New to the Group

[Guest guest]

> Also, have any of you experienced a pure lack of desire to have sex?

> I don't mean not wanting to because it will hurt, I mean just not

> wanting to. I guess I just want to know if this is normal.

Hi ,

Most people here are using Estrace or compounded estrogen. Both are

natural estrogen creams rather than the Premarin. You could ask your

doctor about either one to replace the Premarin.

Lack of interest in sex could just be the pain factor. If it doesn't

feel good then why do it??? ;-) OR, maybe you should have your

testosterone levels checked. That is another reason for low/no sex

drive and testosterone cream helps that PLUS it helps the vaginal skin

to build back up and not be so painful. It has to be checked (level I

mean) first though because too much testosterone can make you have

manly features like deep voice, facial hair etc.

Another thing that YOU can check is your clitoris. Does it feel numb?

Mine gets that way. When it has no feeling then I have no interest in

sex. The estrogen cream can be put there as well in small amounts.

Welcome aboard--sorry you're here! ;-)

Lynn

[Guest guest]

Hi

sorry you have to be here... I'm in a not too disimilar situation,

mostly pain on contact. I might just be throwing a red herring in here,

but I was wondering if you know what caused your prolapsed uterus? Im

just asking, because my sister suffered from intermittent vulva pain as

a child, from two onwards she'd wake screaming from her sleep, and

would have to be bathed and comforted. My mum took her to many

doctors,etc, and finally they found out that she had a prolapsed

uterus, and that was apparently what caused the pain. As soon as she

hit puberty, her incresed hormone levels " lifted " her uterus, and she

has not suffered from vulva pain since. I know this sounds really

weird, but I thought I'd tell you, on the off chance It might help.

About the whole sex thing, I wrote a bit of a rant to Mindy a

couple of days ago, (21587 or therabouts) so I wont bore everyone by

repeating myself, but I will say one thing, being anxious or despairing

about the whole condition is a major libido killer. I had a couple of

Dr's appointments that gave me some cause to hope, and BOY did my

libedo kick in the weekend after! The scary thing was I had'nt notised

it getting low- guess it just happened slowly. Anyway I hope things

continue to get better:0) and your pain free soon.

love,

Alison

> Hi all! My name is . I am 24 and live in Florida. I have

> recently been diagnosed with vulvodynia (through a process of

> elimination) though I have been suffering from it for well over a

> year. I have been treated for numerous infections (which I don't

> think I ever had) and was even suspected of having lichen sclerosis,

> which I don't. My only real sympton is extreme pain during

> intercourse. Of course, a visit to the doctor involving a speculum

> is no picnic either. It also doesn't help that I have a prolapsed

> uterus, meaning that my uterus is backwards and is repeatedly struck

> during intercourse. This is painful so much as uncomfortable, feels

> like I have a full bladder during sex.

> My husband is wonderful, but I can tell that this is starting to get

> to him. For the past year, he has been so supportive. I can see

> frustration building in him though. We've only been married since

> Feb. but lived together for over a year before our wedding and dated

> for a year prior to that. When we first started sleeping together,

> we had a wonderful sex life. No pain. No problems.

> I have recently started using Premarin cream at night (a pea-sized

> amount) and have noticed a lot of improvement. However, I have read

> horror stories about Premarin and it's effects (I know what it's made

> of). Does anyone use Premarin? If so, what has your experience been

> with it? I'm so happy to have found a medicine that helps, we even

> had a " mini " version of sex the other night. I can't withstand

> lengthy love-making yet, but I'm hoping I will be able to soon. I

> just don't want to be using a medicine that will eventually make the

> problems even worse.

[Guest guest]

>Hi > sorry you have to be here... I'm in a not too disimilar situation, >mostly pain on contact. I might just be throwing a red herring in here, >but I was wondering if you know what caused your prolapsed uterus?

According to my doctor and the research I have done on my own, there is no actual cause of a prolapsed uterus. Every woman is born with her uterus in a prolasped position, but it is supposed to shift as you grow/hit puberty. Some just never shift. It's actually a condition that about 20% of women have. Other than, in some cases, a little discomfort during intercourse, most women don't even notice it. It does not effect pregnancy in any way, though it can make the getting pregnant part a little more difficult. Haven't tried to conceive yet, but I suppose I'll find out one day if I can or not. If I can't, they can go in and surgically move my uterus into it's correct position. I'm hoping to avoid that though. I imagine it's pretty invasive. Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi everyone! My name is Liz and I'm a new member as

of yesterday. I have had vv for 4 years now. Last

night, after months of no sex, I went into a crying

fit. I am willing to suffer through the pain to have

that connection with my soon-to-be husband. However,

he now will not have sex b/c he doesn't like hurting

me. While I can appreciate his concern, I am so

scared that we will never have that connection again.

so! I got on the internet and found you all! So glad

something like this exists. Wish I found it 4 years

ago.

