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Re: advise on a second Laparoscopy
From: Tara (anonymous@obgyn.net)
Mon Nov 27 13:14:27 2006
I had done Lupron directly after my diagnosis for the 6 months worth of
Injections... I felt a releif from the pain for about 4 months. It
wasn't a success however... about a month or two after I had to stop
the injections the pain came back and seemed even worse then before (not
sure if this was actually the case or it was just because I had been
without the pain for the time i was on Lupron)I know Im not ready to
give up- not until I have tried everything... it just seems easier
sometimes to try to block it out and forget about it for a
while...Though I know that doesnt help any. Its frustrating dealing
with Doctors and Insurance and all that stuff... I really appreciate
your suggestions and honesty. Thanks so much. Im sure all of this
information will come in very handy.
At Mon, 27 Nov 2006, anonymous wrote:
>
>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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