You are all very brave, we are more than just vulvas

[Guest guest]

I just wanted to tell you all how very brave I think you are for

continuing research and trying to fix a problem that seems like it

will sometimes never get better. I have only been dealing with this

for a few years as I am only 24 years old and have only recently

found much of the information regarding vv. I am already exhausted:)

Thank you for sharing your stories and your remedies. It is wonderful

that you all support each other, even in bad times.

I also have to keep reminding myself that we are more than just

vulvas or vaginas. We are awesome women with so much to offer and

dealing with something that robs you of your sexuality makes you take

a real good look at yourself. Especially if you are married or with a

partner. Sex actually only makes up a small part of all of the time

spent with our significant others. It is hard for me to maintain this

thinking, so I thought I would share in a good moment. In my bad

moments while I am in pain and tears I cry " I'm more than just my

broken vulva " , this is not all I am! I also have PCOS, which makes me

increasingly hairy, so I feel double unattractive as I fight

increased hairgrowth as well.

But my husband seems to love me so much, even through all of it. He

believes God has joined us together and He did not make a mistake. In

bad times I have told him I would understand if he leaves me because

he may not have realized in marrying me what he was signing up for.

But he gets angry when that talk comes up. He says he loves when I am

just honest with him no matter what I am going through. I pray that

you will all have understanding family and friends and partners.

I also pray that you all have someone in your lives, who may be on

this forum (and thank God for this forum), or you may know

personally, who can just be totally honest with no matter what. Thank

you for your examples to me and for making yourselves available to

comfort each other even though you are also in so much pain.

Melinda

[Guest guest]

Melinda - thank you so much for writing this e-mail. I feel the same

way about the people in this group and admire everyone so much for the

challenges they face and the support they give each other. This group

has been a great help to me. I have asked several doctors over the

years if they could connect me with any other patients who have what I

have so that I could talk to someone who experiences this rather than

just talking to doctors who know about it. They don't seem to take me

very seriously when I ask this, or they don't have the time to think

about this. It has been so hard to not know anyone with the

combination of problems and symptoms that I have. It als has been very

hard on my relationship with my husband and that is scary for me. I

don't know if my marriage will survive this - not because my husband is

a bad guy or a mean guy - just that my life, health, and emotional

state is changing so much, I'm not the same person anymore and I have

much less ability to look to the future or to focus too much on the

world around me. I know that other people face some of these same kind

of things and it makes me feel less alone. Thanks for reminding me of

that.

Sally