Re: I have much less pain.
From: Yen (anonymous@obgyn.net)
Sat Mar 31 12:10:59 2001
Hi Pep and all,
Pep, no, I didn't see the Moyers Report but did see it mentioned in your
website.
Re my estrogen level, yes, I think you're correct, its probably fairly
high -- although I thought the bc pill was supposed to lessen the
estrogen compared to what the body generally would produce on its
own????? I truly don't know, but I thought my internist had said
something to that effect???? If anyone knows the correct answer, please
jump in and educate me :o).
Actually, from what I can recall, it seemed that when I got back on the
bc pill (as I was having tremendous problems re my period/symptoms
greatly worsening), the endo pain seemed to flare out of control???? --
I truly don't know whether it was the pill, coincidence, or something
else which began the all-out-flare which was the volcanic eruption of my
endo pain in the sacral region -- it felt like hot lava burning deeper
and spreading further throughout the back -- it was a living hell -- had
MAYBE 4 or 5 livable days a month (those 4 or 5 days were during the 7
day "placebo" pill of my cycle -- did not have periods on the 7 days off
-- did, however, have breakthrough bleeding during the
mid-cycle/ovulatory stage every month). This went on for almost a ?year
until I had endo surgery (a little over two years ago, today). At the
time of surgery, the doc said my endo was Stage 3 (felt like Stage 10
LOL).
Re your feelings on surgery, if you do not feel comfortable expressing
your feelings on the forum, please feel free to email me on that or any
other subject:o) -- yentag@hotmail.com.
As for Diet and Endo Re Endo Specialists, I have not seen at Redwine's
site or any other "Specialists" site, the mention of diet and endo. I
have only seen ?one dr's site in which he advised his endo patients re
diet, dairy, etc.. I found his site when I did the +dairy+endometriosis
Yahoo search -- I don't remember the dr's name off the top of my head
(I'd have to do another search to find it).
Yes, Pep, I am receptive to any suggestions you have re my situation --
so what is it that you have in mind LOL -- you suggested increasing the
net worth of my urine LOL -- which supplement are you suggesting? I have
not tried the Black Currant Oil. I have basically operated on the
theory of exclusion/elimination as opposed to adding to my diet. So
far, this has been very helpful in controlling the demon:o). The other
evening, I had a bean thread with fish sauce dish for dinner (mung bean
thread) -- the next day was not a good one (so was it the mung bean
thread, the fish sauce, or what -- maybe the mung bean thread is
estrogenic????) I just did a Yahoo search on +mung bean+estrogen and
found that the mung bean is, indeed, estrogenic LOL!
The pesticides/insecticides are a problem. My mother had, for years,
used an exterminator who sprayed her house. She also sprayed freely
with the supermarket poisons for as long as I can remember. Back to the
exterminator -- his son was diagnosed with testicular cancer at the age
of 20! I feel sure that the father's chemicals quite possibly had
something to do with the son's cancer -- the father/exterminator is a
solo practitioner and stores his chemicals on his living premises.
Last night I found some ants in the bathroom and am now wondering how I
can remedy the situation w/o poison! I don't know where the ants are
coming from -- sneaky little devils LOL.
Yes, I need to work toward getting off of the bc pill -- I am very
apprehensive about doing so though.
Pep, just where are you (what country) in this sub-tropical climate LOL?
And what kind of exciting, great career is it that you have which
enables you to jet about the globe, taking refuge in enticing corners of
the world -- tell us, let us live vicariously LOL !?!:o)
Ciao for now, take care,
Yen
At Thu, 29 Mar 2001, pep wrote:
>
>Hi Yen and everybody, (it's a little long)
>
> Thank you so much for your kind comment on my web page, Yen.
>I still have many things I want to add but..well, I am trying to update
>everyday. (Did you watch the Moyers Report?) About the thread, I was
>just thinking maybe I would have to cut them off soon - It was getting
>kind of long. Sorry Yen, for incovenience.
>
>About your estrogen level, I suppose we both suspect it might be on the
>high side..maybe part because of bc pill, but I thought it might be if
>eating a few sprouts raises the level where it gives you flares..
>
>About surgery, I don't think I should express my thoughts or feelings
>about it here. I have read Dr Redwine's theory and treatment for
>endometreosis. I just hope he is not saying to his patients that they
>don't have to be careful about what to eat or about their lifestyle any
>more or anything like that after surgery..I'm sure he is not. I have
>been pain-free for 3 months and to tell you the truth, occasional dairy
>(not a big amount, but non-organic) does not give me flares at all any
>more. But I am not going to start now. I believe it's about
>accumulation. I've been working on not taking into my body any more of
>Dioxin, hormons and other scary toxin stuff - endocrine disrupters and
>carcinogens! - from food, water and other sources for 6 months.
