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Re: cause of VVS

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My doctor belives vvs to be genetic and caused by inflammation of the

vestibulary and Bartholins glands. The glands become inflammed and then

grow and become swollen. Hardened and fiberous tissue developes around them

causing the pain. A normal vestibulary gland is 1cm or less deep. The

glands removed from me during my surgery were 4 inches deep! In addition

there was Fibromas and a great deal of scar tissue as well.

My doctor does belive that some patients can have nurelogical problems in

addition, but that if that is the sole cause of the pain that is not really

vvs. That is a different type of vulvodynia that I cant remember the name

of right now.

I hope that helps.

Bunny

----Original Message Follows----

From: susan_stage@...

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: cause of VVS

Date: Sun, 10 Jun 2001 13:54:06 -0000

Hi all,

I've read a lot of info about VVS lately.

It seems that there's a discussion about the causes.

I've read that VVS is caused by an overactivity from the glands.

A surgery could therefore be helfpful.

I've also read that some believe that VVS is caused by overactivity

of the nerve endings and that removing the glands would give no

relieve. I even read that developing VVS could be genetical!

I'm wondering what you think, since i don't know.

Any ideas on this?

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,

I have a question. What about those that are like me that

have vulvodynia as a result of a medical procedure like

surgery?

The reason that I ask this is b/c of the fact that prior to

the labioplasty in 1997 I never had problems with my vulvar

area.

=====

Kristy :)

http://www.geocities.com/sokokl/kristyspersonalpage.html

Owner:

http://groups.yahoo.com/group/Endo_Vulvodynia_PCOS

http://groups.yahoo.com/group/Zoladexforendometriosis

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> ,

>

> I have a question. What about those that are like me that

> have vulvodynia as a result of a medical procedure like

> surgery?

>

> The reason that I ask this is b/c of the fact that prior to

> the labioplasty in 1997 I never had problems with my vulvar

> area.

>

>

>

>

> =====

> Kristy :)

>

Could it be nerve damage from the surgery?

Lynn

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I had pain after my first child was born (he is now 7) and after triple stitching my episiotomy site and being in general distress (Toxema and HELLP syndrome) and feel very strongly that the birth event as traumatic as it was and the VV are intimately conected.

On a positive note, I have been completely pain free for 45 days now and have just been able to be with my husband for 10 days straight!!! This is truly a first in a very long time so perhaps there is light at the end of this very long winding tunnel.

Regards and good luck to us all,

Jen

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Kristy, I had a hysterectomy, and 2 weeks later I started hemorraging so bad that I had to have emergency surgery. After that my vulvodynia started. My gynecologist thinks that it may have been caused by the surgery. Jerri

Re: cause of VVS

> ,> > I have a question. What about those that are like me that> have vulvodynia as a result of a medical procedure like> surgery?> > The reason that I ask this is b/c of the fact that prior to> the labioplasty in 1997 I never had problems with my vulvar> area.> > > > > =====> Kristy :)> Could it be nerve damage from the surgery?Lynn*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

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Hi all

I think the message is than when you have so

much info. no-one really knows the true answer.

Overall I personally think the evidence with non

-surgical treatments esp. biofeedback and other

treatments aimed at stabilising nerve and pelvic floor

function mean the problem probably happens in

susceptible people(possibly genetically susceptible)

in response to a variety of things that others don't

react to at all. Did you know men get similar

syndromes in areas that are derived from the same

sorts of tissue when we are all embryos? When in

doubt fon't have it cut out! Tan

--- susan_stage@... wrote:

> Hi all,

>

> I've read a lot of info about VVS lately.

> It seems that there's a discussion about the causes.

>

> I've read that VVS is caused by an overactivity from

> the glands.

> A surgery could therefore be helfpful.

> I've also read that some believe that VVS is caused

> by overactivity

> of the nerve endings and that removing the glands

> would give no

> relieve. I even read that developing VVS could be

> genetical!

>

> I'm wondering what you think, since i don't know.

