Re: Kristy

[Guest guest]

Hi Kristy:

Did you have a labioplasty?

Sherri

-------------- Original message ----------------------

> if the cause of a woman's vulvodynia was caused

> by a surgical procedure such as like was the case with me:

> having surgery to my left labia minora to remove excess skin?

>

> >

>

>

> __________________________________________________

>

[Guest guest]

Sherri,

Yes, I did have a labioplasty (that's what it was labeled as I

guess b/c that's the only diagnosis that seemed to fit, lol).

My Pain Management dr explained to me that it was also possible

that the retractors that they may have used in the surgery to

hold the area so the dr could cut could also have added to the

problem.

Makes some sense at least in part when it comes to my situation

with vulvodynia b/c of the nerves involved as far as damage.

Kristy

__________________________________________________

[Guest guest]

Hi Kristy:

I have some others questions. My daughter wants to have this surgery and actually the questions are hers. She wants to know what were your reasons for getting the labioplasty and did you have vvs before the surgery?

Her friend had one last year and she has been bothering me to have it done also. She already has vvs and her doctor doesn't think it is a good idea because it could set off the nerve ending worse. Any thoughts? She is 16.

Thanks.

Sherri

-------------- Original message -------------- > Sherri, > > Yes, I did have a labioplasty (that's what it was labeled as I > guess b/c that's the only diagnosis that seemed to fit, lol). > > My Pain Management dr explained to me that it was also possible > that the retractors that they may have used in the surgery to > hold the area so the dr could cut could also have added to the > problem. > > Makes some sense at least in part when it comes to my situation > with vulvodynia b/c of the nerves involved as far as damage. > > Kristy > > > > > > > __________________________________________________ >

[Guest guest]

OH My goodness Sherri......

Please talk her out of that surgery especially if she's only 16 *sigh* "I" think her doctor is right! *sigh* My opinion of course, but surgery should be the very last thing to think of until she's tried everything possible before that and at her age she can't have. Besides I'd think you as 'mom' would have to sign a paper first wouldn't you? I would hope so.Dee~

..

[Guest guest]

Sherri,

My vulvodynia started after the surgery. I did have vulvar

vestibulitis for a time but not the kind that becomes the

syndrome. The vulvar vestibulitis I had was taken care of by an

antibiotic that I was taking for a urinary tract infection at

the time.

Now I am just left with the vulvodynia. And I have at least 2

nerves that were damaged by that labioplasty. The reason I had

it done was b/c I was having to deal with excess skin to the

left labia minora. My mom was concerned that the skin might rip

itself all the way off.

Also, the reason that I know it's the labioplasty that did this,

especially now, is b/c my vulvar problems are on the left. Yep,

the same area where I had the surgery done.

If your daughter is having problems with her labia minora as far

as excess skin I would encourage you to have her checked for a

condition called PCOS (Polycystic Ovarian Syndrome). One of the

symptoms that can occur with this is an enlarged labia. I think

that may have been what happened to me. I discovered this

possibility after one of the ladies that was on a PCOS list with

me at the time said that she went to a dr to check her PCOS in

more depth and the dr asked about her labia minora.

If your daughter wants to have this done just b/c she doesn't

like the size of it I would wait til she's older. I had to get

special approval from the insurance company at the time b/c

labioplasty is considered a cosmetic procedure.

The dr that did my procedure was a urologist. I wish he would

have told me more about the complications. I should have had my

gyn or a Plastic surgeon do it. My mom was with me and she

didn't hear anything about complications either.

If this procedure is done right such as by a gyn or a Plastic

Surgeon (the one who seems to do this the most from what I've

heard) the damage to the nerves is minimal. If your dr is

seeing a gyn for her vulvar issues I would ask the dr what they

think about her having this surgery as well b/c it is very

possible that it may make her vulvar issues worse.

What caused her vulvar issues to begin with?

Pls let me know if you have other questions.

__________________________________________________

[Guest guest]

Hi Dee:

I don't want her to have it now. She has enough health issues already. But, I can see why she wants it. She has a very long labia that kind of looks like a little ball hanging at the end. She said it bothers her in pants. For now I have avoided making any kind of consultation for her.

