Re: Interstatial Cystitis and Vulvodynia

[Guest guest]

I actually believe they CAN be the same general condition, just two different

manifestations. My symptoms began with more urinary problems, then moved to

be more vulvar, although i still have urinary problems sometimes too. My

general diagnosis is vulvar vestibulitis (a subset of vulvodynia). The way I

understand VV, it's due to either a chronic inflammatory response that the

body can't figure out how to terminate, or to hypersensitive nerve endings,

or possibly (and I think probably) both these factors working together. I

don't see why the same two factors couldn't be at work in the urethral tissue

as well. Not only is it all connected, but, according to what I've read, it

all arises from the same tissue in the developing fetus (so it's very closely

related).

[Guest guest]

ive never heard that from any doctor, they have always been described as two

different diseases. i was just reading symptoms for both, im not a doctor,

but they dont seem the same to me.

My doctor said that he was taught and still

>believes this until proven otherwise --that vulvodynia and interstatial

>cystitis are the same thing. Some people get the pain/burn inside the

>bladder and some get it outside on the vulvar area. >Has anyone else been

>told that vulvodynia is the same as interstatial

>cystits but on the outside?

>

>Lynn

>

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[Guest guest]

It really is the same process , though some just get affected in the bladder, some the vulvar area. Pelvic floor muscles are most always involved. The urogenital area is all connected. I see more women getting better with IC doing the vulvodynia protocol than IC protocols, which shows you it is very connected. Low oxalate diet's and calcium citrate cause a disappearance of the IC and vulvodynia in many women. Most say the IC goes first.It's unfortunate the IC association does not discuss this protocol. Oxalates bother my bladder more if not as much as the foods on the IC diet.

Many women have just one or the other , just because you get urethral symptoms does not mean you are destined for IC, remeber the urethra is sitting very close to where all the other pain is. Inflammation can irritate surrounding areas. Some women who have urethral burning have a tough time discerning whether it is the vaginal area(vestibule) or urethra, and vice versa. I can't tell you many women I talk to with IC who ask what vulvodynia is, when I describe it, they say, WOW, I think I have that, I thought it was just part of IC. Many with IC assume it is the urethra when they may have vestibulitis as well. and ofcourse most urologists are clueless.

Those who have one or the other are fortunate they don't have to deal with both. I personally felt IC was a nightmare till the vulvodynia hit, totally blew me away!!! For me it is way worse than IC, but then again, everyone is different.

Jackie

[Guest guest]

<< Has anyone else been told that vulvodynia is the same as interstatial

cystits but on the outside?

>>

Hi Lynn,

I have IC and vulvodynia. There is a link to the IC causing vulvar pain,

mainly due to the pelvic floor weakness, caused by the IC. Unfortunately,

most women aren't diagnosed in a timely manner when they suffer with IC.

I went years in pain with my vulvar. After having a multi bladder infection

and put on antibiotics for 3 weeks, I was tested for IC. I was suffering

with IC for years and didn't know it. My bladder has shrunk, and I am in a

catergory of 6 in severity and the highest catergory goes up to 10. If you

look up about IC, it does tell you that vulvodynia is a classic symptom to

IC. But they are not one in the same.

IC can cause vulvodynia, but other things can cause this too. For me, it is

the IC causing mine. I am going to an IC therapist and it is helping alot.

Look up IC and it will explain how it can cause vulvar pain.

Terry

[Guest guest]

I am going to an IC therapist and it is

helping alot.

> Look up IC and it will explain how it can cause vulvar pain.

>

> Terry

http://pw1.netcom.com/~jewel3/uti/bacteria.html

http://pweb.netcom.com/~jewel3/hopeforcure.html

Thanks for the info! I have been looking up IC and came across the

above two sites----they are connected by one is a story of someone

with IC and the other is the doctor who helped her get cured.

I hope all I really have is just a common UTI and not IC to go with my

vulvar burning! One more thing and I made explode!!

Lynn