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Re: 'at the end of rope'From: Elaine (anonymous@obgyn.net)Tue Apr 25 18:53:09 2006
I wish I had more words of wisdom for you Shell but I am in the same boat as you. You beat me to this post! At least you will know you aren't alone in this! I had a complete hysterectomy 8 months ago and I am in so much pain it is ridiculous. My abdomen is swollen like I am pregnant but I have lost 8 pounds in the last few months. I am so nauseated and sick all the time I can barely eat. I can't seem to live without hrt or with it. Surgical menopause really s****! My gyn did not remove the remaining endo off my bowels or bladder when he did my hyst, told me I would be cured without my ovaries(yeah, right..total bull****), and bowel movements are extremely painful as well. I am facing yet another laparoscopy this Fall. Many days I feel like giving up. I mean, I sacrificed parts of my body for this freaking disease and it still persists. So I know exactly how you feel. And going from doctor to doctor fighting to be heard and taken seriously is getting old and tiresome. I am still working full time right now but it is getting near impossible. I have to take naps at work during the day. I come home completely exhausted and am unable to even cook for myself. My boyfriend has been nice enough to at least do that. Like you, I am scared to death of my future. All I can tell you is to hang in there and keep fighting. You are very worth it. Somehow we have to make ourselves heard. I am thinking of writing a letter and sending it to all my doctors explaining just how miserable I am. I figure that by taking the time to write out everything I am going through in detail and then sending it to them, instead of trying to get everything out in a fifteen minute appointment, maybe they will better understand just how bad I am feeling and be more willing to help. It is worth a shot anyway. Maybe that is something you can consider doing. I am also thinking of contacting someone through the Endometriosis Association or through the Endometriosis Research Center to see if they know of anyone locally that can help me. I sincerely hope that things turn out better for you. It is just so unfair that we can't get the care we deserve because we don't have the greatest insurance and we are poor. Please know that I am thinking of you and that you are not alone. Vent as much as you need to. And if you need someone to talk to, I am more than willing to listen. Email me anytime! Take care and hang in there Shell! Elaine At Tue, 25 Apr 2006, Shell wrote: > >HI ALL,HAVN'T BEEN ABLE TO SIT AT COMPUTER FOR A WHILE.I AM SO AT THE >END OF MY ROPE DON'T KNOW WHAT TO DO.I HAVE HAD HYSTERECTOMY NOW HAVE >ENDO EVERYWHERE AND HORRRIBLE ADHESIONS.I'M ON MY 3RD REGIMENT OF >LUPRON.I HAVE COMPLETLY PASSED OUT SEVERAL TIMES OVER LAST FEW >WEEKS,PAINS INCREASING AND MY ABDOMINE IS THE SIZE OF A6MONTH >PREGNANCY.I LIVE IN A VERY SMALL COMMUNITY WITH FEW DR.I CALL DR. TO >GET IN AND SHE TELLS ME TO GO TO CLINIC TO GET PAIN KILLERS AND MAKES ME >AN APPOINTMENT FOR THREE WEEKS FROM NOW.FIVE YEARS AGO I HAD AN 8,YES 8 >POUND TUMOR AND I'M NOT WAITING 3 WEEKS!!!!!I AM NOT GOING TO TAKE MORE >PILLS AND NOT HAVE EXPLANATION FOR PAIN INCREASE.SO I CALLED AND TOLD >THEM TO GIVE ME A REFERRAL TO UCSF ENDOCRONOLGY DEPARTMENT OR I'M GONNA >TAKE ALL THE DAMN PILLS AND CALL IT A DAY.O.K SO NOW I'VE GOT THIS >IDIOTS ATTENTION.MY LAST DR. SAID HE THOUGHT I HAVE THE ENDO IN MY >BRAIN AND I WANT TO KNOW.I'M ALSO LOOKING AT BEING HOMELESS BECAUSE I'M >TRYING TO GET DISABILITY BUT NOTHING YET.THEY TREAT ME LIKE I'M >CRAZY.WELL HELLO NEWS FOR THEM THIS INATIQUET TREATMENT AND NO >INCOME,INABILITY TO WORK AND PAIN,BLEEDING ALL THAT STUFF YEAH I'M GOING >CRAZY.I'M GOING TO PUSH AND GET SOMETHING DONE.THANKS FOR >LISTENING,VENTING SISTER,SHELL
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