Re: [VPD]to Miranda: bladder + endo questions

[Guest guest]

Hi Miranda,

I have a history of IC, endo and LS. Your symptoms sound alot like the ones I used to have. I too had terrible back pain, thigh pain, cramps and unusually severe bloating for years. In 1990, the pain was so severe I couldn't stand it anymore. I went to at least 6 different drs. I kept telling them that I thought in was my appendix. But, each one of them said my symptoms weren't consistent with appendicitis. The seventh doctor was the charm. At my first visit he said it sounds like you have endometriosis (which I had never even heard of) or its your appendix. He said lets go in and see whats going on. One week later I had a laproscopy and an appendectomy. The endometriosis was so severe, it had infected my appendix. I was finally pain free( for a little while).

However, the endo kept coming back (although not as bad as the appendix episode). I have three daughters. Every time I got pregnant, my endometriosis would flare up and I would always get a terrible yeast infection. Finally after 11 years of endo I had an oopherectomy ... and I finally got relief from those terrible abdominal pains. Has your doctor recommended a laproscopy?

Also, I get some back pain with the IC and bladder infections... however, the main problem I have is that terrible pressure and urge that I have to urinate 24/7 as well as the miserable burning. Are you experiencing those symptoms?

Sorry this is so long... but your info reminded me of me when I was your age.

in MI> > > > > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> to search our archives, files, articles, etc.> > ***

[Guest guest]

No my doctor hasn't recommended a laproscopy, but I'm going to be

demanding it pretty soon. Something's gotta give! Yes, I also have

the urge to urinate but I never had that before my VV. It began

around January (after I'd had VV for about 4 months.) I was

diagnoses with a bladder infection in March, on medication, and had

a urine sample that said I was better, but I was still running to

the loo quite frequently. It subsided right after the meds, and them

came back quite fast. I was never sure if it was the bladder

infection that just lingered or what...who knows?

I also have bloating, but it has got a bit better with regular

exercise. I never understood why I had bloating because I always ate

really well. I come from a very health conscious family of

homecooked meals! Food sensitivity does run in the family so maybe

it's that. The one thing that really bugs me is that I have almost

constant pain in my upper right side, but I just blamed it on the

bladder infection because that's around the time it started. And it

seems to get worse before my period (like now) It feels similar to

the pain in my legs. Like a stabbing aching pain. the pain in my

legs is more recent though, started the last month or two. I also

have some burning but it's not by any means severe- it's usually if

I have been sitting down a long time or wearing tight pants, or

sweating a lot! lol. Anyway I hope to be tested soon now that I've

ruled out what I can with blood tests. sigh...

Miranda

[Guest guest]

Miranda,

If you do indeed have endo I wouldn't wait til later to be

requesting the lap. The reason I say this is b/c if you do

indeed have it and keep waiting and waiting til you can't stand

it the endo will destroy your pain threshold in ways you can

never imagine. I know b/c it happened to me. Long before my

endo diagnosis I had a high pain threshold and could wait til I

couldn't stand the pain when I had my last wisdom tooth pulled

to take the medicine but since the diagnosis of endo that has

all changed.

Some drs prefer to be conservative on a regular basis instead of

being aggressive and taking the plunge to find out once and for

all. Also, make sure that this dr knows all his colors

including recognizing clear lesions (they will look like drops

of water) b/c if not then a lot of endo can be missed and make

the dr think that there is none in there when there is.

Endo can irritate the nerves to the vulva (and yes endo can grow

on it as well) in addition to other areas of the body besides

the pelvic area. And yes endo can grow on the nerves, but one

area that endo grows that can also cause leg pain is the

uterosacral ligaments.

I wish you well hun and if you have other questions for me pls

feel free to e-mail me off list if you prefer.

Kristy

__________________________________________________

[Guest guest]

, what meds are you on for IC. I have been on 20 mg of Elvail for sixteen years, and apart from stress flares, it works well. Also have LS. I take Elvail at 5:30 at night and by 8 am pain free. It hits me usually late afternoon, but I have never had a painful evening while on Elvail.

