Re: Terry & Candace, on Vulvodynia and Interstitial Cystitis

June 26, 2000

Candace wrote: Last Summer, my gyn thought I might have IC. I went

to a urologist. We couldn't decide whether or not I hac IC without

the invasive test. . . I too, in January was diagnosed with

Vulvodynia.UGH.What are you doing for your IC.Can you beleive ther

are so many of us with the same description of the problem?

Terry wrote:> I have been recently diagnosed with IC and evidently

I must have had it for a very long time before getting a test done on

my bladder. . . I was diagnosed first with Vulvodynia in January by

a GYN.************************************************************

Hi, I think there are many women in the V-group who have experienced

urinary tract infection symptoms and have had no bacteria present in

most or all of the cases for over a period of six months. That seems

to be the medical criteria, which may lead to either having a

cystoscopy (the urologist looks in the bladder for Hunner's ulcers--

red spots on the bladder, as I understand it) or since that's not

always conclusive, some doctors just go ahead and treat for IC. Some

physicians prescribe Elmiron for IC without a conclusive IC diagnosis.

For me, oxybutnin calmed the bladder spasms, and low dosage elavil

helps with pain. My physician prescribed the Elmiron and I had the

prescription filled but so far haven't taken it because without

conclusive evidence, I don't want to risk the side effects until I

absolutely have to. Also, right now, I have the good fortune of

having two doctors who have volunteered to battle their medical group

so that I can continue to go to Dr. , so I'm just dealing with

that for now--that just happened last Friday!

So that's one of my questions, I'm hesitant about taking Elmiron--

Terry, how long have you been taking Elmiron in what dosage and what

effects/results are you experiencing? What else do you do for your

IC? By the way, thank you for the good energy you put into your post

in response to my possible IC. I really appreciate it, and it has

reminded me of what needs to be done on that question.

Candace, on your question about what I am doing for IC: I have a

urine test kit my doctor gave me, so I always test my first

urine in the morning if I have any UTI-like symptoms. This is

a special case situation that my doctor offered to me. Before that,

I was running to Urgent Care, getting no-bacteria urine results, but

still getting antiboitics, getting yeast infections, applying yeast

cures, and now getting V.

So this might help if you want to know more about IC:

1. I go to both official sites on the web and follow their info.

Type in Interstitial Cystitis in your search engine. Usually

webcrawler search engine works best for me.

2. During UTI-type flares, I take 1/4 t. of baking soda first thing

in the am with at least 12 oz water.

3. I drink water all day.

4. I follow some of the stuff on the IC diet that seems obvious for

preventing bladder infection--like deleting my favorite, Mexican

foods, or alas, chocolate. you can find that info on the IC sites.

5. The book " You Don't Have to Live With Cystitis, " (which for me is

a lie, by the way) was helpful on foods to avoid. The author is Dr.

Larrian Gillespie.

6. I take two or three Prelief tablets before eating anything that

might be spicy and might hurt the bladder. It's OTC calcium

phosphate, usually found in most drugstores.I found that info through

the Interstitial Cystitis Foundation, also on the web.

7. For my morning coffee (which is the one thing I really need to go

on living :)I use a non-acid coffee called Kava. I found it in the

Von's supermarket, (not to be confused with kava kava, a

supplement). I mix 1/2 cup regular brewed coffee with 1/2 cup Kava--

then pour it into foamed goat's milk. That's my treat--a relatively

non-acid latte. Followed by another 12 oz of water. Sometimes I get

vulvar burn from it and sometimes I don't.

The question that bugs me is whether inflamed tissue in the vulva, in

some cases, causes UTI-like bladder symptoms--sort of a referred pain

syndrome.Here's why I am wondering: Three days ago when I had UTI-

like pain, I looked at the vulva with the mirror and flashlight

(thanks to Dee's info). I noticed that there is a deep red vulvar

inflammation just above the urethra, which is not always there. Even

putting water on that area after urinating causes a bad " burn " for

about 10 minutes. With the vulvar flare located so close to the

urethra, I wonder about the V/IC connection. Any one have ideas

on this?

Healing thoughts, Dory

June 26, 2000

Hi Dory,

I wanted to answer some questions and let yoy know that if you are having any

type of urine leakeage, that would cause the irritation around the uretha. My

doctor had me buy A & D Dry Lotion and A & D personal wipes. It is made with that

in mind. It soothes and heals chaf skin from irritation and also neturalizes

the acidty and odor.

This has helped me tremendously. You may need the pharmacy to order it for

you, I did, since its not a common stocked items. These 2 products shouldn't be

confused with A & D ointment, which is antibiotic ointment.

The items I mentioned fall under the Personal care products of A & D Personal Care

Dry Lotion, A & D Personal Care wipes.

Also I take elimron 2 capsules 3x per day. I haven't showed any effects yet,

but I have only started taking them June 8th. It could take up to 6 months

before I show signs of anything. I do drink plenty of water and take anything

to counter act any acidity I may eat, which isn't that often. Coffee is my

worst down fall.

I was given a prescription to have a compound pharmacy make me 10% lidocaine to

apply to the area when pain was bothering me. I am also seeing a special PT on

Pelvic Floor Dysfunction. This PT has helped so much, I want to change careers

and do what she does. She is special trained in the pelvic floor and vaginal

muscles. She had to go to a special school for this and there aren't many of

these types of therapist around. This PT had gotten me out of pain on my first

visit. You can ask questions about what you want to know in particular, and I

will respond. Hope this helps

Terry

June 30, 2000

Hi Dory,

Yes, the lidocaine compounded also can be made to a stronger strength if

needed. That was the purpose, but he made sure that it was not compounded

with what KY jelly is. Mine was a white cream texture, which is supposed to

keep irritation from happening. This has worked really well for me. 10%

works much better than 2% which is the highest concentration premade through

a prescription.

