Re: Please help me - I can't take it anymore!!!!!!!!!!!!!
From: summer (anonymous@obgyn.net)
Fri Jun 27 23:59:55 2008
What does Dr Orbuch say about the hyst? She helped someone once by
diagnosing IC, and giving her a med for that (along with excision
surgery)
yes, laser surgery does not get all the endo...did you have any relief?
Dr Kanayama is expensive, but insurance reimburses a lot...but I have
heard some stories where women had to have follow-up surgery, what's the
point?
Have you checked in on the NJ/ NY Endo Research Center board? They have
info on Orbuch...
YES, if you are having a lot of pain, ASK if you can in any way move the
surgery up. It can't hurt to ask.
What does she think your main problems are? Do you have any cysts or
fibroids?
At Fri, 27 Jun 2008, anonymous wrote:
>
>It seems like most of you on here are recommending the excision
>specialist, not the regular doctor. The doc who did the surgery last
>year was not an excision specialist, however, he was a RE and a very
>good surgeon [I got lucky]. He used a laser though, and I don't think
>he got anywhere near the amount of disease that he needed to. He seemed
>to think he wasn't equipped to help me - and suggested that I contact
>Dr. Kanayama or other excision doctors that specialize in endo. I
>found Dr. Orbuch - she takes my insurance - Thank God!. It is soooo
>expensive otherwise - I don't know how people can afford it. I am sure
>I will be stuck with bills too - but I am hopeful that most of them will
>be covered.
>
>Thanks so much for listening. I really just wanted to get the
>hysterectomy done and be finished with it, but it seems like you and
>others are saying that this is not the case, and the endo may persist. I
>would be terribly upset if that was true. I am going to go with Dr
>Orbuch - the only problem is I have to wait soooo long to get it done.
>Perhaps I can beg and plead that she do it sooner. I really can't take
>this much longer. Thanks again for listening.
>
>At Fri, 27 Jun 2008, anonymous@obgyn.net wrote:
>>
>>Sorry you are in so much pain. There shouldn't be any need for two
>>surgeries. The doctor who does your excision surgery is probably very
>>well qualified to do the hysterectomy at the same time if you really
>>need one. Hysterectomy won't relieve endo pain--especially when you
>>have the implants all over the place. I read somewhere that endo is the
>>only disease in the world in which it is considered acceptable to remove
>>an unaffected organ and leave the disease in place. Your endo didn't
>>come back, it was never completely removed in the first place. Your
>>pain sounds very typical for endo pain--if I were to describe my pain it
>>would sound very similar to yours. Hope you get relief soon--the endo
>>specialists have excellent records for success and try to leave organs
>>intact whenever they can. I'm scheduled for my excision in three weeks.
>>Good luck!
>>
>>At Fri, 27 Jun 2008, anonymous wrote:
>>>
>>>I had a lap last year in June - and the doc did a partial hysterectomy.
>>>Removed right tube and part of right ovary [he couldn't get it all
>>>because it was stuck to my bowel]. I had 6 chocolate cysts removed too.
>>>I also have had part of my left ovary removed due to a chocolate cyst
>>>that ruptured.
>>>
>>>Since my last surgery, I have been having awful pains in my lower
>>>back/tailbone area and my mid section - it feels like I am being cut in
>>>half. I also have terrible gas pain - like you wouldn't beleive. Is
>>>this normal? My doc seems to think I need a hysterectomy and I am sooooo
>>>ready for it. I have tried every hormone therapy in the book, and
>>>nothing seems to help. I was told I have stage IV endo - and it is
>>>literally everywhere :(
>>>
>>>It has gotten so bad, it hurts all the time and I cant bend over.
>>>
>>>Lately, I have lost my hope of ever feeling well again. I am setting up
>>>a hysterectomy as soon as I can, but I was scheduled for excision with
>>>Dr. Orbuch after I have a colonoscopy. Any advice? I don't think I can
>>>go through two more surgeries - thus my desire for a hysterectomy. What
>>>if the excision doesn't work? I am shot and worn out, and I haven't been
>>>living for quite some time now due to the endo. It is winning.
>>>
>>>Thanks for listening.
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)