Re: Presacral Neurectomy (THE CEC with Dr. Sinervo)
From: Anonymous (anonymous@obgyn.net)
Fri Sep 26 19:55:20 2008
Hey Yukky & Sherri,
How strange, I actually came on the board tonight to say the same thing!
I am having surgery in the next couple weeks with an endo specialist who
has recommended a presacral neurectomy, hysteroscopy, laparoscopy and
appendectomy. I too am very nervous about the presacral neaurectomy as
something just freaks me out about messing with nerves. Have either of
you ladies found any literature online regarding the procedure? I've
been having no luck. Also, any idea what side effects we're looking at?
My doctor told me it's possible to have some bad bleeding and possible
to lose sensation in the uterus (which could lead to no labor pain he
said.. I'm alright with that!). Have there been any studies done
regarding sexual sensation? What a terrible thing to lose.
Thank you guys and hope that your surgery is successful :-)
At Tue, 23 Sep 2008, Yukky wrote:
>
>Sherri,
>
>That is fine. I have already set up my surgery for Dr. Sinervo for the
>first week in December. However, I am still having my doubts about the
>presacral neurectomy. I think I will just have him remove all the
>adhesions & look to make sure there is no more endo & see if that helps.
>But then again, I would really hate to have to have another surgery next
>year to have the presacral neurectomy.
>
>I REALLY REALLY want to have a child & I do also worry about having all
>these surgeries & the adhesions (from the surgeries) causing problems
>too.
>
>I had gotten pregnant 2X (& miscarried) before I had both my
>endometriosis surgeries. It really worries me because I have not even
>gotten pregnant (even though I have been off birth control the whole
>time) since I have had the surgeries. It makes me wonder if it is the
>adhesions.
>
>This is such an aggravating disease.
>
>Thanks again for your support,
>Yukky
>
>At Fri, 19 Sep 2008, Sherri wrote:
>>
>>Yukky,
>>
>>Sorry! I guess I missed the part where you said that you are desperately
>>trying to get pregnant, that's whay I mentioned possibly removing the
>>uterus. Believe me, I know what it's like to try and try to conceive
>>month after month and not succeed. I hope that your surgery at the CEC
>>will make that task easier once the adhesions are removed. I've heard
>>wonderfull things about Dr. Sinervo and I also think you will be in
>>great hands there! I wish you the best of luck and I pray that this
>>surgery will be the answer for you. Good luck to you!!
>>
>>--
>>Sherri :)
>>
>>At Thu, 18 Sep 2008, Yukky wrote:
>>>
>>>At Wed, 17 Sep 2008, Sherri wrote:
>>>>
>>>>Yukky,
>>>>
>>>>Hi! I have had the pre-sacral neurectomy and I will share my experience
>>>>with you. This is not meant to scare you or deter you from having it,
>>>>this is just my story.
>>>>
>>>>I was diagnosed with stage IV endo via lap in 2000, and IC a few months
>>>>later. In 2002, I was referred to Emory University Medical Center and I
>>>>saw the chief of the Reproductive Endochronology department. He wanted
>>>>to do a laporatomy with pre-sacral neurectomy, appendectomy, and a few
>>>>other things were needed once he cut me open. I was very nervous about
>>>>the PSN since I had never heard of it before and I could not find anyone
>>>>else that had had it done, or much info on it. My pain was mainly in my
>>>>lower right abdomen/pelvis (and still is!) but this doc kept telling me
>>>>that he thought I was really having mid-line pain that was radiating to
>>>>my right side. He kept saying that the PSN would stop all of this
>>>>mid-line pain and cramping and he really talked it up. Being so sick
>>>>and in so much pain, I finally agreed to surgery with him. I had the
>>>>surgery in March 2002, and to make a very long story short; HE CUT THE
>>>>WRONG NERVE!! I now have permanent ilio-inguinal nerve damage in my
>>>>pelvis/abdomen. Needless to say, I never got a bit of pain relief and
>>>>in fact my pain became much more severe. I now suffer with severe pain
>>>>daily and I am under the care of a pain management doctor. I can not
>>>>get through a day without heavy-duty painkillers. There is no fix for
>>>>the pain I have now as the nerves are irrepairable. It took me over 7
>>>>months to recover from that surgery, and I lost 75 lbs. due to the
>>>>severe pain and nausea I was in. That surgery was unsuccessful in
>>>>treating my endo also because 9 months later I had to have my right
>>>>ovary, adhesions and even more endo growths removed.
