Re: Probable endo, looking for advice
From: Ally (anonymous@obgyn.net)
Mon Jul 28 21:50:23 2008
I hope that your insurance can cover the procedure for you! I know all
of this can be stressful. The less you have to pay out of pocket
certainly makes things easier.
The only things I've heard about pre-sacral neurectomy were on this
forum. I think some people have had problems with the wrong nerve being
cut and then they end up with permanent problems. Someone can correct
me if I am wrong. I think you can do a search through OB/GYNnet to see
if you can find any old postings about it.
It sounds like you are really good with your diet. You're doing a lot
better than I am in that area! I started with little things like eating
more organic foods and using organic tampons.
To answer your question, I have had two surgeries. The first was by a
gyn surgeon who was supposed to be this lap pro. Unfortunately, he
didn't do much for me except drain my cysts, cut down some adhesions,
and diagnose my endo. My cysts returned less than 7 weeks later! I then
had complete excision surgery just three months later. It was a very
extensive surgery (8 hours!), which included a bowel resection. I have
experienced remarkable relief since this surgery. However, whether or
not the endo is coming back is still in question. I seem to be prone to
cysts and it's hard for them to tell on u/s if the cysts are functional
or endometriosis related.
Anyways, I wish you luck in whatever you decide!
--
Ally
At Mon, 28 Jul 2008, Cin wrote:
>
>Thanks for your reply. The doc I saw is the head of a reproductive
>center and a gyne. surgeon. He's supposed to be the best so I am not
>worried about him properly removing it I guess. Most of the surgeries
>he does are endo. related. I was under the impression that sooner or
>later endo. does come back if you don't do anything to prevent it after
>surgery, so I hope there's a chance it wouldn't.
>
>I am 30 years old, I don't necessarily plan on having children, I am
>more concerned about the pain during intercourse and possible spread or
>worsening of the condition. I am okay with having surgery if it will
>solve it. I am still waiting to hear if insurance will cover it though,
>but i will still have to pay a couple thousand to meet my deductible
>even if it does (which i can manage, thank god i saved some money).
>
>I am trying to cut down the gluten and soy in my diet as well. i am
>already vegan so the meat/dairy/eggs are gone, and don't drink much
>alcohol or take in caffeine so diet wise i'm getting really restricted,
>don't know if i'll be able to do it but i'm gonna give it a shot.
>
>Anyhow, I am curious to know what the bad things are that you've heard
>about pre-sacral neurectomy? And just out of curiosity what treatments
>have you had, and what has worked for you?
>
>Thanks.
>
>At Mon, 28 Jul 2008, Ally wrote:
>>
>>Oh dear, I'm so sorry for what you're going through. In my opinion, you
>>do want to have endo removed, but by a specialist only. Cysts can
>>rupture and spread endo into your pelvic cavity. You didn't give your
>>age, but are you interested in preserving your fertility? Proper removal
>>of endo can help with that. I don't know much about the presacral
>>neurectomy, but I have heard bad things about it.
>>
>>If you have excision of your endo done by a specialist, there is a
>>chance that it won't come back and that you will not need to be on birth
>>control. I know that surgery sucks and that no one wants it. But, if
>>done properly, it can give you relief and a clear-cut diagnosis. I
>>would seek a 2nd opinion if you can. If you give us your location,
>>perhaps we can help you find a specialist in your area. Endo
>>specialists are few and far between.
>>
>>Good luck!
>>
>>--
>>Ally
>>
>>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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