Re: endometriosis, was female problem

[Guest guest]

Hello Betsy,

I was diagnosed with endometriosis through laparoscopy in 1999 ( I was 23). I

was eating a very poor diet with lots of grains and soy, etc. I managed to get

pregnant right after the surgery to remove the endo and finally changed my diet

to gf/cf (but still ate soy and icky oils, etc.) about a year postpartum of that

pregnancy. When my periods started again, 14 months pp, I got the endo symptoms

back. I then learned about raw food paleo diet and going on that diet got rid

of the endo symptoms and period pain. I'm no longer on that diet, but I notice

that what I eat definitely affects how my periods are month to month. I cannot

tolerate any gluten in any amounts. I have read that gluten intolerance and

endometriosis are connected. Also I can't eat beans or legumes without feeling

like my endo is flaring up. I don't know exactly what you mean by an NT diet

that you are following, but there still could be fine tuning you could probably

do to help your symptoms.

Also, I too had issues with bleeding midcycle and very large clots during

my period, along with having to take vicodin <sp?> for the pain each month. I

also had lots of nausea and migraines during my period as well. This stuff

doesn't happen now, as long as I am strict in my diet.... no gluten, beans,

legumes, past. dairy or cooked raw dairy, etc. I too have problems with waking

during ovulation and menstruation. I still haven't figured that one out. I am

hoping that I am healing slowly over the years with my diet and things will

improve.

Also, I had the clot issue and never used tampons, but I have discovered

that I am very sensitive to something in the disposable pads and now use cloth.

(I know that probably sounds really icky, but it really isn't all that bad. )

When I use a disposable pad ( I imagine it would be the same with tampons) I

get lots of weird pelvic pain that I don't get otherwise. weird, huh? I know

of many other women who have reported this same thing by the way.

As far as I know, the only way to tell if you have endo for sure is to have

the laparoscopic surgery and that is when they remove it as well. I guess it

has " gone away " when you no longer have symptoms or you go through another

procedure that shows it is no longer inside of you. Anyway, endo is so common

these days, that chances are you do have it. Also, I have always wondered if

some of those huge clots I passed weren't really a miscarriage that happened too

early for pregnancy to be detected. I think I would be concerned about the

extremely heavy bleeding you are describing though. Is it possible that it was

a miscarriage? I forgot if you mentioned that you are seeing a doctor for this

or not.

If I could do it all over again, I would have changed my diet to the strict

one I am on now instead of going through with surgery. I'm pretty sure I would

have responded to the high fat, gluten free, pasteurized dairy free diet back

then. Oh well! Live and learn.

Rebekah Fechner-

dh

dd Sierra (3/29/00)

dd Arabelle (4/6/03)

female problem, was Healthy House

A few times, I would have a light (but occasionally

moderately heavy) dark brown discharge accompanied by these dark

brown clots of something (tissue??) continuously between periods.

Which brings us to today. I'm 29 and I still require about 15 Advil

to reduce pain enough not to miss work. CLO and the NT diet has

helped some (I think). I don't get bad nausea or faint anymore.

During the last several years, I have noticed that during my period,

I discharge lots of these globby clots of dark red (almost black)

that I guess is uterine tissue sloughing off (???). Very recently

(last year) I developed a 2am waking around ovulation and

menstruation that is somewhat alleviated with really, really good

On my first day, I got up to go to the restroom and

found that been bleeding very, very heavily. So much, I had to go

home and shower!! Immediately after I removed my tampon, this huge

(about 3-4 " in diameter), dark brown clod shot out into the toilet.

It was kinda oval, and maybe .25 " thick, with slightly irregular

edges My other questions are how can you tell for sure if you

have endometriosis and/or fibroids while it's still early and what

can you do to get rid of them. And how do you know if you've

successfully gotten rid of them?

[Guest guest]

wow, rebekah - this is really interesting to me - now i have some (tiny!)

reason to look forward to starting my period again. i had the same story -

monthly love affair with a bottle of advil till i went on the pill. but now

that i'm gluten free and eating better and everything else, i'm kind of

anxious to see how things work!

hee. i have this vegan...friend...(she's my boss. i have to be friends with

her). her latest challenge to my already minimal tactfullness was: " gawd,

my periods never used to be this bad when i was a kid. i don't know what's

wrong with me...i feel awful every month and i can't figure it out "

/me sits biting tongue. luckily, i work from home!

-katja

At 11:27 PM 3/8/2004, you wrote:

>I was diagnosed with endometriosis through laparoscopy in 1999 ( I was

>23). I was eating a very poor diet with lots of grains and soy, etc. I

>managed to get pregnant right after the surgery to remove the endo and

>finally changed my diet to gf/cf (but still ate soy and icky oils, etc.)

