Re: Could Endo be back so soon?
From: anonymous (anonymous@obgyn.net)
Tue Aug 26 11:10:40 2008
Very glad you were helped, but his way of going surgery is so bloody
(which is why the pictures are hard to look at) that it leaves women
with lots of adhesions.
Hope you don't have that problem though.
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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