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Re: Probable endo, looking for advice
From: Cin (anonymous@obgyn.net)
Thu Jul 31 19:25:49 2008
Hey Sherri,
I emailed you last night. Let me know if you don't get it I will try
resending.
At Tue, 29 Jul 2008, Sherri wrote:
>
>Hi there! I'm the one the others are referring to that had a bad outcome
>with a PSN. The doctor that did my PSN was also the chief of the
>reproductive endochronology (sp?) dept. at Emory University. He's not
>there anymore and I am NOT trying to bash Emory at all! I went to him on
>a referral from my regular gyn because my endo and pain/problems from it
>were so severe. It was one of the biggest mistakes of my life!! This
>man did a laporatomy with the PSN, appendectomy, removal of endo and
>adhesions, etc. He reassured me time and time again that the pre-sacral
>neurectomy would help me immensely with the pain I was having. My pain
>was mostly on the right side of my pelvis/abdomen (still is!). He told
>me that my pain "must" be truly coming from the uterus, and that I only
>felt it on the right side, but the PSN would stop all of my "midline"
>and "referred" pain. HA!
>
>To make a very long story short, I now suffer daily in immense pain due
>to permanent nerve damage because of this surgery! This man CUT THE
>WRONG NERVE!! That is a known possible complication of a pre-sacral
>neurectomy, and in my opinion, it happens more frequently than we are
>lead to believe. Of course, any surgery that involves cutting nerves is
>very risky. I was so sick and in so much pain at the time of my psn
>that I never imagined I would actually feel worse after the surgery! My
>surgery was done in 2002, and I never felt even one day of relief! Since
>then, every doctor that I have seen can't decide if my pain now is just
>the nerve damage, progressing endo, my bladder (due to IC) or a combo of
>all 3. (That's what I think it is!) There is absoloutely NOTHING that
>anyone can do to help me with my pain and problems now, except for pain
>management doctors. Even with PM docs, I have had difficulty making
>them understand the severity of this constant pain....until they see my
>medical and surgical records from the PSN surgery at Emory. One of the
>saddest parts of this story is that I did not even know that the wrong
>nerve had been cut until about a year after that surgery. I kept
>waiting to feel better after that surgery, but relief never came. I
>actually ended up back in surgery, having my right ovary and tube
>removed 8 months after my surgery at Emory, so the endo and
>adhesions/scar tissue were not a bit better, despite the fact that this
>surgeon was "supposed" to be the head of the RE department at a
>"top-notch" hospital. Those titles can be misleading, and when we are
>as sick and in as much pain as endo can cause, we don't always make the
>best decisions for our treatment. That is mainly out of
>desperation.....at least for me it was! I was absoloutely desperate to
>have some sort of pain relief and I did as most of us do, I trusted the
>doctor to do what was best for me. He was supposed to be one of the
>"leading experts" in his field and had done thousands of these
>surgeries. The point is that it does not really matter if the
>doc/surgeon you are seeing is supposed to be a fabulous doctor when it
>comes to endo, or pre-sacral neurectomies. Accidents can happen,
>especially when surgeons start fooling around with nerves! From what I
>have learned since '02 when I had mine done, a PSN is only really
>effective if the majority of your pain is coming from the "mid-line" or
>uterus which was NOT my case, but this doc kept telling me the pain I
>had on my lower right side was "really mid-line pain" but I was only
>feeling it on my right side, and kept telling me it was only "referred
>pain". That was absoloutely untrue in my case, and has left me
>wondering just how this man decided that my pain was not really in the
>area that I felt it in! I understand that people can and do have
>referred pain, but that was NOT my situation. I have had quite a few
>surgeries due to my endo ( 1 lap, 4 laporatomies) and I can honestly say
>that the post-op pain and recovery from that major surgery at Emory was
>the worst I have ever had! It literally took me about 7 months for all
>of the post-op pain to lessen, and I have not felt "like me" since that
>time. I lost 75 lbs in those first 7 months due to being SO sick and
>having SO much pain. I could hardly eat due to the nausea and when I
>did, more often than not, I could not keep anything down. That got
>better albeit very, very slowly, but I do still suffer through a ton of
>nausea daily. I have been told by my PM doc that the nausea is mostly
>because of the severe pain I am in, but some of the meds I take just to
>be able to function everyday can also cause nausea.
