaining more weight that combined

> with no oxalates left me with almost nothing to eat. Even worse

> the calcium citrate gave me a strange reaction, I got joint pain.

> So I stopped and kept my policy of drinking water.

>

> I realized that keeping up with the elavil was taking the life out

> of me. I was heavier, slower, sleepier, it was bad, really bad.

> So I conciously took the dose down, while doing a little

experiment.

> I knew the elavil had the effect of forcing me to drink more water

> so I tried to keep up the amount of water I drank while reducing

the

> dose and bingo!.. It worked. After a couple of months I was off

elavil

> and with the same amount of relief as on elavil. So it was not the

> elavil, although some might argue that initially it was.

>

> -Ok, so this is the first moral of my story. For me the elavil was

> not useful in itself it was just that drinking water helped

enormously.

> Has this happened to any of you?

>

>

> *******************

>

> So I started looking for patterns all over. Which were the foods

that

> bothered me? Clothing? There had to be something.

>

> Well by keeping myself above a certaing threshold by drinking

water,

> washing when urinating strong urine and so on. I managed to identify

> some things: Fritos (from frito-lay) caused a sudden bad flare

which

> was cured only by huge amounts of water, Royal blend tea as opposed

> to Earl Grey tea, some nuts..

>

> There are other things that I think affect me but at a lower level

> and I can't really identify them. - What's your list?

>

> A flare, well you all know what flares are like, I'll just be more

> specific about the Fritos one. It was like having little cuts

> all over my vulva. It was really horrible, thank goodness it lasted

> only one day.

>

> Ohh yeahh.. at this point I started experimenting with astroglide.

> Intercourse not yet.. but certainly it was better than trying with

> nothing at all.

>

> And yes the other thing I had to completely eliminate from my life

> was menstrual pads, I went with tampons (all cotton, yes I spend

> hours at the pharmacy reading if the string is all cotton, otherwise

> I can't tolerate it) and use lidocaine on the vestibulus to insert

it.

> Although lately I just use astroglide. Training I guess..

>

> - So that's a thing to try. If not even all-cotton pads work for

you.

> Try the thinnest tampons with astroglide or some lubricant.

>

> Ok, so next what happened, three months or so after I stopped the

Elavil,

> I went on to thinking that there was still something wrong: the

nausea

> had never really gone away although it had gotten better (or so I

> thought) with the last pill change. Since I still couldn't have any

> intercourse at all my husband and I decided that it was not worth

it.

> What is the point? and what if my problems had to do with that?

> So got off those too. Sadly enough my nausea did not go away!

>

> Ohhh yes I'm about to forget. To make thing more fun on that same

year

> I had a lice episode. It would have been you know the normal

> wash your hair with (insert product here) and comb all the knits

out,

> except that it was me. I had to go through 4 or 5 treatments to

really

> get them out, because I kept having the itchiness on the scalp.

> I swear I could feel them walking on my head. At the end the derm

> was so desperate that he gave me a week's dose of oral cortisone

> to see if that made the problems dissapear magically. Good guess but

> it still itches a little (it's been 6 months since I was certified

> knit and lice free).. but it still itches a little..

>

> *******

>

> I'm reading through my own medical history now. No, no the one I'm

> posting here. The real one. I'm looking back to see how many exams

> I got done. How was I diagnosed with VV to start with? What is the

> test that says: you got VV? answer: unexplainable symptons clearly.

>

> I had a couple of routine blood and urine tests. Ok, not a couple

> maybe 3. At least 2 dozens frotis and half a dozen cultures. That's

> about it. Not once did my gyn or NP feel that I should see somebody

> else or the dermatologist found strange that I had little things

coming

> off my scalp that weren't knits.. or why didn't the gyn or the NP

> ever tell me to stop the pills to see if the nausea really had

> anything to do with it.

>

> Once that it was determined that the irritation, burning, pain

> did not come from a yeast infection then the diagnostic is VV

> and let us treat it with the latest treatment we read about last

> week whether that applies or not to your case. For instance I'm

> still wondering why they didn't prescribe me estrace.