I've been going to therapy for a few months now, and

VV came up. My DR. says that she can try to hypnotize

me. I'm not a big believer in the whole hypnotism

thing, but at this point, I think I may give it a

shot. She realizes she'll never get rid of the pain,

but maybe help me deal with it or associate it with

pleasure? Anyone ever give this one a try?

Look forward to getting to know you all.

--- wrote:

> Hi -

>

> You said: My doctor thinks it is because I now

> associate sex with pain, so my libido has taken a

> nose-dive---.

>

>

> ----Take a moment and think about it. Pain gets

> registered to your brain, so if your brain is

> telling

> you that it hurts, why would you continue to harm

> yourself, so you stop. It's all a mental state of

> mind. This is not to lessen your issue (I know how

> you feel), it's just to give you an idea of what

> your

> doctor was meaning to say. Try some relaxation,

> meditation. Sometimes mind over matter really does

> work, maybe not 100% but it might help give you some

> comfort.

>

> Take care -

>

>

>

>

> --- lc_nigro@... wrote:

> > Hi there. I sent in a post a few hours ago, but

> it

> > hasn't appeared

> > so I am going to try again. If they both show up,

> I

> > apologize.

> > Anyway, my name is and I am 24 years old. I

> > have recently been

> > diagnosed with vulvodynia, though I have suffered

> > from it for well

> > over a year. I have been mis-diagnosed and

> treated

> > for infections so

> > many times. I was even a lichen sclerosis suspect

> > for a while, but

> > it turns out that I don't have that. My only real

> > sympton is extreme

> > pain during sexual intercourse. Although a visit

> to

> > the doctor

> > involving a speculum is no picnic either.

> > My husband has been so patient with me. I know

> he's

> > frustrated, but

> > he does his best to hide it from me. I'm sure

> that

> > many of you know

> > how it feels to put your spouse/significant other

> > through such

> > frustration. Though it is not my fault, I still

> > feel that it is me

> > depriving him of sex. He never makes me feel that

> I

> > am to blame, but

> > I still get depressed about it from time to time

> and

> > find myself

> > apologizing a lot for it.

> > I have recently started using Premarin cream at

> > night (pea-sized

> > amount) and have noticed a lot of improvement.

> Has

> > anyone else had

> > luck with this medicine? I've heard so many

> things

> > about it (none

> > good) that I am afraid it will end up making

> things

> > worse in the long

> > run even though it seems to help now. Any input

> > would be greatly

> > appreciated.

> > Also, have any of you experienced a pure lack of

> > desire to have sex?

> > I don't mean not wanting to because it will hurt,

> I

> > mean just not

> > wanting to. I guess I just want to know if this

> is

> > normal. My

> > doctor thinks it is because I now associate sex

> with

> > pain, so my

> > libido has taken a nose-dive. Now that I am on

> the

> > Premarin, we

> > managed to have a " mini " version of sex the other

> > night, though I had

> > to stop after a while. It was still better than

> the

> > 5 seconds it

> > normally takes before he sees that pained look on

> my

> > face and knows

> > that it is hurting me, so he immediately stops.

> > Even though things

> > are a lot better than they were, I still don't

> find

> > myself desiring

> > sex. Again, any advice would be more than

> welcome.

> > Thank you.

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi -

Well, I am here b/c I decided to pretend I didn't

have this for a while and did no research and stopped

seeing my doctor. One night, I freaked out and found

you all. so! My doctor is doing nothing at this

time. I plan on calling her soon to make an

appointment. I don't think I am in as severe pain as

many others here. She had given me clobetasol and

lotrisone in the past. I may go to a new doctor which

my therapist told me about today. Maybe they'll have

more info.

I also spoke with her more about the hypnosis thing.

She told me that she needs to learn more about all of

this before she can do anything. Apparently, she is

not going to change the associations, but see if there

is anything I can control. Anyone know of having such

control? She was really getting to me this morning,

asking if it's psychological. Still don't think I've

convinced her it's not. We'll see where that goes -

will tell me if I want to continue seeing her.

Hope all is well.

Liz

My question is, what is your doctor/gyn doing to help

you? There

are certainly other options before learning to, I

think you said,

associate pain with pleasure? Isn't there something a

little bit

weird about that? You don't deserve to have pain, and

you don't want

to associate it with pleasure... just my opinion.

Though I admit

that for all of us healing has to take place in the

mind as well as

the body. If you try the hypnosis, tell us all about

it.

[Guest guest]

Welcome Liz -

While it might have a psychological component to it (who wants to have sex if it is painful) and there is a certain degree of "even if it is not painful today, I will be in all likelihood in pain in the very near future" it is very hard to relax and enjoy.

