introduction

[Guest guest]

My pain was only on contact (vulvar vestibulitis) and now has progressed to

pain at all times (dsythetic vulvodynia). I'm sorry to be the bearer of bad

news but it can happen. Write me personally if you have any questions....

Nery

[Guest guest]

Hi Carola,

Welcome to our group. I am sorry for your pain and know how frustrating this

has been for you. I have had CONSTANT pain for about 2 years now. BUT there

are so many things to try in addition to steroid creams and low ox diet with

citrate. Others have probably responded with suggestions but some options

include estrogen cream, antidepressants, anticonvulsants, NAG, MSM, Oxabsorb,

Guafenisen, long term antifungals, biofeedback etc.

I guess it is a positive sign that there are so many things to try, but it

also can be frustrating. Try this for six months and that for a year. We

all want an instant cure. Some of us come to the point where they are tired

of searching for a cure and just want to manage the pain, and others just

fight on. I am a fighter, and I think that is because my pain is so

constant. If I only had flare ups every now and then, then perhaps I would

be content to manage the pain.

I have tried so many things at once. I know that is not the smartest thing

to do, but again it depends on the level of pain. If you have constant pain

then you will do anything to get of pain as quickly as possible, even if that

means no knowing what worked. It sounds like you only have pain on contact

(POC) so you might want to limit what you try to a few things at the same

time.

My personal opinion is that if a doctor has told you that the next step is

surgery and you have only tried a few things, then he is not a good doctor

for vulvodynia. All the current literature says surgery is often successful

for pain on contact but should be the last resort.

I am glad you found this group. If I had found this sooner I think I would

have been better by now.

Take care,

Sandi

[Guest guest]

Surgery should be a last resort after you've exhausted all other

possibilities. I am not speaking from surgical experience. I just hae this

philosophy that women are cut on alot by male doctors. Jeeeesus that's your

genitalia. We need to heal internally ( emotionally) before we can even

consider external(physical) dO NOT CONFUSE THAT STATEMENT WITH THE IDEA

THAT IT IS IN YOUR HEAD - THAT IS NOT WHAT I AM SAYING. Check out

Christiane Northrup's book Women's Bodies, Women's Wisdom.

It scares me everytime I read on this list that someone is considering

surgery. Get in touch with yourself and ask for whome you are considering

haveing the surgery. Is it for you??? or for your husband? Jeeeeeesus,

that's your GENITALIA. How many men would have surgery on their penis in

hopesof relieving pain?? Two chances - fat and slim. I know I am harsh - I

am angry, but I think it's begining to settle into wisdom more than anger.

Good luck-

Catbird

>From: wdl@...

>Reply-To: VulvarDisordersonelist

>To: VulvarDisordersonelist

>Subject: introduction

>Date: 30 Oct 1999 13:31:47 -0000

>

>From: wdl@...

>

>Hi everyone!

>I am new to this list and I have been reading your notes

>for the last week. This year I have been diagnosed with

>vulva vestibulitis, but I have had the symptoms for the

>last 10 years. I finally found a competent OB/GYN who told

>me what it was and put me on a low oxalate diet with Calcium

>Citrate (6 pills a day). At first it did help a little, then

>I was back to my usual pain. She recommended another doctor

>and he prescribed a steroid cream. So far I have not seen any

>pos. results. I have been using it for the last month once a

>day. The doctor said that my last chance is to have a

>vestibuleefomy (surgery). I am very scared of this and was

>wondering if anybody has had this done.

>Before I was diagnosed with vv I went to many different

>doctors. I got all kinds of answers from " It's all in your

>head " (I went to 3 different psychologists) to " your vulva

>opening is too small and you need to have more sex to stretch

>it " . I had the area pain burned with some kind of acid, I used

>yeast creams and anti-depressants. So far nothing has helped.

>Even though I have a very supportive and patient husband, our

>marriage does suffer a lot from this.

>It basically burns when we have intercourse and there is

>really no logic to it. Sometimes it burns right when he enters,

>sometimes during, and sometimes when I get in contact with his

>semen. Condoms make it worse.

