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**New Update** Warning Long...

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  1. #1
    Lizza
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    **New Update** Warning Long...

    I just came home from seeing my specialist and at the moment, it looks as if, I will NOT need a hyst. I had no other choice but, to take Hannah along. What a mistake as, I waited 2 very long hours to be seen. Although, I did make plenty of friends with the other ladies in the waiting area as well. It helped the time pass by but, poor Hannah. She was SO bored as, she is on the go now. She completely destroyed the lobby and she had plenty to say to the doctor when, he finally saw me. She is just a regular " Chatty Kathy" like her Mom-Ma!

    I explained my nightmare stories and made a note to him that, I have seen two very prominent OB's who specialized in Endo. Both of the specialist I have seen in the past are, quite familiar with my history.
    Which leads me to another opinion I have. How do I know to trust this guy I saw today. As, this is my first time seeing him. Sure he has wrote 52 books on Endometriosis and Pelvic Pain. Sure he is a professor at UT and sure is prominent himself.

    The only way he could form an opinion was to do a pelvic exam and discuss his findings.

    According to the specialist I have a ' multitude" of different problems going on at the same time. His opinions were my bladder was causing me pain. NOT endo.

    He clarified that, I do NOT have a bladder infection but, rather a disease of the bladder that can cause, havoc if not seen about.
    His recommendations were to, try Lupron. I stopped him there and said, " I refuse to try it due to, the side effects." He then looked me straight in the eye and said, " I don't know where you received your info whether it be from the internet or friends but, when you try Lupron *WITH* Estrogen pills TOGETHER, you RID OF ALL OF THE SIDE EFFECTS." You will NOT experience Hot Flashes, Mood Swings, Night Sweats etc. Most whom you hear the stories from, did NOT combine Estrogen pills with the Lupron.

    Also he said, ' Having a vag hyst where you rid of your uterus will NOT stop your bladder pain." Because, you will STILL have your bladder and the pain.

    He wants me to come in again on Monday for an assessment on my bladder. He will run a catheter and will get the final results on the diesase I have. It is called something with a " T." It is medical jargon and I do not recall what the proper terminology is. It sounds just terrible but, it is NOT an infection he said.

    Also.. he said I am a candidate for a new form of Danazol. For those of you unfamiliar with Danazol, it *was* the first drug produced to surpess Endo in a pill form. However, the side effects were far harsher than Lupron. Now, a phase 2 of Danazol in a vaginal ring form has, been produced to control moderate to severe Endo.
    However... If has yet to be approved by the FDA. This is the SCARY part. I have a ton of research that, I took home on this new phase and I have to make a decision to agree to it or not by Monday.

    Ok are you all confused enough.. So am I. Tomorrow, I will meet with my primary OB to discuss the specialist's findings. We will reach an agreement tomorrow on whether or not to proceed with the surgery. The specialist did say a hyst *WOULD* control my horrible AF's.

    As for now, I am tired and will post my final update tomorrow.

    THANK YOU LADIES FOR ALL OF YOUR SUPPORT ... You ALL have been more than any one person could ask for!!! You are the BEST!!!
    Live Love and Be Happy!


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  3. #2
    bianca
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    Well I am confused but I hope he's right & can find some meds to help you!
    Mummy to my 3 miracles:
    Jacinta Margaret 9/8/03 (thanks to a great herbalist )
    Kaelyn Eliza 9/18/05 (a total surprise )
    Elise Jaimee 7/19/08
    after nearly 3yrs ttc #1,12 failed clomid cycles, 1 IVF & 1 FET


  4. #3
    AnnetteG
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    Wow! What an update!

    I'll give you my 2 cents... even though you didn't ask for it. I'm in a giving mood today.

    Right now, cancel/postpone your hysterectomy. You can ALWAYS have surgery but you can never go back. Have the bladder eval and see what other information he has to offer you and then research the condition he says you have.

