Re: Endometriosis, is anyone out there as miserable as I am?
From: Amy (anonymous@obgyn.net)
Thu Jun 15 12:01:09 2006
Alexis, you hit it right on the nose! Roller coaster is right. Some
days I am on top of the world because I am having a "good endo day" and
other days I want to scream, cry, crawl into a hole, hate the world,
etc. etc. The pain and other physical problems from endo are bad
enough but being on the emotional roller coaster all the time is just as
bad. Some days I really think I am losing my mind.
Fatigue is one of the worst symptoms for me too. I was a very active
person until the endo got really bad. I could sleep 12 hours a day now
and still be tired. The bags under my eyes never go away and trust me,
no amount of makeup covers them up! I just try to take advantage of the
days I feel pretty good and not guilt myself when the bad day hits and I
can't get out of bed.
Sherri, hang in there! I think most of the women on this forum would say
they are just as miserable. The list of side effects of this disease
seems like a mile long. A good suggestion: Look for the book titled
"Endometriosis: What your Doctor Doesn't Tell You...That you Need to
Know" by Kerry-Ann Morris. She is an endo sister too and after several
years of hard work, finally got this book published. Some of the forum
readers may remember it or sent her their own stories (I was one who
sent my story in). I am very endo aware and have done tons of research
in the 10 years I have been officially diagnosed and this is by far the
best thing I have read. Explains it all in easy to read detail and the
real life accounts of women with endo scattered throughout the book
really help you feel better about not being alone. Many of the stories
in the book could have been my own. I have found it to be a great
comfort.
Feel free to email me direct anytime you need to vent. I've been away
from the forum for awhile and I really miss it. I am trying to get
active again as time permits.
Hugs to all!
Amy
At Tue, 13 Jun 2006, SHERRI wrote:
>
>WELL YOU WORDED EXACTLY HOW I FEEL -SOMETIME I DO NOT KNOW WHETHER TO
>CRY, SCREAM OR LAUGH.. I CAN TOTALLY RELATE TO THAT FEELING. AND THE
>DEAL ABOUT THE PAINKILLERS, BEEN THERE/DONE THAT MYSELF. TOOK TYLOX OR
>WHATEVER DR GAVE ME AT THE TIME FOR THE PAIN AND THEN I END UP HAVING
>SIDE EFFECTS OF FEELING ITCHY AND JUST WIRED UP.. WANTING TO SLEEP BUT
>CAN'T AND BEING TOTALLY MISERABLE.
>
>DO YOU STAY COMPLETELY TIRED AND EXHAUSTED ALL THE TIME TOO?
>
>At Mon, 12 Jun 2006, anonymous@obgyn.net wrote:
>>
>>Girl, you are NOT ALONE.
>>Every day it's a different roller coaster for me.
>>Some days my hormones are all over the map, and I can't predict how I'll
>>react to the most simple request. Other days, I'm angry because I hurt
>>so much. Then there are days that I hurt so much that I end up taking
>>really strong pain killers...which subsequently leave me feeling like
>>utter crap when they wear off (imagine that, narcotics having after
>>effects!!!). Today was one of those days...I thought I was going to die
>>when my meds started to wear off. I was nauseaus beyond belief and my
>>office started spinning. Ah, so frustrating. I ended up calling Matt
>>to pick me up at the office to take me home. I couldn't sleep because I
>>was dizzy and my skin was itchy (drug side effect). Double edged sword
>>I guess. :(
>>
>>Sorry, I guess I needed to rant. I dont' know what I would do without
>>having this place and you ladies to write to. I have so much bottled up
>>emotion about this disease it isn't even funny. It just makes me want
>>to cry some days, laugh others, and scream more than most.
>>
>>At Mon, 12 Jun 2006, Dena wrote:
>>>
>>>You can whine all you want Sherri! That's why we're all here! We are the
>>>only ones who truly understand what you are going through and would
>>>never want you to supress your feelings.
>>>
>>>This disease is SO frustrating. I think we all go through stages in
>>>dealing with endo, almost like a mourning period. There's periods of
>>>denial, anger, depression, etc. A short time ago on this forum there
>>>were some ladies who were writing poems about endo. I think we need one
>>>on the stages we go through in dealing with this disease. Anyone up for
>>>it? :-)
>>>
>>>At Mon, 12 Jun 2006, Sherri wrote:
>>>>
>>>>I know this sounds like whining and I get so irritated at myself for
>>>>whining, but God.. this crap just seems to get worse and worse. Not
>>>>better. Had bad periods since I started and as I get older, they seem
>>>>to just get worse and worse w/ time and I'm 37 yrs old. I've had two
>>>>Lapriscopy surgeries where they went in and burned away and cut and
>>>>burned away the scar tissue but it keeps coming back. I've did one 3
>>>>month round of Lupron shots and the dang side effects from that made it
>>>>possibly the worst 3 months of my life. Now I'm back on my regular BC
>>>>pill and just dealing with things and when the pain gets to where I
>>>>can't take it anymore my Dr has suggested a full hysterectomy which I am
>>>>closely considering. I've heard various opinions, some women tell me
>>>>the difference is like night and day in the way I'll feel and others
>>>>lead me to believe that even w/ a hysterectomy I'll still have my endo
>>>>problems. I'm really not sure what to do. I just know I eat ibuprofen
>>>>like it's candy during my cycle and sometime I still wind up curling up
>>>>on the floor in a tight ball in the fetus position from the pain; I have
>>>>a tendancy to pass out when I experiment so much pain and I just feel
>>>>awful. The last time, I experienced migraine headaches along w/ my
>>>>cramping so needless to say I was 'down for the count' so to speak. If
>>>>I'm not experimenting the bad headached and/or bad cramps I'm always
>>>>tired and never feel 'good' so to speak and just want to sleep all the
>>>>time it seems like and then half the time I cannot sleep so I'm just
>>>>lying here miserable.
>>>>
>>>>Can you all relate to this mess? I just need to know there are other
>>>>people out there that experience the same symtoms and how you deal w/
>>>>everything?
>>>>
>>>>Thank you for your time, Sherri
>>>
>>>--
>>>Dena
>>>
>--
>MELISSA, I'M NEW TO THIS SITE AND I AM CONTEPLATING A FULL HYSTERECTOMY TO HOPEFULLY SOLVE MY PROBLEMS I HAVE W/ ENDO. I WAS WONDERING IF YOU COULD TELL ME HOW YOU ARE DOING W/ THAT AND DID IT HELP YOU WITH YOUR ENDO? I KNOW YOU ARE NOW SUFFERING W/ THE LEG/BACK PAIN BUT JUST WANTED TO SEE IF I COULD GET ANY ADVICE/SUPPORT W/ ENDO? I'VE WENT THRU 2 LAPRISCOPY SURGERIES AND ONE ROUND OF A 3 MONTH SUPPLY OF LUPRON SHOTS WHICH I DID NOT DO TOO WELL WITH.. ANYWAY APPRECIATE ANY FEED BACK YOU CAN GIVE ME? THANK YOU -SHERRI
>
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