>It is really strange for me to share all of this with you but I

>really hope that I can find some way to get around the surgery.

>I am very frustrated and just can't understand that even today

>with all the advanced technology there is seemingly nothing to

>cure vv. I just know one thing: I am not willing to live with

>this for the rest of my life!! I really want to get rid of

>this!! -sorry, I just felt like I needed to vent after all

>these years.

>I would really appreciate any input, esp. about the surgery or

>any other helpful treatments.

>Love, Carola.

>

>>

[Guest guest]

>Test post...to see if I'm now banned from this group.

Why would you be banned?

--

Geoff Beneze

Tempe, AZ

BEAST Enterprises

Gunsmithing, target stands

http://www.beast-enterprises.com

NRA life Member

IDPA A00981

[Guest guest]

---Hi Kerry,

I see you are on the same stuff as my husband is now. Will be

interesting to see how it goes. His humalog is on a sliding scale.

Is yours?

3Madge

In diabetes@y..., " Kerry Thorne " <kthorne@m...> wrote:

> Kerry T

> Dx'd 3/3/98 -T2

> HbA1c 11/2/00= 14.8

> hbA1c 4/08/01=10.7

> HbA1c 6/07/01= 8.9

> 26 yrs old, soon to be 27

> Lantus & Humalog insulin, diet & exercise

> I started the Lantus In June so we are waiting to see what it does

to my HbA1c. So far it works really well. My 14 day average on my

meter is 173 compared to 240 a month ago. Today my BG didn’t go

above 200 all day. I was under 130 till after lunch. I only could

account for about 32 carbs. I ate a date square with my lunch, and

have no idea the carbs. I guessed at 25 but it was probably more

cause at 4pm I was 196. I was bummed! I have to test and take my

Lantus now so I'll let you know how it goes. Dr wants me to keep a

running record of everything I eat for the next 4 weeks till next Dr

appointment so we can find out what works and what doesn’t for

food. Apparently, date bars don’t work! Better stick with choc chip

cookies, 7 carbs each, (homemade).

>

> Kerry Thorne

> I always wanted to be a procrastinator,

> but I never got around to it! ☺

>

>

>

> Re: Introduction

>

> - good job!! I was diagnosed on 2/16 and have gone from 11.7

to 5.0.

> You are doing something RIGHT! Welcome to the list. I am also

a " newbie "

>

> E

> dx'd 2/16/01-T2

> hbA1c 2/16/01= 11.7

> hbA1c 4/20/01=6.7

> hbA1c 6/26/01= 5.0

> 44 yrs old,diet & exercise

>

>

>

>

> <<I am a new member of the list, diagnosed on 3/1/01

> with a fasting blood sugar of 303. The diagnosis was

> especially hard for me to cope with as I have an

> eating disorder, am 42 and single and live alone. At

> the time of diagnosis I was just a few months shy of

> finishing my Master's Degree, and about to embark on

> finding a new job, moving to a new state, and

> beginning a very stressful new career. To help with my

> natural obsessive tendencies, and to ease the already

> existing stress I was under, I have worked only on

> changes to my diet, testing first in the morning then

> later 2hrs after dinner, and was on 500mg Glucophage

> XR daily. Despite my believe that I was failing to

> control my diabetes, as my numbers fluctuate from the

> rare 120's, mostly 140's, and to the low 200's, I must

> have managed to do a good job as I found out yesterday

> my first HA1C was 5.5!!!!!!!!!!!

>

> So, there is hope for us all:)

>

> ->>

>

>

>

>

[Guest guest]

Welcome Ted,

Glad you found us, but sorry you've got to be here. Stick around and you

will find lots of useful information and advice. I tend to lurk more than

post. I'm sorry you aren't feeling that well right now.

Fridays are TGIF days where we post happy stuff, jokes, etc...

