ENDO Messages for June, 2007: Re: Thank you, Cari, from Andrea

Re: Thank you, Cari, from Andrea - trying to help ;) to Kate

From: Cari (anonymous@obgyn.net)
Thu Jun 28 10:03:23 2007

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In reply to: Kate: "Re: Thank you, Cari, from Andrea - trying to help ;)"

I know of course that a hyst will not cure my endo, but it would cure the adeno and I think that was what we were both really wondering. As I was telling Andrea, I am stage 4 and the junk was everywhere, bowels, rectum, bladder, etc...

I will check out that book you recommended. For me its been a struggle to find what really works to help my body reduce pain and imflammation etc. Eating organic most of the time helps a lot!

Thanks for the advice to Andrea, I can use that as well. As an academic, I am a research junkie so any new info is a gift.

--
Cari
At Wed, 27 Jun 2007, Kate wrote:
>
>Hi Andrea
>
>Sorry to intrude on your conversation, I just feel it necessary to point
>out that if you do have a hysterectomy, but leave the ovaries behind
>there is still a chance that this will not get rid of the endo.
>Endo doesn't just stick to the uterus, I have had endo for about 7 years
>now and I've only had 1 Lap and that was to diagnose it, and I was
>classified as stage 4, and in my case I was told that my endo has left
>the uterus and set up home else where around my body.
>the trouble with Endo that docs and other don't know or fail to tell you
>is that endo is hormone based, and usually relies on the messages that
>the ovary sends out to the rest of the body.  BUT and heres the really
>problem is that IF your unlucky enough to have endo leave the uterus and
>go to other places in the body, it no longer gets the messgae from the
>ovaries, and so research have found out that the endo cells are now
>producing their own hormone messages which counteract the proper
>messages, this basically means that all birthcontrol pills that you
>maybe getting are working on the uterus but not on the rest of the body,
>and even if you do think about a hysterectomy it may not rid you of
>Endo.
>I recomend you and anyone else who has endo and wants to learn more
>about the condition read this book, it's called "Endometriosis: A key to
>Healing through Nutrition"
>I have found this book very good, and it has helped me, as it stands I
>am going to attempt to go drug free by the end of the year, I know that
>I might be a lucky one and actually overcome endo, but this book also
>tells you things that Docs haven't got a clue about and it's only about
>6 dollers on Amazon
>I hope that this has helped
>Kate
>
>At Tue, 26 Jun 2007, andrea wrote:
>>
>>Thanks so much for your encouragement, it means so much.  It seems like
>>the people in the worst pain on here or recovering from surgery are
>>always the first ones to jump in and offer help and advice.  That is so
>>remarkable to me.  I have the summer to think about what I am going to
>>do and going to CO to visit family this Thur til next Thur, so I won't
>>be on here again til the 5th or 6th.  Have a good holiday & talk to ya
>>soon! I hope things start getting better for you too.  ;)
>>
>>At Mon, 25 Jun 2007, Cari wrote:
>>>
>>>hi andrea :)...
>>>
>>>i have had two laps and a full laparotomy.  the last lap they discovered
>>>that in addition to endo, i also have pretty bad adenomyosis.  like
>>>endo, adenomyosis cannot be diagnosed via ultrasound but they can
>>>certainly get a good idea if it is present by the thickness of the
>>>uterine wall...my uterus was "huge" on u/s and my endometrial lining was
>>>always engorged even when my period was not even close to starting.  an
>>>endo specialist and his team did my surgery that lasted nearly four
>>>hours.  it is true, surgery cannot remove the adeno (not at all),
>>>however, neither will lupron.  i have done a lot of research and have
>>>discussed this with two ER docs and a new gyn...the only "cure" for
>>>adeno is a hysterectomy (so regarding adeno, yup, i am in agreement,
>>>take it out, take it out)...another option i am told is birth control
>>>pills.
>>>
>>>and i also had it in the bowel, the bladder, ureters...pick a spot, and
>>>endo was removed.  i know it sounds scary and costly, but i think if you
>>>get any relief at all, it is worth it.
>>>
>>>i understand your emotions, believe me.  surgery will likely help any
>>>endo pain you have, but the adeno will always be there.  i personally
>>>have opted to have the hysterectomy next year...(i was told to really
>>>think it thru for a year).  i am like you, if it means i have a bulk of
>>>my pain gone...then i am all for it...where do i sign? and my cousin
>>>just had her uterus out, she jokingly said she's having more sex than
>>>ever...so who knows?
>>>
>>>take care,
>>>cari
>>>
>>>At Sat, 23 Jun 2007, andrea wrote:
>>>>
>>>>I can't stop crying.......Thursday I went in for an ultrasound and they
>>>>found Adenomyasis (Endo deep inside my uterine wall) and the doctor said
>>>>this can't be reached or removed with laparscopic tools during surgery.
>>>>He said the only way to get that kind of endo is to take Lupron to
>>>>shrink it and your body will absorb it naturally.  The doctor also said
>>>>there is massive lesions around my ovaries and probably my bowels too.
>>>>For all of you who have read my posts, you know I am totally against
>>>>Lupron and scared to death of it.  Now, I am thinking....do i get the
>>>>surgery at all??? My insurance only pays half and the cost is $25,000!
>>>>He said even if he got it all, but NOT the adenomyasis, I could still
>>>>have the same pain I have now.
>>>>
>>>>I'm wondering now if a hysterectomy would get rid of the adenomyasis? I
>>>>don't have kids, but would be willing to give up my uterus if I could
>>>>just be pain free.  I would rather do that than take Lupron too.  But, I
>>>>am wondering what your body feels like without a uterus.  I would keep
>>>>my ovaries.  But I hear that your organs fall, and your insides feel
>>>>different after a hysterectomy.  Would sex feel the same? I have all
>>>>these questions.  Please give me some advice if you know about
>>>>hysterectomies....I think that may be my only option now.

Next message: josie: "Re: Pelvic muscle floor spasms -to trisha"
Previous message: mdustin: "Re: How long did you bleed and how heavy after lap?"
In reply to: Kate: "Re: Thank you, Cari, from Andrea - trying to help ;)"

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