>>>>
>>>>Since the doc thinks your pain is from the Adenomyosis, why not have the
>>>>uterus removed? That is the only way to get rid of pain from Adenomyosis
>>>>as far as I know. Please understand that I am not promoting
>>>>hysterectomy at all, I am just under the impression that adeno can only
>>>>be treated by removing the uterus. There are, of course, other possible
>>>>complications of a pre-sacral neurectomy, mainly the loss of sensation
>>>>and/or feeling of the mid-line area and I think that can apply to loss
>>>>of sexual sensations as well. I am not positive about that though. I
>>>>also have a ton of adhesions and I do have pain from that also, so I
>>>>understand what you are feeling. As for your IC, what meds have you
>>>>been on for that and have any of them helped? I'm glad that you are
>>>>going to get a cystoscopy soon, and hopefully that will convince the
>>>>other doctors who are not trusting Sinervo's diagnosis of IC. That's
>>>>crazy!! Sadly, there are so many doctors that just don't understand IC
>>>>at all...or endo for that mattter.
>>>>
>>>>If you have more questions about the PSN or want to hear any more
>>>>details of my experience, feel free to e-mail me privately and I will
>>>>help in any way that I can. I am sorry that you are having so much pain
>>>>and problems again! I wish you the best of luck in whatever you decide
>>>>to do!
>>>>
>>>>--
>>>>Sherri :)
>>>>
>>>>At Mon, 15 Sep 2008, Yukky wrote:
>>>>>
>>>>>Hello everyone,
>>>>>
>>>>>I have not been on this forum in quite some time. Of course that does
>>>>>not mean I have not been feeling bad or in pain. My previous name was
>>>>>Pamela.
>>>>>
>>>>>I had laser surgery in 04/06 & then I went to the CEC & had laser
>>>>>excision surgery with Dr. Sinervo. Well, I am having really bad
>>>>>problems again. Now, Dr. Sinervo wants to go back in & try to take
>>>>>care of the adhesions (he thinks that is causing alot of my problems) &
>>>>>then do a presacral neurectomy to help with the pelvic pain (it is
>>>>>really bad). He said I am having all this pain for the ADENOMYOSIS.
>>>>>
>>>>>I also have INTERSTITIAL CYSTITIS which I was diagnosed with at the CEC.
>>>>>None of my doctors where I live would take the doctor's word for it &
>>>>>they have not diagnosed me yet (you know how those hot headed doctors
>>>>>are). After 2 years (& being on many different medicines to help with
>>>>>my bladder pain) I am finally having a cystoscopy at the end of the
>>>>>month.
>>>>>
>>>>>I have also been diagnosed with FIBROMYALGIA by 3 different
>>>>>Rheumatologists.
>>>>>
>>>>>I have had several tests by the Gastroenterologist & he just finally
>>>>>said I have IBS (I really do not think I have IBS).
>>>>>
>>>>>Just been on a really roller coaster of a ride.
>>>>>
>>>>>JUST WONDERING IF ANYONE KNOWS ANYTHING ABOUT PRESACRAL NEURECTOMY. ARE
>>>>>THERE ANY COMPLICATIONS? ARE THERE BAD SIDE EFFECTS? IF ANY ONE OF YOU
>>>>>HAS HAD IT DONE DID IT HELP YOUR PAIN. LET ME KNOW.
>>>>>
>>>>>Thanks,
>>>>>Yukky
>>>>
>>>--
>>>Sherri,
>>>
>>>Thanks alot for that information. I am still a little leary on having the presacral neurectomy even though
>>>Dr. Sinervo is doing it.
>>>
>>>Unfortunately, I cannot have my uterus or ovaries removed because I am desperately trying to get pregnant.
>>>My husband & I have been trying now for 5 years. I did get pregnant 2 times but miscarried (Very depressing!!!).
>>>
>>>I haven't gotten pregnant again since I had both my Endometriosis surgeries in 2006. I am guessing it could be because of adhesions.
>>>
>>>I was just thinking the other day how I would really love to have a complete hysterectomy but I cannot (even)
>>>so I am not sure that it would help (because I am thinking that I might have endometriosis on my bowel & bladder
>>>again.
>>>
>>>I want a baby so bad that it hurts. Its really heartbreaking & I will be turning 35 years old in just a few days
>>>(I have no children of my own).
>>>
>>>Anyway, enough about that. I have already set up the surgery (still not sure if I want to have the presacral
>>>neurectomy (I am just worried that I will have it done & my pain will not disappear). I do think however I am
>>>having problems with adhesions & I do feel that I need Dr. Sinervo to take care of them. Maybe getting rid of them
>>>might help my fertility issues.
>>>
>>>I am so sorry about what happened to you!!! :+( That is really horrible. The worst thing in the world is being in pain.
>>>Especially when alot of the times it does not show on the outside & no one believes you are really in pain
>>>(that is my problem most of the time). I have been in so much pain lately that I am almost on the verge of
>>>vomiting every day & all throughout the day. It is horrible. I was taking pain medicine (when the pain was just
>>>completely unbearable but it made me even sicker.
>>>
>>>Try to take care of yourself & Hugs.
>>>
>>>Thanks,
>>>Yukky
>>>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)