Her friend had it done last summer with no problems so that it what she is basing her decision that she would be fine on. Her friends doesn't have any other health issues.

She is having four impacted wisdom teeth out next week and I have to get through that.

Sherri

-------------- Original message --------------

OH My goodness Sherri......

Please talk her out of that surgery especially if she's only 16 *sigh* "I" think her doctor is right! *sigh* My opinion of course, but surgery should be the very last thing to think of until she's tried everything possible before that and at her age she can't have. Besides I'd think you as 'mom' would have to sign a paper first wouldn't you? I would hope so.Dee~

..

[Guest guest]

Hi Dee:

I don't want her to have it now. She has enough health issues already. But, I can see why she wants it. She has a very long labia that kind of looks like a little ball hanging at the end. She said it bothers her in pants. For now I have avoided making any kind of consultation for her.

Her friend had it done last summer with no problems so that it what she is basing her decision that she would be fine on. Her friends doesn't have any other health issues.

She is having four impacted wisdom teeth out next week and I have to get through that.

Sherri

-------------- Original message --------------

OH My goodness Sherri......

Please talk her out of that surgery especially if she's only 16 *sigh* "I" think her doctor is right! *sigh* My opinion of course, but surgery should be the very last thing to think of until she's tried everything possible before that and at her age she can't have. Besides I'd think you as 'mom' would have to sign a paper first wouldn't you? I would hope so.Dee~

..

[Guest guest]

Hi Dee:

I don't want her to have it now. She has enough health issues already. But, I can see why she wants it. She has a very long labia that kind of looks like a little ball hanging at the end. She said it bothers her in pants. For now I have avoided making any kind of consultation for her.

Her friend had it done last summer with no problems so that it what she is basing her decision that she would be fine on. Her friends doesn't have any other health issues.

She is having four impacted wisdom teeth out next week and I have to get through that.

Sherri

-------------- Original message --------------

OH My goodness Sherri......

Please talk her out of that surgery especially if she's only 16 *sigh* "I" think her doctor is right! *sigh* My opinion of course, but surgery should be the very last thing to think of until she's tried everything possible before that and at her age she can't have. Besides I'd think you as 'mom' would have to sign a paper first wouldn't you? I would hope so.Dee~

..

[Guest guest]

Kristy:

I just wrote you a long letter and erased it by mistake. I am running out so I will retype it later, I have no idea how to retrieve it once it's gone.

Sherri

> Sherri, > > My vulvodynia started after the surgery. I did have vulvar > vestibulitis for a time but not the kind that becomes the > syndrome. The vulvar vestibulitis I had was taken care of by an > antibiotic that I was taking for a urinary tract infection at > the time. > > Now I am just left with the vulvodynia. And I have at least 2 > nerves that were damaged by that labioplasty. The reason I had > it done was b/c I was having to deal with excess skin to the > left labia minora. My mom was concerned that the skin might rip > itself all the way off. > > Also, the reason that I know it's the labioplasty that did this, > especially now, is b/c my vulvar problems are on the left. Yep, > the same area where I had the surgery done. > > If your daughter is having problems with her labia minor

a as far > as excess skin I would encourage you to have her checked for a > condition called PCOS (Polycystic Ovarian Syndrome). One of the > symptoms that can occur with this is an enlarged labia. I think > that may have been what happened to me. I discovered this > possibility after one of the ladies that was on a PCOS list with > me at the time said that she went to a dr to check her PCOS in > more depth and the dr asked about her labia minora. > > If your daughter wants to have this done just b/c she doesn't > like the size of it I would wait til she's older. I had to get > special approval from the insurance company at the time b/c > labioplasty is considered a cosmetic procedure. > > The dr that did my procedure was a urologist. I wish he would > have told me more about the complications. I should have had my > gyn or a Plastic surgeon do it. My mom was with me and she > didn't hear anything about complications either. > > If this procedure is done right such as by a gyn or a Plastic > Surgeon (the one who seems to do this the most from what I've > heard) the damage to the nerves is minimal. If your dr is > seeing a gyn for her vulvar issues I would ask the dr what they > think about her having this surgery as well b/c it is very > possible that it may make her vulvar issues worse. > > What caused her vulvar issues to begin with? > > Pls let me know if you have other questions. > > > > > > > __________________________________________________ >

[Guest guest]

Kristy:

I just wrote you a long letter and erased it by mistake. I am running out so I will retype it later, I have no idea how to retrieve it once it's gone.

