Re: endo burned out and no further treatment?
From: Sarah (anonymous@obgyn.net)
Fri Sep 30 08:09:50 2005
Hi Sudsey,
I just wanted to say that i nodded in agreement the whole way through
your email!!! In Feb 05 i had my first Lap for Adhesions in my womb and
whilst the procedure was taking place my consultant found i had severe
endo on both ovaries which had stuck them done and caused more
adhesions! After the OP i was told he'd got it all and it shouldn't come
back!! Well 7 months later and i was in even worse pain, I was put on
Synarel spray to stop my periods! The pain started off as the
occassional day of being uncomfortable, dull aching and sharp pains and
also terrible pain when i had a wee and then it was continuous agony!! I
went to my consultant a few weeks ago and he tried to say it was my
Irritable Bowel playing up but i've suffered with IBS for 10 years and
have never had pain like this so i kinda knew it was my endo but how do
you tell a trained professional this without him thinking your a "know
it all". Anyway the pain was just getting worse and worse until i
couldn't even work and no pain killers helped so i ended up my local
hospital who told me it was more than definately my endo! I then told my
consultant this and that is when he agreed to do another Lap. I had
that done last Wednesday and surprise surprise the endo was back
probably worse than the last time! It was on both ovaries and also on my
bladder and to top it off i had an endometrioma (chocolate cyst)
actually IN my left ovary which he had to cut into to drain!
I suppose the moral of this story is as wonderful as these doctors are
they are not G-d and we know our bodies better than anyone so as
difficult as it is we must made ourselves heard!! I'm now so scared that
my endo is gonna come and i'm gonna have to go through all this again,
surely there is only a certain amount of times they will treat you with
a lap so what will the options be then!! The spray obviously did nothing
so what now, the pill, a hysterectomy, who
knows.................................
I'm only 32 and the thought of not being able to have children fills me
with fear but i am still trying to stay positive.
I do hope and pray that one day they find a definate cure for Endo but
until they do we must all stick together as no one knows what we are
going through but us who suffer this terrible disease!
Take good care all
--
Sarah L
At Thu, 29 Sep 2005, Sudsey wrote:
>
>I guess that is good news and how awesome to be out of pain.. Endo in
>my experience always comes back and hence why no medical professional or
>even researcher has been able to slap down on the table the actualy
>cause yet only a half dozen theories that for one reason or another
>haven't moved past that theory table. How it gets there to begin with
>is the cause and the only sure fire cure. They can cut it out burn it
>off and what not but where it came from to begin isn't being resolved
>which I think is my biggest frustration with Endo above even the pain.
>My doc said I removed it you;ll be good to go wont come back. Well I
>knew better after researching it to death that first month and yet he
>assured me. No pain for 3 whole glorious months to have it come back
>mild then increase and I went back and he looked at me like I'd just
>developed a new head. It shouldn't have come back as if now I'm
>suddenly a liar over what I know and feel in myself is real. Again it
>was removed and again I'm told wont come back I was real good and washed
>it all out so well. I should have known not to fall for it. 3 months
>again la la pain free loving it and then bam here we go again and he
>refused surgery on me. Gee thanks.. 9 years of Endo taught me that not
>all docs know it all nor do they willingly tell you lies they too are
>often missinformed which isn't their fault 100% but I get upset when I'm
>telling them hello I hurt it's back and I'm not listened to. I think
>sometimes we need to learn as the patient to inform them with real and
>true medical documentation and medical journals where they are wrong and
>beg them to get knowledgeable so they can help us and don't question us.
>Now how one goes about all that without confronting one angery doc in
>the end I'm just not so certain.
>I tried to inform my doctor there is something called Post tubal
>ligation syndrom to face a very upset doctor and this year while surfing
>medical journals there it was post tubal ligation syndrom and it's whole
>nasty reality yet 9 years ago my doc said you just never know who's
>giving the information behind those wed pages and it's all lies. Ok so
>what do I show back up there today and toss a medical journal at him and
>say and it was all lies huh? As tempting as that is it would be so out
>of character of me to do such.
>It's truely up to you as the patient to say I'm not so comfortable about
>the wait and see game and if met with resistance seek a second or a
>third opinion if you must. It's about you not the doctor but how you
>plan to deal with the Endo b/c in the end that doctors not in the pain
>over a decision she's made for you, you will be. Sometimes finidng the
>right doc you are confident in and who you have ease of conversation
>with can make all the difference. We pay them for their service
>remember that. If I'm shelling it out I want what I deserve as far as
>respect to be listened to and taken seriously when I'm in pain or not
>feeling my best. I don't like when docs compare my symptoms or disease
>to any other endo Patient b/c this disease is different in each of us
>and we deserve to be treated that same way.
>I'm so happy your pain is gone and I hope it stays gone for you but talk
>to your doctor and express your concerns and go on from that point with
>what you feel is best for you..
>hugs
>Sudsey
>
>At Thu, 29 Sep 2005, Lisa wrote:
>>
>>Ok,
>>I have had an easy time compared to most of you. I have had alot of
>>pain and frustration but during a recent lap I found out I had endo. I
>>had my follow-up today and my doc says that she burned all of it out (4
>>areas?) She said there is no need to do anything furhter unless I start
>>having symptoms again. I was all ready for her to do some type of
>>treatment so it didn't happen again. Is it normal to just let it go
>>now? Has anyone else experienced this? I don't want to get back where I
>>was. I guess I am feeling lost. Please let me know what you all think.
>>Thank you
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