Re: Could Endo be back so soon?
From: anonymous (anonymous@obgyn.net)
Tue Aug 26 11:08:22 2008
I went to Dr Kanayama, and while I believe some things are true, and am
very glad you were helped, I cannot recommend him.
He charges way too much money, and left me with way too many adhesions.
He did not remove all the endo, and I had to have surgery again.
I would not recommend Dr Kanayama.
At Tue, 26 Aug 2008, s wrote:
>
>Hi,
>
>I just saw this message string and really feel for you. I can relate to
>your situation in many ways. After years of pain and the 3 months of
>severe pain, 2 gynos who completely misdiagnosed me, one finally agreed
>to do a follow up ultrasound. This was only after I basically sobbed in
>her office and showed her a CT scan I had 8 months prior ( during an
>emergency room visit due to pain) that suggested I had a small fibroid
>and cyst. She immediately said that the fibroid was too small to cause
>any pain and that in her opinion there was not enough evidence of
>endometriosis to warrant a lap. The ultrasound proved differently and
>showed a large chocolate cyst on my right ovary.
>
>She then suggested either going on birth control pills (which I'be been
>on before with bad results) or a drug called Lupron. After I made it
>clear I would not be taking lupron she reluctantly suggested surgery and
>put me in touch with a surgeon who discussed removing my ovary and tube
>on the right side.
>
>At that point I had, had about enough. I researched everything I could
>find on endometriosis, it's how I found these boards actually. In my
>mad internet research frenzy I found Dr Kanayama and endo specialist in
>NYC. (I live in Brooklyn.) I was nervous, I really didn't know what to
>expect anymore. You see his website and it almost seems too good to be
>true so being the New Yorker I am I had major doubts and anxiety on
>whether I was doing the right thing going to him. Surgery is always
>scary, major or minor and if I needed to have it I wanted a seconded
>opinion and I wanted that opinion to be a specialist. At this point I
>had left my old gyno and was taking what seemed like a steady stream of
>vicodin to be able to function during the day. So I guess I also felt
>like I had nothing to lose.
>
>It was the best decision I have ever made. Both himself and his staff
>were kind, and actually listened to me carefully. My first appt I
>received another ultrasound and he was able to point out most of the
>areas of endometriosis to me on the screen and he encouraged me to ask
>as many questions as I wanted. As someone who wants children in her
>future it was important I saw someone who respected that hope and worked
>to save whatever he could and give me the best possible chance.
>
>I am exactly 1 week out from my surgery and aside from some residual
>swelling and tenderness I'm feeling amazing. I had my first follow up
>today with him, and he went over the whole surgery with me and showed me
>pictures. ( Not for the faint of heart.) Most surprising was that I had
>what they call a pendulous fibroid. In my case it was actually 3 fist
>sized fibroids hanging from my uterus, twisted together. But even
>stranger was that the insides of those fibroids were filled with
>chocolate cysts, very rare and extremely painful. In addition to the
>fibroids was a large chocolate cyst on my right ovary along with
>endometriosis in other areas in my uterine cavity. Dr Kanayama actually
>excised all of the endo and the fibroids.
>
>Of course there's no guarantee that it won't come back, but the
>likelihood seems to decrease quite a bit when it is cut out rather then
>lasered. I was lucky my tubes were clear and even my right ovary was
>saved. Most importantly I feel optimistic. My energy is back. The
>pain is gone ( even the body aches and lower backpain is gone. Which I
>was not prepared for at all)
>
>I would love to just say, go to this doctor but you need to do what's
>right for you. What I will say is that anyone going through this really
>owes it to themselves to see a specialist in this disease. You want
>someone who lives and breaths endometriosis. For me that was Dr,
>Kanayama for you it might be someone else. But I can not stress enough
>to be persistent and you own biggest advocate. Research as much as you
>can, demand tests you feel you need, don't be talked into anything that
>doesn't feel right and lastly find the right specialist. It's so
>important. You owe it to your health and your personal happiness.
>Nobody deserves to suffer from this, it's truly awful.
>
>I am keeping my fingers crossed for you and every woman out there who
>feels helpless, frustrated, scared and in pain. I am also keeping my
>fingers crossed for me too. So far after years of pain and watching my
>life get smaller and smaller as my pain increased, I finally can say,
>right now, I feel so good. And when you feel this way you want so much
>to somehow help someone else who's having a hard time.
