ENDO Messages for January, 2005: Re: HELP! does anyone else have external endometriosis? --> WOW

Re: HELP! does anyone else have external endometriosis? --> WOW

From: Anna (anonymous@obgyn.net)
Wed Jan 12 22:31:27 2005

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Oh my!

I have wondered so much if that was possible!!!

I have had no end of problems with pain in my labia/vulva and with penetration or even touching of any kind. My GYN diagnosed me with vulvar vestibulitis, which basically means nothing according to him, except that I have unexplained pain in the vulvar region. He said anti-depressants have been found to help -- I've read that they change the way our body processes pain signals -- he made it sound more like, "you'll feel better, *wink*". (patronizing!)

I have been using lidocaine ointment regularly, and I also use it if I think my husband and I might have sex in the next hour or so. It helps make that possible. It stings at first but for me it's worth it.

But honestly, my dear, please don't give up looking for more info on external endo and please post if you find ANYthing out. I'll do the same. I'm going to have a phone consult with Dr. Cook soon so I'll add it to my list of questions.

All the best,

-Anna

PS You can't be too graphic for me, so long as it's within this endo context. I feel strongly that we need to be okay talking about our bodies if we are to get anywhere in our struggles.

At Tue, 11 Jan 2005, tasha wrote: >
>No, what i have is more like little red tears and the skin all around
>them is smooth, unlike what normal skin down there should be like.
>Around the time I get my period a very tiny bit of pinkish stuff comes
>off them. Sorry I cant be more help, they are hard to describe.
>Tasha
>
>At Tue, 11 Jan 2005, Lori wrote:
>>
>>Is yours like small lumps, sort of like very large pimples? that are
>>visible, sorry to be graphic. I have had that and also on the top of my
>>legs I can feel lumps but cannot see them. I think it is referred to as
>>skin endo. Comes and goes with my treatments...
>>Lori
>>http://www.theendoclub.com
>>
>>At Mon, 10 Jan 2005, tasha wrote:
>>>
>>>I have been looking all over the internet for information and I have yet
>>>to find any that relates to my condition. For six months I have what my
>>>gynecologist calls 'ulcers' on my labia. I had a biopsy done three
>>>months ago on my labia and was diagnosed with endometriosis.
>>>
>>>My skin down there has not been normal looking since I first got it; it
>>>is too screwed up to have sex, being partially penetrated hurts. I
>>>don't have abdominal pain or anything else that seems to be involved
>>>with endometriosis on the inside.
>>>
>>>My doctor said he has never seen or heard of any kind of endometriosis
>>>on the outside before and is in the process of asking collegues.
>>>
>>>Does anyone here have this??
>>>I would really appreciate responses, it feels like I am the only person
>>>on the planet with this strange version of endometriosis.
>>>Thanks so much.

Next message: Karen: "endo and hysterectomy"
Previous message: Gina: "flouride"
In reply to: tasha: "Re: HELP! does anyone else have external endometriosis?"
Next in thread: Tawnia: "Re: HELP! does anyone else have external endometriosis?"

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