ENDO Messages for July, 2008: Re: Probable endo, looking for advice

Re: Probable endo, looking for advice

From: Sherri (anonymous@obgyn.net)
Tue Jul 29 10:27:38 2008

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Reply: Cin: "Re: Probable endo, looking for advice"

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.

Next message: Vicky: "Re: When should I try getting pregnant?(Thanks Ally and Maura)"
Previous message: Nicole: "Excision Specialist who is covered by insurance. Please read"
In reply to: anonymous: "Re: Probable endo, looking for advice"
Next in thread: Cin: "Re: Probable endo, looking for advice"
Reply: Cin: "Re: Probable endo, looking for advice"

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