Re: advise on a second Laparoscopy
From: anonymous@obgyn.net
Wed Nov 29 12:40:38 2006
Hi Tara:
In responding to your post yesterday, I had initially written you a long
response telling you my story, but decided not to post it because it was
so long lol.
Re the fibroids/adenomysis -- I don't even know if that was the cause of
my fleeting discomfort last night -- actually, it could just be from
sitting too long in addition to the fact that I'm on my period --
really, its nothing. Plus I also have interstitial cystitis and ate
something I shouldn't have lol -- with IC, anything citric/acidic/etc
flares the pain. That is what I mean, if you go to an endo specialist,
especially Dr. Reich (have you read his C.V. yet? He travels the world
teaching others how to perform endo lap surgery.), you will have given
yourself the best chance to rid yourself of endo -- all of these years I
have been free of that burning endo pain. On occasion, I may experience
a twinge of pain at the ovary, uterus, low back, whatever, but these
moments are so seldom and fleeting, and mild -- just normal life
annoyance type pain -- just nothing, really -- don't even need an
ibuprofen.
Of course, if I do again end up in chronic severe pain, I'll pursue
medical treatment -- but, knock on wood, I'm fine.
You ask if I was in the same position re pregnancy -- unfortunately, I
didn't have "Mr. Right" in my life, so I've never had children -- my
greatest regret. Tara, I've known of soooo many "Happy Endings" on this
forum -- many have been in your position, had surgery, and conceived --
MANY! I'm assuming your husband has already been checked out to confirm
there is no problem on his end. Does your current gyn think that endo
is the reason you haven't yet conceived? Tara, if endo is your problem,
Dr. Reich is as good as it gets -- he is "the best" -- there is no one
better. There are no guarantees in life, but when you go to the best,
you won't have to second guess or kick yourself.
At Wed, 29 Nov 2006, Tara wrote:
>
>It's great news that you have done well all these years. Sorry to hear
>about the Fibroids and adenomyosis...Hopefully you can get that taken
>care of. When you were experiencing the endo pain were you in the same
>position as me? as far as trying to get pregnant and not being able...
>Guess Im just wondering how many "Happy endings" there are out there...
>Wondering what my chances may be after all of this...
>
>At Tue, 28 Nov 2006, anonymous@obgyn.net wrote:
>>
>>Hi Tara:
>>Knock on wood, I've done well all these years. Low back is starting to
>>ache though -- have been dx'd with fibroids and adenomyosis via sonogram
>>-- am guessing that is the cause.
>>
>>At Tue, 28 Nov 2006, Tara wrote:
>>>
>>>Well it's always nice to hear when people speak so highly of a doctor.
>>>Kind of helps you know what you are getting into , opposed to never
>>>hearing anything about a doctor. I cannot wait to hear back from him
>>>now. I don't even mind the drive to PA if he no longer works out of
>>>Manhattan... but that would be a definite plus! :-) How Ironic that you
>>>happen to sign in, read my little blog and know the doctor I was asking
>>>about!!! Life is crazy like that sometimes. So how is your Endo these
>>>days? It sounds like you have it under control.
>>>
>>>At Mon, 27 Nov 2006, anonymous@obgyn.net wrote:
>>>>
>>>>Hi Tara:
>>>>I'm actually surprised that the current group here at the endo forum
>>>>doesn't know of him -- he is the master of endo excision surgery. I
>>>>just happened to pop in to the forum for the first time in several years
>>>>-- every now and then I feel a need to pop in and give back since this
>>>>forum helped me so much (guidance, advice, friendship, support) when I
>>>>was going through my own endo "hell".
>>>>You live in NY! Several years ago he operated in both NY city and
>>>>Scranton, PA -- he may still operate in Manhattan, I don't know.
>>>>Yes and yes. I've met him and used him. He is just such a nice down to
>>>>earth guy (ALL the expertise without the arrogance -- just a super nice
>>>>guy -- I'm not kidding though, he really is the master!). You'll see
>>>>what I mean when you talk to him.