>
>So much luck to you. Stay strong:)
>
>S
>
>At Mon, 25 Aug 2008, anonymous wrote:
>>
>>Ack! That's why it's so important to have surgery with the right
>>doctors...who wants to go through surgeries multiple times, and have
>>MORE pain? and more problems?
>>
>>Good luck!
>>
>>At Mon, 25 Aug 2008, ampyali wrote:
>>>
>>>My endo pain came back exactly 3 weeks after my laparoscopy last
>>>December with a non-endo-specialist ob-gyn. She only just cauterized
>>>the visible endo. After that, I learned all I could about the disease
>>>and had excision surgery with an endo specialist 6 weeks ago. He
>>>actually said that what she did probably increased my endo pain.
>>>
>>>At Mon, 25 Aug 2008, anonymous wrote:
>>>>
>>>>Lupron scared me!
>>>>
>>>>Yes, you want someone who only does endo, and who does excision (in my
>>>>opinion).
>>>>
>>>>Doctors will say they're endo experts, but that's because - no one stops
>>>>them! lol
>>>>
>>>>If they're only doing endo removal, then there's more of a chance that
>>>>they have learned what they need to know.
>>>>
>>>>http://erc.activeboard.com/
>>>>
>>>>endo101.com
>>>>
>>>>johnleemd.com
>>>>
>>>>Emerita has a paraben-free cream...we have it here in the health stores
>>>>over the counter in the US
>>>>
>>>>At Sun, 24 Aug 2008, Lianne wrote:
>>>>>
>>>>>This makes sense now...the Gyno's who have done both surgeries are
>>>>>ob/gyn's but say they are also "Endo experts". But my Gyno who i am
>>>>>under is an Endo expert only. He was due to do a Lap on me in Oct
>>>>>before i had this emergency surgery done by another Gyno this month. I
>>>>>may see him and ask that he still does surgery on me as he is the expert
>>>>>and the only one who's not done surgery on me. I'd like him to check
>>>>>for Endo everywhere as i don't think the other 2 got out all the Endo
>>>>>each time.
>>>>>Glad someone else feels the same way about Lupron - all the Dr's push
>>>>>for me to go on it as its the miracle drug- well they don't have to
>>>>>suffer the side effects i've read about. Even with this 'add-back'
>>>>>therapy it sounds awful stuff still. I'm going to try the progesterone
>>>>>cream in the mean time, are there any better sites for this than others
>>>>>(i live in Canada).
>>>>>Do you have the ERC website info also?.
>>>>>
>>>>>At Sat, 23 Aug 2008, anonymous wrote:
>>>>>>
>>>>>>When you say expert, is the only work they do for endo? Or are they
>>>>>>ob/gyns?
>>>>>>
>>>>>>My ob/gyn thought they were an expert - no.
>>>>>>
>>>>>>I would never take lupron, and recommend the articles posted.
>>>>>>
>>>>>>Also, do you have the ERC's activeboard site?
>>>>>>
>>>>>>At Sat, 23 Aug 2008, Lianne wrote:
>>>>>>>
>>>>>>>Thanks for all the replies. The 2 x Gyno's that have done my surgeries
>>>>>>>are Endo experts. The first cut the endo away (psoas muscle rhs and
>>>>>>>uterosacral ligament LHS)and the second just Lasered the Endo
>>>>>>>(underneath the uterus both sides). I have the pain the side i have no
>>>>>>>ovary tube but the same place as my appendix. One of my Gyno's said
>>>>>>>that on the first surgery endo was cut from my psoas muscle on this
>>>>>>>right side and maybe a nerve got caught hence why I still have pain in
>>>>>>>that area?. Though he has tested me for chronic nerve pain and says i
>>>>>>>don't have this. I have read so many negative things about the drugs
>>>>>>>you can be put on so i am really against any of the drugs - Lupron with
>>>>>>>add back therapy seems to be the one they want me to try. Even with the
>>>>>>>pill I was an emotional mess and I had to stop taking it!. I'm going to
>>>>>>>start on the herbal pills and see what this one endo expert says on
>>>>>>>Thursday, as he was the last one to operate on me.
>>>>>>>
>>>>>>>At Fri, 22 Aug 2008, anonymous wrote:
>>>>>>>>
>>>>>>>>Unfortunately the answer is yes.
>>>>>>>>
>>>>>>>>One of the reasons that a lot of people preach about seeing an endo
>>>>>>>>expert is because a) they can see endo in all it's forms (not every gyn
>>>>>>>>can) and b) they often excise the endo without use of a laser.