Sherri

> Sherri, > > My vulvodynia started after the surgery. I did have vulvar > vestibulitis for a time but not the kind that becomes the > syndrome. The vulvar vestibulitis I had was taken care of by an > antibiotic that I was taking for a urinary tract infection at > the time. > > Now I am just left with the vulvodynia. And I have at least 2 > nerves that were damaged by that labioplasty. The reason I had > it done was b/c I was having to deal with excess skin to the > left labia minora. My mom was concerned that the skin might rip > itself all the way off. > > Also, the reason that I know it's the labioplasty that did this, > especially now, is b/c my vulvar problems are on the left. Yep, > the same area where I had the surgery done. > > If your daughter is having problems with her labia minor

a as far > as excess skin I would encourage you to have her checked for a > condition called PCOS (Polycystic Ovarian Syndrome). One of the > symptoms that can occur with this is an enlarged labia. I think > that may have been what happened to me. I discovered this > possibility after one of the ladies that was on a PCOS list with > me at the time said that she went to a dr to check her PCOS in > more depth and the dr asked about her labia minora. > > If your daughter wants to have this done just b/c she doesn't > like the size of it I would wait til she's older. I had to get > special approval from the insurance company at the time b/c > labioplasty is considered a cosmetic procedure. > > The dr that did my procedure was a urologist. I wish he would > have told me more about the complications. I should have had my > gyn or a Plastic surgeon do it. My mom was with me and she > didn't hear anything about complications either. > > If this procedure is done right such as by a gyn or a Plastic > Surgeon (the one who seems to do this the most from what I've > heard) the damage to the nerves is minimal. If your dr is > seeing a gyn for her vulvar issues I would ask the dr what they > think about her having this surgery as well b/c it is very > possible that it may make her vulvar issues worse. > > What caused her vulvar issues to begin with? > > Pls let me know if you have other questions. > > > > > > > __________________________________________________ >

[Guest guest]

Hi Kristy:

Let's try answering this again, last time I erased it trying to snip. So forgive me for not snipping this one. I am on a laptop and haven't gotten the hang of it yet.

Thanks for the information. I am going to have my daughter read it. She has pain on contact at the opening of her vagina. She also has burning only when she gets her period. She has Crohn's Disease. Her inflammation from Crohn's starts at her rectum with ulcers up through her decending colon. The rest of her colon, intestines and ileum are all also inflammed but without the ulcers. I was hoping that once her Crohn's inflammation got under control her vvs symptoms would subside. She has been on treatment for Crohn's since September, but still burns when she gets her period.

Her friend had a labioplasty last year with no problems. My daughter has a long labia with a little ball at the end. It is usually to say the least. She says it bothers her in pants, but I also think she is embarrassed by it.

Thanks for the PCOS thought, I will check into it. She has to go back to the doctor in August. The gyno doesn't think the surgery is a good idea for her at this time because of her already having vvs. She gave her Atropine/Estradiol to use, but she doesn't ever use it.

Sherri

-------------- Original message -------------- > Sherri, > > My vulvodynia started after the surgery. I did have vulvar > vestibulitis for a time but not the kind that becomes the > syndrome. The vulvar vestibulitis I had was taken care of by an > antibiotic that I was taking for a urinary tract infection at > the time. > > Now I am just left with the vulvodynia. And I have at least 2 > nerves that were damaged by that labioplasty. The reason I had > it done was b/c I was having to deal with excess skin to the > left labia minora. My mom was concerned that the skin might rip > itself all the way off. > > Also, the reason that I know it's the labioplasty that did this, > especially now, is b/c my vulvar problems are on the left. Ye

p, > the same area where I had the surgery done. > > If your daughter is having problems with her labia minora as far > as excess skin I would encourage you to have her checked for a > condition called PCOS (Polycystic Ovarian Syndrome). One of the > symptoms that can occur with this is an enlarged labia. I think > that may have been what happened to me. I discovered this > possibility after one of the ladies that was on a PCOS list with > me at the time said that she went to a dr to check her PCOS in > more depth and the dr asked about her labia minora. > > If your daughter wants to have this done just b/c she doesn't > like the size of it I would wait til she's older. I had to get > special approval from the insurance company at the time b/c > labioplasty is considered a cosmetic procedure. > > The dr that did my procedure was a urologist. I wish he would &gt