>about a year postpartum of that pregnancy. When my periods started again,

>14 months pp, I got the endo symptoms back. I then learned about raw food

>paleo diet and going on that diet got rid of the endo symptoms and period

>pain. I'm no longer on that diet, but I notice that what I eat definitely

>affects how my periods are month to month. I cannot tolerate any gluten

>in any amounts. I have read that gluten intolerance and endometriosis are

>connected. Also I can't eat beans or legumes without feeling like my endo

>is flaring up. I don't know exactly what you mean by an NT diet that you

>are following, but there still could be fine tuning you could probably do

>to help your symptoms.

[Guest guest]

Thank you so much for sharing this. This has been really helpful and

given me a lot to think about.

<<<Also, I had the clot issue and never used tampons, but I have

discovered that I am very sensitive to something in the disposable

pads and now use cloth.>>>

Probably dioxins.

<<<When I use a disposable pad ( I imagine it would be the same with

tampons) I get lots of weird pelvic pain that I don't get otherwise.

weird, huh? I know of many other women who have reported this same

thing by the way.>>>

I feel an experiment coming on!

<<< I have read that gluten intolerance and endometriosis are

connected.>>>

I so did not want to hear this. Comments Heidi??

<<<I don't know exactly what you mean by an NT diet that you are

following, but there still could be fine tuning you could probably do

to help your symptoms.>>>

Yeah, there's probably a lot of fine tuning, and maybe some coarse

tuning too. :-)

Breakfast is usually ¼ cup yogurt with two egg yolks, coconut oil,

and butter oil. Lunch is some chicken/beef salad with celery sticks

or cucumber rounds with a ton of butter. Dinner is kombucha, salad

with almonds and oil & vinegar dressing, either pate or steak tartare

appetizers on sourdough toast or rice crackers, some broth-based

veggie soup, meat, veggies, kraut or kimchi, and something starchy –

usually sweet potato or potato, sometimes yogurt with honey and eggs

or custard, and occasionally a homebrewed beer. And chocolate on a

rare occasion. If my meat wasn't beef, I make a hash of beef,

sausage, spinach, onions, peppers, eggs, and fried potatoes. Most of

these servings are pretty small; it's not quite as much as it sounds

like. About the only gluten I'm exposed to is whatever is in the

sourdough, rice crackers, and beer, and breading/buns for the main

course. And I guess whatever is floating around my kitchen from my

wedding cake making days. But, that's probably enough gluten to do

it.

<<< I too have problems with waking during ovulation and

menstruation. I still haven't figured that one out. I am

hoping that I am healing slowly over the years with my diet and

things will improve.>>>

Estradiol drops during ovulation and the beginning of menstruation

which causes that early morning waking and is really common during

the first stages of premature ovarian decline. From what I've read,

eventually adrenal function and hormones will normalize, but

sometimes that can take a long time. Schwartzbein says that they

will normalize in her patients but usually recommends hrt (natural

estradiol, not premarian) in the interim because it's much faster and

more comfortable that way.

<<<As far as I know, the only way to tell if you have endo for sure

is to have the laparoscopic surgery and that is when they remove it

as well. I guess it has " gone away " when you no longer have symptoms

or you go through another procedure that shows it is no longer inside

of you. Anyway, endo is so common these days, that chances are you do

have it.>>>

So, unless it develops into a fibroid and can be felt, surgery is the

only way to know for sure? I guess since it's so common and I have

so many of the symptoms that I want to get rid of anyway, knowing

for sure what it is isn't necessary. And it seems that

the " treatment " for endo, fibroids, cancer, cancer prevention, and

hormone balance is about the same anyway.

<<<I forgot if you mentioned that you are seeing a doctor for this or

not.>>>

I'm not now, but I plan to go when I get my hormone levels tested.

In Arkansas, we only have mainstream doctos/gyns so I want to know as

much as possible before I go so I don't get talked into something

stupid. If I decide there's something really serious going on,

Dallas is only 5 hours away and surely there's a good doctor there.

<<<Also, I have always wondered if some of those huge clots I passed

weren't really a miscarriage that happened too early for pregnancy to

be detected. I think I would be concerned about the extremely heavy

bleeding you are describing though. Is it possible that it was a

miscarriage?>>>

I'm glad you mentioned this cause at first I wondered if it was a

miscarriage. I have no idea what one looks like and this clod looked

different that the smaller clods. It doesn't sound like a fibroid

either. I use the fertility awareness method and was charting last

month. During a moment of complete stupidity (long explanation), I

had sex on my peak fertility day, with no form of birth control.

That was on the 12th of February. I had a period in January and

December so I know I could have only been one month along, if I was

even pregnant. I'm not sure how many weeks that is as I'm not really

clear on how they are counted. I was two days late starting my

period, but I've been irregular in the past. I mentioned the

miscarriage possibility to my husband and we looked in our biology

text book and decided that the 1 month fetus was too small to be

detected. I was still wondering if placenta and other fetal

accoutrements would be as big as the clot I passed. Also, mine was

oval and fairly flat. My biology book makes it look spherical.

