Dearest Sabrina !
WELCOME TO THE BOARD !!!!
((((((BIG BIG HUGS TO YOU SWEETIE)))))
I have endo so bad it is rare, and started my period at 11 years of age. Early on, they had put me on bcps' (birth control pills) which of course make your period shorter, and put the endo under a "mask" for the time you are on them. Then when cramps etc. got worse, they switched my bcp's....that can go on and on for years, but then you don't know how much endo is in there, as you won't have too many symptoms.....
Do you live in Washington State ???
There is a Rare Endo Specialist....I have never seen him, but plenty of gals have. We just moved from Maine to Virginia and initally I had done research, went to see a recommended Dr. and he told me all this bs of how no Docs can help me here, no one would fill any of my Rx's, no one believes in rare endo...on and on...
Idiot Endo Not Doc running away from the Endo Gals hahahahaha !
I walked out grabbed my husband and walked out, then cried the entire way home. Even though I knew better, my husband waited in the lobby, as we thought it would be a "no brainer" as they say...well we were wrong !
Then calling friends, long time friends of this area, I contacted one of their GP's they recommeneded and he was WONDERFUL ! Also, from all my experience, always always research any Doc you can before seeing them...ask the nurses and nurses at the hospitals if you can...they know so much !
I am now seeing a WONDERFUL Gyn Oncologist...this was recommended from a Specialist we had seen in Boston for infertility procedures, and rare endo....I have had surgery with one before and my Endo Doc in Main came, it was in a different city and hospital, and so he came to be with me, and to learn how to remove the endo deeper, via excision. I will only let surgeries occur using excision. I had laser surgery done and that Doc did not remove it all, the burns left from those surgeries caused problems, and we did not know enough at the time of what we all know now, and which you will get to know ! A wealth of knowledge is necessary for this horrible disease, as you know, there are horrible Docs out there who don't know this disease, yet they will see you and then tell you you are a bit nutzo, that you only want pain meds, and that no woman would ever have this much pain !!! Female related of course !
So, at all major medical facitlities in your areas, the larger towns, check out who their Gyn Oncologists are and call their offices. Ask to talk to their nurses, not a receptionist or secretary, but their nurses. Make sure to leave messages, and if you don't hear back within a day, call again !
By doing research on line, you should be able to find even more information from their hospital web sites, and other sites for their qualifications, how many endo surgeries they do each week, on and on.
I do believe you should try to find a great GP who knows endo, and try to find a Gyn Oncologist who knows endo.
Also, here is the information for the Specialist.
That is for Dr. Redwine, who is one of the leading endo Docs in the US. There are many more links to help from our page, on the side bar, go to "Endo Links" and there are some listed there...
I know many gals on many boards who have seen him, but there are others along the west coast....
I also suggest going to the Endometriosis Association's web site, and even joining. You will recieve a newsletter and other information, plus your dues goes to pay for the Associations excistance...only $35.00 per year..They have tons of literature at your disposal, books etc. to purchase, and they have a "lending" library so you don't have to purchase anything. They have lots of pamphlets on all sorts of Endo issues free too !!! So, here is that information for you too !
I have had endo for too many years to count now, and too many surgeries, but I know so much of this disease it is almost funny....posting and asking if anyone is in your area is a great thing to do...the Endo Assoc. can do that too....get you in contact with other gals in your state that belong, they must have Docs to recommend and not recommend...we also have questions to ask potential Docs, anything and everything you can think of, we have all found out throughout the years with this horrible ickiness that we all have, no matter how bad, or not, or whatever your situation is, you belong here, and will meet many wonderful women ! We like to call ourselves, Endo Sisters, as you will get closer with us as times go by. When you share your disease, you are talking to gals who know exactly what you are feeling and going through. No one else can do that for you !
I would be more than happy to try to help you, email or post anytime !!!!!
posting and even chatting can help and make you smile and
LOL truly LOL !
Post again, and good luck, all of us know a thing or two of different searches too ! A wealth of knowledge for you sweetie....
go to this post on the General Message board:
"Lisa, Paula, Leigh & all my Endo Sisters, a great letter for you to copy !"
I copied the letter into that post of mine....
You can copy and "edit" the letter for your own situation. It was written long ago by another endo sister and is wonderful to explain to family and friends....also read most of the new posts, as they too are new to endo, and you might be able to help each other out, reading posts and replies is very important too, you will find out new things all the time. I still do, and am 43 now ! LOL at me !
To see all message boards at once, go look under the different board listings, and click on the "View all boards at once" at the bottom of the board listings, and then everything will pop up. Games that we play too, which I just started a new wheel of fortune ! LOL at that one !
Seems like sometimes we all feel that we don't know where to go or what to do, and it seems like it will never ever stop, but it will. You have to be faithful in yourself, and conquering this disease with YOU, your support around you every day, and us !!!!!
Let us know how you are and post often ! love and prayers, Laura Ann
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