>>>>
>>>>At Mon, 27 Nov 2006, Tara wrote:
>>>>>
>>>>>Hey thanks so much for the confirmation, i came accross that page and
>>>>>send him an e-mail earlier today. It's great to hear that someone has
>>>>>heard of him. How is it that you did? I live in NY but PA is definitely
>>>>>a "do-able" trip to getting this taken care of :-)Have you met him? used
>>>>>him???
>>>>>
>>>>>At Mon, 27 Nov 2006, anonymous@obgyn.net wrote:
>>>>>>
>>>>>>Dear Tara:
>>>>>>Hi. I've been reading your forum posts and just noticed that you
>>>>>>mentioned you live near PA -- you mentioned Dr. Reich. If endo is your
>>>>>>problem, smile Tara! Tara, Dr. Reich is world renowned -- he truly is
>>>>>>the "BEST" -- read his resume; search his name here on the endo forum;
>>>>>>google his name; read about him at http://www.adlap.com/reich.html (
>>>>>>http://www.adlap.com ) or http://www.womenssurgerygroup.com and to top it off, he is
>>>>>>the nicest guy. You literally could not be in better hands -- he is
>>>>>>"the Master"! Just read about him and you'll see.
>>>>>>He even provides his email address if you want to email him! Read this
>>>>>>page (his email is listed on this page) http://www.adlap.com/reich.html
>>>>>>
>>>>>>At Mon, 27 Nov 2006, anonymous@obgyn.net wrote:
>>>>>>>
>>>>>>>Tara, definitely something you need to discuss in detail with the
>>>>>>>specialist. If I were you, I would start journalling your symptoms and
>>>>>>>include types of pain/discomfort, where you are in relation to the
>>>>>>>cycle. One of the unfortunate realities of any surgery, be it
>>>>>>>laparoscopy or laparotomy is the formation of adhesions--like in my
>>>>>>>case. This is the body's natural way of healing and for many people
>>>>>>>that don't cause an issue. For others, it can be a real problem. In my
>>>>>>>case, endo was found in some adhesion tissues. Some of what you're
>>>>>>>experiencing could be attributed to adhesions, or it could more
>>>>>>>endometriosis has flared in those areas. This is your health, your
>>>>>>>life. I have felt so fortunate not to suffer as badly as some women
>>>>>>>with this disease. I hope that the courses I have taken are going to
>>>>>>>make it better, or at least not make it any worse. Endo can affect both
>>>>>>>the bladder and the bowel and this is why it's so important to find an
>>>>>>>absolute expert. You need someone who has a great deal of experience in
>>>>>>>diagnosing and excising. Have a look at the CEC website I mentioned
>>>>>>>previously. If I were back in the U.S., I would do whatever it took to
>>>>>>>see either them or Redwine. There are never any guarantees, but you can
>>>>>>>give yourself the best possible shot at managing/defeating this disease.
>>>>>>>Feel free to email me privately if you want to chat. Take care.
>>>>>>>
>>>>>>>At Mon, 27 Nov 2006, Tara wrote:
>>>>>>>>
>>>>>>>>That was another question that I meant to ask... My doctor said that
>>>>>>>>when she did the lap she did not notice anything that seemd out of the
>>>>>>>>ordinary as far as endo to bowels or anything like that "sticking"
>>>>>>>>together. But recently I have been having horrible bladder spasms,,
>>>>>>>>constant feeling for the need to urinate... as well as about 80 % of
>>>>>>>>the month terrible bowel movements. I also feel sometimes as if
>>>>>>>>something is being torn (ovary area) if I move to quickly... like there
>>>>>>>>is a string from each of my ovaries to my belly button and it's being
>>>>>>>>stretched, sometimes a feeling as though it's snapped. Do you know what
>>>>>>>>the possibility is that I could have Endo in/ on my bladder / bowels?