>(At the same time, trying to get rid of those things I already got in my
>body and also to strengthen my immune system.) And my symptoms gradually
>subsided and after 3 months, I did not have pain. Of course how you
>should go about it and how soon you see the result have to depend on
>individual, I imagine. How far the endo level (stage) is, how strong
>your immune system is and etc.
>
>I'm not quite sure what stage your endo is at Yen, but you did say your
>symptoms are relatively under control and I also felt you might have
>room for expanding your list of things to do (and not to do).
>
>I do know somebody who had endometrial cyst (chocolate cyst) grapefruit
>size and her cyst actually dissipated during the few weeks she was
>waiting for the surgery. I am not making this up, Yen. She had the
>surgery date scheduled and everything. A few days before the surgery
>she went to have the final check up for the surgery and they could not
>find the cyst. In her case, she told me she really didn't do much, some
>meditation, just a lot of strong wish and thoughts..That happened quite
>a few years ago and now she is really health minded and endo never came
>back to her. I wished I had as strong a will and mind-body connection
>as hers but I don't and I need lots of outside help like watching what
>to eat, supplements and so on.
>When she first told me her story, my symptoms were just getting really
>bad and I couldn't help having a little envy. But her story gave me
>some encouragement as well.
>
>Please understand that I'm not, in any way trying to criticize anybody.
>I truly wish people who had surgery pain-free days forever and I don't
>mean to give any suggestion to people who are thinking about having
>surgery.
>
>And Yen, do you think you want to try expanding your list -including
>making your urine even a bit more expensive ;) -and see if you'll feel
>better while you are still on the pill? And if much improvement, do you
>think you might feel a little more comfortable thinking about bye-bying
>to bcp?
>
>>***Pep, what did your diet most consist of in the few years prior to your endo dx? Did you consume a lot of dairy..
>
>Yes, other than my tea with milk (by the way I kind of meant more about
>giving up caffeine there and boy, caffeine gives me so much trouble, but
>that's a story for another day), I ate quite a bit of cheese and yogurt.
>I used to live in Italy and I love pizza and pasta. I have not had any
>meat for 12 years or so. I was eating some fish during the few years
>before endo - I still do.
>But Yen, my bigger sources I believe are:
>A. in certain period (a couple of years) of my life, I had to use lots
>of lots of disinfectant sprays,
>B. I live in sub-tropical climate and mosquito control trucks and
>sometimes helicopters come and shower the poison over everywhere.
>
>Well, A. was some years ago, but those chemicals stay for long time.
>Dioxin's half-life is 5 to 10 years and that means it can stay 10 to 20
>years in our body before it dissipates. I don't know what was in the
>disinfectant, though I'm sure lots of hormon disrupters I inhaled.
>B. is unavoidable as long as I live here and right now it's not so bad
>yet, but in a few weeks, the season comes and oh, come to think of it,
>my pain did get worse during the summer months and I got better toward
>winter..It scares me to think about it. I guess I'll just stay in the
>house with all the windows closed. At least I'd inhale it a little
>less? I used to use a lot of insect repellent and this is a scary stuff,
>too. Not mentioning hot food in styrofoam and plastic containers..Oh
>no, I still haven't finished writing about them in the web page.
>
>>did you ever experience a stabbing sensation in your ovaries, etc.? You mentioned the severe pain you experienced but you didn't describe it..
>
>I did have stabbing pain in my lower right side area but I'm not sure if
>it was my ovary..Well I don't really know how big my ovaries are but the
>pain felt in larger area, I think. And if you really want me to
>describe that pain,
>***warning, graphic contents, viewer discretion advised***
>..I started writing and it actually made me feel sick and I had to
>delete it. Let's just say it was a severe stabbing pain. They also
>found quite a bit of scar tissue when they did ultrasound on me.
>
>It is getting late (as you can guess, I'm in Eastern time zone) and I
>think I have to go now.
>About more details on my diet and other things, I will try to come back
>here and write or I might have to do it in my web page. In any cases,
>I'll let you know.
>
>Ciao ciao for now.
>Take care!
