Re: Daughter with endo
From: ann (anonymous@obgyn.net)
Wed Apr 20 13:46:09 2005
HI PATTI,
MY NAME IS ANN AND I AM 38 YEARS OLD. LONG STORY SHORT, NUMEROUS DOCTOR
APPOINTMENTS, 4 LAPS, 2 C-SECTIONS, IVF TO GET PREGNANT, BIRTH CONTROL
PILLS, LUPRON......YOU NAME IT. I BEGAN HAVING SYMPTOMS WHEN I WENT
AWAY TO COLLEGE. OF COURSE ENDO IS THE LAST THING THEY ARE CHECKING FOR
AT THE SCHOOL HEALTH CLINIC OR LOCAL HOSPITAL ER OR WALK IN CLINIC. SO
MANY UNNECESSARY TESTS AND SO ON.
SO...WHEN I READ YOUR POSTING, I FELT THAT I HAD TO REPLY. IF I WAS 15
AND IN YOUR DAUGHTERS SHOES, KNOWING WHAT I DO NOW, I WOULD GO STRAIGHT
TO A SPECIALIST. I KNOW THAT THIS SOUNDS EXTREME, IS MY OPINION AND I'M
NOT A SPECIALIST, BUT WITH A NUMBER OF ENDO YEARS UNDER MY BELT, I HAVE
SOME LEARNING TO SHARE.
THERE ARE A HANDFUL OF ENDO SPECIALISTS OUT THERE AND TWO OF THE ONES I
CONTACTED WILL REVIEW YOUR DAUGHTERS CASE AT NO CHARGE. ONE IS DR. COOK
AT THE VITAL CARE INSTITUTE IN CALIFORNIA, THE OTHER IS DR ALBEE AT THE
CENTER FOR ENDO CARE IN GEORGIA. LONG STORY SHORT, BOTH DR'S HAD THE
SAME ADVICE, BUT FOR WHATEVER REASON, I CHOSE DR COOK.
DEC 9TH 2004, I HAD SURGERY WITH DR. COOK. THIS WAS ALL DONE VIA
LAPAROSCOPY AND I HAD 4 MAJOR PROCEEDURES DONE. YOU CAN GO BACK TO DEC
14TH OR 15TH AND READ MY POSTING ON MY EXPERIENCES. ALREADY EXPLAINED
COMPLETELY. I WAS SO HAPPY WITH THE RESULTS AND HOW I WAS TREATED, THAT
I PLAN TO GO BACK THIS COMING DEC FOR MY ANNUAL CHECKUP.
PLEASE READ MY POSTING AND CALL BOTH FOR INFO PACKAGES. PLEASE FEEL
FREE TO EMAIL ME DIRECTLY WITH ANY OTHER QUESTIONS.
SAMDKOSCHE@COX.NET
http://www.VITALCAREINSTITUTE.COM
DONNA@CENTERFORENDO.COM
I HOPE THIS HELPS AND PLEASE THINK TWICE ABOUT ANOTHER LUPRON INJECTION.
FOR SOME IT HELPS, BUT FOR ME IT MADE ME FEEL WORSE THAN BEFORE WITH
JUST ENDO. THE TERRIBLE SIDE EFFECTS EVEN LASTED 3 MONTHS AFTER THE 3
MONTH INJECTION WORE OFF.
--
ANN KOSCHE
At Wed, 20 Apr 2005, anonymous@obgyn.net wrote:
>
>At Wed, 20 Apr 2005, Patti wrote:
>>
>>Hello out there. I am a mother of a 15 year pld with endo. She had her
>>1st lap in Jan. 05. The surgeon was unable to remove a lesio that was
>>on her left ureter and on a nerve ending (controls her left leg). She
>>started Lupron the end of January. Her pain is slightly better but
>>certainly not gone. She has so many side effects it's scary. Her life
>>is so difficult by any standard but she's only 15. My question is
>>this...she is now starting to bleed and she is not due for her next
>>Lupron shot for a couple of weeks. Has anyone else had this side
>>effect? Should I call her doctor?
>
>hi Patti. My name is Danielle and i am 22. I have had stage four enod
>since i was 13. I have been on every drug and have had every procedure
>you can think of (including a complete hysterectomy). I even went to
>see one of the top docotors in Atlanta, GA two years ago. I have never
>joined a chat group because it is hard to relive, but maybe my
>experiences will help you and your daughter, and maybe i can start to
>heal myself. When I was 15 i was put on Lupron. it didn't work, in
>fact, in my case it made my symptoms more severe. Lupron is not for
>everyone!! Lupron is known for it's scary side effects. It is very hard
>on the body especially one so young because what it basically does is
>throw you into menopause. It did not work for me. My pain increased,
>my spontaneous and heavy bleeding increased, and i didn't have control
>over my body or my emotions. When i did research a few years ago on the
>drug i found very mixed reviews. I would suggest getting on goggle and
>try to find some case studies. Maybe they have made advancements in the
>last few years. But i do know this. The reason some doctors prescribe
>Lupron is because that has been the "way" to treat endo. A patient
>comes in with endo, they do a lap. and burn out what endo they can then
>they prescribe Lupron. It is okay to question your doctor. Make
>him/her do research. Find out any advances, because there are many.
>They might not be directly available in your area but your doctor can
>find out about it. Get several opinions! I love love my doctor, and he
>told me, "Danielle, I feel that my level of capability is not advanced
>enough to treat your case. I have done research, and for as young as
>you are and how advanced the disease is, we need to find someone more
>specialized." And he was a wonderful obgyn. Trust me I know, i am going
>to be a doctor myself ( a dentist but I have done extensive research on
>this topic and have given two speeches at the school). The articles are
>sometimes hard to follow, unless you are a scientist, but it might help.
>What other medication is she taking? When i was younger i found that
>depo shots worked for a while. Everyone is different which makes this
>disease frustrating to both the patient and the doctor. I am very happy
>to see that you are treating this aggressivly and taking it seriously.
>My first doctor did not and i am now getting ready to have my ninth
>surgery, even after the hysterectomy. My prayers are with you and your
>daughter. My sister is 15 and it has come to our attention that she too
>has the same symptoms. Right now she is taking depo and is doing okay,
>not great, but okay.
>
>I need to ask a question as well. My mom and i went to the doctor
>yesterday and found out that i have to have another surgery. I have
>endo and intersitial cystitis. I am trying to save my bladder as well
>as control my endo. My mom is a very strong woman but now that she has
>two daughters consumed by pain it is taking its toll. I am scared for
>her and i am having a harder time trying to reach her because i know she
>is blaming herself. Next month my sister and i both might have to have
>surgery. i am at a loss of words right now on how to comfort my mother.
>She has been my pillar for so long and now i need to be hers. She is
>even helping me pay for dental school. She is an amazing woman and she
>has raised amazing daughters but we are all starting to slip into this
>stressful, dark, pain filled world. What can i say or do to keep us
>afloat? I still have three years until i graduate and maybe several more
>surgeries and now my baby sister is ravaged by this disease? Please moms
>out there that are dealing with this or have dealt with this, how did
>you do it?!?
>
>Thank you so much for your time and hopefully, patti, you and your
>daughter can find the medication that will work for you. Sometimes its
>trial and error and it is a frustrating fight. I pray that you both
>have strength and God bless.
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