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Re: I feel so hopeless and scared
From: Tawnia (anonymous@obgyn.net)
Wed Feb 21 11:42:22 2007
Yeah always get a second opinion, and whatever dr doesn't want you to
have a second consult they are stupid! I have been sending students
studying here at the hospitals in Montreal to the endo zone in order for
them to learn what it is about and luckily my dr always recommends a
second opinion and doesn't let med students touch me. They may observe
in order to learn but may never touch. I wish you luck in finding
someone that can treat you as well as my dr is treating me now. I am 24
and everything is now wrong to the point my dr says ill now be under the
knife for the complete hysterecomy and he is not coming out of the
operating room until he has gotten all endo (keepping in mind other
specialist must be in the operating room). Plus the doc agreed with me
incase any endo is left I will not receive a hormone treatment, instead
probably an anti-depressant. But in my case it is time to have
everything removed due to too many cysts ruptoring and too much be
tangled in a web! or as my doc sayed from my lap it looks like a picture
you would see through a kaleidoscope! My prayers are with everyone. My
only regret is I cannot reccommend any docs cuz I live up in Canada.
At Wed, 21 Feb 2007, Nicole wrote:
>
>I'm sorry I didn't mean to joke...I was just referring to the times that
>doctors have told me it was appendicitis and that if left untreated I
>can cause death...which I know is true...I just think they wer mistaken
>about thier diagnosis of appendicitis...I think a lot of times doctors
>make this mistake, especially because appendicitis is fairly
>well-know/commom reason for abdominal surgery. I just wish doctors knew
>more about Endo...I've been told more than six occasions that I had
>appendicitis, never anything was said about Endo, and I believe most of
>my complications were caused by Endo...Still doctors always say that "we
>can't be completely sure unless we operate" I just think that
>misdiagnoses is a problem with people with Endo, it just makes me made
>that it takes an average of 8 years to diagnose, and most women go
>through a maze of wrong diagnoses, and sometimes unnessecary surgeries
>(although some are needed and I know they can help)...Although I did
>have my appendix removed eventually...Still the pain on my lower right
>side continues and to this day I still hear things like "have a baby"
>which is not a cure for Endo...At least I can say it's not appendicitis
>now! I just wish people were more educated about it (partly our job to
>advocate for ourselves) I'm sorry your mom got so sick...I guess I've
>just been so worn down by doctors telling me one thing an another, and
>lots of misinformation, or plain wrong information, I tend to be a
>little wary of things...But, when in doubt seek another opinion right?
>
>At Wed, 21 Feb 2007, Tawnia wrote:
>>
>>Hey Nicole,
>>Doctors don't joke when it comes to having the surgery or you will die!
>>I almost lost my mother 13 years ago because the endo was strangling
>>vital organs! You will never see Endometriosis as the cause of death on
>>a death certificate, but there have been quite a few!
>>Be careful, don't go for every surgery they suggest but don't let it get
>>to that severity again. The people that love you will end up missing
>>you!
>>
>>At Wed, 21 Feb 2007, Nicole wrote:
>>>
>>>Hi April,
>>>I just joined this forum, (I wish I had knew of it like 10 years ago,
>>>but I'm glad for it now) Anyway...I'm 27 now also. I pretty much new I
>>>had Endo from 15 years old...I just put off the surgery until
>>>2005...When I was in the ER literally every other week. For so long I
>>>had just "toughed" it out takin motrin till it kills my liver...And then
>>>I just couldn't take it anymore...But it seemed like it had gottem real
>>>bad...And I had a surgery and then another...And the pain is still
>>>horrible...I don't think the surgery helped at all (although I did get
>>>both through ER and so they wern't planned with experienced ER
>>>doctors...but both placed pretty much convinced me that I had to have
>>>the surgeries or I would die {yeahright!...what do they know!}) So I've
>>>also been really depressed...I've been seeing a psychiatrist for about 6
>>>years now and he thinks I'm just nuts...like this whole thing is a
>>>little fantasy of mine...Probably because it all seems so horrible...I
>>>mean a disease with no cure that causes immense pain and suffering,
>>>fatigue, immune system problems & infertility(Sounds pretty terrible to
>>>me!) So anyway my "friends" pretty much ditched me...Here's an extra
>>>horrible story about a thing a "friend" did to me, I was home from
>>>surgery (my first lap) and this girl I had known for 10 yrs, and she was
>>>a close friend, at least I considered her one of my three closest
>>>friends at the time, well she came to visit me after surgery and I was
>>>telling her that my pain was so bad that I had to take all these pain
>>>meds (which were in my bathroom), well anyway I later realized what had
>>>happened when after she left my house I went to take something for my
>>>pain and my meds were gone! I couldn't believe it, I had just told her
>>>my agonizing tale of Endometriosis woe and then she sneaks around and
>>>slips the pills in her bag when I wasn't looking!...And it seems stuff
>>>like this happens in the most difficult times...."POOF"! everyone wants
>>>nothing to do with you. Well those types of people I don't consider
>>>true friends...They must love me good and bad...Endometriosis/sick or
>>>not. (And NOT steal badly needed medicine from me!) So I've been doing
>>>what you've been doing and reaching out to online groups...I'm actually
>>>going to a support group meeting this week...my first one and I'm so
>>>excited. Look for ones in your area...Contact the EA, usually they
>>>organize them. I'm in New York....so I guess it was easy...I guess it
>>>might be harder in other places...hmmm...Anyway...hang in there and you
>>>can always talk to me and everyone else on this forum...We're all here
>>>for support.