> Any ideas on this?

>

>

>

>

>

>

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Tan,

I had asked earlier about those of us that are like me that

ended up with vulvodynia that was caused by a medical

procedure, but now I have a question for you.

What if the person that has vulvodynia as a result of a

medical procedure like I do and has no genetic connection

doesn't have a problem with their pelvic floor or pudenal

neuralgia?

I'm curious about this and would like to continue this

discussion with my dr to see what her thoughts are on this.

Thanks for any info that you can give me.

=====

Kristy :)

http://www.geocities.com/sokokl/kristyspersonalpage.html

Owner:

http://groups.yahoo.com/group/Endo_Vulvodynia_PCOS

http://groups.yahoo.com/group/Zoladexforendometriosis

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Kristy,

The doctor I am seeing (and some articals I have read) would say that it is

most likley nuralogical if it is the result of surgery. Whenever any type

of surgery is done, even something like a laporoscopy that isnt as invasive,

there is a some risk of nerve damage.

Bunny

----Original Message Follows----

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Re: cause of VVS

Date: Sun, 10 Jun 2001 13:37:18 -0700 (PDT)

,

I have a question. What about those that are like me that

have vulvodynia as a result of a medical procedure like

surgery?

The reason that I ask this is b/c of the fact that prior to

the labioplasty in 1997 I never had problems with my vulvar

area.

=====

Kristy :)

http://www.geocities.com/sokokl/kristyspersonalpage.html

Owner:

http://groups.yahoo.com/group/Endo_Vulvodynia_PCOS

http://groups.yahoo.com/group/Zoladexforendometriosis

__________________________________________________

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Does anyone know if C sections can cause it, and I had one laporoscopy to

look for endo.

Lona

:

: Kristy,

:

: The doctor I am seeing (and some articals I have read) would say that it

is

: most likley nuralogical if it is the result of surgery. Whenever any type

: of surgery is done, even something like a laporoscopy that isnt as

invasive,

: there is a some risk of nerve damage.

:

: Bunny

:

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WOW!!!!

Thats more sex then I've had all year;)

Bunny

----Original Message Follows----

From: stragej@...

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: Re: cause of VVS

Date: Sun, 10 Jun 2001 23:03:13 EDT

I had pain after my first child was born (he is now 7) and after triple

stitching my episiotomy site and being in general distress (Toxema and HELLP

syndrome) and feel very strongly that the birth event as traumatic as it was

and the VV are intimately conected.

On a positive note, I have been completely pain free for 45 days now and

have

just been able to be with my husband for 10 days straight!!! This is truly

a

first in a very long time so perhaps there is light at the end of this very

long winding tunnel.

Regards and good luck to us all,

Jen

_________________________________________________________________

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Lona and ,

The laparoscopies that I have had in relation to the endo

don't affect my vulvodynia. I guess everyone is different.

Sorry that I can't answer your question about C sections.

, I do think that I might have some nerve damage

involved but I can't say that for sure until I see the op

report from the labioplasty.

But I can tell you for sure that the laparoscopies that

I've had for the sake of my endo don't tie in to my

vulvodynia or the neuralgia. The nerves bother me once in

a while but not on an every day basis. I can always tell

when my nerves are bothering me b/c the symptoms that I

feel with that are different from the actual pain that I

get from the vulvodynia.

My dr and I have discussed this and we know for sure that

the surgery caused the vulvodynia and the infections that I

keep getting and maybe its b/c of those infections that the

nerves are being affected. I will have to ask her about

that. Thankfully the meds that I'm using for the pain and

the symptoms in general are quite helpful.

And apparently from what I'm learning about this surgery (I

guess I will have to do some more research on this) that

nerves aren't always damaged. That's why that op report is

so necessary for me to see.

