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Re: About to give up.....Cari, to Stephanie
From: Trisha (anonymous@obgyn.net)
Sat May 26 02:30:53 2007
I agree completely, it's so frustrating! Right now I'm with a dr. who
I'm not sure is very knowledgable or not. But at the moment I'm not bad
enough to have surgery again and this dr. precribes me pain meds and
isn't forcing lupron on me. But when I come to the time that I need
surgery again, I will be doing my best to go to Redwine or Cook,they are
closest tome, although I am still in the process of trying to research
if there is anyone knowledgable in my area. I've only had one lap and
the dr who did it I thought would have been good-I tried to research
alot and learned about excision and my dr said that was the method he
used-so just learning about everything I thought I'd be in good hands.
So after surgery I learned that he didn't remove everything-he believes
you can't-and he burned off as much endo as he excised-and after surgery
he pressured me with lupron. I learned that even though making sure a
dr does excision is a must-it certainly is not the only thing to look
for. I don't understand the unwillingness to not prescribe pain meds.
The dr will tell you himself that the amount of endo often does not
correlate with the amount of pain a person has, then they perform
surgery, tell you that they didn't/couldn't get it all, and then look at
you like your a lunatic when you tell them you still have pain after the
surgery like it's beyond impossible? Anyone who can find a dr that truly
understands endo, and knows how to excise it properly is very lucky. But
for the others who havn't found one or are not able to see one at the
moment due to traveling, finances etc., what are our options if we are
in pain? We can suffer, takes loads of ibuprofen that isn't good for us
and have our pain effect every aspect of our lives, or we can have
surgery with our dr. who doesn't know a whole lot about it and doing so
won't cure us, it will cause more scar tissue and our pain will either
still be there or will come back soon after, or we can try other
treatments such as bc or lupron etc but nothing is a cure, they don't
work for everyone or will only work for a period of time, or they have
horrific side effects, or we can try to manage our pain with meds so
that hopefully we can still lead a normal life. Which is the best
choice? For me, I'll take the pain meds. And what if a person chooses
the lupron b/c the dr won't prescribe pain meds and the lady takes
it-what will the dr. do if and when her pain increases when it is a
fact that your hormones surge in the begining and will likely cause a
person more pain? We really can not win with either choice, if we don't
have access to a specialist, all we can do is weigh our options, the
pros and cons and then choose the lesser of the evils for us and our own
personal views/situation. And if taking pain meds is what is the lesser
evil then that should be an option. I wouldn't wish this disease on
anyone but I would love to have the dr.'s that think we are crazy and
dismiss our symptoms deal with the things we deal with reguarly for just
a 1 day-things would be so different!
At Fri, 25 May 2007, Cari wrote:
>
>I know, and it just enrages me. That plus the judgement. Wasn't pain
>medicine developed to help those who need it? I have learned from my
>experience that is for sure, no more do I judge others in pain...
>
>What I really wanted to say is that after my last lap, three weeks ago,
>one of my docs came in to my hospital room and talked to me in detail
>about the surgery and actually took the time to answer my dad's
>questions (my mom passed away and my boyfriend could not be there so my
>dad has become my surgery buddy) which was so cool. The jist of what he
>said at one point is that our periods are not supposed to be
>debilitating at all. Yes, cramping is normal but it should never be
>severe and for too long docs wrote it off as part of being a woman. Now
>that I know that, I feel better to have someone side with me for a
>change. I used to have cramps and often they were pretty bad but a
>couple of Advil always did the trick...with endo and adenomyosis, I find
>Advil doesn't cut it at all. Doctors on the whole don't get that. A
>few that focus on endo get it, but most just don't. Typical thinking is
>that women are drama queens.
>
>I just wish the docs knew how humiliating this process can
>be...constantly subjected to ultrasounds and exams of our most personal
>private body parts, being probed and treated like pariahs for asking for
>medicine...and how stigmatized pain meds have become. Where is the
>compassion? I have put a career in archaeology on hold because of
>pain...
>
>Sorry for the rant ladies, I am just never going to understand it
>all...but maybe if we continue to speak up and create awareness, who
>knows?
>
>--
>Cari
>
>At Thu, 24 May 2007, Stephanie wrote:
>>
>>Hey Cari, i totally agree that we need to do something to let the
>>"world" know what kind of chronic pain we suffer and how much it affects
>>our lifes! And its very true that everyone thinks that there just NORMAL
>>cramps. It drives me NUTS to hear people tell me that. Like you said,
>>only if they would see us at home, and how we spend our evenings crying
>>and in bed, only then they would understand, that it isnt just NORMAL
>>cramps! Sometimes, i explain to others that the pain is like the pain
>>going into labor! Those are the types of cramps we deal with on a daily
>>basis! Thanks for the words of encouragement, they mean a lot to me!!
>>Steph :)
>>
>>At Thu, 24 May 2007, Cari wrote:
>>>
>>>Stehanie,
>>>
>>>No great advice but words of encouragement, I have been there. What
>>>enrages me is that this is a chronic pain condition, no cure etc and we
>>>are treated as though we are medication seeking addicts. Docs prescribe
>>>ibuprofen like its candy saying that the pain is merely inflammation etc
>>>and that makes me mad...once upon a time, a couple of Advil made my
>>>cramps melt away. Now with endo and adenomyosis, my ovulation and
>>>periods are horrific. Talk candidly with the doc, explain that taking
>>>motrin is great but the pain becomes unbearable and incapacitating and
>>>you want help.
>>>
>>>I often wonder, if we had some other "more tragic" (not my words, my
>>>ex-doc's) disease that caused pain the doctors would bend over backwards
>>>to help but too many doctors assume our cramps are not that hard to live
>>>with. They should come to our homes and see us curled up in the fetal
>>>position with pain tearing out our insides. I can't even tolerate my
>>>boyfriend to touch me just to rub my back because it just sends pain
>>>shockwaves thru me...
>>>
>>>I don't know what it will take to raise awareness...maybe if we keep
>>>fighting...
>>>
>>>At Thu, 24 May 2007, Stephanie wrote:
>>>>
>>>>Hello everyone...well iv posted a few messages this week, due to this
>>>>excrutiating pain episode i had on Monday night. Quick brief..last week
>>>>i ovulated and my pelvic/back pain for some reason increased, since then
>>>>iv been taking Darvocet every 4 hours, otherwise i cant even work. So,
>>>>i called my gyn and asked for something stronger at least until this
>>>>pain subsided a little. Well i get a call back on Wednesday from the
>>>>nurse telling me that the doc would only prescribe me IBUPROFEN 600 mlg
>>>>every 6 hours!! Later on in that day i called back to get a refill on my
>>>>darvocet, since i only had about 3 left. Well the doctor DENIED it.
>>>>When i asked why, the nurse just said that the doctor would only
>>>>prescribe ibuprofen for now. It made me SO MAD! I cant believe she said
>>>>that. After i had told her that my pain had INCREASE and not even
>>>>Darvocet was helping and now, they wont even give me a refill! Im so
>>>>upset, i just cried!! I have an appt next week w/a new gyn (who does
>>>>excision on endo) but im just so worried, since i still have to wait
>>>>till June 1st and no pain meds. Then i feel that they must think im
>>>>some drug freak or something, i cant believe they cant understand how
>>>>painful this can be!!! Sorry for the long story once again....I can
>>>>totally understand all of the other woman who feel like giving up! I
>>>>guess we get to a point we just dnt know what else to do!! Hope everyone
>>>>else is having a better day!! :) Steph
>
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