Karma2678
Enthusiast
Reged: 07/23/03
Posts: 200
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I have had endometriosis for as long as I can remember. I was previously going to a medical hospital because my father was military and I was his dependant. I always had the worse problems and was diagnosed at about 12 yrs old. Well, I never got good treatment at all there constantly having to go to the er and get some kind of shot that made the pain go away for awhile. That was it! I just lived with it because I was to young to know any better. When I got older and lost the medical coverage I went w/o treatment forever and suffered and had huge ER bills. Then when I had my child it corrected the problem for about 3 yrs well now it has come back with a bang! So now that I have coverage I went to A Gyno doctor about this. I explained that I had already been diagnosed and he could get my records from my previouse doctor and he examined me and said I did have endo. from the looks of it??? Then he gave me a medication called Bextra and said it is really for arthritis but works for endo well. Well, I tried the medication for about a month and it just did not work. I was having a flare up and was in extreme pain and was about to make another ER visit and so I called the dr. and spoke to the RN and told her that I had been on bextra and I am in incredible pain. Well, she talked to the dr and called me back and said I did not give it time enough to work and that, that he did not prescribe any narcotics even though I did not ask for anything in particular just something different! That would work. Then she said that I needed to find a different doctor. Well, a couple of days letter I received a certified letter explaining that the dr. does not feel he can treat me! And would discontinue being my dr. effective immediately! What on earth did I do wrong??? The bextra really did not help, and he had all kinds of records that verified my condition.
Now, today the RN called me back and said would I be making the March appt??? I told her that the dr. had dropped me and she was like oh ok. Does this sound odd to anyone else. This doctor had no reason to drop me I was not in anyway trying to get any drugs from him I would have been happy with anything that would help me until I have the hysterctomy appt. which I begged him to set up an appt for me immidiatly and he refused because I am only 24.
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~~~ Karma ~~~
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meowsie
Member
Reged: 12/16/03
Posts: 169
Loc: MA
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That is crazy...as much as it sucks though, look at like you are somewhat lucky, you don't need a doc like that. He's obviously useless and now you can find yourself a new doc that will help you and not treat you like that. Bextra is useless and you would have had every right to ask for a narcotic, which you weren't even doing. My gyno screwed me too, though I was more at fault than you ( you can read my story in that thread I think it's called my pharmacy flagged me) Good luck, when you find a real doc make sure to call that loser and thank him!
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myrrine
Member
Reged: 08/10/03
Posts: 163
Loc: Western PA
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i understand exactly where you are coming from. I'be been battling with this since I was 14 and I'm 25 now. First of all, do not rush into the decision to get a hysto. this may not relive the pain....this is not a guarantee...usually menopause is. Secondly, find a gyno who specializes in Endo. such as a reproductive endocrinologist. You may be able to get laproscopy to laser the lesions, if you do only get a surgem who does this procedure. There is a webiste for support full of current reseqarch, support groups and forums www.endozone.com ( I think it might be .org) a quick goole will help you locate it. Sometimes it's reassuring to read about other people's issues and see that you are not alone. Also, you can see the treatment various people have been offered.
Please PM me if you want someone to talk to, I could use the support myself. I've been going through a really hard time with this recently.
Take Care,
Myrrine
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They say "time marches on," I just never got used to the beat...
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night_shade
Threadhead
Reged: 08/26/03
Posts: 907
Loc: The State of Hockey
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I really think doctors feel personally offended when a "drug-seeker" actually scores through them and the doc finds out later. This causes them to look at every patient with suspicion. It is possible someone has "pulled one over" on this particular doc and it has led to his/her paranoia of ever being "taken" again.
Who knows WHY??? I agree with a previous poster- count yourself LUCKY that you haven't invested years developing a relationship with this particular doctor. Gather up all of your records and find someone else.
Endo is really only correctable by hysterectomy (which I had done for mine and have not spent even one day regretting it! Sex was possible again afterward and no more horribly painful periods, constantly bleeding, etc. No more abdominal pain, period. And I had mine done when I was TWENTY FIVE.) If that isn't an option for you, try to find a Gynecologist who specializes in gynecological disorders.
Best of luck to you!
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Never underestimate the predictability of stupidity.
