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New here need people who understand New here need people who understand

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  #1  
Unread 08-19-2008, 06:16 PM
New here need people who understand

Hello All My name is Laura I am 24 years old and have been battleing with endo. since I was 18 years old. First the miscarriage's started I had 4 so they did a laparscope to find they cause of the miscarriages that when my life started going down hill after that I was in constant pain always in and out of the hospital to have laparscope's and to control the pain I have went to several different doctors had about 10 laparscope's 4 laparotomies My uteris removed in April of 2006 and my ovaries removed in May of 2006 three weeks apart 3 of the laparotomies have been done since my hyst. and every time I had stage 5 endo. I have no biological children. I have been out of state for specialist to do surgery and I am still suffering every day of my life and now I have no doctor who wants to see me anymore they all say there is nothing more they can do so I feel like I am at the end of my road I don't know what to do next. So if anyone has any advice or know of any good doctors around my area I live in louisiana Please let me know I am so frustrated with all of this. Any help would be great. Thanks for listening and I wish everyone good luck. thanks in advance and sorry so long.
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  #2  
Unread 08-19-2008, 08:42 PM
New here need people who understand

Laura,

I have seen one of the the top endo specialists who is in Atlanta, Georgia in late July of this year. I have never heard of Stage 5 endo. Far as I know, endometriosis gets classed from Stage 1 to 4 (seeClassification of Endometriosis from ASRM. Did you specialist remove all of the endo that he/she saw? My understanding is that if you remove all of the endo (not just laser the top lasers off but actually excise or cut the endo out it should not come back).

Could it be adhesions given your multiple surgeries that you have had?

I'm sorry that I don't know what else to suggest to you. Hopefully you'll find your answers soon. In the meantime, keep a pain journal.

Jen
  #3  
Unread 08-20-2008, 05:53 PM
New here need people who understand

I am sorry that you are still having so many problems and have had so many surgeries!

Have you visited with any of the doctors on our list of endometriosis specialist? While the list is not all inclusive, those listed are considered the best of the best. It might be very beneficial for you to submit your records to one or more of them and see what suggestions they might have. If a method other than excision has been used for you in the past, one of the them who is skilled with excision surgery could offer you some help. Additionally, there are likely adhesions causing issues and lysis of adhesions by a skilled surgeon could be beneficial.

So far I have had excellent results from seeing an endometriosis specialist who excised my remaining endo and did lysis of adhesions. The endometriosis specialist I saw is also considered a pelvic pain specialist so he was able to recognize that I likely had IC and was able to confirm his suspicions. A pelvic pain specialist may be able to recognize other issues that might be going on besides endo (and/or adhesions).

I agree with ((tinkerbell)) that you should keep a pain diary. You might find ReliefInsite’s online pain diary. I would also suggest keeping track of all medications, foods, fluids, and such as possibly there is some gastro or intestinal issues going on. I have IBS and the pain can be unbelievable and it took awhile before I was convinced IBS really was causing that pain and I could control some of it by watching my diet.

I know it can be frustrating to have medical issues and not know which way to turn and not have a medical team on board who can help you.

in there and keep searching for the right medical team. A good general practitioner can be a place to start. Sending best wishes and s your way!
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  #4  
Unread 08-21-2008, 04:28 PM
New here need people who understand

I am so sorry to hear of you problems... I can only say the same thing then the otheres ...see if it has something to do with foods. I do have Endo and also IBS. If I eat anything out of can or Package I will get so sick you can not believe. I not only get diarria I also start shaking and vomiting . I also can not eat any milkproduct that has come in conection with Ole like in sosses and so on. + I have lots and lots of other problems with food. I have to make my bowel work or I get this very bad gramps so I lay on the kitchenfloor and can not move. IBS can get very bad .. But I have to say I still think there is a conection between Endo and IBS , because since I am on Femara+ Provera I am doing a lot better and can even sneek in a bite of canned soss. I also have Nervepain from all the Endo that was taken out at the Labs. So I take Gabapentin... But I will have my Hysto apointment and I am hoping I will do better after that. Even If my Dr. are not seeing Eye to Eye in this... My rule is I do not eat what I can not read......
Big hugs for you.. I am so sorry to hear that otheres need to suffer as well
  #5  
Unread 08-25-2008, 12:37 PM
New here need people who understand

You've had laparotomies have you had any laparoscopies? Please check with a specialist even outside of your general location and see if they can help. I know it's hard to travel while in so much pain but maybe a better doctor can help.

Blessings
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