ENDO Messages for April, 2003: Re: I am also very frustrated and exausted with doc

Re: I am also very frustrated and exausted with doc

From: anonymous (anonymous@obgyn.net)
Thu Apr 10 23:20:14 2003

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>
>---"Kyriannis, Dorothy" <anonymous@obgyn.net> wrote:
>>
>> First off, Carmen. I bought three books and will be buying one more.
>> Give me 5 minutes and I'll send another e-mail with the names.
>> On a personal note, I woke up with horrible cramps yesterday morning
>and
>> such back pain, I couldn't even move. Never had so much back pain
>when
>> I DON'T have my period. Anyone ever experienced this before? I
>usually
>> get the back pain when I have my period.
>>
>> Well ladies, to my dismay I fell asleep Wednesday night at 11:05 pm,
>> (didn't even go out on the biggest night to go out, because I was in
>> horrible, horrible pain) with remote in hand ready to tape the News
>> Special I told you all about on Wednesday. My boyfriend was also very
>> upset because he feel asleep right next to me.
>> Anyway, as I suspected they did touch upon endo. I have no idea to
>what
>> extent. I have copied what is listed on the web-site and will include
>> the address. Also, I sent an e-mail to ABC News explaining that I
>have
>> been diagnosed with this disease and missed the special. I also
>touched

Hello! I am new and I know exactly how yall feel. In the past two years I have had 3 laperscoptic and laser. Now they have just diagnosed me with endo again and now also with interstial cystis. They said I have probably had it a while. It is the same syptoms as endo and they said that is why I hadn't been diagnosed before and b/c it is rare. I am only 20 years old and already $30,000 in dept just b/c of surgerys and and doctor bills. And now he told me this something I will have to live with the rest of my life. There is no cure and not much help except I can't have any acids. B/c basicly what it is is a hole in my bladder. So I thought that I would tell you that if the doctor thinks it is endo but doesn't see much and you hurt like hell then ask him about this. A lot of doctors don't know much about this and I still don't know a whole lot. They can find out by doing a cystopy where they look inside the bladder. Just check it out.I was misdiagnosed several times and now I am in so much pain that I can't even hardly enjoy life or work. So if any of yall know anything about this please let me know. I don't want to give up hope but I don't know what is left or if there is any doctors to believe anymore.

Jenny

>> on the fact that I am part of a mailing list comprised of other women
>> suffering from this disease. They state on the page that they do not
>> respond to e-mails. I requested a response and either a video copy of
>> the tape or a copy of the transcript, willing to pay the fee if there
>> was any. I was thinking. If as many of you as possible sent an
>e-mail
>> like that, we might be able to get a response telling us who to
>contact.
>> What do you guys think? Let me know. Please. I would appreciate
>some
>> feedback from you all. Maybe if we all put on a strong front that
>alot
>> of us are interested, they may help us out. I REALLY want to see this
>> special (or at least read what they wrote).
>>
>> Here is what is listed on the site. This may be all that they spoke
>> about, but I won't sleep well until I know for sure.
>>
>> 7 Diseases Doctors Miss Most
>> How often have you gone to the doctor looking for a diagnosis
>> only to leave frustrated and still sick? There are some illnesses
>that
>> even the best of doctors fail to diagnose. None of them is rare but
>they
>> are simply overlooked. So the next time you have symptoms your doctor
>> can't explain, perhaps it could be one of the following:
>>
>> 7 Diseases Doctors Miss Most
>> 1.Perimenopause
>> 2.Heart Disease
>> 3.Interstitial Cystisis: Symptom is frequent urination
>> 4.Pelvic Inflammatory Disease: Affects more than 1
>> million women per year.
>> 5.Thyroid Disorders
>> 6.Lupus: A chronic disease that generally affects
>young
>> women.
>> 7.Endometriosis: Affects up to 5 million women per
>year.
>>
>> This list is in no particular order and it comes from conversations
>with
>> doctors. However, there are other diseases that doctors miss. And
>> remember, if you have a problem that your doctor cannot diagnose,
>don't
>> think
>> you're crazy. Just find a doctor who will listen to you
>>
>> The URL for this is:
>> http://www.abcnews.com/local/wabc/homepage/20501_11221998.html
>> The URL with the "send e-mail to ABC" template is:
>> http://www.abcnews.com/local/wabc/onair/email.html
>>
>> Dorothy L. Kyriannis
>>

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