Re: Sherri & daughters labia reconstruction/surgery

[Guest guest]

She does have some vulvar issues to Dee. That's also one of the

reasons I think she needs to be checked for endo b/c it can

bother the vulva too.

Kristy

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[Guest guest]

Yes I saw that later Kristy, thanks hon. With vulvar issues already I just know I wouldn't consider the surgery yet I understand where the poor thing is coming from. *sigh* It may even be part of the Crohns and possibly the endo as you suggested, but what a shame for someone so young. It just breaks your heart.

I hate to see anyone so young with this condition (or older) but if someones had a previous fairly normal sexual life at least they did experience that, (and wants it back so don't misunderstand) but with young people who are just starting out in life, it's just not fair. *sigh* I even include you hon. You've gone thru far too much in your young life too.

HugsDee~

..

[Guest guest]

Hi Dee,

It is too soon to consider surgery right now and believe me I

wish I would have gotten an opinion from a gyn before having

mine. My gyn that I have now hit the ceiling when she saw the

notes from the dr that did it (yes b/c I had to chase down the

records) and the fact that it was a urologist that did the

surgery and not a gyn.

She's very protective of me.

B/c of the fact that there is inflammation sometimes even

without the ulcers makes me think that she may also have endo as

I told Sherri. Endo can cause all kinds of problems with the

colon and yes it can eat thru all the layers of the colon as I

told #2. That's the only time it will show up on

colonoscopy.

I'm used to hearing about teens that have endo. No one is too

young or too old to have it. But you are right, it's not fair

what we have to deal with.

Kristy

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[Guest guest]

Hi Kristy:

Trying to answer, I am so behind in reading. What are the symptoms of endo? My daughter had a colonoscopy with multiple biopsies and nothing was mentioned about endo, would it have shown up if she had it?

Also, I think you asked about her periods. They were horrible. Twice a month lasting a week each with cramps. When she was diagnosed with Crohn's, she was also anemic and has osteoporosis. She went on the pill to help with the bleeding. Between that and all of the Crohn's meds her periods are much better. She has horrible PMS and burns when whe starts bleeding.

If she wants the labioplasty, I would like her to wait until she is an adult. I think it is the left side that is larger. Mine is on the left also, but not like hers.

Sherri

-------------- Original message -------------- >the ulcers makes me think that she may also have endo as > I told Sherri. Endo can cause all kinds of problems with the > colon and yes it can eat thru all the layers of the colon as I > told #2. That's the only time it will show up on > colonoscopy. > > > > > > > > > > > __________________________________________________ >

[Guest guest]

Hi Kristy:

Trying to answer, I am so behind in reading. What are the symptoms of endo? My daughter had a colonoscopy with multiple biopsies and nothing was mentioned about endo, would it have shown up if she had it?

Also, I think you asked about her periods. They were horrible. Twice a month lasting a week each with cramps. When she was diagnosed with Crohn's, she was also anemic and has osteoporosis. She went on the pill to help with the bleeding. Between that and all of the Crohn's meds her periods are much better. She has horrible PMS and burns when whe starts bleeding.

If she wants the labioplasty, I would like her to wait until she is an adult. I think it is the left side that is larger. Mine is on the left also, but not like hers.

Sherri

-------------- Original message -------------- >the ulcers makes me think that she may also have endo as > I told Sherri. Endo can cause all kinds of problems with the > colon and yes it can eat thru all the layers of the colon as I > told #2. That's the only time it will show up on > colonoscopy. > > > > > > > > > > > __________________________________________________ >

[Guest guest]

Hi Dee\:

She has pain on contact at the opening of her vagina and burning when she has her period. She is a virgin, don't know how sex is going to be. I understand why she wants to have the surgery, eventually she is going to want to have sex and I think she is very self consience about it.

Thanks for the kind thoughts about the wisdom teeth........not looking forward to it!!

Sherri

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

HI Sherri,

I guess I can understand where your daughter is coming from and IF the labia seems that distorted, but I was under the impression she's got vulvodynia or some kind of vulvar pain. Maybe I'm wrong.

[Guest guest]

Hi Dee\:

She has pain on contact at the opening of her vagina and burning when she has her period. She is a virgin, don't know how sex is going to be. I understand why she wants to have the surgery, eventually she is going to want to have sex and I think she is very self consience about it.

Thanks for the kind thoughts about the wisdom teeth........not looking forward to it!!

Sherri

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

HI Sherri,

I guess I can understand where your daughter is coming from and IF the labia seems that distorted, but I was under the impression she's got vulvodynia or some kind of vulvar pain. Maybe I'm wrong.

[Guest guest]

Sherri,

The endo wouldn't have shown up on the colonoscopy unless it ate

thru all the layers of her colon. Endo starts from the outside

in. Which means that a laparoscopy is necessary to see what's

going on to see if it is there and where all it's at.

As for the symptoms painful periods as well as pain throughout

other parts of the cycle are classic symptoms. But this is a

disease that can have just as many atypical symptoms as classic.

And what I gave you is just two examples of symptoms that can

occur. I can give you a link that gives even more info if you

want to check it out.

Endo can irritate the nerves around that area by growing on them

as well as on areas such as the colon or uterus and bladder as a

couple of examples. And yes the vulva. This is also why I'm

telling Tami that she needs to have the status of hers checked

b/c it may or may not explain part of her pain issue, and Sandi

hers b/c of the GI issues and also to see a GI specialist to

make sure nothing is missed b/c if it is those IV vitamins are

masking the real problem that could be causing all the symptoms

she's having now.

Don't let her dr tell you that she's too young to have endo b/c

she is not. There are too many drs out there that still think

endo is only seen in women in their 20s. Some don't want to

believe that a woman in her 70s or 80s can still have problems

with endo if she was diagnosed with it when she was younger.

There's still more work that needs to be done to get the word

out.

The fact that your daughter's periods have been so horrible is a

very good reason to check to see if she might have endo. I hope

she doesn't but if she does it may explain the period issues as

well as her vulvar issues now and also the feelings with her

colon even when it's not the Crohn's acting up.

If you have other questions pls feel free to e-mail me offlist

if you prefer.

And I agree about waiting til she's older to have the surgery.

I was 25 when I had mine and I regret it now but at the time I

thought it would help. But now I know that I should have let a

gyn do it instead.

Kristy

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