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Re: I feel so hopeless and scared Tawnia's response
From: Sarah (anonymous@obgyn.net)
Fri Feb 23 20:09:57 2007
I live in Montreal aswell and I see a good Dr now at the royal Vic.
At Wed, 21 Feb 2007, Tawnia wrote:
>
>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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