Re: I have IC and...

[Guest guest]

--- zammiprincess wrote:

> I have IC and when I was initially diagnosed I had a

> bacterial

> infection and after antibiotics a yeast infection.

> During that time I

> itched and scratched the itch. Since then my vulva

> has white dry

> patches on my skin that look exema and underneath

> the dry skin is

> lighter than my normal skin tone and dry. Doe

> anyone have any ideas of

> what this could be?

When you mention the white skin it brings to mind a

possibility of another skin condition they don't know

much about called Lichen Sclerosis which is mostly

treated by steroid creams. One more acronym--LS

I have also experienced

> swelling, which my

> urologist stated was perhaps due to the IC as IC

> appears to effect

> surrounding organs.

Swelling is usually because of inflammation which can

be caused by a lot of things including the thing that

is causing your supposed Interstitial Cystitis--IC.

If he actually said that it " was due to the IC as IC

appears to effect surrounding organs " is the usual

answer I guess. I don't think IC affects the

surrounding organs. Obviously something does--probably

the same thing that causes the IC, inflammation, and

resulting dermatitis (could be yeast on the skin?).

Does anyone else have a similar

> problem, or ideas

> about it?

I don't have IC or dermatitis or LS or itching and

burning or swelling anymore because I stopped eating

the toxic (poisonous to me) foods that were causing

it.

My ideas are the same as usual and that is to have a

gluten sensitivity test at least at Enterolab.com and

only there if you want to know the answer of whether

or not you are sensitive to gluten. A test on dairy

would be a very positive step there also.

You must be very uncomfortable. In my opinion you

shouldn't accept that you are destined to have these

things forever because it is incurable and just sit

back and do the docs' protocol for managing your

disease. Managing a disease, which is what they do, is

not curing you. Perhaps you can do that yourself. I

did.

Arline

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

HI Zammiprincess. (sorry hon don't know your first name)

But seeing you mention that whiteness of the tissue, something you might want to consider is Lichen Sclerosis. (LS).... especially if it's very itchy. Just a thought.

Dee~

[Guest guest]

That sounds a lot like lichen sclerosis. I have both lichen sclerosis and IC too.

Take a look at this link...

http://www.niams.nih.gov/hi/topics/lichen/fflichen.htm

See if that looks like what you might have. It's an auto-immune skin problem. It's pretty easy to treat with clobetasol ointment.

I have IC and...

I have IC and when I was initially diagnosed I had a bacterial infection and after antibiotics a yeast infection. During that time I itched and scratched the itch. Since then my vulva has white dry patches on my skin that look exema and underneath the dry skin is lighter than my normal skin tone and dry. Doe anyone have any ideas of what this could be? I have also experienced swelling, which my urologist stated was perhaps due to the IC as IC appears to effect surrounding organs. Does anyone else have a similar problem, or ideas about it?

[Guest guest]

I also have IC and Lichen Sclerosis (I agree with the ladies, the white patches could be LS). My new doc, says that the two disorders usually go hand in hand, as you can see by the number of ladies on this site who are afflicted with both.

in Michigan

I have IC and...

I have IC and when I was initially diagnosed I had a bacterial infection and after antibiotics a yeast infection. During that time I itched and scratched the itch. Since then my vulva has white dry patches on my skin that look exema and underneath the dry skin is lighter than my normal skin tone and dry. Doe anyone have any ideas of what this could be? I have also experienced swelling, which my urologist stated was perhaps due to the IC as IC appears to effect surrounding organs. Does anyone else have a similar problem, or ideas about it?

[Guest guest]

HI ,

Hon most of the ladies on'this' site do not have LS, (as on the reg. LS group, they all do *sigh* and double this membership) Here there's a huge variety of vulvar/vaginal conditions and causes and you're right, some here do have the IC, or fibro, or chronic fatigue and more, but IC is not one that's usually connected with LS hon.

LS is technically a dermatological skin condition (not gynecological) that's external on the vulva/anal area and rarely goes into the vagina (as Lichen planus can) It's generally thought to be genetic and autoimmune and theorized to have a hormonal component to it.

Just wanted to say that hon and on the LS group IC is hardly ever mentioned. But... one of the more common ones that is, is a low hypoactive thyroid. (maybe 25%?) And Hepatitis C is often connected with lichen planus.. *sigh* So go figure.

Hugs

Dee~

[Guest guest]

Hi Dee,

In addition to my IC and LS, I also have lichen planus (vaginal) and errosive lichen planus (mouth). I'm sorry if I did not communicate my thoughts accurately. I was referring to a number of postings a couple of months ago, in which another person ( I don't remember who) was interested in knowing how many of us suffered from IC as well as LS. There were quite a few of us. I just found this interesting, since I had never heard of any of these disorders until I was diagnosed with them.

I also find the hepatitis c info interesting since I have LP (I'm happy to say I don't have that one). Thanks for sharing.

in MI

Re: I have IC and...

HI ,

Hon most of the ladies on'this' site do not have LS, (as on the reg. LS group, they all do *sigh* and double this membership) Here there's a huge variety of vulvar/vaginal conditions and causes and you're right, some here do have the IC, or fibro, or chronic fatigue and more, but IC is not one that's usually connected with LS hon.

LS is technically a dermatological skin condition (not gynecological) that's external on the vulva/anal area and rarely goes into the vagina (as Lichen planus can) It's generally thought to be genetic and autoimmune and theorized to have a hormonal component to it.

