Re: Another newbie: with questions??

[Guest guest]

Rene~

My advice is take it one step at a time. I am so sorry to hear about

everything, and of course am sorry that you have to belong to this group.

At the same time, everyone has a different outlook on everything, and there

are people here that I think will help you. I think that getting the Q-tip

test was the 1st thing to do, but you should go one more step next time.

Make sure you are seeing a Vulvar Specialist, and I did the UTI diet for 14

days strict, so I know what you are talking about with that diet. Just

follow it, and you will see if it helps you. If not, then you can eat

whatever you would like to, right.

If you have any further questions, just ask.

I just wanted to say hello!

~Mindy~

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[Guest guest]

Hi Rene,

Welcome to the group, and I am sorry you have to be hear. I will keep you

in my prayers. Dont give up hope, and remember that sometimes our faith is

all that we have.

It sounds to me as if you are being given pretty standard treatments. The

estrace cream is a wonderful drug. It has definatly helped me. I am also

using a vaginal estring. This is a little vaginal ring that secreates

estrogen at a controled rate over a period of three months. I cant even

tell its in there.

We have a physical therapist, Tom who is on the list. He is a good one to

ask about pelvic floor issues if you have any questions.

Bunny

----Original Message Follows----

From: rdavis@...

Hi,

I'm Rene and 39 years old. My story is had a abdominal

hysterectomy in Oct 2000, which started all this nightmare for me. I

did keep my right ovary. I had severe bladder pain post-op and tried

several rounds of antibiotic's before I said enough now, lets find

the problem. I was diagnosed with Interstitial Cystitis aka IC at 6

weeks post-op from hyst. I'm on Elmiron and doing well with it. But a

burning started in Feb 2001 in my urethral area and today I was

diagnosed with Vulvodynia, by a Q-Tip test. It was painful on each

side of my urethra. No pain in the vaginal area though. He started me

on Fluocinolone Acetonide and in 2 weeks I start using Estrace and

Lodocaine as needed. The next step will be therapy as I have pelvic

floor dysfunction as well. I'm wondering is this the standard

treatment? Also told me to watch my diet, have a paper telling which

foods are a no no. Well seeing how I'm also on a IC diet doesn't

leave a lot to eat. What hints can you all give me? I'm scared and so

angry that I had a hysterectomy to improve my life and have came out

with 2 un-curable diseases. We have a pool and chlorine is a no for

me. We are changing over to Bacquacil, please tell me I will be able

to swim then? I don't take baths as hot water hurts me, no hot tubs

which I dislike not being able to do. Is there life with IC and

Vulvodynia? I'm so down and scared for the future. Thanks anyone who

responds.I do have faith in Jesus, which is the only way I have made

it through with IC.Any advice will help.

Rene

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[Guest guest]

Rene,

I know this isn't what you asked about but just for your info. Dr. Vliet

says in her book (yes I have been going over this book thoroughly) that one

study showed that " ...25% of women will have loss of ovarian function within

three months of having a hysterectomy even though only the uterus is

removed. He also found that by three years after removal of the uterus,

about 60 percent of women will have menoausal levels of ovarian hormones and

show a marked decline in estradiol. "

Dr. Vliet also says

" Many women today have had a hysterectomy in their early to mid-thirties,

and even though they still have their ovaries, may have markedly low

estradiol and testosterone levels within two or three years of their

surgery. This means they begin suffering from the many problems associated

with loss of these key metabolic hormones: worsening PMS, severe fatigue,

weight gain, headaches, muscle and joint pain, fibromyalgia, disturbed

sleep, memory and concentration problems, loss of libido, incontinence,

vulvodynia/interstitial cystitis, and many others. "

My mother had a hysterectomy in her 30s. Because she left her ovaries she

thought everthing was hunky dory. Until she had a broke leg in her 50s and

found out she was suffering from ostoporosis from all the years of no

hormones.

Here is a reference for the book

Screaming to be Heard (Hormone Connections Women Suspect and Doctors Still

Ignore)

by Lee Vliet, M.D.

ISBN 0-87131-914-4

Marilyn A.

Another newbie: with questions??

> Hi,

> I'm Rene and 39 years old. My story is had a abdominal

> hysterectomy in Oct 2000, which started all this nightmare for me. I

> did keep my right ovary. I had severe bladder pain post-op and tried

> several rounds of antibiotic's before I said enough now, lets find

> the problem. I was diagnosed with Interstitial Cystitis aka IC at 6

> weeks post-op from hyst. I'm on Elmiron and doing well with it. But a

> burning started in Feb 2001 in my urethral area and today I was

> diagnosed with Vulvodynia, by a Q-Tip test. It was painful on each

> side of my urethra. No pain in the vaginal area though. He started me

> on Fluocinolone Acetonide and in 2 weeks I start using Estrace and

> Lodocaine as needed. The next step will be therapy as I have pelvic

> floor dysfunction as well. I'm wondering is this the standard

> treatment? Also told me to watch my diet, have a paper telling which

> foods are a no no. Well seeing how I'm also on a IC diet doesn't

> leave a lot to eat. What hints can you all give me? I'm scared and so

> angry that I had a hysterectomy to improve my life and have came out

> with 2 un-curable diseases. We have a pool and chlorine is a no for

> me. We are changing over to Bacquacil, please tell me I will be able

> to swim then? I don't take baths as hot water hurts me, no hot tubs

> which I dislike not being able to do. Is there life with IC and

> Vulvodynia? I'm so down and scared for the future. Thanks anyone who

> responds.I do have faith in Jesus, which is the only way I have made

> it through with IC.Any advice will help.