Re: to Miranda: bladder + endo questions

Hi Miranda,

I have a history of IC, endo and LS. Your symptoms sound alot like the ones I used to have. I too had terrible back pain, thigh pain, cramps and unusually severe bloating for years. In 1990, the pain was so severe I couldn't stand it anymore. I went to at least 6 different drs. I kept telling them that I thought in was my appendix. But, each one of them said my symptoms weren't consistent with appendicitis. The seventh doctor was the charm. At my first visit he said it sounds like you have endometriosis (which I had never even heard of) or its your appendix. He said lets go in and see whats going on. One week later I had a laproscopy and an appendectomy. The endometriosis was so severe, it had infected my appendix. I was finally pain free( for a little while).

However, the endo kept coming back (although not as bad as the appendix episode). I have three daughters. Every time I got pregnant, my endometriosis would flare up and I would always get a terrible yeast infection. Finally after 11 years of endo I had an oopherectomy ... and I finally got relief from those terrible abdominal pains. Has your doctor recommended a laproscopy?

Also, I get some back pain with the IC and bladder infections... however, the main problem I have is that terrible pressure and urge that I have to urinate 24/7 as well as the miserable burning. Are you experiencing those symptoms?

Sorry this is so long... but your info reminded me of me when I was your age.

in MI> > > > > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> to search our archives, files, articles, etc.> > ***

[Guest guest]

I guess everyone knows that caffeine is really bad for Endo..

Re: to Miranda: bladder + endo questions

> Miranda,

>

> If you do indeed have endo I wouldn't wait til later to be

> requesting the lap. The reason I say this is b/c if you do

> indeed have it and keep waiting and waiting til you can't stand

> it the endo will destroy your pain threshold in ways you can

> never imagine. I know b/c it happened to me. Long before my

> endo diagnosis I had a high pain threshold and could wait til I

> couldn't stand the pain when I had my last wisdom tooth pulled

> to take the medicine but since the diagnosis of endo that has

> all changed.

>

> Some drs prefer to be conservative on a regular basis instead of

> being aggressive and taking the plunge to find out once and for

> all. Also, make sure that this dr knows all his colors

> including recognizing clear lesions (they will look like drops

> of water) b/c if not then a lot of endo can be missed and make

> the dr think that there is none in there when there is.

>

> Endo can irritate the nerves to the vulva (and yes endo can grow

> on it as well) in addition to other areas of the body besides

> the pelvic area. And yes endo can grow on the nerves, but one

> area that endo grows that can also cause leg pain is the

> uterosacral ligaments.

>

> I wish you well hun and if you have other questions for me pls

> feel free to e-mail me off list if you prefer.

>

> Kristy

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

Everyone does not know that caffeine is bad for endo and it's

also not true in all cases.

I don't have a lot of caffeine but I have a lot of problems with

my endo and it's b/c of the way my body deals with it. That's

why it will be a matter of time before drs as a whole have to

realize that this is an autoimmune disorder. I just they would

realize it now but it will take time.

Dietary changes don't help everyone who has endo but for those

that it does help that is good.

Kristy

__________________________________________________

[Guest guest]

When I took my nursing course about fifteen years ago, this was taught, but

I know that different docs have different opinions about this.

The medical profession has a real problem understanding autoimmune diseases

apparently, or refusing to believe a lot of diseases are.

Re: to Miranda: bladder + endo questions

> ,

>

> Everyone does not know that caffeine is bad for endo and it's

> also not true in all cases.

>

> I don't have a lot of caffeine but I have a lot of problems with

> my endo and it's b/c of the way my body deals with it. That's

> why it will be a matter of time before drs as a whole have to

> realize that this is an autoimmune disorder. I just they would

> realize it now but it will take time.

>

> Dietary changes don't help everyone who has endo but for those

> that it does help that is good.

>

> Kristy

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

The education about endo in the Medical and Nursing Schools is

very lacking even now.