; have told me more about the complications. I should have had my > gyn or a Plastic surgeon do it. My mom was with me and she > didn't hear anything about complications either. > > If this procedure is done right such as by a gyn or a Plastic > Surgeon (the one who seems to do this the most from what I've > heard) the damage to the nerves is minimal. If your dr is > seeing a gyn for her vulvar issues I would ask the dr what they > think about her having this surgery as well b/c it is very > possible that it may make her vulvar issues worse. > > What caused her vulvar issues to begin with? > > Pls let me know if you have other questions. > > > > > > > __________________________________________________ >

[Guest guest]

Sherri,

If your daughter also has PCOS then treating it may help deal

with that extra skin. Is it on the left labia minora or the

right? Mine and that of the lady I told you about is on the

left. Several other ladies I've met that has this is also on

the left. I don't know what it is about the left side but

that's what keeps coming up when I get e-mails from ladies that

have this and are wanting to know about labioplasty. There

isn't much information out there for ladies that have had this

problem or are considering labioplasty so they end up finding me

thru searches. Which I don't mind.

May I ask what your daughter's periods are like? Period

problems if she has them can be part of PCOS and can also be

part of endometriosis.

The fact that your daughter has inflammation even without the

ulcers that go with Crohn's tells me that she may also have

endometriosis. If she has one or both of these things it may

explain in part the problems with her vulvar area. I've met a

number of women that have vulvodynia in addition to the endo.

I've also met other women besides myself that have all 3: endo,

PCOS, vulvodynia.

And yes, it is an embarrassing thing to have excess skin. And

now that I think about it I think my excess skin may have had a

ball type end to it too.

I also used to hide the excess skin in the other part of my area

so it wouldn't irritate me.

Pls have her checked for PCOS and endo. She is not too young to

have endo.

I hope she doesn't have either one but the endo especially makes

sense b/c of the inflammation factor. And yes it can bother the

intestines.

Pls let me know if you have other questions.

Kristy

__________________________________________________

[Guest guest]

Hi Kristy:

Can you send me the endo link? Thanks.

Sherri

I can give you a link that gives even more info if you > want to check it out. > > Endo > > > __________________________________________________ >

[Guest guest]

Sherri,

Go to: http://www.endocenter.org

This site is for the Endometriosis Research Center

Kristy

__________________________________________________

[Guest guest]

Kristy,

It's so easy to say " Have the dr. check your

hormones " or " Get this test or go to this dr. From my

experiance when I push they either treat me badly, I

think to get me to leave so they dont have to deal

with me or they continue to say " I dont need that " I

brought up having a Laporoscopy to my OBGYN at the UOM

mind you she's the Professor and Ive been seeing her

for 6 years now and she's the one who told me it didnt

matter if I had endo. or adhesions. I also have 2

o.b's I see with out the others knowing, and not them,

not my family care dr. would do my blood work to test

my hormones. They all said " Well of course your low

you had a hystorectomy " Oh yeah this was another one

theres no proof that women should be on T. I had

brought in all the copies I copied from other members

from the support group and they just poo pooed me. It

wasnt untill dr. Metzger that I got most of the blood

work I had been asking my dr. years for. When I did

give them the paper of the blood work she only did

%80 insisting that unless something came up to show I

needed more tests

it wouldnt happen. When I told her that she had agreed

to work with Dr. Metzger and that she is a specialist

and didnt just pull these test out of the air for the

heck of it she told me " It's you medical Insurance "

she also made sure that when the results came back she

would be the only one to get them as if she was scared

of the other drs. finding out I got all these tests

done through blood work. So im sure some or most has

to do with me being on Medicare. Im glade this all

came up becouse I have a drs. apt. with my OBGYN at

the UOM wens. I'll take my note

book and have all the questions I need to ask and I'll

write the answers word for word, but I could almost

promise I will not get a script to get my hormones

tested becouse she will probably say im already on

them and have been. Concerning the endo. statis I will

ask why it doesnt matter if she says that again.