> Rene

>

>

>

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[Guest guest]

Thanks Mindy,

What other way can you get diagnosed? My uro/gyno is

known for his work with vulvar issues and IC. My IC is not curable

and the diet is a must for me. It is a very restricted diet also. I

just wondered if the Vulvodynia really helped? I can only eat

blueberries and pears out of the IC diet and now will have to forgo

the blueberries :~( I can only drink Evian water and that is it.

What have you found to work for you? Thanks for answering me

Sincerely, Rene

[Guest guest]

Hi ,

I too will be starting Estrace in 2 weeks for some

reason he has me on the steroid cream for a short term before using

the Estrace. This is such a sad disease and I do worry over my

marriage a bit. Ic on top of Vulvodynia can make life miserable. Dies

diet really help you? Can you swim, hot tubs? I miss my hot baths so

much. Best of Luck to you . I only have my faith in God to

get me through and for him to give the doc's knowledge to help me.

Regards, Rene

[Guest guest]

Hi Marilyn,

That book is so true. I have researched and found that

to be right on about ovarian failure. My research comes a little late

for me. I now have 2 incurable diseases and wonder how this is all

related to my hyst. My uro/gyno ( he did not do the hyst ) says he

believes, at least in my case that there was nerve damage. I never

had a bladder nor vulvar symptom prior to hyst, so it feeds into his

theory. He does say just my own theory, no reserach to back him yet.

I have also found that I stand a good chance of losing my ovary I

kept. I will move forward and believe it will get better. I now stand

strongly against hyst unless it is a last resort or cancer. I had no

choice in mine as I had blood vessels attached to my uterus that were

going to rupture into my abdominal area. I had endo and adhesions,

this was my fourth surgery on my uterus. My uterus had adhered to my

bladder, it was a mess. Regret is not good for anyone I guess.

Regards, Rene

[Guest guest]

Rene,

Diet has never done anything for my vestibulitis. I have IBS and I

definatly know that diet helps that (if I can stick to it), but no matter

what I eat I have simalar symptoms. I have problems with clorine pools, and

I just avoid swimming altogether. I do just fine in hot tubs as long as I

do not put anything like bubble bath in there. A hottub with salt on the

other hand is awsome. I take salt baths twice a day right now anyways as

part of my recovory from surgery. A salt bath in a hottub with the air jets

to help clean things out is even better. I dont have any problem with hot

baths either. Hot water actually makes if feel better for me, but then I do

not have any muscle issues either.

Bunny

----Original Message Follows----

From: rdavis@...

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Re: Another newbie: with questions??

Date: Sat, 14 Jul 2001 01:50:32 -0000

Hi ,

I too will be starting Estrace in 2 weeks for some

reason he has me on the steroid cream for a short term before using

the Estrace. This is such a sad disease and I do worry over my

marriage a bit. Ic on top of Vulvodynia can make life miserable. Dies

diet really help you? Can you swim, hot tubs? I miss my hot baths so

much. Best of Luck to you . I only have my faith in God to

get me through and for him to give the doc's knowledge to help me.

Regards, Rene

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[Guest guest]

Rene,

Have you had your hormone levels checked.? Dr. Vliet has seen improvement

and in some cases cure for vulvodynia and IC with hormone supplements. Some

women also need topical hormones as well. Her book outlines what those

levels should be at a minimum and how you should use the way you feel to

fine tune the supplements you should take.

Have you already looked down this road?

Marilyn A.

Re: Another newbie: with questions??

> Hi Marilyn,

> That book is so true. I have researched and found that

> to be right on about ovarian failure. My research comes a little late

> for me. I now have 2 incurable diseases and wonder how this is all

> related to my hyst. My uro/gyno ( he did not do the hyst ) says he

> believes, at least in my case that there was nerve damage. I never

> had a bladder nor vulvar symptom prior to hyst, so it feeds into his

> theory. He does say just my own theory, no reserach to back him yet.

> I have also found that I stand a good chance of losing my ovary I

> kept. I will move forward and believe it will get better. I now stand

> strongly against hyst unless it is a last resort or cancer. I had no

> choice in mine as I had blood vessels attached to my uterus that were

> going to rupture into my abdominal area. I had endo and adhesions,

> this was my fourth surgery on my uterus. My uterus had adhered to my

> bladder, it was a mess. Regret is not good for anyone I guess.

> Regards, Rene

>

>

>

> *****END OF MESSAGE*****

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>

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[Guest guest]

--- That seem to be a touchy subject with all my doc's. They always

ask if I'm haviing hot flashes, which I'm not but isn't there other

sign your hormones are not up to par? Where did you find this book?

