ENDO Messages for December, 2007: ' FOR CHANALLE' A LIST OF THINGS TO KNOW. FILL IN THE BLANKS ENDO VETS

' FOR CHANALLE' A LIST OF THINGS TO KNOW. FILL IN THE BLANKS ENDO VETS

From: Jessica (anonymous@obgyn.net)
Sat Dec 8 01:43:23 2007

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Chanalle, This is quite long but I think very well worth it especially for a younger women who is first being diagnosed so I hope you read it and it helps. I just wanted to tell you that I was 17 when I started experiencing endo pain. 18 is when I had my first lap. I had never even heard about endometriosis before I had my lap. I had always had bad cramps but nothing daily like I started to have and it was scary. I know how it feels to be so young and be pushed into this world of pain an confusion when you should be out doing normal teen stuff. You sould be healthy and it feels unfair at times. The advice I want to give you is something I would have wanted someone to tell me when I was first made aware and diagnosed. PS. LADIES IF THERE IS ANYTING I MISSED FILL FREE TO ADD TO THE LIST

1. "Find yourself an Endo specialist." If your not seeing one now and your regular OBGYN is performing your lap not someone who specializes in endometriosis or pelvic pain you should asked to be referred to a Dr who does specialise. Or you could tell me what State your from and I would be happy to help you find a good Dr. You need a Dr. who is very knowledgeable in this disease and who uses the best laparoscopy procedures and can sympathize with your condition.

2. " RESEARCH, RESEARCH, RESEARCH" I was pushed into Lupron (one of the only treatments for Endo) because I felt the need to justify my pain to my old Dr. and took a very extreme action to prove I was serious. The Dr. only told me about mild side effects and didn't fully inform me about the Drug. I'm 22 now and live with a painful condition called fibromyagia. So the drug that was suppose to help me caused me to have another lifelong very painful joint condition. Lupron has helped some women but its my opinion its harmed more. I was also told by my specialist that the Dr. should have never put me on Lupron at 18 cause my body's not done developing. So WHENEVER a Dr. suggest a new treatment tell them you'd like to think on it and go home to research that treatment and come here to get advice. Someone here will have already had that treatment and can help.

3. "Get Tough" If your Dr. wont take you seriously when it comes to pain and other issues then get tough. Don't let a Dr. push you around when it comes to your body and what you can and cannot tolerate. Stick up for yourself and never feel guilty about asking for help.

4."Enjoy the Good Days" I missed out on a lot of activities in high school because I didn't take advantage of the days I felt ok or had pain pills for my pain. I was too emotionally drained to have fun and felt like none of my friends understood. I realize that I become more drained when I didn't go have fun and also realized my friends couldn't relate but I found friends on this sight that could and started to realize my friends family at home were having a tough time too watching me be sick. So I just talked to them. Communication is the key. Set upa s support system because that will help get you through the bad days.

5. " A baby is not the cure" If a Dr. ever tells you to have a child and your endo will get better than run for the hills. As having a baby may help some women during pregnancy it more than likely will come back and it might not go away at all in the first place. I was told at 18 to have a baby and my non specialist and he even wanted me to do Invetro because pain was an issue during sex. I was misinformed and found a Dr. who was better educated.

My name is Jessica and Feel free to e-mail me anytime if you have questions, need advice or just want to vent, You've come to the right place. We are one big family and the support group you will need. Welcome, I hope you find the answers your looking for here. Jessica : ) jessicarozez@hotmail.com

