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Re: Update to D
From: mdustin (anonymous@obgyn.net)
Thu Jun 21 14:31:02 2007
I do not want a hystorectomy. That is not by any means what I'm trying
to get across here. I know there is no cure for Endo. My cousin has
Endo and opted for a hystorectomy and still has some symptoms of the
Endo. I am aware of this. What I'm after in all of this is to figure
out what I may very well be facing in my very near future. Would it be
more surgery? Or what?
You really must excuse me, this has been a very short and abrupt road
for me thus far and my body, mind and spirit are still catching up. I'm
still hopefull that I could experience some decent relief from all of
this, like some other women, months...years....god that would be
wonderful. I haven't had a break from this and I need one. Where's my
break? I'm not bleeding, due to the Lupron and yet I still cramp and
have pain like I'm having my period.
At Thu, 21 Jun 2007, D wrote:
>
>Please listen to what "anona" posted! Hysterectomies do not cure endo!
>There are a lot of women who have posted to this list and others who are
>still dealing with the same endo pain after having their organs removed.
>Even if you've had children, your ovaries still make hormones that are
>very important for your health, and surgical menopause can be much
>harsher than natural menopause because it comes on immediately.
>
>Here are a couple things to read about endo and hysterectomies:
>http://www.endometriosistreatment.org/html/reprint7.html
>http://www.womenssurgerygroup.com/conditions/Endometriosis/myths.asp
>
>There are doctors who can effectively and thoroughly remove the disease,
>and they have very good success rates - fewer than 20% of the women who
>have their endo excised by an expert need surgery again within 5 years.
>
>Hormone therapies are temporary, they may shrink the disease for a
>while, but only surgical removal can actually get rid of it. And as you
>are finding out, hormones don't work for everyone! Endo can produce it's
>own estrogen, which is why trying to "starve" it doesn't work.
>
>To mdustin - Please find a new doctor! This guy isn't saying what's next
>because he's done everything he knows how to do - there is no "next
>thing" with him. From what you've written, he's told you directly that
>he's done all he can and he doesn't know anyone to refer you to, right?
>At this point, it is going to be up to you to find a doctor who can help
>you. I wish I had an easier solution, but I don't know of one. Each of
>us bears the responsibility of making sure we get to the best doctor
>possible - no one else can do that for you!
>
>There are some good resources for finding endo specialists - ones who
>excise the disease, they don't burn, coagulate or ablate it - there's
>the endodocs yahoo group I've linked to at the bottom of this post, also
>this list of doctors:
>http://www.geocities.com/endovictims/endodocs.html
>and asking the women here and in other support groups is always a good
>idea - word of mouth is still the best way to find a good doctor, even
>on the internet!
>
>The truth is that many women find themselves right where you are, and it
>stinks because there aren't enough doctors who really do understand
>endo. If your current doctor really understood it he would never have
>been surprised that the Lupron didn't work!
>
>I don't see any reason to think you are going to get any better results
>with the third shot than you did with the first two, I hope you will
>reconsider taking it!
>
>Please find a real endo specialist who can remove the disease by
>excision!!!
>
>At Thu, 21 Jun 2007, Amanda wrote:
>>
>>Sorry, Mine came back too after surgery. I did try hormone treatments
>>but had really bad reactions. My doctor is actually great at what he
>>does. We tried hormone therapy, bc, lapo, and pain medication. Every
>>situation is different and everyone is at different stages in their
>>life. I have two boys and my husband had already had a vasectomy, so a
>>hysterectomy isnt out of the question for me. I have had a few friends
>>have this done and it did stop their pain. I've actually never met
>>anyone face to face where it did'nt help them, but you have to be in the
>>right stage of your life to gt this done and you have to want it. For
>>me I'm sick of the pain medication, can't take hormones and I've tried
>>other things and nothing has worked yet, I'm tired of the pain. But
>>that's me.
>>
>>At Thu, 21 Jun 2007, mdustin wrote:
>>>
>>>Yes, I had my lap done in March. Then a month later, my pain came back,
>>>now I'm in the process of Lupron and add back therapy.
>>>
>>>At Thu, 21 Jun 2007, Amanda wrote:
>>>>
>>>>Have you had lap yet? If not then that to me would be the next step. I
>>>>had thi done last Nov. My doctor said really the next step after lapo
>>>>and drug treatments if you wan them would be to either deal with the
>>>>pain or have a hysterectomy if that's an option for you.
>>>>
>>>>At Thu, 21 Jun 2007, mdustin wrote:
>>>>>
>>>>>I have a constant dull pain on my right side and pain seems to be
>>>>>radiating to my left side as well as my back and legs. I am still
>>>>>scheduled to get my third and final shot of Lupron next Wednesday. I am
>>>>>now on add back therapy and it seems to be helping a little with my side
>>>>>effects of the Lupron, however, I still have my symptoms of my Endo,
>>>>>atleast that is what my doctor has decided is the problem. I still have
>>>>>symptoms of the side effects of the Lupron, however it is not as
>>>>>envasive. It is just frusterating to be on something (Lupron) for my
>>>>>symptoms of Endo, and still have symptoms of Endo and on top of it, have
>>>>>side effects of Endo and side effects of Lupron. Seems kind of silly to
>>>>>me...all of it. Has anyone dealt with this and have it not stop even
>>>>>after the last shot? And if so, what is next? My doctor won't tell me. I
>>>>>need to be aware of all of the possabilities. And if my third shot does
>>>>>help me and then after what ever given time passes, and my Endo symptoms
>>>>>come back.....what then?
>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
>Info on pain management:
>http://www.painfoundation.org/
>
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