Re: advise on a second Laparoscopy
From: anonymous (anonymous@obgyn.net)
Mon Nov 27 12:17:33 2006
I can only tell you that everything I've read points to the huge
difference in results between the excision specialists, and everyone
else.
You can try Lupron, it may screw you up forever, and it doesn't even
work in 50% of women! You can play along with your insurance, and go
through lap after lap have your endo burned off again and again while
the adhesions build up. Or you can try to see an endo specialist. No,
they aren't cheap, but is having a lap every year or two any cheaper in
the long run? Not to mention, how much of your life are you missing out
on, and how do you put a price tag on this?
I'm sorry, but I get tired of all the women and the complete hell their
doctors put them through - needlessly! Mostly, it seems, because
insurance doesn't want to pay for real care, or because their doctors
are plain ignorant.
Only you can decide what the best thing for you is. My best advice is
learn everything you can about this disease, until you know MORE than
your doctors! Then you will be able to make these decisions from a place
of knowledge, not from what someone like me says!
And question your doctors carefully. If you don't like what you hear,
leave. Don't waste your time if they aren't going to listen to you, to
help you and work with you.
You really can't give up, or at least I can't, because I can't figure
out how to live with the pain! As long as the pain is there, giving up
is not an option for me.
At Mon, 27 Nov 2006, Tara wrote:
>
>..just feels like there is no end to the process...at 24 years old I
>feel like I will be having surgeries for the rest of my life! How big a
>difference do you think there is between just a regular Endo specialist
>versus an excision specialist... which would you recommend someone see
>first? Do you know by chance if you tend to have more out of pocket
>expensesin regards to seeing someone as highly specialized as Dr. Liu
>verse seing someone else? I wonder sometimes if I cant bear the
>frustration of this disease more then the pain!
>
>At Mon, 27 Nov 2006, Alyson wrote:
>>
>>Tara,
>>Just saw your last post and wanted to add....
>>It can be incredibly frustrating trying to figure out the next step.
>>Most of us "multiple lappers" have since discovered that there is alot
>>to be said for the removal method. We've had either electro
>>cauterization or CO2 laser ablation. Both of those methods essentially
>>remove the surface of the implant and can leave endo tissue behind that
>>continues to grow. Also, new endo tissue can grow from microscopic
>>implants that the surgeon may not have seen. The endo specialists that
>>anonymous referred to are excision specialists. There are several in
>>the country that are widely considered to be excision experts. It is
>>their belief that by actually cutting (either with a laser or scalpel)
>>the endo implants out that there will be no regrowth of the disease.
>>They also believe that the majority of general gyn surgeons are not
>>trained to spot endo in all of its forms or at the microscopic level.
>>So, essentially they are not removing all of the disease. These doctors
>>say that with their training in finding the endo they have up to a 90%
>>success rate of patients being endo free (with no recurrence) following
>>surgery.
>>There is a doctor in NYC (Dr. Liu?) who is widely recognized as an
>>expert.
>>Go to this web site:
>>http://www.geocities.com/endovictims/endodocs.html
>>You can search by state and it does list those doctors regarded as
>>experts in this field.
>>It does get overwhealming and for some of us you do reach the "end of
>>the line". But there are some who find a way to manage this either
>>through surgery, alternative medicine, or hormone treatments.
>>Take a deep breath and don't give up just yet.
>>Alyson
>>
>>At Mon, 27 Nov 2006, Alyson wrote:
>>>
>>>Tara,
>>>The endo could absolutely be ab issue in your trying to conceive. It
>>>can create chemical imbalances, block ovaries and tubes, etc. I know it
>>>is nerve wracking to consider a second lap when you worry that nothing
>>>will be found. I had my second lap only a year following my first. My
>>>original doctor insisted doing another lap was pointless because there
>>>was no way endo could have grown back in such a short time and while I
>>>was on meds. I sought a second opinion, he did the surgery and found
>>>extensive endo- considerably more than my first doctor had found a year
>>>earlier. It is important to remember that this disease tends to be
>>>progressive. Each person progresses differently. Not everyone will
>>>have the kind of rapid progression that I did and some women here have
>>>had even more rapid progression of their disease. I talked to my doctor
>>>about trying to coceive before he did my lap (the 2nd one). He said
>>>that data shows that the best success for getting pregnant with endo is
>>>within 4-6 months follwing a laproscopy for the removal of endo. Kind
>>>of makes sense...get everything cleaned out and get busy before it has a
>>>chance to really get going again.
>>>Obviously having surgery is a personal decision. I am not trying to
>>>talk you into it, but just ease some of those "what if" concerns. Also,
>>>if you really trust this doctor, I would take her advice. Unfortunately
>>>it can be rare to find a doctor dealing with this disease who is willing
>>>to suggest that you seek someone with more knowledge of endometriosis. I
>>>meantioned in my previous post (re: Endo and pregnancy) that a
>>>reproductive endocrinologist might be helpful. That was at my docs
>>>suggestion after she said that she was at the end of her expertise in
>>>dealing with this disease.
>>>Alyson
>>>
>>>At Mon, 27 Nov 2006, Tara wrote:
>>>>
>>>>I'm just looking for some advise...
>>>>
>>>>I was diagnosed with Endo three years ago with my current Doctor through
>>>>a laparoscopy... at that time she was able to remove only a small
>>>>amount of my endo. Directly after my surgery my DR suggested Lupron for
>>>>6 months, which I did and though the pain subsided for 4 of those months
>>>>they returned almost immediately after my injections stopped. For the
>>>>past two years pain meds have done nothing to help... and my Dr is out
>>>>of suggestions. She thinks I should see a new specialist. She informed
>>>>me that the new doc will probably want to perform another Lap to make
>>>>their own diagnosis. I see many of you have had NUMEROUS laps and was
>>>>just wondering if they were only able to see and remove a tiny amount
>>>>the first time, is there any real point in going through that again?
>>>>Have any of you had better success on your second, third...etc? Or do
>>>>you have any other suggestions as to another treatment I should talk to
>>>>my Dr. about? A big factor right now is that my husband and I are
>>>>trying to get pregnant... will that be an issue?
>>>>
>>>>Thanks for any suggestions, advise you can give.
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