Take care,

Eileen s

PSC - 1996, UC - 1978

[Guest guest]

Glad to have you here, Ted, but, of course, we wish we could have met you under

different circumstances. Nevertheless, you will find support here for you in

many forms. Feel free to share you thoughts, gripe a little, vent if you have

to; its all ok. We've all been there and done that, so we understand. :=))

Janet from New Jersey

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>>> " Ted Peebles " 10/30/01 12:33PM >>>

Hi!

I'm so happy to have found this site. Thanks to B-N for bringing me

over from the j-pouch site. I've been lurking around for the past week or

so, and thought I'd take the opportunity to introduce myself:

My name is Ted Peebles, I'm 38 and live here in Richmond, VA with my wife

Aurora, daughter Marina (10 months) and forthcoming new kid (due in Feb.).

Aurora and I both teach Spanish at the University of Richmond. I was

diagnosed with UC in 1984, and just had a colectomy in May. I first heard

about PSC from a GI doc almost 10 years ago when I started having elevated

LFTs; but I wasn't diagnosed with PSC via ERCP until January of 1989. I

never had heavy-duty symptoms 'til the URQ pain and 104 degree fever with

chills that hit me around Sept. 4. of this year. After 10 days oral

antibiotics (I thought I had the flu), the fever and chills repeated, and I

suspected cholangitis --but what I really had was cholangitis AND sepsis.

I've had two ERCPs in the past month: the first to place one stent, and the

second to put in a bigger one. I've lost a lot of weight and feel fatigued

and don't have much apetite. On the plus side, however, I've yet to have

episodes of pruritis or jaundice (the itching is the thing about this

disease that scares me the most, for some reason).

I wish I had found out about you guys sooner; but now that I have, I'm glad

to see that there's folks out there who know what's going on and who share

vital support, tips, and critical information so readily. Thanks! --Ted

[Guest guest]

Welcome Ted. Folks, I didn't know his name over on

the other site, his panhandle was Redheadted...and

well, I guess I am just dense but didn't catch the Ted

at the end..I guess I thought it said Redheaded.

I am glad you decided to check us out. 1984 must have

been the year of the big brother...that is the year I

was diagnosed with UC as well. I am approaching 2

years with my jpouch...this December 14th.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

ted, it's wonderful to meet you (although it's a sad shame you have to be

here) and a pleasure read your introduction... about you, your lovely wife

and children. i know i don't have to tell you this, but just enjoy each day

with your family as the precious gift that it is, and know that we're here

for you whenever you have concerns or questions.

maureen

[Guest guest]

Welcome Shaunie

Fran

> My name is Shaunie, I'm from Florida.

[Guest guest]

Hi Becky, i was dianosed with metastatic prostate cancer, psa 1500 gleason score 9 going on 10, and prognosis of 6 to 9 months, that was over 3 years ago, so you can turn it around, at that time i was in a wheel chair and the pain was unbearable at times, so i started to do something about it, stopped all dairy products all processed foods all sugar and all meat reared for the table ie pork beef and lamb, started swimming counldn't swim one lenght then but i persevered and now swim quarter of a mile every day, medication are zoladex ,cassadex and zemeta my supplements include soya isoflavones and plenty of red wine, so go for it ,i did and i feel so fit now no pain and have that feel good feeling coming back all the best Old AlBecky Wagner wrote: Yeah my husband's oncologist told us

that he would start feeling better in about a month after the Lupron shot & Zomeda. His appetite is much better & energy level varies. He's off work now but debating about going back to keep his mind off things! Thanks for the support, Beckysam mcdaniel wrote: All about Steve. This is true, so there is hope! My friend Steve's father is 81 yrs old. He knew for 7 years that he had prostate cancer and chose to ignore it. In fact his family didnt even know he had the cancer. 2 months ago Steve convinced him to see the onocoligist. The bone scan showed mets in all his bones. He had a psa 1200 and was fading fast. They started total HT blockade and he is feeling much better. His first post HT psa came in at 83 and all the swelling along his