>>>>>>>>
>>>>>>>>At Mon, 27 Nov 2006, anonymous@obgyn.net wrote:
>>>>>>>>>
>>>>>>>>>Well, recurrence is always a possibility. Don't know if some was missed
>>>>>>>>>last time or it just came back. At the 2nd lap, 2 weeks ago they
>>>>>>>>>removed an ovarian cyst that had reformed (as big as the one removed a
>>>>>>>>>year ago) as well as anything that looked like possible endo. My left
>>>>>>>>>ovary was adhered to the bowel with a bit of endo (something that
>>>>>>>>>happened post-first lap). They cut away part of the ovary to free the
>>>>>>>>>bowel, but left it attached as the surgeon was concerned the endo
>>>>>>>>>adhering it could have penetrated the bowel. We're crossing fingers
>>>>>>>>>that it just remains there and becomes part of the scar tissue without
>>>>>>>>>causing future problems. The tissue that took out was a mixture of endo
>>>>>>>>>and scar tissue. He thinks he's pretty hot at what he does ;-) so I'm
>>>>>>>>>hoping chance of recurrence is less this time. Only time will tell with
>>>>>>>>>this disease.
>>>>>>>>>
>>>>>>>>>At Mon, 27 Nov 2006, Tara wrote:
>>>>>>>>>>
>>>>>>>>>>Thanks! Actually I was just searching and Dr Redwine's name did come up
>>>>>>>>>>quite a few times, as well as a doctor by the name of Reich, who is
>>>>>>>>>>right near me in PA. I want to do more research but apparently he also
>>>>>>>>>>does Excisions...
>>>>>>>>>>
>>>>>>>>>>Im sorry to hear you had a recurrence. Do they know why? What will you
>>>>>>>>>>do now?
>>>>>>>>>>
>>>>>>>>>>At Mon, 27 Nov 2006, anonymous@obgyn.net wrote:
>>>>>>>>>>>
>>>>>>>>>>>Tara, you may want to check out the previous posts regarding the Centre
>>>>>>>>>>>for Endo Care in Atlanta (Dr Albee and Dr Sinervo), as well as those
>>>>>>>>>>>about Dr. Redwine in Bend, Oregon. I'm an American living in Australia
>>>>>>>>>>>and have just gone through my 2nd lap for excision. My first surgeon
>>>>>>>>>>>did the lap to diagnois and excise at the same time. Unfortunately I
>>>>>>>>>>>have had a recurrence (within the year). The new surgeon (only because
>>>>>>>>>>>I moved States) even commented on Dr. Redwine as the foremost expert in
>>>>>>>>>>>the field that boasts (and rightly so) a low recurrence rate within five
>>>>>>>>>>>years. Do a search on his name and you'll see various references to
>>>>>>>>>>>check out. It's unfortunate that you're having problems again, but not
>>>>>>>>>>>surprising since you said your first dr. only removed a small amount.
>>>>>>>>>>>Any amount left in is bound to cause problems again. Sounds like you're
>>>>>>>>>>>on the right track though and definitely search out the best. The two
>>>>>>>>>>>places mentioned above are also very much about trying to conserve
>>>>>>>>>>>fertility.
>>>>>>>>>>>Good luck to you!
>>>>>>>>>>>
>>>>>>>>>>>At Mon, 27 Nov 2006, Tara wrote:
>>>>>>>>>>>>
>>>>>>>>>>>>I definitely feel that it's time to start reconsidering having a second
>>>>>>>>>>>>lap, I guess I'm just a little apprehensive. I really want to make sure
>>>>>>>>>>>>that it's a doctor who is highly recommended..no matter how far I have
>>>>>>>>>>>>to travel... We've been trying to get pregnant for almost a year and a
>>>>>>>>>>>>half now with not even the slightest bit of hope. I'm just really
>>>>>>>>>>>>getting to the point where I find myself unable to control the tears
>>>>>>>>>>>>when people ask or talk about children. After getting married everyone
>>>>>>>>>>>>starts in with the "when are you going to have children" and a lot of
>>>>>>>>>>>>people especially at work dont know what I am going through so I cannot
>>>>>>>>>>>>expect then to understand the sadness and pain I am going through...
>>>>>>>>>>>>anyways I guess its time to seriously look into this huh?
>>>>>>>>>>>>
>>>>>>>>>>>>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.
>>>>>>>>>
>>>>>>>>>--
>>>>>>>>>Bula
>>>>>>>>>
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