Hold on to your seat b/c what I'm going to tell

you will make you hit the ceiling the same way it did my

ob/gyn. The dr that did this surgery for me wasn't an

ob/gyn like it should have been. A urologist did this

surgery for me. Yes, you read that right a urologist did

it. Why? I don't know why. You would have to ask the dr

that was my family dr at the time (and yes it was a male

dr). I would have to look back at the notes of the records

that I have to see if it says why he sent me to a urologist

instead of telling me to go to an ob/gyn about this.

All I know was that he did what I asked him to do but I

don't know just what went on in that surgery as to what all

he did except that he made a straight cut all the way down.

That's about all I know right now. Let me know if you have

any questions about this.

=====

Kristy :)

http://www.geocities.com/sokokl/kristyspersonalpage.html

Owner:

http://groups.yahoo.com/group/Endo_Vulvodynia_PCOS

http://groups.yahoo.com/group/Zoladexforendometriosis

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> I've read that VVS is caused by an overactivity from the glands.

> A surgery could therefore be helfpful.

My first dr told me it was from an infalmmation around the glands, not

the glands themselves. So I had surgery to have the glands removed.

After a slow but steady recovery, my partner and I worked up to

intercourse. 4 months post=surgery, we finally tried it. It was

painful, and didn't last long. The next day, my pain came back, as

bad as before the surgery. This was 7 months ago, and the pain is

still there, just as bad.

> I've also read that some believe that VVS is caused by overactivity

> of the nerve endings and that removing the glands would give no

> relieve. I even read that developing VVS could be genetical!

My current dr says it is due to the nerve endings become oversensitive

or something like that - that the nerve endings are misreading the

signals, so that a normal touch feels painful. She said that the

reason surgery works sometimes is that it removes a lot of the

affected nerve endings.

Given my personal experience, the 2nd reason makes more sense. Also,

I have non-gland areas that are painful - heck, I don't even have the

glands anymore.

-

>

> I'm wondering what you think, since i don't know.

> Any ideas on this?

>

>

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> Hi Kristy, I'm sorry but you still haven't asked a question to me

> Answer: In my practice we see people who have been treated many

times at other facilities with traditional methodes and I can tell you

from experience of 24 years clinical practice, that some individuals

need there

> pain to exist. They get secondary gain from being in pain. It

gives them a life so to speak. If not for the pain and all those

wonderful diagnosises to list out like merit badges they would have to

become normal

> productive citizens. They actually hold on the the pain in their

minds to such a level that the body actually grants the wish.

Tom, I do not doubt that there are people who somaticize for

secondary gain. There is a history of medical professionals thinking

this order must somehow have a psychological etiology, which then

leads them to discount the very real physical pain and agony. This

particular disorder is a little more difficult to get lots of

secondary gain, since it is sexually related, and any sexually-related

problem is more difficult to talk about and to listen to than other

topics. Most women with VVS would not feel comfortable complaining

about it to their co-workers at the water cooler. Much more common is

to hear about women who said very little for years because they were

embarrassed to talk about it, or when they did, no one would take them

seriously. If you look at the history of how sexual abuse was

historically treated in the field of psychology, you will see

similarities (women were thought to have imagined, fanatsized or made

up these stories for attention).

I am a psychologist. There have been studies that show no personality

or psychological differences between women with & w/o this disorder

(except that women who have been suffering from this disorder are at

risk for developing a secondary depression).

Again, while it is certainly possible that some women out there get

some secondary gain from this illness, it is probably about as common

as women who lie about being raped for the attention. It does

happen, but it is not common or typical.

I am personally resentful of your implication about the etiology of

this illness. There is no basis for your suggestion in the medical or

psychological literature. In fact, there is disagreement in the

field about how the pain is even caused - some say inflammation around

the glands, others say overstimulated nerve endings. No one knows for

certain the etiology of this disorder. We don't know the etiology of

MS, either, but no one suggests that people develop MS symptoms for

secondary gain.

This disorder sucks, and the vast majority of sufferers would give

their right arm (I know I would) to wake up tomorrow, have the pain be

gone, and get on with their lives. Unfortunately, the lack of a cure

means that many of us have to devote a lot of time and energy to

researching possible cures, and to spend time and money trying out

anything that offers even a glimmer of hope. Sometimes it is

difficult to keep a container around it so that it doesn't become too

much of a focus in our lives.