backbone and pelvis areas has gone. He swang a golf club the other day and looks forward to the game when the weather breaks. This was a man that was ready to die! No one knows if he will get 6 mos or 6 years more but the quality of life is improved so much his thoughts are away from death to golf. Steve knows I have Prostate Cancer and came to me with questions about the cancer and asked for advise. He was beside himself worrying about his dad. His dad thought it was the end and was in terrible pain, wouldnt take the pain meds and didnt want help. At his stage he was fortunate he had never had HT and the treatment is very responsive. He is now playing Golf a little and his life is 100% better. Treatments are advancing with this disease. The HT will help. There is hope. Good Luck and stay here for support. Becky Wagner

wrote: Hello-- My husband, Steve, was diagnosed about 1 month ago with metastatic prostate cancer and he's 45 years old! My name is Becky (30 years old) and we have 2 young children. This was a shock to everyone that knows Steve cuz he had no symptoms & worked out but didn't eat properly! I remember him telling me in the last 6 months that he's losing weight & doesn't understand why...but it wasn't noticeable to me & I told him you don't really eat 3 meals a day etc. Then he started getting bouts of nausea and then pain in his abdomen so he went to the doctor. The doctor gave him nausea pills & sent him for a CAT scan of his abdomen which came back with 2 lesions on his liver & a spot on his lung. The nurse had called us with these results on

Friday & she said the doctor wants to see him Monday first thing in the morning. He went to work early Monday morning & then came home to get me to go to the doctor & he looked terrible! He said the nausea is so bad & now the pain was in his back which was unbearable. We got to the doctor and she said that they want to do an MRI on his liver to see if those lesions are cancerous & see what the spot on his lung is. Steve told her how sick he was & couldn't deal with it anymore so she said if you are still feeling this bad we should admit you to the hospital. He agreed (so I knew he was in bad shape) & off we went to the hospital and he stayed there for 5 days. They ran every test imaginable on the poor guy. They said his PSA came back over 1000, his lesions were benign, the spot on his lung was a nodule formed by valley fever (fungus that grows in the desert & it's the

flu 100 times worse), then they did a bone scan and that's when our world turned upside down!! They said that they believe he has prostate cancer & it has spread to his bones (ribs, spine, pelvis, few spots on skull) but the only way to confirm this is to do a biopsy. When the doctor told us this news, I burst out crying...Steve was stunned because we thought he might have slipped a disc or some other illness but definitely not cancer! They started him on Casodex and said for his case that hormonal therapy would be the best option. They said the hormone therapy will prolong his life but it's no cure! He went for the biopsy and it came back with a gleason score of 9 which means Steve's cancer is very aggressive! The doctor said it's good Steve is overall healthy besides the valley fever/cancer but usually the younger you are the more aggressive the cancer is. He got his 1st shot of Lupron 2/24 and will get

one every 3 months and then on 3/3 he got an IV of Zomeda to strengthen his bones & he will get the Zomeda every 28 days. We also went to Mexico to the Hoxsey clinic for a natural way to fight this cancer...what do we have to lose! My aunt went there about 5 years ago when the medical doctors told her that there was no hope & she had 6 months to live...this was her 3rd time getting breast cancer, she couldn't get radiation anymore, and it had spread to her back and lymph nodes. She found this Mexico clinic, followed their healthy diet (no artificial colors, flavors, preservatives, no microwave, no caffeine, no chocolate, 2 days of beef, 2 days of chicken/turkey, 2 days of fish, wheat flour pasta, no sugar or salt--but can have sea salt), and drink their tonic. The tonic detoxifies your body & then builds up your immune system to fight the cancer...you eat 3 meals a day & have the tonic after each meal & then before bed eat a snack

& do the tonic. He's struggling with the diet cuz he was not eating healthy before & he is a very picky eater...I tell him everyday that everyone should follow this diet because it's a healthy way of eating! The kids & I are eating the same meals as him & have changed our eating habits too for the most part. This is Steve's story in a nutshell...I'm getting emotional just typing this! I am going thru so many ups & downs but trying to be really strong in front of him. I can't believe how one day your life is normal and then the big C comes & everything is in ruins. Has anyone else been in the same situation as Steve with such a high PSA & high gleason score? Any advice? Thanks for listening, Becky Have a nice Day! Yahoo! MailUse Photomail to share photos without annoying attachments.

