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Re: It just isn't right.....MariaFrom: Amanda (anonymous@obgyn.net)Fri Sep 23 07:54:45 2005
Hi Maria, I just wanted to say that my doc was flabbergasted too after I told her I was still in pain, if not more, since the lap. She almost gave me a, "that's not possible," look. I really don't want to go on Lupron, and I wish there were more treatment options she would be willing to put me through. She told me to get pregnant immediately, and I'm just not ready. There has to be more options out there. She is my second gyno, and believe it or not, the only other one in my area that accepts my insurance. If I had the choice I would see a new one, but it's just not possible right now. I also haven't heard a whole lot of good things about lupron, and I don't think I'm willing to take the chance. I am already messed up emotionally from all of this endo and IC, severely depressed, and I don't think I need to add to it. Well, I hope things work out for you Maria. Take care and god bless, Amanda At Thu, 22 Sep 2005, Maria wrote: > >Yes, I'm dreading my first period after this Lupron - according to the >board it's going to be one hell of a doozy. My doctor also was >flabbergasted that the lap didn't work, and I was back in great pain two >months after it. She really pushed the Lupron, heavily, as my only >option. I asked to try BC but she said that it wouldn't help me. I >asked if there were any other options and she said my only hope was >Lupron. After about 4-5 months of this (and countless hours researching >Lupron) I agreed to take it. She has been absolutely no help to me >through this process. In fact, I've only seen her twice since I began >treatment (nurses administer the shot). I told her that I had been >diagnosed with major depression, but she didn't seem to care and had my >try add-back therapy, which did nothing for me so I stopped taking it >because of the risks. I went through (and still am going through, even >though my last one month shot was two months ago) hot flashes, night >sweats so terrible the bed would look as if I wet myself, terrible >depression, mood swings like crazy, achey joints (mostly only at night), >and a heavy mental fog. My cramps have gone, and I didn't bleed after >taking my first shot. I wouldn't take this shot again, ever. The >damage it has emotionally done to me is far worse than period pain that >should have been managed in a different way. My doc told me to get >married and pregnant if I didn't want to take Lupron. She's a real >bitch. I won't really know how the Lupron has helped (if at all, which >I'm really doubting) for a few months. I've only gained 5 lbs or so, >and that fluctuates. Good luck to you! > >-Maria > >At Thu, 22 Sep 2005, Amanda wrote: >> >>Hi Maria, you're welcome. The next time you see a doctor, and they send >>you home and tell you to take asprin or motrin, tell them you are highly >>concerned about your liver because you have to take so many of them, and >>still, have to take more because it doesn't help the pain. And if you >>have to, exaggerate how many you take!! My mom suggested we write to >>Oprah to see if we can get her to do a show on endo and the medical >>community. I almost feel at a disadvantage because we live in Michigan >>and there aren't a whole lot of options for us as far as doctors and >>specialists go. It seems that my gyno is pushing the Lupron, and I am >>just not ready for that. She basically only gave me the option of >>lupron, hysterectomy, or pregnancy. To me, it seems like I barely have >>a choice there. How is the lupron working for you?? What have you >>experienced as far as side effects go?? Anyways, I wish you luck in >>getting a good doctor and getting the help that you need. Take care >>Maria, Amanda >>At Thu, 22 Sep 2005, Maria wrote: >>> >>>Thanks for the info! Unfortunately I live downriver of Detroit, so a >>>drive to Troy to go to Beaumont (which you only ever hear amazing things >>>about) is a little of out the question, especially with gas prices. I >>>currently go to a woman in Ann Arbor (not sure how familiar you are with >>>the area..). There is a male doctor in the office who is absolutely >>>fabulous who I think I'm going to go to. When I had a super high fever >>>after my lap (with my current doc), he is the one who came in in the >>>middle of the night to check on me, not her. I didn't get to meet him >>>because I was knocked out, but my mom said he was great. My aunt works >>>for Henry Ford in Detroit so I'll get some info from her. And oh my >>>gosh about the pain meds - I have been refused them so many times it's >>>heartbreaking. I am told to take Motrin and Excedrin. When I had >>>periods (it's been awhile, i'm on Lupron) I would literally take two >>>excedrin every two hours for two days straight because I couldn't move >>>with the pain. Awesome way to ruin my stomach and liver! Thanks, doc >>>>:| (sorry, mood swing to anger, lol). Thanks so much for the tips! >>> >>>At Wed, 14 Sep 2005, Amanda wrote: >>>> >>>>Hi Maria, isn't is unreal the way we are treated?? My OBGYN told me that >>>>she will not prescribe me pain meds b/c of chance of addiction. She >>>>informed me that her sister became addicted after getting prescribed >>>>vicodin for a broken leg, and also told me that pain meds are for people >>>>with cancer or nerve damage. OK, so we have to suffer b/c of the >>>>"chance" of getting addicted?? I find it amazing how my uncle, who was >>>>diagnosed with lung cancer in Jan. 2005, went into remission after 3 >>>>mos. of treatment, and we are sitting here in pain constantly and are >>>>expected to just "deal" with it. It is obvious that the doctors we are >>>>seeing do not know the extent of this disease. Also, a woman I have >>>>talked to in flint, michigan told me that all her doctors are associated >>>>with the William Beaumont Hospital in Troy michigan, and I've also heard >>>>of good things about the Henry Ford hospital in Detroit. I wish you >>>>luck in finding the