Questions

November 10, 1998

Hi..Kal, I emailed you twice (!!!) this morrning answering your last post

first and then clicked on the one or two above it and it was another from you

so I answered that one, too..sent to wd2@.... BOTH came back via that

MAILER thing!!! argh...

There is NO way to question that canceling. I double checked and had your

address correct..didn't I??? I have to write down the sender's address and

then copy it on my keyboard so 90% of the time, they come back...sometimes

several " windows " long., having taken me l/2 an hour or an hour to write..don't

know what to do..guess I will just have to quit answering altogether!!! I

answered a bunch last week and hadn't been well enough to be ON the computer

for sometime and was told I'd emailed too MANY..guess I HAD but the subject I

am most interested in and which I've " fought " for nearly 60 years came on

which isn't usually true on a VV list (IC) and I thought I could help with all

those years' experience.. I feel my wings are clipped!! Several gals have

tried to tell me HOW to reply directly to the sender but they don'[t have the

same computer I do or the same AOL or something b/c I can't just click onto

the name..unless it is in blue ink. Others have tried but without the same

equipment, they'vetold me toclick on this or that & I don't HAVE those icons..

!!! Warmly, Lorane

November 10, 1998

Lucy:

I think the doctor is trying to make you put the horse before the cart.

I'd try tapering off the Calcium or adding in more oxalate items, before

I'd stop the Elavil. Why would he suggest it? It's not dangerous,

addictive, etc. and seems to be working fine. I'd stick with it,

especially, since it takes time to wean off and more time to go back on

and see results.

my two cents,

kal

On Tue, 10 Nov 1998 14:48:45 EST Lberndt@... writes:

>From: Lberndt@...

>

>Hi to everyone,

> I am relatively better and had an interesting conversation

>with my gyn today

>and would like everyone's opinions if you think they will help. My

>doctor

>wants me to stop taking the antidepressant (amitriptyline) after this

>refill

>runs out to see if that is what is working. I admit I am scared to as

>I don't

>want to experience the pain, burning and itching I had prior to taking

>the

>medicine. Has anyone been on an antidepressant (low dosage) been

>better and

>then stopped it? Also, I am taking calcium citrate and trying to

>follow the

>low oxalate diet. I would appreciate anyone's advice. My doctor is

>very nice

>and willing to work with me. I am sending him all the info on the

>internet on

>Vulvodynia I can find.

>Health and happiness,

>Lucy

>

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

>

November 11, 1998

Lucy,

I agree with Kal's two cents. I've been taking 75 mg of Amitryptiline for

3-1/2 years now. I at one time was very optimistic and tried to wean myself

off of it. Big mistake! The pain and burning came back full-fledge!

My doctor now prescribes one year at a time. According to her, if it's not

broke, don't fix it. I agree. The medicine is alleviating the pain. It's

not harmful or addictive. I certainly won't go off of it.

Health & happiness,

Sheri

In a message dated 11/10/98 3:32:57 PM Eastern Standard Time, vvd2@...

writes:

<< Lucy:

I think the doctor is trying to make you put the horse before the cart.

I'd try tapering off the Calcium or adding in more oxalate items, before

I'd stop the Elavil. Why would he suggest it? It's not dangerous,

addictive, etc. and seems to be working fine. I'd stick with it,

especially, since it takes time to wean off and more time to go back on

and see results.

my two cents,

kal >>

November 12, 1998

Mari, Sheri & Kal: Doesn't Elavil (Maytriptline " cause you gals a big problem

with constipation? It is LISTED as having that as one of the " adverse

reaftions " in the pDR and it nearly RUINED that part of me!!!

I tried them all,,all tricylcics and had the same problem. NOW, my doc says

NEVER to try again. I could certainly use the help for pain but they dind't

Do that for me, either!! Am GLAD they ehlp you gals..wish I COULD take

them..or SOMETHING that would help!!!PS TO anyone out there...Do any of you

have the email address of a SUE at the Univ of conn who is ON our list? She

asked me to answer questions for her for a paper as she is a grad student, I

think. I usually click right onto her emails but was was unable to take that

much time when it came thru this time so I printed it & spent about 2

hrs.replying, about 2:00 a.m. yesterday..and it came back!! I have one ....of

a time when I DON'T, or am not ABLE, to click right ON the sender and try SO

hard to avoid sending anything thru the list!! Now, here I sit with all the

time & work and don't have her email address.!!.Can anybody out there come up

with it?? Thanks so much! LHend12826@... Lorane

November 12, 1998

Sheri,

I have started to take this same drug, and am working my way up to 50mg (so far

up to 25

mg). Do you get side effects from taking 75 mg?