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[Guest guest]

I've come back to this group (I've been a member on no-email status

for quite a while) because I feel like I'm reaching the end of my

coping ability. I was diagnosed with fibromyalgia in '91.

Thankfully, the pain subsided from that for much of my college years.

I've also been diagnosed with fibroids, endometriosis, and

osteoarthritis, sleep apnea, restless leg syndrome, peripheral

neuropathy, and diabetes.

My family practioner suspects I also

suffer from irritable bowel syndrome. From reasearching other

symptoms I'm exhibiting, it's quite likely that I also suffer from

chronic myofascial pain syndrome, chronic fatigue syndrome, and

sjogrens syndrome.

Over the past eight years, my health has been on a steady decline.

I'm in one of the worst fibro flares that I can remember. I was on

vacation last week (fall break. I'm a teacher), and I spent the

first three days of vacation in bed because I was sufferring from

such pain and fatigue.

Being a teacher has just become too much for me. The stresses of

dealing with teenagers all day and keeping up with the mounds of

paperwork the state requires of us is just impossible.

At the moment, I'm feeling both physically, mentally, and financially

at the end of my rope. I'm in search of a rheumatologist,

endocrinologist, gastroenterologist, pain clinic, and neurologist.

I'm already nearing the end of my sick leave for this school year. I

have mounds of medical bills, and the monthly costs of my

prescriptions are outrageous (even with insurance). Trying to keep

up with all my regular bills has become impossible because eating,

doctor's visits, and prescriptions take priority over all the other

basics.

Most mornings, I have to force myself out of bed and to work. I know

it'll be another day where I feel terrible and have a load of stress

with which to cope.

My fiance, bless him, is trying his best to help me deal with all

this emotionally (and he's not my only help. I see a therapist

biweekly, and a psychiatrist monthly.)

I've begun looking into the

prospect of filing for disability, but I know how long the wait

generally is for that to happen. I also know I cannot exist on what

my disability payment would be, and that bankruptcy wouldn't

alleviate much of my finacial stress.

I know that many of you are in and have been in similar situations,

so knew you'd understand the vent.

Well, I think i feel slightly better for getting all of that out of

my system.

Thanks in advance for the sympathetic ear (or eyes).

Joni

[Guest guest]

Joni wrote:

At the moment, I'm feeling both physically, mentally, and financially

at the end of my rope. I'm in search of a rheumatologist,

endocrinologist, gastroenterologist, pain clinic, and neurologist.

Joni,

I'm sorry that you're in so much distress, not only physically but emotionally

and financially as well. It all does seem to form one horrid package, doesn't

it?

The paragraph I snipped above struck a chord with me, and so I'm going to

throw in my two cents' worth. There's no question that you need to get to the

bottom of ALL that's ailing you, but may I suggest that you start off with

finding just one or two specialists at a time? It's time-consuming and

overwhelming enough to go to doctor appointment after doctor appointment when

you're just dealing with one issue (e.g., pain management). Trying to juggle so

many specialists at one time, in my opinion, might end up helping your stomach

problems, let's say, but exacerbating the fibro. Also, in my experience,

starting on too many different medications or other treatments can really muddy

the waters; if you have an adverse reaction, you can't tell whether it's from

the stomach medication or the pain medication or the physical therapy, etc.

I hope you have a good pcp who can coordinate all of your specialists and keep

a copy of all of your medical records in one place. I always ask my various

doctors to send copies of their reports to my pcp, because it's so hard for me

to remember everything sometimes.

I haven't been able to work in over a year, and I'm just starting to apply for

disability benefits now. I understand that it's a horrendous process, but I

intend to pursue it. Good luck with your claim.

And by all means, hang on to that wonderful fiance of yours. I just got

remarried this past May, and my new husband has been an absolute lifesaver.

Beyond driving me to doctor appointments and helping out around the house, just

having a big broad shoulder to cry on, and arms to wrap around me, makes me feel

better than any painkiller.

Hugs,

a

---------------------------------

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