>>>Hang in there...-Nic
>>>At Tue, 20 Feb 2007, April wrote:
>>>>
>>>>At Sat, 3 Feb 2007, lisa wrote:
>>>>>
>>>>>At Fri, 2 Feb 2007, Sarah wrote:
>>>>>>
>>>>>>Hello all... I was diagnosed with Endo in 2005 after I balled over in
>>>>>>pain while doing my hair and had to got to the emergency room. I then
>>>>>>found out I had a cyst the size of a tennis ball on me left ovary and
>>>>>>needed emergency surgery. ( I still have my ovaries). After that about
>>>>>>2 months later I started to feel pain everytime I walked so I of course
>>>>>>went to the doctor and she being an over pain under knowledge girl told
>>>>>>me it was nothing. So I changed doctors because I know I'm not crazy
>>>>>>and for years before my surgery I use to tell doctors, friends and
>>>>>>family that something was wrong but everyone just said it was in my
>>>>>>head... Anyways sorry back to the other story I changed doctors and he
>>>>>>said that I had another cyst on my right ovary and that he wants to put
>>>>>>me on Lupron and he couldn't understand how my previous doctor was so
>>>>>>careless. 2 Weeks after starting the Lupron I awoke a 6am in incredible
>>>>>>pain...so off I go back to the hospital ( a different hospital) and was
>>>>>>seen but htis incredibly nice doctor. He did some tests and said that
>>>>>>everything looked as fine as it could be considering the cyst but he
>>>>>>wouldn't feel comfortable sending me home. So into surgery I go again
>>>>>>the first time it was a laparotomy this time it was a laprascopy in
>>>>>>either case they both hurt while recovering. The first surgery wsa in
>>>>>>October 2005 and the second was April 2006. Now I've finished my Lupron
>>>>>>3 months ago and started getting my period again ( by the way who ever
>>>>>>invented Lupron I could kiss them).Now I have incredible backaches and
>>>>>>cramps that usually last about 3 days but I get so depressed and I've
>>>>>>done reserch online about this disease and it scares me to death. I'm
>>>>>>afraid to leave my house just incase I get terrible cramps. I can't
>>>>>>walk for long periods of time cause my back is to sore. My husband as
>>>>>>much as I love him I don't think he fathom what's happening to me. I
>>>>>>started my period today so I'm feeling horrible and needed to just talk
>>>>>>to someone who can relate.Half the time I want to be left alone so I
>>>>>>hide in our bedroom...I don't sleep much at night and feel like this
>>>>>>computer is my best friend. I'm not a cryer and everytime I start to
>>>>>>think about things I just want to cry. However I do it when nobody can
>>>>>>see me. I use to be so out going I use to party and hang out with my
>>>>>>friends...now I just want to stay home. I'm 26 years old this month and
>>>>>>I've completely isolated myself. I thank anybody who is reading this
>>>>>>long letter but as I stated before I needed a shoulder from someone who
>>>>>>can relate.
>>>>>>Thank you so much for time.
>>>>>
>>>>>I soo know how you feel, I went through the same thing. Bent away and
>>>>>hope you feel beter, i know venting helps me. IT is a horible disease .
>>>>>I cant walk around the mall with out being in tears with pain, i hate
>>>>>leaving the house too. Sometimes i feel so alone and like im going nuts
>>>>>cause no one in life understand. I love you all on line you help me to
>>>>>feel beter and know others are out there.
>>>>
>>>>--
>>>>I experienced pain since I got my period at the age of 15 and nobody took me seriously including
>>>> the doctors(they prescribed me birth control and naproxen). So, I didn't think nothing of the symptoms
>>>>because I was told that it was normal.I had a lap in late 2005 and was diagnosed with 1st stage endo I get depressed, my legs get dull pain and was weak, my lower back hurts,
>>>>burning feeling cramps, cold chills,etc. I didn't need to look at the calander for my next cycle because like a
>>>>clockwork I recieved sharp pain in my lower stomach area. My boyfriend doesn't understand, my sister, my friends,
>>>>they look at me like....girl, you will be fine you will have kids soon you are still young.And I also get frustated because
>>>>I think I have new symptoms like bowel problems and tiredness,it trip me out because nobody seem to be listening to me.Sometimes, I feel alone as well and I cry alone in the shower.They don't understand
>>>>why I want to stay home when I get sick like that. I used to go out all the time myself and i don't even feel like doing that.
>>>>
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