The best advice I can give is to push your Doc for answers and not just for things that will help the pain go away, but rather to find the source of the problem as well.

Good Luck -

I am also a non 24/7 having pain in "flare-ups" Feel free to email (stragej@...) privately to discuss more options

[Guest guest]

In a message dated 11/6/2002 6:50:03 AM Eastern Standard Time,

suzanneeglinger@... writes:

> Any ideas on what is a high blood sugar level for before breakfast

> and before dinner?

>

Hi Suzanne,

Welcome to the group. You'll get lots of information, support, encouragement

and tips from this group.

This link is for the Joslin Diabetes Center. It shows what bg's should be

before and after meals and also fasting. It gives goals for both people with

diabetes and people without.

<A

HREF= " http://www.joslin.org/education/library/wbggoal.shtml " >http://www.joslin.o\

rg/education/library/wbggoal.shtml</A>

Eunice

[Guest guest]

Hello All,

My name is Joan, and I was recently diagnosed with fibro. At first,

for about a year, my rheumy thought my joint pain was the result of

Lupus. But all of my blood tests always came back normal and I never

had any inflammation in my joints. I do have discoid lupus and

because of the joint pain my rheumy treated the symptoms as it being

Lupus.

I was first put on plaquenil, celebrex and then ultram by my rheumy.

Then at my last follow up in December, I told her that celebrex was

not working any more and that I was now having muscle pain and

having trouble sleeping. So she stopped celebrex and ultram and put

me on amitriptyline (Elavil), but she didn't suggest possible fibro.

The burning pain started and got really bad and I knew I would not

get an appointment with my rheymy right away. So I called my primary

doctor, who I know I could always count on. She did a little poking

and podding, listened to what my complaints were and how bad I felt,

and sure enough my suspisions were confirmed, it is Fibro. I also

have asthma, high blood pressure, osteo and of course the old

menopause.

I am also experiencing dizziness and the migraine headaches are

back, and this started after I started amtriptyline. So my doctor

suggested that I stop for a week and see if these symptoms subside.

If they do, then it is the medication, if it continues then she will

probably have me get an MRI before trying a different medication.

Well that is it in a nutshell. Thanks for letting join the group.

Joan

[Guest guest]

>

>

> Hello All,

>

> My name is Joan, and I was recently diagnosed with fibro.

Joan~

First of all, WELCOME! You are in a very large group of folks who

really do understand what you've been through. I'm sorry that you

have to be here, though.

Secondly, a lot of doctors still do not recognize fibromyalgia

and/or Chronic Fatigue Syndrome as a real problem. Because there,

as of yet, is no test to run to say, " AHA! That is what is causing

this patient's symptoms! " , many " professionals " refuse to pay

attention to the increasing number of sufferers; i.e., if it cannot

be verified by a test and neatly categorized, then it doesn't

exist. Many fibro/CFS sufferers still go undiagnosed/untreated --

or, perhaps as bad if not worse - mis-diagnosed/treated -- because

of this bullheadedness.

As it is, since there currently is no way to pinpoint the cause,

there is no cure. All that can be done is to try to treat

individual symptoms -- pain, swelling, aches, depression,

sleelessness, etc. The problem here is that it means you end up

taking numerous EXPENSIVE meds and/or costly treatments, and they

often are ineffective. Personally, I have a host of serious health

issues in addition to fibro & CFS: Among them, Type II diabetes

(using an insulin pump, which is VERY unusual for a Type II);

thyroid probs; major depression; high cholesterol & blood pressure;

I am both agoraphobic and xenophobic; and I have arthritis in my

lower back and several other things -- and am forced to take about

17 meds per day. I still have yet to find a painkiller that truly

works for me; the bloody doctors REFUSE to give me anything that

even sounds like a narcotic or derivative. I also have had a

terrible time getting a PCM to help me fight the red tape with these

issues -- but I finally have an appointment this week, I believe, to

establish one at long last.

So, people such as us form support groups like this one to vent, to

discuss new treatments, to talk about what works and what doesn't --

and we all pray for SOME sort of relief. We all have or currently

are undergoing the same types of issues, and places such as these

are currently one of the very few resources for support available.

And so we cling to one another in the hopes that someone has an

answer to the pain, the weakness, the fatigue, the exhaustion, the

sleeplessness, the depression -- and being made to feel outcast by

friends and families who don't think that we " are " sick because we

don't " look " sick. I have news for them -- there IS something

wrong; something VERY wrong, whether it has a cutesy-neat little

important-sounding name attached or not.

Anyway, please let us know what you need -- because that is why

we're all here!

*hugs*

~Eri, list moderator