Just wanted to say that hon and on the LS group IC is hardly ever mentioned. But... one of the more common ones that is, is a low hypoactive thyroid. (maybe 25%?) And Hepatitis C is often connected with lichen planus.. *sigh* So go figure.

Hugs

Dee~

[Guest guest]

HI . I guess by comparison to over 2,200 at the LS group where no one that I'm aware of talks much at all about IC (and it would have come up I'd think) and the few LSers here that you said did (I must have missed that one) .DUH..but it's not typical and I've been doing this daily for 8 yrs (YIKES)

That's all I meant hon that I just don't think it's common to see them tied together, not that they can't be that's for sure but I'd think it's a separate issue. And I've never seen it listed as a possibility even. Just as you can have yeast or herpes or anything else with it or any condition but it's a secondary issue and not specifically tied into that particular disease or condition. Did that make sense? *grin*

Anyway hon sounds like you've got a really full plate.. WOW and LP as well? Lordy what a position to be in plus the IC. I'm so sorry, but TG for small favors that you don't have the Hep. C. *sigh*

The common connection with those just may be ''autoimmunity''... and with that you may find one member in the family with one autoimmune condition and Cousin Jane with another one and Aunt or Mom with something else.... so it's not necessarily the same condition that's passed on but what is in common is they have an autoimmune situation, the self fighting itself and it can show up in various ways. *sigh*

And tho Clob is the standard protocol for LS, it's not helped that many using it alone, sad to say or that group wouldn't have that many members as prob. 98% were given that alone and that's IF they were diagnosed correctly.

Regardless of what the text books say, it's those out in the field who know. And unfortunately it's often the reason some physicians seem to 'pooh pooh'' LS and act as if it's no big deal... Arghhhh talk about wanting to scream. *sigh*

Dee~

[Guest guest]

I think that's right, Dee. I have both IC and LS and VVS...

but I think the autoimmune connection is the thing. My urologist told me he believed IC to be autoimmune and my dermatologist said that LS was autoimmune so....

I think if you have one autoimmune problem you're probably gonna get another.... and another.... : )

Just a positive word here.... I went to the specialist yesterday and she said that she would never have known just from looking at me yesterday that I even had LS. I've been using the clob for a solid month now and all of the white patches were gone. I'm also using the estrace, Dee, thanks to the folks on the LS list. I think it's helping too. She told me that since I already have the Estrace I should try putting it on the vestibule too because it might also help the VVS. Anyway, I felt better knowing the clob seems to control the LS for me....

Re: I have IC and...

HI . I guess by comparison to over 2,200 at the LS group where no one that I'm aware of talks much at all about IC (and it would have come up I'd think) and the few LSers here that you said did (I must have missed that one) .DUH..but it's not typical and I've been doing this daily for 8 yrs (YIKES)

That's all I meant hon that I just don't think it's common to see them tied together, not that they can't be that's for sure but I'd think it's a separate issue. And I've never seen it listed as a possibility even. Just as you can have yeast or herpes or anything else with it or any condition but it's a secondary issue and not specifically tied into that particular disease or condition. Did that make sense? *grin*

Anyway hon sounds like you've got a really full plate.. WOW and LP as well? Lordy what a position to be in plus the IC. I'm so sorry, but TG for small favors that you don't have the Hep. C. *sigh*

The common connection with those just may be ''autoimmunity''... and with that you may find one member in the family with one autoimmune condition and Cousin Jane with another one and Aunt or Mom with something else.... so it's not necessarily the same condition that's passed on but what is in common is they have an autoimmune situation, the self fighting itself and it can show up in various ways. *sigh*

And tho Clob is the standard protocol for LS, it's not helped that many using it alone, sad to say or that group wouldn't have that many members as prob. 98% were given that alone and that's IF they were diagnosed correctly.

Regardless of what the text books say, it's those out in the field who know. And unfortunately it's often the reason some physicians seem to 'pooh pooh'' LS and act as if it's no big deal... Arghhhh talk about wanting to scream. *sigh*

Dee~

[Guest guest]

Hooray for you ,

I'm so happy for you that things are turning around for you. *grin*.... sorry to hear you too have the IC *sigh* as does. I'm so sorry for both of you, but it is likely with one autoimmune condition to have others, darnnit anyway! It's the immune system perse'. Well I guess I sure can't say I've not heard of the two connected anymore. *smile*

I'd still bet a dollar to a donut *chuckle* tho it's the Estrace that has returned your tissue to it's proper color hon and not the Clobetaol (a steroid) .... the clob is for symptoms to give you relief from the pain or itch or inflammation but it technically isn't what restores the tone, color or stretchability or quality to the tissue. It halts the progress of the disease so that hopefully your own body's immune system restores it... if it doesn't that's when the E can be so beneficial.

But no matter.. *smile* just so you're doing well and that's the bottom line and now if only it could help the IC.... and who knows? to 'me' the estrogen just might help that as well since it's such an excellent wound healer and skin (whether internal or external) thrives on estrogen, that would even include the artery's, veins, the heart (let alone the bones) and even the brain but esp. the genitals and the area surrounding like the bladder, urethra, etc. soooo just maybe? I can hope anyway.

Big hugs hon and MUCH continued success and sure hope you and can get the IC straighted out soon too. Hang in there both of you.

Dee~