>

> I know this is story is not unlike many of yours. There has to

> be some similarity since I just realized that there are 200-300

> members now. There is room for this to strike as close to home

> for some of you.

>

> Here is the twist to this story. Last month I had to go back home

> urgently. Let me note that back home is Venezuela, a country in

> South America. My mom was in the hospital and I had to be with her.

>

> After she got better, I decided to trust the family doctor,

> an internist-rheumatologist, with all the ups and downs of my

> recent medical history. He had seen me as a kid for my allergies

> and more than anything for control.

>

> ************

>

> I first described my nausea problem, I hadn't finished describing

> this, when he already knew what it was. He said it was a esophagal

> symptom and asked me to go to a gastroentorologist inmediately.

> I did, and guess what? I have a bad esophaguitis due to gastric

reflux.

> Nothing to do with the pill. To tell me this, the gastroenterologist

> did an endoscopy and was able to tell the amount of the damage

> and to prescribe medicines according to that. Amazing, isn't it?

> Sorry, I'm being a bit ironic here..but isn't it nice that somebody

> gives you medicines only when they have determined what you have?

> and the amount of the medicines are prescribed according to the

damage?

>

> Next, I explained the rest of the problem. The infections, the

> irritation, burning, VV diagnostic, Elavil, water relief

> ohh yes and the fact that I had just seen the family gyn

> just in case. He asked if he had checked the estrogen which he had.

> That came normal. After that he started asking hundreds of

questions.

> Really!.. some things I understood why they could be related

> but other were completely off for me not for him clearly.

>

> Then he proceeded to do a full physical exam. A true thorough exam.

> Meaning? well he looked at my eyes, ears, nose, mouth, skin, glands,

> nails. I was sort of amused at trying to guess what he was looking

> for. Usual(?) listening to heart, lungs, belly, so on. Then he comes

> out with this tiny little glass... could you please spit for five

minutes

> in here? .. it turns out that I couldn't.. not enough saliva, after

a

> minute or less I was completely dried out.

>

> Things he noted: your skin is really dry (I thought it was

> because of the weather, heating systems and so on..), do

> your eyes feel dry? (no), do they feel like something got under

> them? sand? dust? (yeahhh, when I'm tired.. when I stare at my

> computer.., sometimes..) .. do you feel vaginal dryness?

> (well a little, not really) do you lubricate enough? (well,

> I guess so, it turns out that when I asked my husband he answered

> for me, not really..) is your hair dry? (not really) is your scalp

> dry? (remember the lice episode?) muscle, joint pain? (not really)

>

> Next things he asked: they did full blown blood test, right? (no,

> just routine ones), when? (early last year), urine analysis (again

> early last year, at the same time with my pap smear).. thyroid? (no)

> any other tests (no..)

>

> *******

>

> Ok, so in short he saw more of a generalized dryness that I really

> hadn't noticed. For me they were just a bunch of unrelated

annoyances.

> He asked for blood tests, in particular thyroid tests which came

> out normal. So, according to him, thyroid (I don't know if hypo or

> hyper) could be the cause of the problem. It is not in my case but

> it could be.

>

> - Hint: people with thyroid problems have a reason for VV and your

> gyn should be aware of that.

>

> Next step, inmunological tests (ANA, CH50, anti-rho).. I had no

> idea what they were but when on and did them. They came out negative

> too. We talked about it then. This are tests for a couple of

inmunological

> diseases, among which lupus and Sjogren syndrome. In all he suspects

> some mild form of Sjogren Syndrome. This disease attacks exocrine

> glands and reduces their capabilities of producing secretions such

> as tears, saliva, and yes vaginal lubrication (although in the

> literature is not clear how).

>

> Since tests came out negative he wanted me in for two more tests,

> a Schirmer test which would measure my tear production and a full

> urine test, including the famous oxalates and so on.