Hopefully your health care professionals would stay committed to

helping and believeing you if you developed a difficult to treat pain

in your penis.

- Dr. Taub

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----- Original Message -----

> Hypothetical question: What do you think a cause may be if someone has vv

and yet it is not due to genetics or pelvic floor / peudendal nerve

dysfunction.

> Answer: In my practice we see people who have been treated many times at

other facilities with traditional methodes and I can tell you from

experience of 24 years clinical practice, that some individuals need there

> pain to exist.

Okay, here's a summary of what you said above:

The only causes of VV are genetics and/or pelvic floor/peudenal nerve

dysfunction. If the cause of you pain is not due to one of these

problems, then likely it is a case of your being " mental. "

Don't you think that is a bit shortsighted? What about a dermatalogical

cause? How about too much " substance P " in the vulvar skin? What about

allergies? Autoimmune disorder? Or any of the hundreds of other causes we

post and read about here regularly?

I would think, Tom, that by now you would have gotten the feel for this list

enough to realize that suggesting that we might all be nuts is not going to

be well received. I can hardly believe that you are suggesting it. For

some reason there seem to be several members who keep defending you when you

have repeatedly said things that have offended list members. For the life of

me I can't understand why. Think about what you are saying before posting

it. Is it your intention to upset us?

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I don't really know what my point is<BR>

> here, but I just wish we could feel comfortable<BR>

> talking about this with anyone!!!

Wow...I was diagnosed last year and haven't told anyone except my husband. Sex

was taboo in our household when I was young. My parents never brought up the

subject. The only education I got about it was in school, movies and real-life

experiences. Bringing my vvs to them seems so crazy and impossible!!

Chantal

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Amber,

I think that is wonderful that you work in such a supportive environment.

My employers are wonderfull too. When I called my boss and said that I may

need an additional 2 weeks off of work she told me to just call when I was

ready and she would put me back on the schedual, she just wants me to get

well again. There is only one gal at work that I have been open about my

condition with though. All the other gals know that I had some " personal

Surgery " related to femail problems and having children. Same with people

at church. Only my pastor knows what is going on there and he has been

wonderfully compationate and understanding.

Wouldnt it be wonderful if this was a problem you could talk openly with

anyone about?

Bunny

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I would have to agree with you . There are many other theorys out

there for what causes vvs. When the doctors dont even agree about all of

the different theorys out there and when specialization in this in the

medical field is so new I would have to say that no one should jump to the

conclusion that it is psycological soley because the cause is unknown.

Bunny

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Recently I had cataracts removed from both my eyes. I had local anesthesia

which involved putting drops in my eyes. When the first eye was done, the nurse

put a drop in my eye every ten minutes or so until it was completely

anesthesized. I had no pain but for a few weeks after the surgery my eye was

very sensitive (not painful) and the sensitivity would go away when I put on a

pair of glasses which kept out the air to some extent. The doctor said that was

because my eyelid was stretched during the surgery and it would get better or I

might have to have plastic surgery in the future. However it resolved itself in

a few weeks.

When my other eye was done, they did the drops differently, they did not put

them in periodically but would put in several at one time, which was extremely

uncomfortable and I had difficulty keeping my eye open for multiple drops. The

nurse would hold my eye open while putting in several drops, one at a time.

Hold eye open, put in drop, release, hold eye open, put in drop,

release,etc. etc.

My left eye (the second one) is still extremely sensitive when I am not wearing

glasses when my eyes are open. Also my left eyelids, (upper and lower) seem

to be stretched still and I hope they go back to the way they were before. It

is getting better with time.

The point I am getting at is that our eyelids protect our eyes. With stretching

or other trauma to the eyelids, it can affect the eyes themselves.

