ENDO Messages for January, 2005: Re: changes after Lupron - added info about Endo and medications

Re: changes after Lupron - added info about Endo and medications

From: NIKKIE (anonymous@obgyn.net)
Mon Jan 3 13:07:25 2005

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LUPRON HAS LEFT ME BROKEN. I HAVE HAD BROKEN TEETH, LOSS OF HAIR HORRIBLE HOT FLASHES. I HAVE NO DESIRE FOR SEX. LUPRON DID NOT EVEN WORK FOR ME. At Wed, 29 Dec 2004, anonymous wrote: >
>Have you had a complete workup? At this point, given your history you
>should probably have your thyroid checked (inability to stabilize body
>temp and sluggish or hyperactive metabolism are signs of a possible
>thyroid imbalance) a fasting glucose test, cholesterol check, full
>hormone check, bone density check - in other words a complete
>endocrinological check up.
>
>Now for some practical information about pain medications:
>
>Drug companies often get their products approved for use long before any
>real useful 'after-effects' information is acquired, otherwise known as
>'long-term effects'. I think many of the research companies operate
>very short-sighted looking only at the one singular thing they are
>trying to achieve and often miss the signs of the other 100 things that
>are being affected by their latest 'wonder drug under development'. This
>is why we are now hearing about all these drugs being recalled. Vioxx,
>Bextra and Celebrex were being developed for people with SEVERE
>arthritis who were unable to use or found no relief from any other pain
>reliever. It was not tested for or approved for general pain management
>but it was being prescribed for such which resulted in too many people
>taking it who should not have been. Luckily there were doctors who were
>tracking and monitoring their patients and properly reported the
>side-effects their patients were experiencing.
>
>Part of this is due to the advertising drug companies are doing.
>Patients are diagnosing themselves from TV commercials and, as the
>commercial advises, going to their doctors proclaiming they need this
>pill or that pill. Viagra is a perfect example. Most of the people
>pictured in the commercial don't need it but they look just like you and
>me and if they use it and look so happy then maybe I should use it too.
>And now we have 'celebrities' on TV bragging about how their doctor gave
>them Viagra for a wedding present so they could enjoy their honeymoon!
>They were healthy, active and in their 20s/30s!!! Is this appropriate
>medical practice?
>
>Women with endometriosis are particularly susceptible to being
>prescribed inappropriate drugs for pain management. The medical
>industry seems to have gotten into the habit of throwing pills at
>everything and it always has to be the strongest first it seems when
>many times ibuprofen alternated with tylenol is all that's necessary.
>For those days when nothing is working, that's when you take the
>prescription stuff but always, always, always read all information
>available on these drugs first. You will find almost all of them listed
>with full information including side-effects and food & drug
>interactions at http://www.rxlist.com bookmark that site, it may save
>your life someday! Some prescription pain medications cannot be used
>with ibuprofen or aspirin.
>
>Always try for the simplest formulation first. At more difficult times
>additional non-medical methods can be used as well, such as heating pads
>or hot water bottles, meditation, massage, sleep or even dietary change.
>Before you try that new superduper strength pain medication, try taking
>ibuprofen then 2 hours later tylenol then 2 - 4 hours later more
>ibuprofen, and 2 - 4 hours later more tylenol and keep repeating this
>pattern or adjust as needed until your cramps cease or you can lower the
>amount of medication you're taking. If you do that around the clock
>when cramping begins you will find that the cramps don't get quite so
>bad, you may find you have fewer clots and you will not have the groggy,
>sick stomach and out-of-focus effects of the stronger narcotic based
>drugs.
>
>Many women find that certain foods eaten in the days just before or
>during their periods cause extra cramping. The best way to determine if
>this is happening to you is to keep a log for a month of what you are
>eating and drinking; how you feel each day, what level and where your
>pain is; what meds you are taking, why and how much; and see if you can
>see a pattern and then make that pattern work for you.
>
>All of this requires some work on your part but you cannot rely on the
>doctors and drug companies to do it all, you have to take an active role
>in controlling your endo or it will control you and send you into a
>whirlpool of depression, pain, insomnia and despair and you don't
>deserve that. On your very worst days allow yourself to just go into
>hibernation for a bit, give yourself the extra rest you need. Try to
>anticipate these days and have some meals cooked ahead and frozen for a
>quick heat-up or treat yourself to ordering from a restaurant that
>delivers. Don't feel guilty about it, you worked hard the other days of
>the month to keep it all together and when this passes you'll get right
>back to it. You didn't lose anything, you didn't lose control of the
>endo it's the cycle of the beast and you do what needs done to take care
>of yourself. Often a part of the pain comes from the constant pressure
>we put upon ourselves to act like everything's fine and we don't need
>anything from anybody even when we know otherwise. That kind of stress
>just amplifies everything else and serves no useful purpose at all,
>besides, we're not fooling anybody.
>
>Good luck and happy trails to all.
>
>At Wed, 29 Dec 2004, anonymous wrote:
>>
>>I was diagnosed w/ endo almost 5 yrs ago. After my first lap, I was put
>>on Lupron for 6 mos and then took BCP. I haven't had a period since
>>that first surgery. I felt fine for about 2 1/2 yrs and then it came
>>back. I had an unsuccessful lap and was put back on Lupron for another
>>6 mos. It didn't help, I felt absolutely terrible during the treatment,
>>so I had surgery w/ a specialist who was able to help me. However, I
>>haven't felt the same since that last dose of Lupron. I know it's done
>>damage to my bones and my teeth because I was never put on add-back
>>therapy. My specialist was furious that I'd been on it twice and says I
>>can't ever be on it again (not that I would). But beyond that I just
>>feel strange. It's like my hormones are completely screwed up, I still
>>have hot flashes (I was always very cold natured), my skin is terrible,
>>I've gained weight that I can't lose no matter what I do, I have NO
>>desire to have sex, which is causing problems in my marriage, I have
>>trouble sleeping, you name it. Has anyone else experienced this?

--
NIKKIE

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