ENDO Messages for October, 2007: Re: advice on treatment for younger woman.....to MISTY

Re: advice on treatment for younger woman.....to MISTY

From: Sherri (anonymous@obgyn.net)
Mon Oct 29 12:03:59 2007

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Misty,

Hi there! I was 27 years old when I had my total abdominal hysterctomy. Everything including my cervis and appendix (covered in endo) was removed. I only had 1 child (4 at the time), we really, really wanted/want more children, but after being diagnosed, having a c-section, and then all my lapraotomies, my endo was stage IV, advanced and had begun to hurt constantly about 5-6 years BEFORE the hyst. was done. I don't understand (and probably never will) where these doctors get their endo info, b/c they always end up contradicting themselves! Now, call me crazy, but I don't think I'm gonna be able to trust any doctor who is so stuck on just 1 or 2 "standard" treatments or other easy "cures", but has no knowledge about a drug (like Lupron) or surgery (like a hyst.) except what the drug-reps tell them about the drug they are there to sell that doctor! Why do these doctors, drug-companies, drug-reps get to make us the guinea pigs of the latest new "fix" or "medicine" for endo? I for one, am SICK to death of it all!! SOOO, for someone like you that no longer wants future pregnancies, periods, etc., yes, the hyst. will 100% stop the periods and the ability to conceive...what they can't guarantee is the level of pain-relief and how long it lasts after a hyst.

After mine, I did immediately start having really bad, very frequent hot-flashes, night-sweats, mood-swings, etc. All of that goes with the territory of immediate removal of hormones, it's like 1 minute you have your regular hormone levels, then the next, your body is experiencing something totally different and new! After a while though....these episodes becomes less frequent, and you don't notice them as much. The night-sweats are worse than the hot-flashes, in my opinion. I don't think I have slept a whole night (8 hours) through without waking up at least 3 times b/c of the night-sweats!! Not having a period is GREAT, the hormonal issues are really not that bad....I would trade my "old" period pain for it again, though, in a second! I'm still trying to figure out this whole moody thing.....I haven't quite got the hang of it yet. I never did take the Lupron, so I don't have any real opinion of it. I've known others who take it, and it seems like it works well, and there are minimal side-effects from it....or....they were still in their original pain plus even more due to the lupron! Who knows? If all your doctor wants to offer right now is Lupron, maybe it's time to start looking for a new doc. Depression is a very common side-effect from either of these options, though. Lupron can cause it, or can make under-lying depression worse, but so can the hormonal changes after a hyst.

I totally understand about feeling like an emotional wreck!! Count me in! This is just such a hard disease to fight every single minute of every single day, and it gets real old, real fast, doesn't it? I have just about given up on the entire western medical community! The most important thing that I can think to tell you...is to research as much as you possibly can on endo, endo after Lupron, endo after hysterectomy, and anything and everything that you feel may be an important issue. If you do decide to have a hyst., and this doctor doesn't want to do it, then take your business to another doctor. Remember that this is YOUR body and YOUR life, and no one else can feel what you feel. I would like to know when these doctors are gonna understand and treat us like we should be treated, and not like we're crazy b/c we "look" healthy, instood of letting one more girl/woman pay for having this incurable disease with her life!! Your doctor may also try to sell you on the idea that if you still had pain while taking Lupron, then it just can't be endo....WTF?? I don't know on what alternate universe that makes sense!!

This is long enough for now....I do tend to ramble and vent sometimes! :) Good luck to you and with whatever you choose to do! Keep me posted....and know that me and every one else in this forum does understand exactly what you are saying, and we've "got your back"!!

At Fri, 26 Oct 2007, mdustin wrote: >
>Misty,
>
>I am 24 years old, I have two children as well. I was just diagnosed
>with Endo in March of this year after many many years of dealing with
>the same issues. Anyhow, after my Lap to diagnose Endo, I was still in
>pain...a lot of pain. So, my doctor said that Lupron was the way to go.
>I knew of "some" side effects and was in so much pain at the time that I
>would try anything. So, I agreed to it. I was given 3.75 mg of Lupron
>per month for three months. It did stop my bleeding, however, it did
>not stop my pain. It only made things worse for me for a while. On top
>of the pelvic pain I was already getting, I begain to have
>joint/bone/muscle pain from head to toe; hot flashes; moodiness;
>confusion; eye problems including blurriness and temporary blindness; I
>could not concentrate, drive, type or do anything that required my
>attention...my head was in perminant fog, what I can only describe as
>feeling constantly drugged/drunk. I began having spasms, mostly
>pelvic/bladder, but also experienced them from head to toe.
>
>After the second month of this, I could not take it, I begged my doctor
>for something to help me. I was given an add back therapy (Premerin) to
>eliviate some of the problems. This didn't really kick in untill after
>the third shot. I still had pain untill after I stopped taking the
>shot. It takes just as long that you've taken Lupron for it to get out
>of your system....so I had this going on for almost 3 months after
>taking the last shot. It was a half of a year of this! I also did not
>understand this before taking Lupron. Since then, my pain is still
>there. And my doctor has now told me that there is nothing he can do
>for me. He won't do another Lap and said the only other option for my
>is a Hystorectomy. Now, from what I understand...once Endo is in your
>system...even if you get a hystorectomy, Endo can attach to any organ in
>your body...not just your uterus/ovaries. For that reason...I have
>decided that a Hystorectomy is not the best option for me. I, too, do
>not wish to have any more children, but how awful would it be...to go
>through a hystorectomy and all of the things that does to your
>body...and then have Endo flare up on another part of your body??? A
>hystorectomy does not cure Endo.
>
>Don't get me wrong...I understand where you're coming from...believe me.
>And I know that Lupron has "helped" some women. But, for those women,
>Lupron is a temporary "fix". And for some women...like me...it may do
>more harm than good. It is a decision that we must all make for
>ourselves. Before you decide, I hope you will dig deep into research
>about it before putting it in your body. Ask questions from women who
>have experineced it...get informed. That is your best defense. I am
>here if you should have any questions.
>
>Hoping for painfree days,
>Maggie
>
>At Thu, 25 Oct 2007, anonymous@obgyn.net wrote:
>>
>>I am a 27 year old mother of two children. I was diagnosed with endo.
>>at the age of 16. I have also had many other female problems on top of
>>this. I have had three laparoscopys over the years and have been on
>>birth control with out relief. I am now told to try the lupron therapy
>>but am terrified of the prospect. I really don't think the risks are
>>worth it. I am already dealing with depression among other things that
>>are side effects of the drug. My doctor said I can do a hysterectomy
>>but he would rather try this first since I am so young. I have been
>>through so much with my female organs that I think I just want to have
>>the surgery. I am not planning on having any more children. I am
>>worried about having the surgery so young and what will happen to my
>>body if I do. I really need to talk to some one who has dealt with this
>>stuff at such an early age as myself. I really need advice. This
>>illness has consumed my life and is driving me crazy. I am an emotional
>>wreck.
>>
>>--
>>misty
>>

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