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Re: Probable endo, looking for advice
From: Ally (anonymous@obgyn.net)
Tue Jul 29 09:41:05 2008
It is a long time, but he carefully excised everything he could. He
told me it was the "worst case he had seen in years". Not a very
encouraging thing to hear, especially from a specialist who sees the
worst of the worst. The surgery was in December. I was never put on
anything after either surgery. We are trying to conceive, so no
estrogen regulation for me.
At Tue, 29 Jul 2008, Cin wrote:
>
>Wow, 8 hours is a long time! He estimated one hour for me, and that is
>if he does the neurectomy and a uterus suspension (not so sure if i
>would want this one though). How long ago did you have your (second)
>surgery? Are you taking the pill or anything else to regulate your
>estrogen at the moment to prevent it from returning?
>
>At Mon, 28 Jul 2008, Ally wrote:
>>
>>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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