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Karma2678
Enthusiast
Reged: 07/23/03
Posts: 200
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Thank you all for your post. I should be grateful I know now that he is not going to be any help to me before I just keep going to appt after appt. I will look for a doctor that can help me by prescribing hydro. I realize all of the bad that goes along with taking the hydro, but it is the only thing I have found that gets me out of the pain and allows me to spend quality pain free time with my family. I don't want them to suffer along with me. Now, If a local dr. could just understand that and give me the meds I need then I would not need to go broke using OP's. Don't get me wrong I am soooooooooo grateful they are here. But I also know sometimes I just don't have the money and if we became unemployed for whatever reason it would not be feasible at all to use them. I think about things like this all of the time having to rely on Bextra for my pain would be my worste nightmare! Thank you all for your advice and I will be taking it.
Anyone suffering from endo please feel free to pm me whenever to talk I know what you are going through and sometimes others like our significant others could not possibly understand what we are going through. I always feel like my husband thinks I just can't handle my period and other women just deal with it and I just have no tolerance to pain (from what he has said). And as we know it is not a "Regular" period and is extremely painful. So, if anyone needs to talk or complain feel free to pm me I am here to help and listen.
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~~~ Karma ~~~
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buey
Old Hand
Reged: 01/15/03
Posts: 453
Loc: USA
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Whoa! Endo is only cured by a hysterectomy??? If I had done that, and if my SIL had done that, there would be three less kids in the world.
There are many treatment alternatives out there for endometriosis. Both my SIL and myself had laser surgery. That was a decade ago for both of us, and we are both pain free now. Please don't just consider getting your uterus ripped out at such a young age. That's so radicle and unnecessary. I am floored at sucha a statement.
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Julz
Enthusiast
Reged: 11/17/03
Posts: 222
Loc: NJ Shore
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Karma~
I also suffer from Endometriosis, as well as cervical stenosis. I have had 2 laparascopies (sp?) to remove it; the thing with the laser surgery is that the Endo does grow back. If you are only 24, please reconsider having a hysterectomy!!! I am 41, and although the last 2 OBGYN's I've been to recommended I have a hysterectomy also, I refuse to- I've had 4 miscarriages, and remain childless. If I allow them to remove my reproductive organs, then I'll never know if I indeed could have had a baby, even though my clock is ticking very rapidly
I've been to 2 fertility specialists myself and neither one helped me at all. I refuse to give up! I agree with the other posters- find a GOOD Reproductive Endocrinologist, or an OBGYN who specializes in laser surgery, and take it from there. I would also like to point something out to you- you mentioned in your original post that your current OBGYN diagnosed you with having Endo by examning you- that is IMPOSSIBLE!! Endo cannot even be detected by an ultrasound!
I think he actually did you a favor by dismissing you as a patient!!!
If you ever need to talk, please PM me anytime!!!
Peace,
Julz
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Love never fails. 1Cor 13:8
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gottadoit
Enthusiast
Reged: 10/21/03
Posts: 269
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Julz,
I just wanted to wish you luck in becoming a Mommy. Infertility has to be one of the most depressing issues for a woman (or man) to face. 4 miscarriage? I can't even begin to imagine the heartbreak of that. You are in my thoughts and prayers.
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ReOkie
Board Addict
Reged: 02/20/04
Posts: 331
Loc: Oklahoma
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And for those who do have a hysterectomy, there are many wonderful children that would love to be adopted.
Just food for thought.
PS-Sounds like you didn't need him for a doctor anyway. THis is probably a blessing in disguise.
ReOkie
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kittie74
Board Addict
Reged: 02/16/04
Posts: 310
Loc: Hollywood
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Dealing with gyno issues are tough enough without having to deal with an A**hole gyno! I have a uterine fiboird that is getting very large. I have HORRIBLE periods. I bleed so heavy. Now that I have my disk replacement surgery out of the way, I have to deal with removing the fibroid. Back in the day, the solution was hysterectomy. But now, they can just remove it and leave your uterus intact. There is another, newer procedure called embolization (sp?) - where they cut off blood supply to fibroid, forcing it to shrivel and disappear.
