Re: Update to D
From: D (anonymous@obgyn.net)
Thu Jun 21 15:06:53 2007
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/
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)