The A & D products are a life saver. They don't cause any kind of irritation

and promotes healing. It also controls the acidity when urine can touch that

broken skin.

I highly recommend this for any type of irritation where the pH balance is

causing irritation.

My PT, Wednesday hooked me up to a computer with electrodes, similar to bio,

but not with a vaginal probe. The electrodes were placed outside my anus on

both sides and on my pelvic and abdomen. She said that a probe could be

used, but the results are identical when looking for pelvic and abdomen

dysfunction. I did get to see my level of muscle spasm in my pelvic and

vaginal area. It is at a plateau. but a high plateau. My muscles do not

relax at all. It stays in a constant tight spasm. I was told that I can

isolate the pelvic and abdomen muscles which is good, but both are tight.

Since I know how to isolate, bio wouldn't be an advantage for me. I know

what muscles to use already. I just need to train my muscles to do certain

exercises constantly through the day and night, to tighten and release.

Hopefully this will break the cycle of always being tight.

My PT does stretching of muscles and deep massage of the muscles in my pelvic

area, lower and middle back, thighs, back of upper legs and buttocks. This

deep massage is very painful and I don't mind telling you I am screaming

through the whole thing. But when all is done, which she works straight on

me for an hour, I feel great when I get up and leave therapy. My pelvis

which is rotated always fall back in place when she does this therapy. No

manipulation of my back like a chiropractor. I feel my rotation fall back in

the normal spot and my pain is pretty low after that. The flow of blood and

oxygen to the pelvic and vagina area takes the pain away down there.

This is why I chose the more aggressive PT, the sooner you can restore the

blood flow and oxygen in the pelvic and vag area, the sooner the inflammation

will subside, which is where the pain comes from. It is hard to explain, but

each problem leads to the ultimate pain we all suffer.

For what ever reason the muscles get tight in the pelvic area, this makes the

muscles tight in the vagina. When both are tight, this causes poor blood

flow and poor oxygen circulation. Once the circulation is inadequate, this

causes inflammation, which we all have in common with chronic inflammation

and high white blood cell count when we have cultures done. The end result

after the chain of events, is our pain that we experience.

I didn't believed this and still wouldn't, if I hadn't went back on my word

of never going to PT. I swore I would never go to PT. I did go just for the

sake of saying at least I tried. This was the solution for me as it turned

out. This all makes sense, and biofeedback is a way to go also, but hands on

PT is much faster with getting to those pain free days.

I was very skeptical when I went to my first PT, leaving there with hardly

any pain convinced me, and my vaginal pain is much better. It is not gone,

but is tolerable to the point I can get on with my life without my

concentration on just my vaginal pain. I still have a ways to go before by

muscles are going to relax, but getting the blood and oxygen circulating

makes all the difference in getting the tissue back to a healthy state and

out of inflammation. Does this make sense to you?

I would be happy to answer any other questions you have, hope this info helps.

Terry

June 30, 2000

Hi Dory,I wanted to answer some questions. . .My doctor had me buy

A & D Dry Lotion and A & D personal wipes. It soothes and heals chaf skin

from irritation and also neturalizes the acidty and odor. . . The

items I mentioned fall under the Personal care products of A & D

Personal Care Dry Lotion, A & D Personal Care wipes. Also I take

elimron 2 capsules 3x per day.I was given a prescription to have a

compound pharmacy make me 10% lidocaine to apply to the area when

pain was bothering me. I am also seeing a special PT on Pelvic Floor

Dysfunction. This PT has helped so much. . .Hope this helps--Terry

************************

Terry, I printed out the above info and am looking into much of it--

interesting idea, too--having the lidocaine compounded--eliminates

some of the additives, etc., that cause dermatitis, I suspect. Does

your PT use biofeedback training or what method does she use? Thanks

for your time,and I am glad you are finding pain relief after all

you've been through! Healing thoughts, Dory

July 1, 2000

Terry wrote:> Yes, the lidocaine compounded also can be made to a

stronger strength if needed.The A & D products are a life saver. They

don't cause any kind of irritation and promotes healing. It also

controls the acidity when urine can touch that broken skin. . .My PT,

Wednesday hooked me up to a computer with electrodes, similar to bio,

>but not with a vaginal probe. . .> Since I know how to isolate, bio

wouldn't be an advantage for me.. .> My PT does stretching of muscles

and deep massage of the muscles in my pelvic area, lower and middle

back, thighs, back of upper legs and buttocks.The flow of blood and

oxygen to the pelvic and vagina area takes the pain away down

there. . . Does this make sense to you?>Terry

********************************************************************

Terry, thanks so much for the fuller explanation you gave on the

above--I excerpted here so that others can follow our gist. Yes,

it does make sense, so I am printing your complete explanation out so

that I can ask Dr. about this factor at my appt on July 10.

Finding the right combination of meds, topicals, diet, and exercise

is probably the ultimate answer. Since we didn't get this condition

overnight, it's likely that the skin has to respond and renew, as Dee

has patiently helped us to understand. The massage therapy probably

provides the right environment to speed that along. It's helping you

greatly with the pain, which is a miracle in itself, right?

Healing thoughts, Dory

July 1, 2000