Re: after Lupron---very Long---Please read
From: Amanda (anonymous@obgyn.net)
Tue Apr 20 09:56:04 2004
Hi Pansy:
I wish there was am option to suggest that is all positive, but of
course all of our treatment options have drawbacks unfortunately. I am
close to your age: 26.
I am just finishing a 3 month course of Lupron (no addback). My dr told
me that if you take it less than 3 months, you aren't likely to see
lasting results, though I think you aren't likely to anyway. I had much
better luck with Lupron than you did- no pain, no bleeding, and I hope
it takes a long time to get out of my system. I only stopped taking it
because I am having surgery next month to remove my tailbone.
A lap might bring you releif, but often it doesn't, or the result is
temporary. Also, even a good surgeon may leave behind scar tissue and
adhesions causing even more pain. If you choose this option I'd want to
make sure the surgeon was aware of the original surgical report and
comfortable with removing Endo so close to your bowels. Perhaps if
he/she had a bowel speciaslit in the room it would help. Otherwise
they'll just do the same thing as the last surgeon....look around, say
no way, and close you up.
Continuous bcps seem to a popular option and if its been awhile you
might want to try it. Make sure that your dr realizes you are taking
them continuously so they put you on an appropriate one for that. Also,
have you considered Depo Provera? I had problems with side effects when
I used it but sometimes it was worth it because I was pain free. Also
Depo Provera shrinks the lesions which is why they wanted you to take
Lupron right? If the lesions shrink surgery might be more feasible. One
last suggestion: the Progesterone IUD. I don't know anyone who has used
it but I have heard good things about it.
Last but not least- the big H. I am seriously considering this myself
once I have my tailbone taken care of. I have tried everything (Except
Danazol) and I am sick of the pain. We are young, but do you really
think we'll make it to menopause? Thats 25 years away! I know I won't;
I'd go mental. The only drawback is that we are still bone building
right now...until 30. I am not sure of HRT will let us still build for
the remaining years or if it will just help us prevent loss? My dr and I
discussed it seriously last time I visited. It's scary...a big step-
but its hard not to smile at the vision of no periods ever again!
Amanda
At Tue, 20 Apr 2004, Pansy wrote:
>
>Hey ladies,
>My pain started in 1993 when I was about 13 years old.About 2 years
>after I got my 1st period.I went to Planned Parenthood because we did
>not have medical insurance.So I never had one Gyn.Well whenever we would
>bring up my horrible cramps the dr's would tell me to use heating
>pads,take Tylenol,hot baths.You know the *period pain is normal*
>line.Needless to say.I believed them.I thought all girls went through
>the pain I went through.I missed so much school bcause of my periods
>that I failed 7th grade.That is how bad it was! And they still told me
>this was normal! In 1997 I went on BCP's for about 6 months.I went off
>of BCP because of the side affects.I was pregnant less than a month
>later.I had so many problems with my pregnancy that my Dr *could not
>explain*.I went into pre-mature labor (my body was trying to abort) the
>1st time at 2 months along.Then again at 4,5,7,and was finally induced
>at 8 because I started bleeding horribly.The Dr just couldnt figure out
>why my body was trying to reject the baby so bad.Well I delivered a
>healthy baby boy in September of 1998.I went almost 5 years with totally
>pain free periods.I was in awe.I would tell everyone "I cannot believe
>how painful my periods were before I had my baby and now they are just
>GONE!" Well if you cannot tell yet,I still had NO clue what Endo was.And
>little did I know,the nasty lil' disease was steadily growing and
>waiting to attack again.My painful periods returned in 2002.I went in
>for my 6 month pap.And it hurt sooooo bad!!! So my Gyn started asking me
>questions.Of course I never brought up my bad cramps with him because I
>thought they were normal.And for about a year then I had been having
>horrible pain drig sex with deep penetration.Again,maybe I am gullible
>but I figured this was normal too.Well finally I had a Dr that said NO
>this is not normal.I thought I found a good Dr.He was pretty positive I
>had Endo.I was scared to death.I never even heard of Endo!He ordered a
>Lap to see if he was correct.I was diagnosed with Endo through
>diagnostic laparoscopy in July of 2003.I say diagnostic because that is
>all it was.They opened me up.Said I had Endo.Closed me back up.When my
>Mom asked why nothing was removed like was discussed before hand.The
>Dr's reply was *it is too close to the bowels and too risky to
>remove*.So now I am having 2nd thoughts about this *good* Dr.He opened
>me up and pentrated my insides with foreign tools and closed me back up
>without fixing anything! I was soooo upset.I missed work and had to go
>through healing for nothing! All for nothing.Maybe is wasn't for nothing
>but that is exactly how I felt.Well I go back for my Post-Op.He tells me
>why he didnt remove any of the Endo yada yada I want you on Lupron.So I
>am like OK I have to think about that.I come home,get online and search
>Lupron.I seen so many horrible things about this drug that I was afraid
>to take it.I kept thinking if he would have done his job I wouldn't need
>Lupron in the 1st place.So having all these regrets towards him,I
>decided to see someone new.My new Gyn was very nice and LISTENED.So we
>discussed treatment options.After months of fighting the pro's and con's
>I figured *it cant get much worse than it is now*. So I had my 1st
>Lupron injection on January 21st 2004.I was on
>add-back,anti-depressants,nsaids,just a whole bunch of stuff. Well
>after my 1st shot I had my period 14 days later.It lasted 14 days.It was
>horrible! I had really bad hot flashes and unbearable night sweats.All I
>could think was what did I get myself into! The nurse promised me it
>would all be for the best once I got through the 1st month.Things did
>get a little better after the 2nd shot.Until a few days after my 2nd
>shot I had horrendous pain in my left hip near my bikini line.I ended up
>in the ER.They said it was a pulled tendon.But I was having
>doubts.Thinking the Lupron was messing with my bones already.But I am
>not sure if it could ALREADY.I had stopped taking the add-back 2 weeks
>into the 1st shot because I kept missing doses and thought maybe that
>was why my period would not end.Well after my 2nd shot the headached
>started.It lasted 2 weeks and would not go away.That is when I decided I
>was not taking my 3rd shot.I had already gone of all my other med's to
>rule out any connection with this never-ending headache.A few days after
>my 3rd shot was scheduled the headache went away.A few weeks later I
>started getting this sharp pain near my right ovary.It is still there.I
>am starting to feel crappy again.And I need another treatment option
>pronto.I cannot deal with this anymore.I do feel alot better since I
>have not had my period.And I am dreading its return.It has been exactly
>2 months since my last shot.So I know it is coming -sigh-.I know the
>Lupron did not work because sex is still very painful.So I can imagine
>how my period is going to be.So right now I am trying to figure out what
>to do next.I am to the point where I just want a Hyst to get this all
>over with.But I am only 23 years old.What should I do???? Should I push
>for a Lap to remove it? Go on CBCP's (was on them when I was younger and
>couldnt handle the side affects)? Hyst? I am at my wit's end here :o(
>This was very long and to those who read it Thank You very much!!!!
> And thanks in advance for any input you can offer :o)
> Wishing you all Pain-Free Days
>
>--
>Pansy
>
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