Our labia and pubic hair protect our vagina, and other tissues " down there "

Perhaps trauma to the vulva as in stretching or other, such as when wearing

pads, tight clothing with harsh seams, doing exercises which might stretch the

vulvar tissues, could cause that protection to be impaired, resulting in

extreme sensitivity for long periods of time.

Ora

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,

I am glad you are able to talk about this problem to women at

work. I for one haven't been that fortunante to be able to do

that. I have only talked to a couple of women at work about it

and one was very open and compassionate and the other looked

at me like I was some kind of freak with mental problems.

Luckily I have a daughter, sister and husband that know me well

enough to know that this is not in my head and is real, and have

been very supportive. Also I do not know what I would do with

out all of you. You all have been great!

Take care, Pam

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Chantal - you can tell you parents anything. Are you are parent yourself?

If not, take this from one who is (of 5 and 7 yr old boys). I want to know EVERYTHING and it hurts when you know that they are in pain and can't tell you - even if your parents didn't encourage you to communicate as a child, now that you are an adult, you can take the iniative. You might find that your Mom has the same problem. We never talked about sex in my house - and yet after college, I was able to tell my parents that I was raped while in HS and most recently about the VV. My mom, in particular was very concerned as I knew she would be. Please take our confidence in you and talk to your mom this week - perhaps right now, you can pick up the phone (that may be easier than in person). You can do and we are here for you

Regards & Hugs

Jen

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I have noticed that a lot of people are really " attacking " Tom for his post in this thread. I think some people need to step back and read it again objectively. His post was solely based on this:

quoted from Tom's post on 6/12/01:

" Hypothetical question: What do you think a cause may be if someone has vv and yet it is not due to genetics or pelvic floor / peudendal nerve dysfunction. "

He did say it *could* be psycologically based if it were ***not**** genetic or pelvic floor/peudendal nerve dysfunction.

He also wrote:

" So the answer to the hypothetical question is psychologocal facters are a major compoent in chronic illness in some people. Warning signs:

Talks constantly about their unique type of pain / disease. Changes subjects to their situation no matter what you are trying to talk about. Never lets you forget that thier pain is somehow unusual compared to others with the same disease. Will not accept any resposibility for their plight in life. Nor are they will to make the lifestyle choices that will really help. Have a bad personal relationship with someone in their life, past or present. "

For the newer members, you may condsider checking out Tom's posts in the archives. He has often given very helpful information to many of the ladies here. I am not a frequent poster here, but I do read daily...and I hate to see anyone being attacked for an obvious misunderstanding/misinterpretation.

Peacefully,

Margaret Vadalahttp://www.unlockingautism.org

Re: cause of VVSHI EVERYONE,Well I am so relieved that you all have so muchsupport for one another. There is always someone likeTom out there, but remember we are here to support oneanother and not lose track of things because of peoplelike Tom. Now on to more important things...I havebeen really researching vulvodynia (causes,treatments, supports, doctors, etc). Reason being isthat my partner who I love dearly is suffering fromthis terrible condition. There are many days when shecries because the pain is so severe, that she barelycan walk. We have tried medications, herbal remedies,baths, anti-septics, ice packs, etc. Is there anyoneout there who we can talk to regularlly. My partnerreally needs a lot of support and could be veryhelpful to some of you out there. I pray that one ofyou all reply. Thanks and take care, I wish everyonethe best.--- RSand66893@... wrote:> Tom,> > > Please realize that those of us that suffer from> this > awful problem are very sensitive to the fact that> when> someone suggest that it could possible be in our> head> makes us feel more depressed then most of us already> are> from dealing with this every day. A lot of us have> gotten> that response from the medical field and it is very> frustrat-> ing and depressing. I am sure your intentions were> not to imply > that this is in our heads. I realize that there are> some women > that create medical problems to get attention but I> can't imagine > why anyone would want to make up this problem. Most> of us would do > anything to have a normal sex life again and not be> in constant pain.> I have to agree with what said. You know if> a man went to > the doctor with a constantly burning penis the> doctor probably would > not think it was in his head, so why do a lot of> them assume that > when a women comes in with a constantly burning vula> and painful > intercourse that it's in their head!> > Pam> > > __________________________________________________

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I have been able to look at Toms posts objectively, and I know what he ment

in this post. This is a sensitive subject we are dealing with and I think

it is easy for people take things the wrong way. When we read email we cant

hear the persons voice or read bodylanguage. The conotation you use when

writting can make a big difference on how people take what is written. I

think if Tom WROTE objectively, it would be easyer for people to take it

objectivly.

