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Re: An endometriosis story to share with you all....KristyFrom: Sudsey (anonymous@obgyn.net)Mon Mar 27 11:59:05 2006
I need to adress this with you b/c I want to clear you on this from my story alone. "Sdsuey, I've read some info that says it is the lining of the uterus >that goes outside the uterus and in to the other areas but as of late >what I've read has said that it is like the lining of the uterus." first my endometriosis is the linging of my uterus it is not like my uterine tissue it is my uterine tissue. I had a c-section and my doctor messed up and transferred the uterine tissue into my scar tissue sub cutaneous tissue. I did not get endo by any one of the theories out there. My endo is DOCTOR CAUSED... While this is only referring to those with this endo I'm not going to debate what lesions in the abominal cavity are caused from. Also endometriosis in the scar can show on image scans. It is often missdiagnosed as another problem like a herniation or stitch granuloma. While it can not be diagnosed on imaging scans it is capable of being seen on imaging studies. Yes I was one of the lucky ones as they like to call my case Rare b/c one it was doc error and two b/c it came back after 3 excisions. Medical journals are warning gyns with increased c-section rates how to avoid this misstake. Obviously wouldn't seem so rare when they need to warn then on this. Of course as C-section surgery is on the rise and not just for complications but planning reasons it's become a bigger problem. I've been so unlucky with this that doctors wont touch that scar for fear of a malpractice suit if it looks ugly/ herniates not to mention it is a very complicated thing to weed through scar tissue to hunt for the lesions unlike laps that can go in and search around for and find it most with this type have to be cut into and dug into to find it all. Lucky again that no HRT therapy affect this type of endometriosis either. Studies show that lurpon doesn't shrink that endo in the scar tissue and in fact is of little help and the only method of treatment is excision. 10 yrs of suffering I too have done my research and I also am well aware of the programs you mentioned but as my husband made mention and maybe you have the answer to it why is there no commercials on either or for endometriosis awareness months in the many yrs since they got it passed with congress. Why do doc office not have anything in the way of the Ea or ERC indicating their knowledge/support of it b/c we encoutned many docs along my journey who knew nothing of either nor did they even have a clue about the CEC which raised my attention to a need for docs to get informed and like many know hand them some paper it's only going to sit in ones file ignored or pitched. Been there done that with the fight on the post tubal ligation syndrome. While I didn't stop squacking to all my doctors on the issues and info I had spent 10 yrs gaining I watch many of it go by the wayside with the docs.I have a binder filled with information on those organizations and alot of endo information right from the medical journals neither of which got gyns to change the tone and act and lies on false cures, one argued me that he studied this disease for 20 yrs yet knew nothing of either organization hence my shock in someone who studied endo for twenty years never hearing of the Ea or ERC and the CEC odd. by far I would never knock the organizations but I also want to see commercials on my tv like I am seeing for Breaste cancer awareness and erectile dysfuntion. If you can put a add on for a limp penis I'm certain it's so not an offensive issue to exploit my womenly organs and as if tampons and cute littleltounger commercials for pads isn't much different there. While I like learning about what is being done myself I also want to work toward doc knowledge b/c at this point I'm not one who can afford the CEC and in my area and with my ins I am not able to find a doc to excise my endo and I even ran through surgeons who wont touch me, half want to take out my uterus or ovaries another half want to push lupron. So while the treatments some of the woemn are able to get some help on I'm left in the flipping dark to suffer with this and the only solution I have helping me is natural progesterone cream, vitamins to help my immune problems and a gastro helping with the gatric problems and I'm often refused help with pain b/c they say you need to get the endo treated first but kinda can't get a doc to do that..So while a lump the size of a softball is growing within my scar tissue and untreated I could easily become another horror story down the road myself. Kristy I know you are suffering too with this disease I too know how it affects the body as a whole and not just one section. I've had the immune issues that I spent a full yr of my life being tossed between docs who went it's got to be auto immune related but never able to pin down which auto immune thing it was. I was going bald, I to this day run daily fevers, have eating problems from all the gastric hoopla, had enlarged lymph nodes that I had removed from my armpit and neck area all of which I know myself is endo corrilation when they never find the cause for all the strange things ongoing. I had a elevated ANA titer which had them suspecting lupus or sacoidosis. I too know from living with it all long enough how it plays out. I'm so on the same page with it all as you. While I think we all are out trying to find one piece of evidence within our stories that busts it all open it's good to have moments where we just have to explore different things. I fully felt almost relieved in the specialists sites b/c it was like wow there is someone backing us that's a doc who's learning with his work in our fight. As much as I hate to say it I put no trust in scans of any nature they have failed me more times then I care to mention and not just with endo related things. I've had scans say things were ok to have surgery say things were not as they had appeared on a scan. While I do think some scans are some benefit to some things it's a shot in the dark on what's gonna show up and not to mention who's reading them is what only human an humans make mistakes. I also see there are doctor who like to diagnose without lap or scan and charge onward for the lets try lupron and if it works you got endo approach which if you get a chance check into the doc forum on here it's talked about on there which just blew me out of the water. that was the day I was never going back to that forum b/c I wanted to scream on their but can't so I thought I had best not go there at all. I think many would appreciate you sharing your knowledge on the organizations too.. Many new members aren't always aware and it would help them out as well. all my best Sudsey
At Mon, 27 Mar 2006, Kristy wrote:
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