Tomorrow or actually today lol I'll call and find a

rheumatologist who takes my insurance and try to get

in and get tested for fibromyalgia and find out what

kind of arthritis do I have and is there anything they

can come up with. I have an appt. in sept.

to see the neurosurgeon who did my back surgery last

year. Im gonna see if he does the SpinalCord

Stimulators. I go back to that pain clinic in Oct. for

thw follow up to the rizotomy. What Else? OH Yeah in 6

weeks im gonna see if my family care dr. will give me

another script to get another Lyme Disease test, I

dout it though that script Dr. Metzger gave me last

dec. and I had held onto it all this time. Im also

gonna call the lab tomorrow concerning the present

Lyme results.

Few, im not giving up lol I seen that new show Medical

Mysteries and this 17 year old. girl who had been

healthy started having terrible back and leg pain.

When she told her story it reminded me of me. She got

to the point where pain meds. didnt help, she was

bedwridden and could barly walk. She had severe leg

pain. Well her parents sent her to alot of

specialist. She got the same thing " She wants

attention, or it's psycological " Blha blha blha anyway

she met another girl like her and that girl told her

she was positive for Lyme Disease. the girl said she

was tested already.

Short story she found a Lyme Specialist and he took 3

Vials of blood ( He said becouse to get the bacteria

in one vile is rare)and he sent them to 3 labs. She

was positive for Lyme disease and she didnt say what

the treatment was, but she has no pain and she leads a

normal life. Well she did say that she had to take

pills the rest of her life, but it was a small price

to pay to be pain free and have her life back. When I

seen that a month ago I dug out that Lyme test. I

thought well if I do have it maybe thats the under

lying cause and I'll get better too.

I was crushed when he told me it was a false positive.

Most ppl would want those results. It left me thinking

now I have to start all over again. Looking for the

peices of the puzzle.

Good Night Ladies, Tami

--- Kristy Sokoloski wrote:

> Tami,

>

> Have the drs given up on you b/c you are on

> disability or

> another reason?

>

> And as for checking to see if you have fibro, yes,

> you need to

> see a rheumatologist. They would also check you for

> other

> arthritic type conditions b/c as Dusty said there

> are over 100

> different types of arthritis (and that has to do

> with the

> disease, and such connected to it).

>

> Regardless of the reason that drs are giving up on

> you don't you

> give up. And I would write to the drs you see and

> say I don't

> appreciate that you have given up on me when I'm

> still trying to

> find out what's wrong with me and also letting them

> know that

> you don't appreciate their treating you as if you

> are nuts.

>

> (((Hugs))),

>

> Kristy

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Tami,

Have you ever asked them why they don't think you need to have

your hormones tested (as an example) to see what their answer

is?

In the case of the professor just b/c she's the professor of the

dept doesn't mean that she's that educated on endo. But I would

ask her why she thinks it doesn't matter just to see. The way

you deal with drs like this is to ask questions back.

As for the insurance issue, why not call the local Medicare

Member Services to ask about these tests and such (for the

future) so that you know?

In order to deal with drs like this you can't back down even if

they don't like a highly educated patient (which is part of the

problem you are having in addition to communicating that fact to

them on some level).

But for sure every time you tell them that this is what you want

done (on whatever that is) and they say oh you don't need it or

something like that ask why.

And let me know what the dr's answer about why the thing with a

lap done to check your endo doesn't matter and I'll explain why

I ask. I have a feeling the answer is going to be that it's b/c

you have had a hyst and that it " cured " (yep, there's that word

again) but it doesn't cure endo. But don't let these drs walk

all over you hun.

How are things going with the rhizotomy?

Kristy

__________________________________________________