I've looked at stores here with no success. Isn't it just a blood

test to check my hormones? I have so much to learn as I always just

trusted my doctors. Thanks Marilyn.

Rene

[Guest guest]

Rene,

You should be able to order the book from any book store. Just give them

the ISBN number. It is $29. You might also find it in your library. I did

and read it before I bought it. I decided it had so much info I wanted to

have a copy myself.

I just had my dr. order tests of my hormone levels. I got the Hot flashes

question to. But he is a good sort and ordered them for me anyway. You

should have them checked even in the absence of symtoms, because you may not

have any other symptoms but still not have enough hormones to protect your

bones.

I am having my estradiol tested on day one and about day 20. I have had the

first one done but do not have results back yet. I had my testosterone

tested at the same time. Also will have my progesterone tested at day 20

since the ratio between the estradiol and progesterone is important at that

time in your cycle.

If you are still cycling even without your uterus, Dr. Vliet says that her

patients can usually tell her about where they are in their cycle due to how

they feel. She says " They tell me they have brast tenderness, bloating,

food cravings, constipation, and other markers, just like they used to the

week before their menses began. Or they will describe a few days of

restless, fragmented sleep, emotional changes, crying easily, loss of

energy, feeling mentally " foggy, " or having anxiety attacks and palpitations

like they did the first few days of bleeding (when estradiol is at its

lowest point of the cycle). "

She suggests the following levels at a minimum:

Total Serum Testosterone should be 40-60 ng/dl.

Free should be about 1-2 percent of the total.

A slight drop of only 10-15 ng/dl can make an enormous difference in whether

a woman

will feel her usual sexual spark.

Estrogen

Day 1-3 serum estradiol should be at least 90 - 100 pg/dl

serum progesterone should be about 0.3-0.9 ng/ml

Day 19-20 estradiol to progesterone ratio

estradiol should be about 200 pg/ml or so.

" I find that women we see have worsening premenstrual symptoms when luteal

phase

estradiol levels fall below about 160-170 pg/ml "

Normal progesterone level is about 15-30 ng/ml

Again I got this info from:

Screaming to be Heard by Lee Vliet, M.D.,

2001, ISBN 0-87131-914-4

Hope this gives you the info you need to talk to your doctor again. But you

would probably feel much better if you read the book yourself. Good luck.

Marilyn A.

Re: Another newbie: with questions??

> --- That seem to be a touchy subject with all my doc's. They always

> ask if I'm haviing hot flashes, which I'm not but isn't there other

> sign your hormones are not up to par? Where did you find this book?

> I've looked at stores here with no success. Isn't it just a blood

> test to check my hormones? I have so much to learn as I always just

> trusted my doctors. Thanks Marilyn.

>

> Rene

>

>

>

> *****END OF MESSAGE*****

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

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****

[Guest guest]

Rene,

I was in a hurry when I last responded to you and overnight I remembered

some stuff I should have said.

To begin with you would not need to have your progesterone levels checked.

Also you would not need to suppliment this since you do not have a uterus.

Also due to your surgery you should get your FSH levels done.

'FSH rises above 10-15 when the brain senses a decline in ovarian hormones,

and levels of FSH greater than

20 are defined as menopausal. Levels should drop back below 35 with proper

hormone replacement therapy.'

Yes the hormone tests are just a blood test. I don't know what they cost

yet. Will let you know when I know. Dr. Vliet says to be sure you do the

blood test not the saliva test. She does not think the saliva test gives

results that can be coorelated to symptoms. Also in terms of symptoms of

menopause you have two biggies IC and vulvodynia. This along with your

surgery should be plenty reason to have the levels done.

Also you should have your bone density levels checked. But I would waite

until you have the blood tests approved first.

Dr. Vliet recommends the following for bone density levels:

DEXA test of hip and spine - checks health of your bones

and N-telopeptide (NTx) urine or serum test (new)

(do not use the pyrilinks test -not as good)

NTx greater than 35 indicates that the body is braking down bone faster than

it is making new bone. In the

urine test use the 2nd morning void urine specimen (not a random specimen)

Here is how you interpret the bone density test.

Bone Mineral Density (BMD) T-Score*

Normal less than -1

Osteopenia -1.0 to -2.0

Osteoporosis greater than -2.0

Severe Osteoporosis greater than -2.0 and presence of fragility

fractures

*the minus is in relation to young adult peak bone mass.

She recommend a DEXA by age 35 to 40.

That's all for now.

For those new to this discussion I got this info from

Screaming to be Heard (Hormone Connections Women Suspect and Doctors Still

Ignore)

by Lee Vliet, M.D.

ISBN 0-87131-914-4

Marilyn A.

Re: Another newbie: with questions??

> --- That seem to be a touchy subject with all my doc's. They always

> ask if I'm haviing hot flashes, which I'm not but isn't there other

> sign your hormones are not up to par? Where did you find this book?

> I've looked at stores here with no success. Isn't it just a blood

> test to check my hormones? I have so much to learn as I always just

> trusted my doctors. Thanks Marilyn.

>

> Rene

>

>

>

> *****END OF MESSAGE*****

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

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****