>
>I'm sure that there must be women that have had success with the PSN,
>and I'm not sure what the statistics are, but I would not reccommend for
>anyone to have a PSN. If I could do it all over again, I would have had
>total excision surgery by an endo specialist, such as the CEC. It
>sounds like total excision is the best way to go. At the time of my
>PSN, I had never heard of it or of total excision surgery either. Yes,
>it is true that endo can and will come back if ALL of the disease is not
>completely removed. Burning it off does not work because the "roots" of
>the endo are left behind. It is also true that endo can and will spread
>despite "treatments" for it, surgical or otherwise. I'm surprised that
>you haven't found that info out yet. Please keep researching as much as
>you possibily can BEFORE you make any decisions. Endo is such a
>complicated disease and most gyns just don't know what the best options
>for treatment are. I think that having a lap to diagnose the endo for
>sure and so you can know how severe it is would be your best bet. Your
>symptoms DO sound like endo, though! Like you, I had never heard of
>endometriosis before I began my long journey through this hell, and at
>the time there was not half as much info out there as there is now. I
>really think that you should research and read as much about endo as you
>can, talk to as many different endo patients that you can, and be sure
>to write down any questions or concerns that you have to talk with your
>doctor about. endometriosissurgeon.com, endoresolved.com and the CEC's
>website (among others) are great places to look for endo and surgery
>info. This forum is also a good place to do research. Go through the
>archives and see what all you can find. I don't mean to scare you, but
>the idea that your doc is suggesting a PSN before he has even looked
>inside to see how bad your endo is, scares me! If he thinks that the
>cyst is causing a lot of your pain then he can remove it during your
>diagnostic lap. It sounds to me like your doc is jumping the gun a
>little by suggesting a PSN. By the way, I have also suffered with
>severe pain during intercourse, and as anon said it was because I had
>endo in the cul-de-sac. The PSN was also supposed to stop the pain
>during intercourse, but it did not!
>
>Well, this is way too long, and I'm sorry for that, but my experience
>with endo and surgeries for it, is way too long! LOL! If you would like,
>you can contact me by e-mail and I will be happy to talk with you
>further. I hope that something I've said will be helpful for you and I
>wish you the best of luck with whatever you decide to do! Best wishes!
>
>--
>Sherri :)
>
>At Mon, 28 Jul 2008, anonymous wrote:
>>
>>You have to find out how the doctor would try to remove it. Excision is
>>the best way, most often does not recur.
>>
>>You should not need to take bc pills.
>>
>>You probably have endo in the cul-de-sac - this can be removed and you
>>can be ok.
>>
>>Send your records to the CEC for a records review, free. many people
>>have been helped there. centerforendo.com
>>
>>At Mon, 28 Jul 2008, anonymous wrote:
>>>
>>>Hi Everyone,
>>>
>>>I saw a gynecologic surgeon the other day due to (intense) pain during
>>>intercourse that has been misdiagnosed. After having done ultrasound,
>>>questioning and pelvic exam he said I most likely have endometriosis. He
>>>said there is a cyst anterior to the cervix that is where I am feeling
>>>the pain. He recommended surgery to have it removed and a presacral
>>>neurectomy to block pain signals from being communicated to my brain. I
>>>also think I would have to take birth control for life to keep my
>>>estrogen levels low.
>>>
>>>Now, I knew nothing about this disease prior to yesterday, but after
>>>doing some research have found out that even with surgery it comes back.
>>>I called the docs office today and spoke with one of his nurses and she
>>>said it may or may not, but to me it seems like it always will. She
>>>also said if I dont treat it, that it could get worse/spread, which i
>>>havent seen any mention of anywhere.
>>>
>>>So, I am wondering if it is worth it to undergo this surgery, I mean, if
>>>it is going to recur anyway? I know they can't know for 100% if it
>>>really is endo without going in with a laproscope but he was pretty sure
>>>its what I have. I would be interested in hearing from anyone who has
>>>had surgery and what the outcome has been, and if you have had the
>>>presacral neurectomy, if this eliminates the pain and if it is worth it
>>>(I know it has its own side effects/complications as well)?
>>>
>>>Thanks in advance for any advice you can give, as I am not sure what to
>>>do.
>
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