>

> Schirmer test is done by an ophtalmologist, is just two strips

> of paper put holding to your eye lids for 5 minutes. In my case

> it came pretty bad, 0-1mm instead of 8-10mm (normal). So there is

> something going on after all. In my doctors opinion this confirms

> a mild form of Sjogren's although no antibodies are present (yet?).

>

> The urine test came out ok, as functioning of the kidneys go.

> Although oxalates are slight high and citrates are slightly low

> and uric acid could be better. Now, this does not mean that I go

> out and do low-oxalate diet right away. According to my doctor

> and the nephrologist I would have to do it closely followed by

> them and keep an eye on not going under.

>

> After all this I came back with the bunch of reports from all

> these exams and my doctor's. The question is will I get a reasonable

> treatment here? You see my problem is not and isolated VV. VV is

just

> a sympton that something is not ok in my body and the prime

> task of whatever doctor is to determine that before bombarding me

with

> medicines.

>

> *********************

> - ok, yes this is the main moral of my story. Is it just me or we

are not

> being treated carefully enough? are our doctors looking beyond

> our symptoms and complains? or are they just treating us based on

> symptoms just as shamans and wizards did a few centuries ago?

> How many exams to discard other possibilities have we had? How many

> exams to determine what is wrong before applying quick fixes have

> we had? how about doing an estrogen test and ph measure before

applying

> estrace? how about an oxalate monitoring before and during and

oxalate

> diet? how about determining if the effect of elavil is really

> " the believed numbing of the nerve endings " ? how about a little

more

> research? how about allergy tests for irritating foods?

>

> - in no way, I'm trying to imply that we all have the same thing.

> On the contrary, I feel that at this point in time, we are all

> being treated as if we have the same thing, and we don't!. It's like

> a while back, somebody had a joint pain and it was labeled

rheumathism

> or arthritis, and everybody was treated in the same way. You

shouldn't

> eat red meat, you should not live in humid places. Today, we know

> there are different forms of arthritis, some of them are

inmunological

> problems, others are just uric acid off equilibrium, and so on.

> How long is it going to take us to get to that point?

>

> - I can't say that having Sjogrens makes me happier than having

> VV, because I have both. VV is just a consequence of Sjogrens in

> my case but on the Sjogrens side it is very clear when you are

> being treated for the symptomatically (to alleviate the symptons)

> and when you are being treated systematically (to cure the condition

> or make it go into remission).. Actually, there is no cure for

> Sjogrens but they're looking for it.

>

> - Lots of the popular things for VV are applicable for Sjogrens VV,

> I'll name a few: vitamin E oil (does wonders), moisturizing

treatments

> (KY Jelly long lasting, Lubrins), lubricants for intercourse

(astroglide,

> others), drinking water..

>

> - Things that are prescribed for VV that should not be given to

Sjogrens

> patients: anti-cholinergic drugs, namely: ELAVIL!!! Oh yes, I asked

,

> could the Elavil had caused the dryness I have now? In principle no,

> the effects should stop as soon as you stop taking it and I had VV

> symptons before that.

>

> I still have to see a doctor here and see what he/she will

recommend.

> I have an appointment for April 7 and I have mixed feelings about

it.

> I'm not sure if I can trust doctors again. Well new doctors I

guess.

> In any case I promised that I'll keep in touch with my family

> doctor and he will be overseeing everything they recommend here.

>

> I know this is the longest a post could get and worse of all from

> somebody who never posted before but I felt I owed to you a little

> room in the new development and if any of this can offer some clues

> to as yet undiagnosed Sjogren sufferers or if any of this makes

sense

> to any of you or maybe because I need some support today.. I feel

> better already.

>

> Thanks for reading/listenining if you did get this far.

>

> Mayly

[Guest guest]

Mayly,

Thanks so much for your post. I too am undergoing lots of tests - I am not

going down with this wothout a huge fight. I have neurological problems that

are just being diagnosed. One of the treatments for the type of neuropathy

that I have is IV immunoglobulin therapy for 5 days, for 3 straight months.