>Pep
>
>At Wed, 28 Mar 2001, Yen wrote:
>>
>>Hi Pep and All, **Sorry, extremely long:o)**
>>*Note to those following this thread* -- I had to restart this thread --
>>evidently the space was used up for the old thread -- I was unable to
>>type a response in the message box -- weird! I never knew it worked that
>>way LOL.
>>
>>No, I haven't ever had my estrogen level checked. I wonder whether
>>being on the bc pill would negate the possibility of an accurate
>>reading? I guess I'd have one reading on the pill and then another, when
>>the time comes post-pill.
>>
>>Pep, you ask a question which I often ask myself -- how long do I intend
>>to stay on the bc pill! The truth is, I'd like to be off of the bc pill
>>yesterday :o) but I have the fears which I mentioned in the last post.
>>How I would love to do as you suggested but with the occasional
>>twinging, the stabbing, the aches, etc., I wonder ... so, basically,
>>I'm suffering "the paralysis of analysis" -- what to do, what to do, get
>>off the pill? and cross my fingers while following a regimen like the
>>one which you suggested, have surgery and then adhere to a lifestyle as
>>you have suggested, or continue the same as I do now, the paralysis of
>>analysis. I just finished reading a post at another endo site in which
>>one of the women spoke of her endo bowel/resection surgery -- she said
>>she had done well for a period of time but now the endo is back and her
>>bowels are again giving her problems. This is my fear -- we continue to
>>have surgery -- losing more of our organs, when does it stop, will the
>>drs need to take more of her bowel should she have another surgery (how
>>much bowel can we live without? What about possible life-long
>>difficulties which may result from such surgeries). Should I choose
>>surgery, what will they find, will they find the need to resection the
>>bowel, what about the rest of the abdominal cavity, and then come the
>>adhesions (thus, perhaps, another surgery!) -- when does it end -- UGH.
>>I know I need to get off of the bc pill -- given my stats, its in my
>>best interest to do so but.... I just don't know what to do at this
>>point -- following your suggestion could be a start.
>>
>>Suzanne has had great results from her surgery with Redwine (hope I
>>didn't just violate a forum code of ethics by saying his name) -- her
>>story is, so far, a happy ending (cross our fingers). I know of only a
>>couple of other cases/women with advanced endo history who share
>>Suzanne's success -- surely there are more, I just personally don't know
>>of them -- I guess thats because they are happily living their pain-free
>>existence, thus they have no need for the forum. I'm interested, as we
>>all are, in "long-term"/infinite success.
>>
>>Pep, you had the stabbing pains, didn't you -- or not? You mentioned the
>>severe pain you experienced but you didn't describe it, ie. stabbing,
>>shooting, dull ache, burning, severe ache, tugging, etc.. You mentioned
>>the right pelvic pain -- did you ever experience a stabbing sensation in
>>your ovaries, etc.?
>>
>>Yes, I have expensive urine LOL --I take a multi-vitamin, a B complex
>>supplement, C, E, acidolpholus ....
>>
>>Yes, I agree with you re the tradeoff we make between food and pain :o).
>>For several years, I had eaten, everyday for breakfast/lunch, fresh
>>berries atop cottage cheese -- yummy and healthful, so I thought. WRONG!
>>I was experiencing so much pain but I didn't have a clue. When I later
>>figured out the a possible connection and changed my diet, what a
>>difference -- the improvement was beyond belief. LOL I feel like an
>>infomercial LOL! To all of you who may think I am an anti-milk
>>fanatic/whacko, don't get me wrong, I LOVE the taste of icecream,
>>cheese, whipped cream, etc. BUT, for me, the subsequent pain I
>>experience is not worth it.
>>Thats another thing I wonder about, why a number of us are affected by
>>dairy and yet, others have said they are not?!??! I don't get it.
>>Then again, Suzanne had surgery with Redwine and she doesn't have to
>>worry about what she eats, etc. -- she is painfree regardless ... :o).
>>**I wonder, if ALL endo is excised, then those who were affected by
>>dairy, etc., can they, subsequent to "total endo excision", forever lead
>>"normal" lives in which they no longer have to concern themselves with
>>diet for fear of recurrence -- or is it the surgery+the avoidance of
>>those irritants which result in longterm "freedom".
>>
>>***Pep, what did your diet most consist of in the few years prior to
>>your endo dx? Did you consume a lot of dairy or what (besides the minute
>>amount of milk you had with your tea :o))? ***And, presently, what is a
>>typical day re your diet?
>>
>> I checked out your website :o) -- it is coming along nicely :o).
>>
>>Take Care,
>>Yen
>
>--
>http://www.geocities.com/pepchun/p.html
>
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