help you need, I know it is hard to do, but keep >>>>trying and don't give up. Take care and god bless....Amanda >>>>At Tue, 13 Sep 2005, Maria wrote: >>>>> >>>>>I can't tell you how often I've heard this. My doctors, noteably my >>>>>OB/GYNs, have been absolutely terrible with listening to me and spending >>>>>more than five minutes in an examination room. I was even in a >>>>>motorcycle accident, ambulence'd to the hospital, and I had to ASK >>>>>someone to clean out my wounds and I was denied a head CT that I asked >>>>>for. SO many times I have heard my stomach, bladder, and endo pain was >>>>>all "in my head" because doctors didn't want to take the time to >>>>>properly diagnose me. I watch the show "House" and get really bitter >>>>>that there are (seemingly) no doctors out there who will really try to >>>>>figure out what is wrong with you, instead of working on symptoms and >>>>>telling you it is all your fault you're in pain. Long story short, I >>>>>feel your pain, and I'm really sorry. My OB/GYN even disclosed >>>>>personal, confidential information to my mother (I'm 20). I called her >>>>>to ask about my symptoms coming off Lupron and I was told to "come in" >>>>>several times, my questions wouldn't even be answered over the phone (My >>>>>doc office is nearly an hour's drive). If anyone knows a good Endo >>>>>specialist in Ft. Myers, FL or Detroit, MI, I'd be much appreciated; >>>>>I'm tired of being treated like crap. >>>>> >>>>>At Tue, 13 Sep 2005, anonymous@obgyn.net wrote: >>>>>> >>>>>>Amanda, >>>>>>I am so so so so so sorry I get the exact same treatment at my local >>>>>>hospital. It is so sad.... It really is hard because I end up going >>>>>>home crying every time in pain saying they dont believe me....Its hard I >>>>>>have to tell myself every day that someday there will be a cure or >>>>>>someday it will get better or someday I will find a dr that will >>>>>>listen,care and treat me and give me something for my pain at the very >>>>>>least without making me feel like a pill seeker................ >>>>>> >>>>>>*hugs and many prayers to you*** >>>>>> >>>>>>Donna >>>>>> >>>>>>At Wed, 7 Sep 2005, Lori wrote: >>>>>>> >>>>>>>Amanda, >>>>>>>Man alive girl, I can not believe those doc's in the ready care said >>>>>>>that to you. The sad thing is I can kind of believe it, but yet I >>>>>>>can't, do you understand my weird mumble jumble. Anyways, that is awful >>>>>>>and I am sorry that you had to hear that. Doctors are supposed to help. >>>>>>>For goodness sakes, if they don't want to give medication for pain then >>>>>>>they better figure something else out, right? I agree with you, you >>>>>>>should right the state medical board. I went to the hospital and made a >>>>>>>complaint and now the doc is under and investigation. I will let all >>>>>>>know how that turns out. This particualar incident didn't have anything >>>>>>>to do with endo, but it did risk the life of my children, one who died >>>>>>>at 6 hours old and one who was sick. The doc took it as a serious >>>>>>>illness, but wasn't going to do anything and the next day my family doc >>>>>>>told me it was just a childhood sickness and my boy would be okay and >>>>>>>told me what I could do to make it better and now he is fine, but the >>>>>>>E.R. doc told me it could be a maligment cancer so I was freaking out >>>>>>>all night thinking something was wrong with him. Anyways, this story is >>>>>>>all over the place. I got off the track. Just wanted to show you that >>>>>>>yes, you are right and doctors can be very wrong and very insensitive. I >>>>>>>hope you prevail. Stand strong girl. Best wishes. >>>>>>>Hugs~ >>>>>>>Lori D. >>>>>>>At Tue, 6 Sep 2005, Amanda wrote: >>>>>>>> >>>>>>>>Why, in this day and age, should anyone have to suffer in pain every >>>>>>>>day?? I have endo and also interstitial cystitis, and there are >>>>>>>>treatments out there, but all of the docs I've seen so far have not been >>>>>>>>willing to dedicate more than five minutes of their time to help find a >>>>>>>>treatment that works for me. Apparently, it's too "time consuming." >>>>>>>>With both of these diseases, you have to find what works for you, which >>>>>>>>includes time, trial and error. I am at my wits end trying to find >>>>>>>>someone who will work with me and help improve my quality of life. With >>>>>>>>the technology we have now a days, and the medications that are out >>>>>>>>there, why should anyone have to live like this?? In pain all the time?? >>>>>>>>These diseases have ruined my life so far. I cannot concentrate at >>>>>>>>work, I am so afraid of eating things because of the IC, I have >>>>>>>>absolutely no social life b/c all I want to do is lay in bed!! And sex >>>>>>>>life, it doesn't exist. To me...this is not right. I am 25 years old, >>>>>>>>and it seems so far that these docs are unwilling to treat my pain b/c I >>>>>>>>am so young and b/c of their views on pain medication and everything >>>>>>>>else. It is unfair and I am appalled that the medical profession has >>>>>>>>treated so many of us so poorly. We have just as much right to be >>>>>>>>treated for pain and to get it under control as any other human being, >>>>>>>>at any age. So what can we do about it?? I personally am writing to my >>>>>>>>State medical board and letting them know my experiences in the past 4 >>>>>>>>months with endo and IC and how rudely I have been treated by each >>>>>>>>doctor. Quick story, just Sunday I was in so much pain, went to the >>>>>>>>ready care crying and hunched over, told them what I had and that I >>>>>>>>needed pain relief. They gave me 15 low dosage darvocet and said to me, >>>>>>>>"you need to see your physician about this and the next time you come in >>>>>>>>here asking for pain relief, you will be marked as a pill seeker." Sorry >>>>>>>>this is so long guys, but I am fed up with the docs in my area and >>>>>>>>nobody understand more than you do. Take care everyone, hugs to all of >>>>>>>>you:) Amanda
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