I just turned 40 and the thought of possibly never having a baby is upsetting. I know as long as I have the fibroid, I probably can't get pregnant. But if I remove it, I risk damaging my uterus.
I was referred to a gyno last year who is a 'gyno to the stars'. Whatever. that's not why I went to her. I had just heard that she was really good. Well...she wasn't! She was awful. I guess unless you're a celebrity, you don't get great treatment. I had to wait 3 hours to see her on my first visit! And when she finally came in to see me, she was a b**ch and rushed the visit. She spent all of 10 minutes with me and then had the nerve to bill me $400! I complained about the billing, but the billing people said they had to ask the doctor about it. A few months later, I had a really bad urinary tract infection, so I had scheduled an emergency appointment with her. I was in pain and needed the antibiotics to clear it up. Was she sympathetic to my pain? Absolutely not! She lectured me for complaining about the bill. And said that if I didn't like it, I could go somewhere else!!!! Thank god my internist recommended someone else - a man.
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night_shade
Threadhead
Reged: 08/26/03
Posts: 907
Loc: The State of Hockey
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Quote:
Whoa! Endo is only cured by a hysterectomy???
Yes, hysterectomy IS the only cure for endometriosis. I'm HARDLY saying it is the best TREATMENT for it or that every woman with endo needs to have a hysterectomy. Of, course, that is the last option to consider if you are wanting more children in the future.
Just to clarify that I am NOT advocating this surgery. I was only sharing MY experience.
I'm sorry, but I doubt very many doctors will be willing to prescribe narcotics for endo/fibroid pain. I had both AND endocervical cancer. I NEVER was prescribed narcotics for the associated pain. Believe it or not, ibuprofen and other prostaglandin-inhibitors worked very well for the cramping pain in my case. I sought treatment because of painful intercourse and constant heavy bleeding that left me anemic. Again, in my case (I already had 2 children by age 25 and horrible, horrible pregnancies due to the endo/cancer/fibroids and did not want more children) it was the best option and it has made my life SO much better. No narcotic out there would have helped me so much as the surgery did.
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Never underestimate the predictability of stupidity.
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MAXICAT
Journeyman
Reged: 12/13/03
Posts: 73
Loc: TEXAS
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HI,
I agree with you with the fact that bextra is totally useless!!!!! The drug reps fill the dr's offices with samples so they give them out like halloween candy. I was given some bextra the other day and just threw them away, because, there is no reason to take anything that is not helping you.
I also agree with the fact that that the doc did you a favor by sending you away, although it makes you feel like they don't care (which a bunch of them just don't.)
There are tons of doctors around, and it takes a long time to find one who is compassionate and willing to help you, but they are out there. It is frustrating, but you do need help; you can go crazy from everlasting pain 24/7, no sleep, etc.
I sincerely hope you find someone who will help you and you get some relief; you are way too young to be suffering so much. 
Take care!
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Sweetz
Diamond Mind
Reged: 05/11/02
Posts: 765
Loc: Texas!
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Bextra's not totally useless. It has actually helped me with severe cramping. It also helps my hubby with his back problem that he's too chicken to go see the doctor about. You know how some people are. he just KNOWS they're going to suggest surgery and since the injury is 14 yrs old, that was the only prognosis at the time. he will not take any narcotics as he's a former addict of illegal drugs. I don't blame him there. sorry got off topic there. It can be useful, but not usually.
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"If you choose not to decide you still have made a choice."
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Julz
Enthusiast
Reged: 11/17/03
Posts: 222
Loc: NJ Shore
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Hey Night Shade~
First of all,  to hear you had to go thru what you did. My heart goes out to you. Secondly, I agree with you when you say that doctors are not willing to prescribe narcotics for us Endo sufferers. If you're lucky, you'll get one to write you an Rx for Vicodin or Darvocet, with no refills, then they'll try to talk you into taking Anaprox or something similar.
This is the exact reason why I'm here and am an established patient of a decent, legit, US OP!
Just my 2cents,
Julz
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Love never fails. 1Cor 13:8
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clark116
Enthusiast
Reged: 12/11/02
Posts: 221
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I was prescribed Bextra for endometriosis and Crohn's Disease. It does not work at all!!!
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I LOVE THIS FORUM!!!
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