And that's why it's hard for most medical professionals to

understand that this is going to some day be labeled an

autoimmune disease. If you had asked me almost 10 years ago

(and even 5 years ago) if I thought that endo was an autoimmune

disorder I would have told you that you were nuts. I'm

fortunate that my dr believes that endo has autoimmune

components. Did you know that endo can make its own estrogen

and even make its own blood vessels (just learned this myself

pretty recently).

It is true that caffeine does affect some women with endo if

they eat ingest enough of it so that their pain is worse. So

for sure cutting it out is best for them.

I wish dietary measures were the answer to this whole problem

for everyone with the disease but it's not.

Even though we still have a long way to go we've come along way

in understanding endo even compared to the almost 10 years that

I've had this as an official diagnosis.

Endo can also irritate the nerves. That's why I'm hoping that

this lap will tell me a lot about what's going on (it will be my

4th overall) and hope that with what's there it will ease my

vulvodynia some and even my fibromyalgia.

I've learned more from other ladies with endo that not only I've

talked to one on one and thru organizations such as the

Endometriosis Research Center. And most of them know more about

the disease than most drs and in some cases nurses.

Unbelievable isn't it?

Many drs are still holding on to outdated ideas, and some

medical schools (I heard about one in NY b/c the relative of one

of the ladies on one of the endo lists I'm on) are teaching that

endo is inoperable and that is not correct. With a dr

experienced with cutting out the disease as much as possible it

gives the best chance of relief.

I've met a number of ladies who are nurses but have endo as

well. And several of them were surprised to learn more about it

than what they were taught in their Nurse's training.

More work has to be done to update the training programs for

both Nurses and Doctors b/c we are having a hard time getting

the word out as far as the truth of this disease.

If you ever want to check out the ERC pls go to their website

at: http://www.endocenter.org

If you have any other questions for me, pls feel free to e-mail

me offlist if you prefer.

Kristy

__________________________________________________

[Guest guest]

Hey guys, thanks so much for your responses. It's really

appreciated, regardless of whether or not this is what I have.

It's funny you brought up the caffeine thing. Well when I got my

second bladder infection I cut out all alcohol, coffee and tea and

anything caffeinated. It is a weak spot for me. I'm not a big

drinker, but I love coffee in the morning. I was down to one half

cup a day right before I got my bladder infection, but the infection

prompted me to cut it right out.

The change is amazing! I am falling asleep and waking up after eight

hours instead of ten. I have more energy and I don't have naps. I

also feel that my symptoms have lessoned. I can't remember a time in

the past few years I haven't had a coffee in the morning...well for

me it's going to have to be cut. Sacrifices my friends....

I have another doc's appt. next Monday, so hopefully I can bring up

my concerns than. My mom and I both agree that I have to be a more

agressive patient....it's hard though!

Also I'm really annnoyed that I STILL haven't got my period yet!!!

Do you guys go to the gyn even with a period? icky...oh well I don't

care if they don't care. I was expecting it over a week ago so what

can I do? I also read that irregular periods can happen after you go

off the pill, so that could be a contributing factor for sure, if

it's not endo. Well, I'm still going to pursue the endo, because I'm

convinced I have enough symptoms it's worth a look. In the meantime,

just trying to stay coffee free. sooo hard! but sooo worth it!

ttyl

Miranda

>

>

> When I took my nursing course about fifteen years ago, this was

taught, but

> I know that different docs have different opinions about this.

>

> The medical profession has a real problem understanding autoimmune

diseases

> apparently, or refusing to believe a lot of diseases are.

>

>

>

>

>

>

>

> Re: to Miranda: bladder + endo questions

>

>

> > ,

> >

> > Everyone does not know that caffeine is bad for endo and it's

> > also not true in all cases.

> >

> > I don't have a lot of caffeine but I have a lot of problems with

> > my endo and it's b/c of the way my body deals with it. That's

> > why it will be a matter of time before drs as a whole have to

> > realize that this is an autoimmune disorder. I just they would

> > realize it now but it will take time.

> >

> > Dietary changes don't help everyone who has endo but for those

> > that it does help that is good.

> >

> > Kristy

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >