Re: Is chronic fatigue typical? (Yen)
From: suzanne (anonymous@obgyn.net)
Thu Mar 8 17:15:17 2001
Dear Yen, I hope you are doing well today. I will try to answer all the
questions you have asked and if I miss any please let me know.
After my surgical excision surgery with Dr. Redwine 2/00 and the usual
surgery recoup period, I no longer suffer from chronic fatigue. I have
zip in my walk and practically jump out of bed each morning. I work a
full-time job as a web page designer, have 2 children, many friends and
several hobbies. I am now able to work out, run, jump and ride my bike.
Things most people just take for granted, but after suffering for so
long I am once again enjoying life. I used to only be able to work a
couple hours, could not care for my children and lived on heavy
narcotics and heating pad.
I had an additional surgery 2/1/01 for adhesions and pathology was taken
by Dr. Redwine and reported back - NO ENDOMETRIOSIS - NO NEOPLASIA
(cancer)! I no longer have endometriosis. I used to suffer from
terrible allergies, catch every cold, flu, had chronic yeast & bladder
infections, just to name a few of the side effects of my body battling
endo. I never thought I would get my immune system back, but I have. I
have only had one minor cold, my allergies have almost all disappeared
and I have not had any new allergies since that surgery. My body is
finally at peace.
Remember, endo is misplaced cells. Cells being where they don't belong.
Your immune system is constantly fighting this and trying to correct the
situation. It eventually throughs your body out of whack so that your
body actually begins to fight itself. The Endo Association has some
very interesting information regarding the immune system connection and
endo. It is true that many women with endo also suffer from other
autoimmune diseases like chronic fatigue syndrome, ms, lupus, etc. but
not all women with endo develop other diseases. According to the
research I have read, only a small subgroup of women with endo suffer
from other autoimmune problems. I think the researchers are beginning
to find out more regarding this.
I cannot speak for all women who have had their endo excised, but I
certainly do not suffer from the fatigue and symptoms I used to. Since
endo and adhesions go hand in hand, adhesions can and will reform,
whereas if all the endo, microscopic, deep, superficial, lesions,
nodules, etc are completely and meticiously removed, the endo is gone.
But adhesions, even though excised, lasered, or whatever, can grow back.
Adhesions can be as painful as active endo. So you may be endo free,
but suffer from adhesions which can reform. I only wish I would have
had my excision surgery before the situation became severe and the
adhesions got so bad. If only someone would have believed in my pain
sooner...
There are several theories on how we get endo. Personally I believe it
is heriditary. My sister, my aunt and myself all had hysterectomies,
tho I was the first one in the family to get the actual diagnosis of
endo. This is not unusual because my aunt would be 95 years old now and
my sister is 60 and back when they had their hysterectomies, little was
known about endo.
These are my personal observations based on the scientific research I
have studied on endometriosis. I have looked at endo from all sides.
Someday, maybe we will have all the answers to this disease, but until
then, doing all your research and trusting your intuition is most
important with this disease. There are many great doctors who have
dedicated their lives to endometriosis and having great success rates.
It is still a disease with no cure, but proper treatment is key. Dr.
Redwine's newest article on Teens with Endo may also answer some of your
questions. It covers many of the topics you are inquiring about. It is
located under newsletter and articles at http://www.scmc.org Networking with
other women who have had surgical excision of endo by an experienced
endo specialist is also a great approach in find the answers to your
questions.
take care and let me know if there is anything else I can do.
your friend, suzanne
At Thu, 8 Mar 2001, Yen wrote:
>
>Hi Suzanne and all,
>Suzanne, I was going to write via email re this question but thought
>that the forum would probably be interested as well.
>
>My question is this: Do you still suffer the "endo fatigue" now that
>your endo has been excised? And if the endo has all been excised, does
>that mean you no longer "have endometriosis" -- yet still have the
>condition which enabled it to occur in the first place -- kind of like
>being cancer free? Is it the enabling condition or the lesions which
>cause the fatigue?
>
>You see, I'm confused as to how this works -- I think I've read (correct
>me if I'm wrong) that Redwine states that once endo has been properly
>excised, its gone.
>So given this scenario, if one has had ALL (if that is possible --
>microscopic specks and all) of her endo excised, would she still suffer
>the endo fatigue? And why would the endo not recur in the future???--
>after all, how/why did we get it in the first place? (Okay, you guys can
>skip that last question LOL, we all know of the various theories). Is
>endo an autoimmune disease or not? If yes, does that mean that
>regardless of excision of all endo lesions, the disease still exists? In
>other words, is the "disease" the endo lesions (which, if "properly"
>excised would result in being "cured"), or are the endo lesions a result
>of the disease? Is the fatigue simply related to the endo lesions and
>effects of those lesions (severe pain, inflammation, etc.) or is the
>fatigue also related to the condition which permitted the lesions to
>occur in the first place?
>
>Yes, I know that was redundant -- its late LOL
>
>Wishing all of you painfree days,
>Yen
>
>At Tue, 6 Mar 2001, Sally wrote:
>>
>>At Tue, 6 Mar 2001, B. wrote:
>>>
>>>Hi Debbie,
>>>
>>>Yes Endo can cause a type of chronic fatigue. Low iron levels can also cause
>>>the type of fatigue you are describing. Not eating correctly and even
>>>allergies can also cause fatigue. Sometimes we do actually suffer with
>>>Chronic Fatigue Syndrome due to being sick or maybe an accident or even a
>>>viral infection can set it off (this is what caused my chronic fatigie) but
>>>the actual pain can very draining in itself. The hormonal factors can also
>>>cause fatigue, fluid retention can also have an effect on fatigue .Then
>>>there is depression caused by the pain, that can also cause fatigue.
>>>So you can see a lot of different factors can be causing the fatigue. Try
>>>adding an easily digested iron tablet, that is easily broken down by your
>>>body. We have a brand of Iron called FAB, it has other vitamins and minerals
>>>which help it to be broken down and absorbed propally, it does not contain
>>>yeast, gluten, sugar, salt or preservatives or artificial colours or
>>>flavours. All of these additives can cause or even set off allergies and
>>>cause us extra pain or fatigue.
>>>I hope this helps answer your question.
>>>Best Wishes,
>>>
>>>Belle.
>>>*************************************************
>>>Belle Browne R.N.
>>>*************************************************
>>>*************************************************
>>>*************************************************
>>>http://www.endometriosis.org
>>>Producer Of Endometriosis The Inside Story.
>>>http://www.endometriosis.org/html/video.html
>>>****************************************************
>>>God, grant me the Serenity to accept the things i can not change, the
>>>****************************************************
>>>****************************************************
>>>****************************************************
>>>Courage to change the things i can and the Wisdom to know the
>>> difference.
>>>____________________________________________________________
>>>----- Original Message -----
>>>____________________________________________________________
>>>____________________________________________________________
>>>____________________________________________________________
>>>____________________________________________________________
>>>From: Debbie <anonymous@obgyn.net>
>>>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>>>Sent: Wednesday, March 07, 2001 6:12 AM
>>>Subject: Is chronic fatigue typical?
>>>
>>>Hi Ladies!
>>>
>>>I'm just wondering if this never-ending fatigue I'm feeling is typical
>>>of endo....Every morning I wake up and I feel almost normal. Then I set
>>>about doing the every day things of life and by mid-day I feel wiped out
>>>and the pain starts to settle in with a vengeance. I used to work out 4
>>>days a week doing weight training....when I noticed that the pain was
>>>always much worse after I exercised, I slacked off a little bit. Now
>>>I'm to the point where a trip to the gym puts me out of commission for
>>>the rest of the day. It's very hard for me to deal with the fact that
>>>all the normal things I used to do....even cleaning the house and
>>>running errands....now take so much more energy to accomplish and seem
>>>to leave me in so much more pain afterwards.
>>>
>>>I'm also having a hard time dealing with the whole psychological aspect
>>>of this thing....I won't know for sure if I have endo until my surgery
>>>is done at the end of this month, but I'm so torn between being afraid
>>>that they WILL find it and at the same time, just as afraid that they
>>>WON'T find it....if they do, at least I know where all of this is coming
>>>from. If they don't, then have I been so consumed with the possibility
>>>of having it that it IS in my head? What a physical and emotionally
>>>draining thing this whole experience is!
>>>
>>>Best wishes for pain-free days to all!!
>>>
>>>--
>>>Debbie
>>>
>>>.
>>>
>>--
>>Thanks for the info Belle and others. I would like to add this.....Please before adding anything, have your levels checked. I am not anemic and am abnormally high in iron therefore adding iron would be determental to me. (Although my immunoglobulins are out of whack and some of my T cell counts are off but no HIV, etc. thank God! Just some weird phenomenon with me:)It is important to know what hormones and vitamins you are and are not deficient in BEFORE adding anything. And yes, what Belle said was true. MANY women with endo have chronic fatigue and some is due in part to endo but also may be due to other factors. In any case, help is available. Hopeflly those who are experiencing this can find some relief. And if you do find something particularly helpful, please share it. Thanks. Namasté, Sally
>>
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