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Re: Update to D
From: Amanda (anonymous@obgyn.net)
Fri Jun 22 13:11:13 2007
Thanks for the info D, I have another consut with my doctor next month.
The plan is to remove all of the endo they can find and do a
hysterectomy. I know that there is a lot of opinions about this, but to
each her own. Thanks a lot for the info.
At Thu, 21 Jun 2007, D wrote:
>
>The hysterectomy stuff was more directed at Amanda, I should have made
>that more clear - I didn't mean to imply that I thought you did want
>one!
>
>I think that you are likely facing more surgery - if it is endo that
>wasn't removed at your first surgery, then another surgery is the only
>way to get rid of it. I wish I could tell you that there will be a
>break other than having it surgically removed, but there may not be.
>Lupron doesn't always work, birth control pills don't always work,
>menopause doesn't always stop it. The doctors who get the best results
>are the endo specialists who remove the disease by excising it - they
>cut it out. There aren't many doctors who are skilled at this surgery,
>and that makes things very difficult for those of us who suffer with it!
>
>I stopped my periods for two years with birth control pills and still
>have pain everyday! I agree, I'd love to have a break! But my best
>relief has come from getting into pain management. I went through about
>8 HMO obgyns and REs until I made the decision to go to a specialist -
>none of them could excise the disease, all of them wanted me on Lupron.
>It was a big decision because my HMO wouldn't let me out of network, so
>I worked with my pain doctor and waited. I was fortunate that I was
>able to select a PPO during the "open enrollment" that will let me go
>out of network, and I'll be having surgery next month after that
>insurance kicks in - I've waited a year for this.
>
>If you can't get to an endo specialist, I suggest sending your records
>to one for a review. A record review can help put your mind at ease,
>and it can help your local doctors figure out what to do next. The one
>doctor I'm sure does record reviews for free right now is Dr. Mosbruker,
>who works with Dr. Redwine, one of the top endo docs in the country.
>Here's a link to her blog:
>http://endometriosissurgeon.blogspot.com/
>
>Finding the best doctor possible is the surest way I know to get proper
>treatment - and a break! For many women, that means traveling. I wish
>there were more doctors out there that really understand endo, but there
>just aren't. The endodocs group, linked at the bottom of this, is a
>good place to look for an endo specialist, and I hope you'll take a look
>at the ERC support group and the pain site links, too!
>
>I hope this helps, I really do wish there was something more I could
>tell you, but in my experience going to an endo specialist is the best
>thing you can do for yourself.
>
>At Thu, 21 Jun 2007, mdustin wrote:
>>
>>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/
>>>
>--
>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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