I am having a little bit of dry mouth and that is all so far on the 25 mg. Do

the side

effects go away after awhile? My one doc throught I would need to be on them

for about 3

months after I get up to the 50 mgs. I'd hate to think I would have to be on

them

forever.

Did you try going off them ever? I throught the idea of the drug was to stop

the loop of

pain and once that was stopped you could go off the drug. Marie at

nickels@... PS Did you gain weight while on them?

SheriMW@... wrote:

> From: SheriMW@...

>

> Lucy,

>

> I agree with Kal's two cents. I've been taking 75 mg of Amitryptiline for

> 3-1/2 years now. I at one time was very optimistic and tried to wean myself

> off of it. Big mistake! The pain and burning came back full-fledge!

>

> My doctor now prescribes one year at a time. According to her, if it's not

> broke, don't fix it. I agree. The medicine is alleviating the pain. It's

> not harmful or addictive. I certainly won't go off of it.

>

> Health & happiness,

>

> Sheri

>

> In a message dated 11/10/98 3:32:57 PM Eastern Standard Time, vvd2@...

> writes:

>

> << Lucy:

>

> I think the doctor is trying to make you put the horse before the cart.

> I'd try tapering off the Calcium or adding in more oxalate items, before

> I'd stop the Elavil. Why would he suggest it? It's not dangerous,

> addictive, etc. and seems to be working fine. I'd stick with it,

> especially, since it takes time to wean off and more time to go back on

> and see results.

>

> my two cents,

> kal >>

>

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

>

November 12, 1998

Dear Sherry:

I was so glad to see your message re amitryptiline (I'm sure I'm not spelling

that correctly..sorry). My gyne just started me on it yesterday. I am to

take 10 mgs. nightly for 2 weeks, then increase to 20 mgs. nightly. I seem to

be very sleepy this morning...does it affect you this way...or do I just need

to get used to it. Any other effects I should know about? Did you start at

75mgs. or have you increased through time?

I am also going to be taking Diflucan 150 mgs. once a week for 6 weeks. I

hope this combination will help because I am at my wits' end!! I don't know

how some people have lived with this for long periods of time. I have been

suffering for 4 months and already feel like I'm falling apart!!

Please let me know about the amitryptiline (there's that goofy spelling

again).

Thanks,

Barb

November 12, 1998

Lorane,

When I first started with Amitryptiline, I got all the side effects. I take a

stool softener with it as recommended by a person at the NVA support group,

and it helps. I've been doing this for 3-1/2 years now and most of the side-

effects have gone away.

As a result of the stress of not knowing what was wrong, I lost 15 pounds. I

couldn't afford this; it brought me down to 95 pounds. As a result of taking

the medicine, I gained 30 pounds. So really I'm only 15 pounds above what I

started at.

I don't have the dry mouth or the constipation any more. I don't know if it

would work this way for everyone but it did for me.

Health & happiness,

Sheri

November 12, 1998

Hi Marie,

I started on 25 mg and worked my way up to 75 mg. I don't remember the

timeframe but it wasn't very long - maybe 3 weeks to a month? I had side

effects initially - dry mouth, constipation, and weight gain. The dry mouth

went away on its own; the constipation is helped by taking a stool softener

with the medicine; and the weight gain, well let's just say I weigh more now

than when I started. I lost weight with the anxiety of not know what was

wrong so all in all I'm only 15 pounds heavier now.

I tried to go off once and the pain returned immediately. I now take it every

night (I do skip one now and then) but would prefer to stay on this medicine

forever rather than endure all that pain again.

Health & happiness,

Sheri

In a message dated 11/11/98 11:55:59 PM Eastern Standard Time,

nickels@... writes:

<< I have started to take this same drug, and am working my way up to 50mg (so

far up to 25

mg). Do you get side effects from taking 75 mg?

I am having a little bit of dry mouth and that is all so far on the 25 mg.

Do the side

effects go away after awhile? My one doc throught I would need to be on them

for about 3

months after I get up to the 50 mgs. I'd hate to think I would have to be on

them

forever.

Did you try going off them ever? I throught the idea of the drug was to stop

the loop of

pain and once that was stopped you could go off the drug. Marie at

nickels@... PS Did you gain weight while on them?

