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Re: - Grace, just wanted to state you can have endo after a HYSTERECTOMY.From: Cindy~ (anonymous@obgyn.net)Wed Sep 10 21:40:20 2003
At Wed, 10 Sep 2003, marianne wrote: > >At Mon, 8 Sep 2003, Michelle wrote: >> >>Grace, >>If a hyst was a cure, how many women out there would have one, every >>single one of the ladies here I'm sure plus millions more. How many >>books have you read on endo, because in all the books I have read it is >>a NON CURABLE disease, which means it will NEVER go away, not even with >>a hyst, its very unfortunately but if you'd like to pick up a really >>good book at the libary its called "The Endometriosis Sourcebook" by >>Mary Lou Bellweg. There is a whole chapter on how hyst's are NOT the >>answer, and how millions of women still have endo, also you could try >>another forum called Hystersisters.com there are again thousands of >>women on here who have endo and who have already had hysts. I've talked >>to at least 20 or more. Its very sad, that is why I said you were so >>lucky to be painfree cause the majority of the women on here and there >>are not. >>Good luck on your search, I am a leader of a support group in my area so >>anymore questions you have I'd be willing to answer. >> >>-- >>Michelle I. >> >>At Mon, 8 Sep 2003, Grace wrote: >>> >>>At Mon, 8 Sep 2003, Michelle wrote: >>>> >>>>Grace, >>>>Glad to hear that you dont have pain anymore after your hyst. Your >>>>probably one of the 1% of women who'd endo doesnt come back. As a >>>>fellow hystersister, I to have a hyst last year when I was 24 and have >>>>never had a painfree day so far yet. I had both overies and tubes >>>>removed this march cause they thought maybe that was the problem, but >>>>still I take up to 6 perecets and 2 morphine per day because my pain is >>>>so intense. I also have read at least 5 books on endo that state that >>>>Hysterectomy is NEVER a cure for endo, and they dont recommend women >>>>getting them, because it just gives women false hope like it did me. So >>>>now forever I will be in pain and never really have a normal life and >>>>i"m only 25. So anyways I just wanted to clear that up that you can >>>>still have endo after having a total and complete hyst. >>>> >>>>-- >>>> Michelle I. >>>> >>>Hi Michelle, >>> >>>Sorry to hear about the pain you still have I understood that once the >>>uterus >>>was removed, the place where endo grow >>>and comes from the growth stops. >>>I would like to learn more from you >>>because most women I have spoken to >>>are pain free unless all the endo >>>is not removed and it can continue >>>to grow. What does your gyn doctor >>>say the cause is and why can't the >>>stop it. I know what the pain is >>>like please help me and the other >>>reader learn from you. >>> >>>-- >>>Grace >>> >-- >hi girls >i am a endo sufferer for the past 10 years,i was only diagnosed 2 years ago >,up until then i was told it was all in my head!!!!the reason you still suffer >from endo when you have a hyst,is that you have to go on h,r,t and that is a >synthetic hormone that makes your body still think you are ovalating,so your >endo that is in your pelvic area is still feeding of the hormones >i would also like to hear from anyone who had a laperoscopy ,and had a reaction >to the gas that they pump into you to extend your tummy, >my heart stopped for 47 secs due to this,i was in pain from them >pumping my chest to get my hert started again,i was sent home that day >,but i was very upset and in pain!!!my own gp never heard of it >but my gyne said it happens to him all the time,so if any of ye girls >went through the same experiance please write >marianne > Hello everyone, I have been suffering with endo/adhesions for about 12 years now. After 1 laporoscopy, 2laporotamies and then finally a total hystectomy 6 years ago. Each surgery consisted of removing a lot of scar tissue. My gyn told me that my body was very quick to form adhesions and that adhesions contributed to a lot of the extreme pain. For about 3 years after the hystectomy, I felt like a "new woman"...no more painful periods, sex was good again without fear of pain, I had my energy level back and wasn't a monster to my family. I had even been on HRT during that time with no complications. But the pain and discomfort came back and this time with a vengence! I had had periods of passing out and trips to the emerg. room for iv's to get my blood pressure back up. The docs have put me through all kinds of tests from urology test to upper GI and lower GI tests, CAT scans, ultrasound...you name it. It seems that they think that the pain must be coming from SOMEWHERE because I shouldn't have endo any longer! My Gyn has taken me off of the HRT, but nothing has changed except now I have pain with hot flashes! Grrr... Anyway, my Gyn is finally sending me to an Endocronologist to see if he can help. As bad as I don't want another surgery, I am willing to do whatever to have some releif and to get back to a normal life without Vicodin. For now, I have no energy (fall asleep driving which is NOT good since I am a sales rep!), I cry all the time because of the pain in my abdomin (and I really do have a high tolerance for pain), lower back, achy legs, painful intercourse (when I actually have a desire to have sex any more!), dizziness and episodes of what they are telling me is "veso-vegal response" which is where I pass out from the pain causing my blood pressure to bottom out. Has anyone out there had similar problems before and found that a laporoscopy to remove the adhesions and endo and then not going back on the HRT has been successful? Please help! I am desparate to end this mysery. People have a hard time understanding this unless they have experienced it! Thanks in advance for your help.
-- Cindy~ North Carolina
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