At Thu, 6 Dec 2007, KellyAnn wrote: >
>At Thu, 6 Dec 2007, chanalle wrote:
>>
>>At Wed, 5 Dec 2007, KellyAnn wrote:
>>>
>>>I had my second lap in September and was put on continuous Yaz for
>>>treatment right after. I was on Lupron for a few months and I couldn't
>>>do it longer than that. Anyways, my PCP referred me to a pain Dr. in
>>>July after I asked about it because my OB was not taking care of my pain
>>>well enough. The pain doc gave me Percocet from July to September, but
>>>after that she would not refill my script or see me again. She said
>>>that the Percocet was temporary. She also said that she did not treat
>>>any endo patients on a long-term basis and that my OB Dr. should be
>>>adressing my pain. The problem is that he will only give me Darvocet
>>>(18 pills for 3 months!) This is my 2nd Dr. in a year. I like him, but
>>>I can't go through this much longer. It has been like this since I was
>>>diagnosed a year ago. I called my OB and he reluctantly gave me 10
>>>Vicodin. That will last a long time, yeah right! The pain Dr. tried to
>>>refer me to a neurologist, and he would not see me (he said he does not
>>>treat endo patients either). I was wondering if anyone had similar
>>>experiences with pain management. I am so tired of feeling like I am
>>>begging for pain meds. I live in South Bend, IN and this is the most
>>>well-known pain management office around. I don't know what else to
>>>do....I guess I might have to find another OB, I just hate to do that. I
>>>am scared of being labeled a "Dr. Shopper". I'm a nurse and I know
>>>what some doctors say. I feel like I don't have much of a choice. The
>>>past few weeks I have had to borrow Vicodin from a member of my family.
>>>I have been basically bleeding ever since my surgery in Sept. ANY
>>>ADIVCE PLEASE HELP! Thanks for listening,
>>>
>>>Much love,
>>>
>>>--
>>>KellyAnn
>>>
>>Dear kellyAnn, dont worry about being labeled. you know who you are.
>>This is YOUR BODY. a couple of days ago, i had a doc's appointment with
>>a major a-hole, he refused to give me any meds for my suffering.
>>needless to say, i'm looking for another doctor. i have so far, seen
>>three. and you said your doctor is nice, but how nice can he be when he
>>see's that you are in pain and yet refuses to grant you a moment of
>>relief? change your doctor! i know it's hard, as i am only sixteen going
>>through intense hell, but believe me, find a doctor who is really
>>'nice'. and bleeding after having a lap is not normal! go to the
>>doctors office and PUSH for ANSWERS!!! by the way, i am currently
>>looking for pain relievers, so dont feel like a beggar, or junkie just
>>because you want to feel normal for a change.
>>
>>--
>>hi, my names chanalle and i am an endo sufferer. you read that? sufferer. i'm only 16 and i am supposed to schedule and appointment for a laporoscopy today. I am nervous, but also anxious to get it over with. i dont know much about this, but please email me some info. i am sorry about your pain, i know where you're coming from. It really is a sad thing, to suffer like this. i feel like i'm an infant, crawling alone in a dark tunnel, never knowing when i'll see the light.
>>
>I was diagnosed at 24, I can't imaging how you are coping. This endo
>stuff sucks so bad! It can so easily bring you down, all the doc
>appointments, tests, surgeries, poking and proding, people not taking
>you seriously. Don't feel too worried about the laparoscopy. It's
>scary when it's your first, but it's really not that bad. Honestly,
>some of the treatments (like Lupron) are way scarier. I feel so
>horrible hearing that you're just starting the long and seemingly
>never-ending journey dealing with endometriosis. It is good to know
>there is a place you can come to vent and actually have people
>understand. I think next week I will start looking for a new OB. Time
>to roll the dice again! Good luck and I'm here and so is everybody else
>if you need anything. Hang in there and keep us posted....
>
>Much Love,
>
>--
>KellyAnn
>

Next message: Jessica: "KRISTY- PAIN MANAGMENT,"
Previous message: Jessica: "Re: POST-Laprosopy QUESTION"
In reply to: KellyAnn: "Chanalle: Thanks for the response....KellyAnn"
Next in thread: Trish: "Re: ' FOR CHANALLE' A LIST OF THINGS TO KNOW. FILL IN THE BLANKS ENDO VETS"
Reply: Trish: "Re: ' FOR CHANALLE' A LIST OF THINGS TO KNOW. FILL IN THE BLANKS ENDO VETS"

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