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Re: i would love your advice...pleaseFrom: Cassie (anonymous@obgyn.net)Sun Jun 29 17:37:53 2008
Hi Mary Sorry this is an essay but I have experiened similar things to you. But I still have my organs intact! My name is Cassie I Live in New Zealand i am 25. I am pleased you have been getting some feedback and support here. I am also relatively new to the forum. Last year i under went a large 5 hour operation with an expert gnyocologist and colrectal surgeon - who both specialise in endometrosis. They were not sure how involved my bowel was but put me through a full bowel prep (to empty it) just incase hey needed to resect a section (remove it). As others have said surgeons specialising in endometriosis will do all they can to leave in place as much of you while removing the disease. My surgeons found that the septum bwtween my vagina and bowel was completly full of old rock hard endometriosis. They spent a couple of hours carefuly dissecting between the two to remove the endo. They established that the endo had gone right through the muscle wall of the bowel but had not yet gone through the lining (like yours obvioulsy has!). My rectum was intact but was imobilised so I have not experieced to the same degrww what you go through on th toilet but can certainly sympathise with extreme pain. Once they had removed as much endo as possible they realised my bowel would not be strong enough to hold once full again so needed to remove 5 inches of it. The cut the piece out and stuck the raw ends back together. I have been told it was quite major surgery but I recovered really well after (my bowel took a bit to get going but was vey managable). I still ahve some pain in my bowels/with bowel movements and rectum area but the ressection has not caused me any major problems. Bowels are a littel unpredictable but I can definitely live with it! Our bodies have a long distance of bowel and we can still manage well with quite a lot of it removed far more than I had removed aparetnly. I know some people it is necessary to remove everything and get a bag and I was told it was he worse case senario but like a million to one chance. I know two men who live the bags (obviusly not for endo) but they live relatively normal lives they can not eat all things but are a lot batter than living the way they were before the operation. I had stage IV to V extensive endo in many areas of my pelvis/abdomen even inclduing my diaphragm and my surgeons managed to remove it all by excision. I am by no means perfact but manage to live a relatively normal life and still have majority of my insides. My surgeon told me that I could have a massive deposit of endo on an ovary he would be able to remove it and I would more than likely still be able to have children! He has had sucess with this in severe endo patients. I know you will be at the absolute point of frustration wanting to do anything to make this go away. But I think you realy need to look at seeing some sureons who specialise in excision of advanced stage endo from these areas maybe in conjunction with a co-rectal surgeon. Even if it takes you longer the end result will be much better for you long term. Many woman are now traveling to different ares of the world to get the best possible care! I know this is not always easy with finances, time and health but do not settle for a bulk standard surgeon to deal with your endo. I did that with my first operation as I was a poor university student and really regret it. I would not have had near the problems I have had if I went to an endo specialist surgeon from the beginning. I have seen a lot of people talking about center for endo on here and have checked out the website myself. It looks amazing and does have people like yourself travelling from all over world. Check out http://www.centerforendo.com I wish you well with this. Remember it is ok to have bad endo days I still have them where I do not know what to do with myself and feel like an emotional train wreck but it is ok to be upset and moan! Severe endo is a lot to deal with at such a young age. My thoughts will be with you. Please feel free to email me directly cassiegifkins@hotmail.com Take Care Cassie
At Thu, 26 Jun 2008, Marydoll wrote:
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