Tom,

I know what you ment in your post, and I have found the information you have

given us valuable. Just wanted you to know that. I think that sometimes

you write in a way that people can easely take the wrong way. I know that

you are on the list soley to give us helpful advice and I apreciate that. I

think others hear do too.

Bunny

----Original Message Follows----

Reply-To: VulvarDisorders

To: <VulvarDisorders >

Subject: Re: cause of VVS

Date: Thu, 14 Jun 2001 13:20:59 -0400

I have noticed that a lot of people are really " attacking " Tom for his post

in this thread. I think some people need to step back and read it again

objectively. His post was solely based on this:

quoted from Tom's post on 6/12/01:

" Hypothetical question: What do you think a cause may be if someone has vv

and yet it is not due to genetics or pelvic floor / peudendal nerve

dysfunction. "

He did say it *could* be psycologically based if it were ***not**** genetic

or pelvic floor/peudendal nerve dysfunction.

He also wrote:

" So the answer to the hypothetical question is psychologocal facters are a

major compoent in chronic illness in some people.

Warning signs:

1.. Talks constantly about their unique type of pain / disease.

2.. Changes subjects to their situation no matter what you are trying

to talk about.

3.. Never lets you forget that thier pain is somehow unusual compared

to others with the same disease.

4.. Will not accept any resposibility for their plight in life.

5.. Nor are they will to make the lifestyle choices that will really

help.

6.. Have a bad personal relationship with someone in their life, past

or present. "

For the newer members, you may condsider checking out Tom's posts in the

archives. He has often given very helpful information to many of the ladies

here. I am not a frequent poster here, but I do read daily...and I hate to

see anyone being attacked for an obvious misunderstanding/misinterpretation.

Peacefully,

Margaret Vadala

http://www.unlockingautism.org

Re: cause of VVS

HI EVERYONE,

Well I am so relieved that you all have so much

support for one another. There is always someone like

Tom out there, but remember we are here to support one

another and not lose track of things because of people

like Tom. Now on to more important things...I have

been really researching vulvodynia (causes,

treatments, supports, doctors, etc). Reason being is

that my partner who I love dearly is suffering from

this terrible condition. There are many days when she

cries because the pain is so severe, that she barely

can walk. We have tried medications, herbal remedies,

baths, anti-septics, ice packs, etc. Is there anyone

out there who we can talk to regularlly. My partner

really needs a lot of support and could be very

helpful to some of you out there. I pray that one of

you all reply. Thanks and take care, I wish everyone

the best.

--- RSand66893@... wrote:

> Tom,

>

>

> Please realize that those of us that suffer from

> this

> awful problem are very sensitive to the fact that

> when

> someone suggest that it could possible be in our

> head

> makes us feel more depressed then most of us already

> are

> from dealing with this every day. A lot of us have

> gotten

> that response from the medical field and it is very

> frustrat-

> ing and depressing. I am sure your intentions were

> not to imply

> that this is in our heads. I realize that there are

> some women

> that create medical problems to get attention but I

> can't imagine

> why anyone would want to make up this problem. Most

> of us would do

> anything to have a normal sex life again and not be

> in constant pain.

> I have to agree with what said. You know if

> a man went to

> the doctor with a constantly burning penis the

> doctor probably would

> not think it was in his head, so why do a lot of

> them assume that

> when a women comes in with a constantly burning vula

> and painful

> intercourse that it's in their head!

>

> Pam

>

>

>

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