ENDO Messages for June, 2004: Re: I am also very frustrated and exausted with doc

Re: I am also very frustrated and exausted with doc

From: anonymous@obgyn.net
Sat Jun 26 21:30:09 2004

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At Thu, 10 Apr 2003, anonymous wrote: >
>>---"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
>>>

--
Yes Here is treatment, but however it is very limtied.
I have had interstial cycstis for 71/2 years I am 27 and
Doing better but if is I am sorry to say life alterting
U will have this the rest of your life. I have been destating
to me.  I have no life and I have no job.  I did go into
remeshen(no systoms) for 10 months but stop taking my treatment
thinking I was cured.  Well I learned the hard way. All can say
is I do think DMSO2 might help you. I had to go out to porland
OR to get it. and It is very expence if you don't have insurence
I have insurence from my step dad.  This thing Has drove me
to the brink of insanty, I have gave up on the possabity of
having a girlfreind it just ends up make me more up set then
what I was before. I hope your boyfreind supports you + your
famly and friends you will need every bit of it. U are in
for a long one, My doctor cryed when he told me. Also just
one ted bit. IF U GET A doctor to give you pain meds be
careful.  I was not.  I got very, addicted to them, which
made me even worse then what I already was. I

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