>>>>>>>>
>>>>>>>>Sometimes when a laser is used, it burns tissue with endo cells and
>>>>>>>>those burnt endo cells can stay behind (now they are burned into
>>>>>>>>tissue), creating even more pain later.
>>>>>>>>
>>>>>>>>It could be that your doctor may very well have missed some endo, and so
>>>>>>>>it wasn't all removed and is now acting up again.
>>>>>>>>
>>>>>>>>A CT scan, MRI scan will most likely NOT show any endo. Sometimes MRI's
>>>>>>>>will if the endo is severe enough. The only way to see if endo is there
>>>>>>>>is to go inside. Adhesions will also not show up on scans,typically.
>>>>>>>>
>>>>>>>>If you can afford an endo expert, I would try that. If however, you
>>>>>>>>cannot afford one, have you tried birth control pills? Or depoprovera?
>>>>>>>>Since you just had an operation, your doc will probably balk at opening
>>>>>>>>you up again so soon. Every time you have an operation, it does create
>>>>>>>>adhesions, which can make your pain worse. So maybe try a hormonal
>>>>>>>>therapy and see if it helps.
>>>>>>>>Try seeing a pain management specialist or asking your doc for pain meds
>>>>>>>>and/or
>>>>>>>>SSRI's (which can help with pain) and/or muscle relaxants. Sometimes
>>>>>>>>these things can help the chronic pain. Esp. muscle relaxants, which
>>>>>>>>can relax the pelvic muscles.
>>>>>>>>
>>>>>>>>You can also try natural topical progesterone, which you can buy online,
>>>>>>>>it may help (mildly) with your pain. Also you can try herbal
>>>>>>>>supplements, vitamins, minerals, and Evening Primrose Oil, which helps
>>>>>>>>some people.
>>>>>>>>
>>>>>>>>Sorry to say, I don't think the pain is you appendix. A lot of endo
>>>>>>>>patients think they have it because of the pain, but they don't. If no
>>>>>>>>abnormalities are showing up on the scan, it probably isn't the
>>>>>>>>appendix. However, endo could be on or wrapped around the appendix, and
>>>>>>>>this might be causing the pain.
>>>>>>>>Even a small implant of endo on the appendix (which would not show up on
>>>>>>>>the scan) can cause a lot of pain. If you have another surgery, I would
>>>>>>>>ask your doctor if he could remove it (despite it being healthy).
>>>>>>>>
>>>>>>>>I feel bad for you, endo is a horrible disease & it takes a lot to keep
>>>>>>>>battling it. I wish you luck and hope that your doctor is cooperative
>>>>>>>>and helps you!!!
>>>>>>>>
>>>>>>>>At Fri, 22 Aug 2008, Lianne wrote:
>>>>>>>>>
>>>>>>>>>Hello,
>>>>>>>>>I've had 2 laparoscopy surgeries, in Nov 07 - endo was found and cut
>>>>>>>>>out. Start of this Aug 08 I had such bad abdominal pain after going in
>>>>>>>>>and out of emergency and urgent care another emergency Lap was done and
>>>>>>>>>more endo was lazered from me. Thing is I’ve again been down to
>>>>>>>>>emergency yesterday as the pain came back, always now starts mid abdomen
>>>>>>>>>and goes to my lower right hand side - so I always end up having CT
>>>>>>>>>scans for appendicitis - comes back negative - I had all the symptoms of
>>>>>>>>>appendicitis though!. I'd opt to have the appendix taken out if I
>>>>>>>>>thought this would help. I cannot believe so soon endo is back
>>>>>>>>>somewhere. I have no tube or ovary on the RHS (missing since birth -
>>>>>>>>>discovered during my lap last year). Has anyone experienced this, could
>>>>>>>>>it be endo on the appendix, would a CT show this?, could it come back
>>>>>>>>>within 3 weeks of the last surgery?. I am so lost now as to what is
>>>>>>>>>going on. Even for it to have come back after 9 mths of the last
>>>>>>>>>surgery I thought was soon but to be back to the same pain after 3 weeks
>>>>>>>>>is stupid!. Could it be adhesions instead of Endo and could these not
>>>>>>>>>show on the CT scan. I am seeing my Gyno next week who did the surgery
>>>>>>>>>but any advice would be great - Help!!!!.
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