Helps with neuropathy, and some theorize that vv is a form of a local

neuropathy.( But then again, who knows?) *** Again, this is specific to my

case. I don't think we should all undergo such drastic treatment***

I think if a woman has any other symptoms that are strangs she should

consider exploring the big picture.

I also have had horrible effects from the Elavil. I just can't poop. My

bowels do not move at all on their own. This is a serious problem. I am

thinking of going off of it all together. The only way I can poop is by

suppository, every time.

Actually I switched to Doxepin, but it is in the Elavil family and the

constipation has not changed.

Thanks again for your very informative post.

Sandi

[Guest guest]

Mayly,

My name is . I didn't have the same symptoms as you, i have vulvar

vestibulitis. I just went for surgery for it and am hoping for the best.

(It was a very minor surgery). But i just wanted to thank you for informing

us on the information you have. I'm sorry for everything you had to go

through. I haven't gone through the same things as you but i'm sure we can

all relate to what you 've been through as we've all been through a lot of

stuff. I hope everything works out for you and if you need to talk you can

email me.

Thanks

[Guest guest]

Mdayly, Thanks for your post. I did make it all the way through. I found

it fascinating. So many questions to answer. You had a lot of good points.

Warm regards, Donna

[Guest guest]

Sandi, Have you tried taking psylliam seeds with water. My Nathropath

suggested this for me for constipation. I have been constipated all of my

life but this works for me as long as I take it a couple of times a day and

drink plenty of water. Warm regards, Donna

[Guest guest]

In a message dated 3/30/0 12:31:53 PM, you wrote:

<<I have the same effect from the elavil, no poopin goin on in this house

when

elavil is around. I lasted two days at 2.5 mgs believe it or not>>

____________________

Just another example of the capricious nature of this disorder *and* the meds

used to treat it...I am on 150mgs of elavil and do not experience any

constipation. It is helping to control 24/7 burning and stabbing pain, along

with 40mgs of oxycontin, FYI.

I hope to cycle off the elavil very soon though if, God willing--it's

possible. It's not the most pleasant of drugs to be on, but it is helping

and so the choices seem to be few at the moment.

Anne

PS

I would like to ask anyone here who has Rheumatoid Arthritis being treated

with methotrexate, to email me...I think I have developed an allergy to it

that is the trigger for the burning. Was wondering if anyone else has had

that experience...

[Guest guest]

Hi,

Where do you get the psyllium seeds? at the health food store?

Thanks,

Sandi

[Guest guest]

,

<< I suffer from vulvodynia in conjunction with Polycyctic

Ovarian Syndrome >>

Have you been checked for Candida in your intestines? There are a number of

women on the Yeast List that have had their Polycytic Ovarian Syndrome clear

up as they treated the Candida growing in their intestines. It can sometimes

be hard to find a doctor that is even willing to look for Candida in the

intestines. They admit it is there, but don't think it causes any trouble.

It does, but it is attributed to other causes.

Hope this helps.

Anne M., RN

ImmuneBalance@...

http://www.candidafighter.com

[Guest guest]

Anne,

THANK YOU for writing.......I would appreciate it if I could e-mail

you directly so I can get more info on your PCOS and vulvodynia.

Look forward to hearing back from you : )

> ,

>

> << I suffer from vulvodynia in conjunction with Polycyctic

> Ovarian Syndrome >>

>

> Have you been checked for Candida in your intestines? There are a

number of

> women on the Yeast List that have had their Polycytic Ovarian

Syndrome clear

> up as they treated the Candida growing in their intestines. It can

sometimes

> be hard to find a doctor that is even willing to look for Candida

in the

> intestines. They admit it is there, but don't think it causes any

trouble.

> It does, but it is attributed to other causes.

>

> Hope this helps.

>

> Anne M., RN

> ImmuneBalance@...

> http://www.candidafighter.com