    In the meantime, try the new medicated route. And *try* the Lupron. I know there are several women who have had major side effects from the drug (at least one on this board!) but there are also those who haven't had a single one and until you try it, you don't know which side of the fence you fall on. I have taken it twice for IVF (and will take it again in a couple weekd) and I have NOT had a single side effect. Granted its only been for about 14 days at a time but still... I would not have a problem taking it for an extended period of time. And a Lupron kit is around $100 so you aren't out a TON of cash if it doesn't work.

    Not quite sure how I would feel about the second med without doing more in-depth research so I don't have anything to offer you there. I can say that there are MANY very useful meds that are out there (here and abroad) that have yet to be approved by the FDA or will NEVER be approved by the FDA for one reason or another... many of those reasons having nothing to do with the effectiveness of the medication. There are also many meds that are fully approved by the FDA that can be fatal... think Phen/Fen. Don't judge it based on FDA approval alone because frankly... the FDA is often a little more than a HUGE bureauracy, full of red tape.

    (Pardon me... getting off the soapbox now )

    Do you belong to any endo groups online where someone might be using the new Danazol? Any patients he has taking it that you can talk to? Something else to chat with your OB about.

    Good luck with your decision! Let us know what your OB tells you tomorrow.
    Proud Mommy of &


  5. #4
    Lizza
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    Great advice Annette... I am leaning in the same route as, I have had a chance to collect my thoughts and make a decent/wise decision.

    I just finished reading the info packet on the phase 2 Danazol. I am one of 90 patients doing the study and will be paid a nice amount during the weeks of study.

    I just hate thinking of trying something "new" and what if, it causes another problem down the line somewhere? That is my only hesitant thought.
    Last edited by Melissea; 09-08-2005 at 07:51 PM.
    Live Love and Be Happy!


  6. #5
    DDVMM
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    Mel - It sounds like a hard day!

    I like Annette's idea of postponing the surgery so you can investigate these other options. Here is a site that will allow you to search all the major medical journals and read abstracts on their findings - it is invaluable when you are looking for pros and cons.
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
    I hope your OB can help you process all these decisions. again! Keep us updated.
    DD 9/99 DD 3/01 DS 12/03 DD 7/08
    Thyroid Cancer SurvivorSurvivingSTRONG!!


  7. #6
    Lizza
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    Thank You Michele...

    This will come in handy.
    Live Love and Be Happy!


  8. #7
    LostAngel212
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    Hugs I also agree with Annette!
    CeCelia and John

    RIP MOM WE LOVE YOU 6/26/1948-6/10/2009

    G is 6!!!!
    J is 4!!!!
    SD 22!!

    check out my chocolate website: http://chocolatesbycecelia.home.comcast.net


  9. #8
    dutchgirl
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    Oh Mel What a tough road and it is so hard when we have to trust the advice of others and believe that they truly know what is best I can't think of anything more than what Annette has already said. I would definitely postpone if I were you, why rush into something so serious if there is a chance there is another way? Please keep us posted. I'm thinking of you!
    Lisa
    My three sweet miracles
    DS = the big 8!
    DD = 6...going on 16
    DS = just shy of TWO!


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    3pookies
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    Annette put it well. Good luck in making your decision.
    Meredith
    Proud Mommy to Jillian - 6/02
    Noah - 3/04 and
    Sari - 3/06


  11. #10
    Tami
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    I'm just popping in here...but I'm a fellow endo sufferer so this caught my eye.

    As for the Lupron, try it!! Try it with the Estrogen. I did and had very few side effects..mainly just a few hot flashes which were very tolerable. Of course it only keeps the endo at bay while you are on it...and you can only be on it for a certain period of time (6mths I belive...that's how long I did).

    Hold off on the surgery. It's such a final thing. Research all your options and make an informed decision.

    Sending big hugs because you are going to need them through this.

    Hugs~
    Tami
    Tami
    J & S 7yrs
    C 4yrs


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