>>

November 13, 1998

Thank you Sheri for the info re: amytriptiline..it didn't work that way for ME

but I have a VERY difficult constipation problem..have had 3 surgeries & have

a rectal PROLAPSE..along with hemorrrhoids...SO, I simply cannot take it...or

any pain pills or anything that causes constipation and I took MetaMucil for

years, then Fiber-Con -very uncomfortable in that regioand feel I am falling

out all the time. The next step would be a colostomy so I'd be exchaning one

problem for another almost worse..surely WISH i could as I'd love to b e pain

free or at least some or less! Thanks for your reply...Warmly Lorane

This " condition " was caused by the carelessnes of a doc who was treating me

for " depression " before they KNEW ABOUT ic is VERY aggravating to

me..aarrgh!!

November 13, 1998

Lorane,

That's what makes this condition so difficult to deal with. No one treatment

works the same for everybody. Hope you find something that helps you soon.

Health & happiness,

Sheri

In a message dated 11/13/98 7:26:25 PM Eastern Standard Time,

LHend12826@... writes:

<< hank you Sheri for the info re: amytriptiline..it didn't work that way for

ME

but I have a VERY difficult constipation problem..have had 3 surgeries & h >>

November 14, 1998

Barb,

I hit lucky when I was put on Amitryptiline. I started on 25 mg and worked up

to 75 mg. I guess it took about a month. It's been 3-1/2 years now and I've

been relatively pain-free except for minor flare-ups. Just enough flare-ups

to let me know I'm not cured, just managing the pain.

One of the side effects w/Amitryptiline is drowsiness. At first I had trouble

getting up in the morning (I take it at bedtime). That's stabilized now but

if it becomes a problem, take it about an hour or so before bedtime so the

effects allow you to sleep through the night without waking up too drowsy. I

had severe insomnia during the worst part of my pain (for about 8 months) so I

welcomed the medicine helping me sleep.

I took Diflucon for about a month (one a week) in 1995 for yeast. Haven't

tested positive for yeast since.

I hope you're feeling better but, if not, hang in there. There's something

out there that will help ... we just have to find it.

Health & happiness,

Sheri

In a message dated 11/12/98 9:06:07 AM Eastern Standard Time, BAdam131@...

writes:

<< Dear Sherry:

I was so glad to see your message re amitryptiline (I'm sure I'm not spelling

that correctly..sorry). My gyne just started me on it yesterday. I am to

take 10 mgs. nightly for 2 weeks, then increase to 20 mgs. nightly. I seem

to

be very sleepy this morning...does it affect you this way...or do I just need

to get used to it. Any other effects I should know about? Did you start at

75mgs. or have you increased through time?

I am also going to be taking Diflucan 150 mgs. once a week for 6 weeks. I

hope this combination will help because I am at my wits' end!! I don't know

how some people have lived with this for long periods of time. I have been

suffering for 4 months and already feel like I'm falling apart!!

Please let me know about the amitryptiline (there's that goofy spelling

again).

Thanks,

Barb >>

November 15, 1998

Dear Sheri:

Thanks for responding to my note...I feel somewhat better today. Most of my

irritation is toward the rectal area now...hopefully that will improve in

time.

I do have trouble waking up in the morning...so I will take your advice and

pop the Amitryptiline a little earlier in the evening. It is nice to sleep

soundly for a change. I'm feeling a little foggy all day but I'm assuming

that will improve as my system gets used to the drug.

You have given me cause to be optimistic...thanks so much.

Wishing you good health,

Barb

February 23, 1999

....I have read your questions and I have problems with both issues too.

Some women on this list have that Bart. Gland problem too which, at times,

causes a lot of difficulty with intercourse. I use lidocaine, per my Doctor's

recommendations for that problem. If it is too sore to even sit, I use it for

that purpose too.

As far as the PMS is concerned, I went off of BCP in December which I had

originally went on for my PMS symtpoms. I have noticed that some of the

supplements that I started taking, per a Naturpath's recommendation, have

really helped. I also have started excering rigourously and it has improved

my mood. It is still a struggle though.........I am curious to see what other

women have to say about these too issues!

Take Care,

B-C

Mailto: ZipSkpChia@...

March 4, 1999

--------

>From: Donna.Storter@...

>To: cgd@...

>Subject: RE: questions

>Date: March 04, 1999

>

>REPLY TO:

>

>>

>>Hi everyone, me again. Full of questions.

>>

>>** For those of you who have pain with intercourse

> can you please describe in detail what the pain on

>>intercourse feels/felt like?

>OKAY....

>

>It IS BOTH a sandpaper feeling and a cutting feeling to me.