<<<If I could do it all over again, I would have changed my diet to

the strict

one I am on now instead of going through with surgery. I'm pretty

sure I would

have responded to the high fat, gluten free, pasteurized dairy free

diet back

then. Oh well! Live and learn.>>>

How does pasteurized dairy affect endo? I know that in general raw

milk is way better than raw, and you're better off staying away from

ultra-pasteurized/homogenized milk, even the organic, hormone-free

stuff. But do you know what it is about pasteurized dairy that is

bad for endo? Raw milk is a 4-hour trip, one-way, for me so I almost

never have it. I buy yogurt, which has been pasteurized, and stir in

butter oil add back the stuff that is removed during pasteurization.

Do you think there could be a problem with this? Also do

beans/legumes affect endo specifically, or is that just a personal

sensitivity?

Thanks again,

Betsy

[Guest guest]

Hello Betsy,

----- Original Message -----

From: Betsy

Sent: Tuesday, March 09, 2004 2:35 PM

<< I have read that gluten intolerance and endometriosis are

connected.>>>

<I so did not want to hear this. Comments Heidi??>

I wish I could find the info for you, but it has been a long time since I looked

into this stuff. Here is an article, though not scientific, of another woman

who was helped by a gf diet who had endo.

http://www.gluten-free.org/hoggan/endo.txt

I know that having a gluten intolerance and continuing to eat gluten messes up

hormones very much so, but I am pretty sure I remember reading something

specifically about an increased risk of getting endo if you have a gluten

intolerance. I will search some more later and post if I find anything.

<<About the only gluten I'm exposed to is whatever is in the

sourdough, rice crackers, and beer, and breading/buns for the main

course. And I guess whatever is floating around my kitchen from my

wedding cake making days. But, that's probably enough gluten to do

it.>>

Yes, this is way more than enough gluten to do it. Even invisible trace amounts

are enough for me.

<<Estradiol drops during ovulation and the beginning of menstruation

which causes that early morning waking and is really common during

the first stages of premature ovarian decline.>>

Yikes! Somehow I seriously doubt that I have premature ovarian decline. I

probably have some slightly out of whack hormones still, but I feel like I am

getting better, usually every month even.

<<So, unless it develops into a fibroid and can be felt, surgery is the

only way to know for sure?>>

Where did you hear that endo develops into a fibroid? I have never heard of

that. I understand that many people who have endo get fibroids, but endo does

not develop into fibroids as far as I know. Just because you can feel a fibroid

has nothing to do with whether you have endo or not. Two different things, I am

pretty sure.

<<And it seems that

the " treatment " for endo, fibroids, cancer, cancer prevention, and

hormone balance is about the same anyway. >>

Yes, I think for me anyway, I would change my diet and take the high cod liver

oil dosage for a while before I took hormones or underwent surgery, if I could

do it over again that is.

<<I was still wondering if placenta and other fetal

accoutrements would be as big as the clot I passed. Also, mine was

oval and fairly flat. My biology book makes it look spherical>>

I have never knowingly had a miscarriage, but from what I have heard, big clots

are passed as well as heavy bleeding, just like you described. Also, I doubt the

tissues expelled with every miscarriage look and measure just like a medical

textbook says.

<<How does pasteurized dairy affect endo? I know that in general raw

milk is way better than raw, and you're better off staying away from

ultra-pasteurized/homogenized milk, even the organic, hormone-free

stuff. But do you know what it is about pasteurized dairy that is

bad for endo? >>

I don't have any data about specifically how past. dairy affects endo.

Pasteurized dairy is bad in general, and anyone with serious health problems

should avoid it like the plague, IMHO. Have you looked at www.realmilk.org? I

think they have some info about how bad past. milk is and what it can do to your

system. Also, I think any dairy, whether raw or past. can affect hormone levels

in some folks. If I eat any heated dairy, I get very ill, and so does my oldest

daughter, so that is why I stay away from it. OH and also, when I was eating

past. dairy everyday, I did not get ill like I do now after eating it. Instead

I had chronic, debilitating symptoms like fatigue and menstrual problems all the

time.

<<Also do

beans/legumes affect endo specifically, or is that just a personal

sensitivity?>>

I think it is the same with bean/legumes as it is with heated dairy. I know the

paleo diet helps women with hormonal imbalances, just from anecdotal evidence I

have seen. They don't eat any grains, beans, legumes or dairy of any kind, nor

do they eat starchy veggies either. I think this is why I got better so quickly

on the raw paleo diet. Now I eat mostly cooked meat, along with raw and cooked

veggies and some raw dairy and do just fine on that too.

Anyway, good luck with however you decide to treat this.

Rebekah