>

>BTW in spite of my (former) gyno diagnosis of genital atrophy ( I'm full-blown

menopause) I have NO

>problem with lubrication during the arousal and excitement phases of sex. But,

my anterior introital area is

so

>sore that penetration just makes me " dry " up. The initial scrape hurts and if

I try to continue the friction

>usually becomes unbearable. Use of K-Y, Replens or whatever do not help by

this time.

>

>I've described it as sand in vaseline. My clitoris and its hood look and

respond normally. But if my vulvar

>area could be viewed as a clock with clit at 12 o'clock, I have a

reddish/purply ring from 1 o'clock to 11

>o'clock. Six o'clock is the worst because of old episiotomy scar.

>

>Frequency is a joke! Desire just rarely manifests itself enough to motivate

another attempt. We had sex last

>summer in June, and then again in late January this year. The last time was

still painful, and yet (this I don't

>quite understand) I rapidly reached orgasm. Foreplay involved no genital

contact. Maybe it was good

>because the arousal organ involved was just my brain! Am I masochistic? or

desperate?

>

>I'm 50, my husband is 63 and we've only been married 2 years. He has no sexual

impairment or

dysfunction;

>has normal (what I consider normal anyway) sexual appetite, yet is so patient

and understanding about my

>dysfunction. I had been celibate over a year when we met and when we became

sexually active, I was in vv

>remission, so to speak. Anyway, after a few months of frequent ( 3-4 times a

week) sex, my flare-up had

>progressed to a point that sex finally was intolerable. The worst flare up I'd

ever had.(Now I hear you

>younger women laughing about what I call frequent!!!)

>

>Do you suppose that sexual activity caused the re-flare? I've always thought

that the " use it or lose it " adage

>applied to all parts of the body. Not abuse, but normal use. This thing is so

complicated.

>

> I proactively and aggressively sought help but the gyno I was using then was

so uninformed and so unwilling

>to LISTEN to me.However,

>

>TODAY IS THE DAY I FINALLY GO TO THE VV SPECIALIST I FOUND THRU NVA. I've

>prepared my list of questions, made a notebook of my print-outs and notes, and

also made a list of all the

>remedies I've previously tried (I already mailed him my chart from former

gyno).

>

>I hope others will post their experiences on this subject. I learn from

everyone.

>

>Carolyn, thanks for sharing so openly.

>

March 5, 1999

I've had minor surgery to remove a part of the vestibule which pretty much got

rid of the pain for me, except with intercourse. That pain is diffferent. It

feels like a painful stretching feeling...Like someone is trying to pull the

skin way too far. I've pinpointed the exact place where this stretching

feeling comes from . I see my doctor in two weeks for the first time in a

while and hopefully we can come up with something to get rid of that feeling.

It's the only pain that I have left and I'd be so happy to say that I'm pain-

free!

Hope this helps.

March 5, 1999

I've had minor surgery to remove a part of the vestibule which pretty much got

rid of the pain for me, except with intercourse. That pain is diffferent. It

feels like a painful stretching feeling...Like someone is trying to pull the

skin way too far. I've pinpointed the exact place where this stretching

feeling comes from . I see my doctor in two weeks for the first time in a

while and hopefully we can come up with something to get rid of that feeling.

It's the only pain that I have left and I'd be so happy to say that I'm pain-

free!

Hope this helps.

March 5, 1999

I've had minor surgery to remove a part of the vestibule which pretty much got

rid of the pain for me, except with intercourse. That pain is diffferent. It

feels like a painful stretching feeling...Like someone is trying to pull the

skin way too far. I've pinpointed the exact place where this stretching

feeling comes from . I see my doctor in two weeks for the first time in a

while and hopefully we can come up with something to get rid of that feeling.

It's the only pain that I have left and I'd be so happy to say that I'm pain-

free!

Hope this helps.

April 13, 1999

Hi everyone,

I just have a couple of questions for the women who had yeast problems. What

does it feel like during and after sex for those who try to have sex even

though they know it will hurt? Do you have pain just at the opening or do

you feel pain on the inside of the vagina too? After sex does it hurt, burn,

and itch more for you? Do you think because of the friction it irritates the

tissues more? For those who had yeast do you also have burning with

urination and you were told you don't have IC? Does it hurt to have a bowel

movement sometimes? Does your anal area itch or burn sometimes too? Do you

notice you feel spasms after intercourse at the urethra, clitoris, or

labia's? Do you notice a really strange odor to your urine at all? Please,

write back if you can answer these questions.

Sincerely,

a

April 13, 1999

Hi a,

I had the rare yeasts and I'm sure you've read my story and advice on the

yeast path. Here are some answers to your questions.

My husband and I had sex a few times while on yeast. I had pain at the

opening, on initial penetration and then it was OK. I also noticed that the

pain was better after than before. It certainly wasn't any worse and perhaps

I was in a less stressed mood. I also think the extra lubrication helped.

For me the labia burned while urinating and bowel movements hurt too. By the

way I forgot to mention that I had this rare yeast in my rectum as well as

vagina. I had burning there too, and itching. ( This yeast, Candida Krusei,

was discovered in the microscope wet mount and later cultured out positive

for both vagina and rectum).My doctor routinely does moth, vaginal, and

rectal cultures on all patients with vulvar pain.

The burning and ithing seemed to travel a lot. Sometimes worse at the

vaginal opening, sometimes in the perineum, sometimes by the urethra, and

sometimes the labia burned and throbbed.

As you know it took 7 months and lots of drugs to get rid of this rare yeast.

Now my pain is much worse than before. Sex is definitely out. The yeast is

gone but I think I was just in pain for far too long and nerve damage has set

in. Not to mention that I was irritated by all of the drugs.

As I said before, be careful. Frequent use of Diflucan and other oral

antifungals can lead to resistant, nasty forms of yeast the most common being

Krusei and Glabrata.

I don't want to depress you by saying that the yeast route didn't work for me

and made everything worse. I just hope you can learn from my mistakes.

Good luck,

Sandi

April 14, 1999

a,

>I just have a couple of questions for the women who had yeast problems.

What

>does it feel like during and after sex for those who try to have sex even

>though they know it will hurt?

It really burned. Yeast makes more pain in the vagina for me. My

pain is usually more concentrated in the clitoral area so intercourse isn't

usually impossible, but with flare-ups it can be! Yeast is a different kind

of pain... not localized like the " other " pain, but in trying to have sex it

sometimes felt a little like my husband's penis was made of razor blades

(which is why we just really can't do it whenever I have bad yeast)!

Youchee!

>Do you have pain just at the opening or do

>you feel pain on the inside of the vagina too? After sex does it hurt,

burn,

>and itch more for you? Do you think because of the friction it irritates

the

>tissues more?

Yep, yep and yep.

For those who had yeast do you also have burning with

>urination and you were told you don't have IC? Does it hurt to have a

bowel

>movement sometimes? Does your anal area itch or burn sometimes too? Do

you

>notice you feel spasms after intercourse at the urethra, clitoris, or

>labia's? Do you notice a really strange odor to your urine at all?

Never had IC (hope I never do!). Bowel movements were (and

sometimes still are) uncomfortable with yeast present. Yep, anal area can

REALLY itch and burn sometimes!! VERY unpleasant. I have felt a little bit

of urethral spasms at times. Clitoris is my worst pain area during bad

flare-ups. Labia: with flare-ups, it can alternate between irritating

inflammation and pinpoint (but sometimes numerous) burning or bad stinging

in very localized areas. Sometimes I wonder if this is due my skin being

messed up with years of prescription creams, because I never had that

symptom before using them. Only time I notice a strange urinary odor is

after eating asparagus.

Gail R.

August 25, 2000

> Hi everyone,

> Last night, I had to make a trip to the ER, because of nausea

and

> vomiting, and severe upper right quadrant pain.

Definitely sounds like something liver-related.

> Hematocrit, and two other things, something having to do

with " lymph " were

> elevated.

" Lymph " probably was lymphocytes.. My wife said this could indicate

a viral infection, but there may be other explanations as well.

When my hematocrit has been off, it's been on the low side... of

course that was mostly after I'd had the bleeding varices, so you'd

expect it to be low.

Sorry I can't help more! Hope your feeling better!

athan

October 26, 2000

Hi ,

I am sorry to hear that Phil is not doing so well. I cant answer the

question about how PSC effects the other organs, but I can suggest a few

alternatives. had good sucess with Milk Thistle. Others in this group

take Milk Thistle and SAM-e. SAM-e helps with the muscle aches and joint

pain (in my opinion....because I take it for my osteoarthritis in my lower

back and it does help greatly). Also helps mood...not sure how it effects the

liver. When had problems with bowel movement the GI told him to take

this liquid over the counter (forgot the name) and that helped greatly. Call

the Pharmacy...they will know what I am talking about. (If its constipation

that is).. IM me later and let me know how everything is going! Love

October 26, 2000