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Re: I am at the end of my rope with endometriosis....Now what do I do?
From: anonymous (anonymous@obgyn.net)
Tue Jul 27 15:36:22 2004
I am so happy to hear your husband is there for you :) Yup, according to
my doc, he said that they had to remove my appendix because it had endo
on it and it looked as if it could have ruptured at any time because of
the disease all over it. I had no idea he was going to take the
appendix out either until after the surgery. I was surprised to hear
that it was found on my liver too. I believe the stages refer to how
bad the disease is when they do surgery and how much they find and the
progression of the disease. I am not exactly sure though. I do know
that Stage IV is the worst. Hope this helps. If I were you, I would
call your doctor and let them know and maybe they can move your surgery
date up? I feel bad about calling my doctor too, but that is what they
are there for and that is what they get paid for, but I know exactly
where you are coming from :) Since they told me last Thursday to go off
of all meds, including my bcp's, I started bleeding today. Should I
call them or just wait it out until next Thursday when I call them?
At Tue, 27 Jul 2004, Tabitha wrote:
>
>Yes my husband is very supportive and bearing with me thru all of this.
>So it can get to your appendix and liver? Wow, I'm learning alot today.
>I know it can spread but I just don't know where. Good to know. Hey do
>you know what the 'stages' refer to? I see posts referring to having
>stage 2, 3 & 4 and I didn't know there were stages or how they are
>determined. I'd appreciate info if you know about it. The pain has
>gotten progressively worse over the last month. Pain not during my
>period which usually would just be dull pain during the month, but now
>it's bad pain. And this month I've had my period twice...but this
>second time is different and not going away and I don't know to call the
>doc or not. I feel like a bother but I guess that's what they're there
>for.
>
>Thanks for listening.
>
>At Tue, 27 Jul 2004, anonymous wrote:
>>
>>Yup, unfortunately it did not work for me. I didn't really have any
>>side effects from what I can remember. I had the neurectomy in July
>>2003 with my lap and then had the third lap done in October 2003. I am
>>sorry to hear you are having so much pain. I hope your husband is
>>understanding and supportive. My boyfriend has been there for me during
>>all my surgeries and has been very supportive. Endo really does put a
>>damper on sex. I totally understand what you mean. I am happy that you
>>decided against Lupron for now. I would think that your first doctor
>>would have done a lap and then put you on Lupron immediately after the
>>surgery?? I am glad to hear you are going to a new doctor. I, too,
>>switched RE doctors after my second lap because he kept blowing me off
>>and when I went to see my now current RE doc, he did a lap in March 2004
>>and couldn't believe how much endo had grown back while on Lupron. It
>>was even on my appendix and on my liver. He took my appendix out at the
>>same time of the lap. He also said that the endo has spread to my
>>liver, but didn't want to touch that organ, which I don't blame him. I'm
>>glad I found this forum too, because before, I felt like I was all
>>alone.
>>
>>Becky
>>
>>At Tue, 27 Jul 2004, Tabitha wrote:
>>>
>>>Really? Wow, I'm sorry that didn't work. It sounds like a 'cure all'
>>>but I guess there really isn't one or everyone would have done that huh?
>>>
>>>I will be having my 3rd here soon. I went thru this in '92 and had a
>>>lap, got it out and everything was fine till right after I got married
>>>in 2002. Now I can't even have sex with my husband. Had a lap last
>>>July and it got worse after that. Switched docs and the last one just
>>>wanted to throw me on Lupron without even checking me out. Researched
>>>that and decided against it. I decided though to get another opinion at
>>>this women's hospital 2 hours from my home. So he's scheduling a lap
>>>and hopefully some good will come from it.
>>>
>>>Did you have any bad side effects or anything from that neurectomy?
>>>Other than the pain coming back?
>>>
>>>I'm glad I found this board to talk to women who understand this!
>>>
>>>--
>>>Tabitha
>>>
>>>At Tue, 27 Jul 2004, anonymous wrote:
>>>>
>>>>Hi Tabitha,
>>>>
>>>>Interesting enough, I had that procedure done at my second laparoscopy
>>>>and I think that it can grow back?? I'm not sure. Also, I think that
>>>>they can only do it once? Thank you so much for responding. How many
>>>>laps have you had?
>>>>
>>>>Becky
>>>>
>>>>At Tue, 27 Jul 2004, Tabitha wrote:
>>>>>
>>>>>Hi Becky,
>>>>>
>>>>>Have you heard of a Presacral Neurectomy? I just learned of this and it
>>>>>sound like in your case it might be worth looking into. From what my
>>>>>new doctor told me, this procedure has been around for 100 years and is
>>>>>usually only used when nothing else works or the endo is in the uterus
>>>>>wall where it is not accessible. What they do is snip the nerve that
>>>>>connects to your uterus, etc. You still have the endo, but not the
>>>>>pain. The risky thing is that it's located on a major artery along your
>>>>>tailbone. The Dr I started seeing at a women's hospital said they
>>>>>perform this 2-3 times a week there and have never had a problem. I
>>>>>searched for posts about that and recommend you do the same. I may be
>>>>>worth it for you since nothing else seems to work. I'm turning 32 here
>>>>>soon and am not a mom yet so I know how you feel and my thoughts are
>>>>>with you!
>>>>>
>>>>>Good luck!
>>>>>
>>>>>Here's a link with info on that...
>>>>>http://www.womensdoctor.com/Laparoscopic Presacral.htm
>>>>>
>>>>>At Tue, 27 Jul 2004, anonymous wrote:
>>>>>>
>>>>>>Hi!
>>>>>>
>>>>>>I am only 32 and having to make a decision on getting a TAH. I have had
>>>>>>four laparoscopies since November 2002 with them being Stage 3 and 4
>>>>>>Endo each time. I have been on all the medications they treat for
>>>>>>endometriosis and it keeps coming back. I have been on continuous bcp's
>>>>>>with Lupron for a total of a year to 1 1/2 years with the endo coming
>>>>>>back just as bad as if I weren't even on it. After my most recent lap
>>>>>>in March 2004, I was treated with Femara and bcp's. Recently, the pain
>>>>>>has come back and I went to the doc last week and I told him I am
>>>>>>exhausted of having surgeries every three or four months and asked him
>>>>>>what would be next. He said that we have pretty much used everything
>>>>>>they do to treat endo and then we discussed TAH. He told me to stop all
>>>>>>meds and to call him back in two weeks. I guess he wants to make sure
>>>>>>its the meds not causing the pain, who knows? and possibly to make sure
>>>>>>this is what I want to do? I also have PCOS. This is a really hard
>>>>>>decision for me, especially since I don't have any children of my own. I
>>>>>>have a terrific boyfriend who is being very supportive and he has a son
>>>>>>of his own who I get along with great. Does anyone have any
>>>>>>suggestions? or has anyone been faced with this decision to make?
>>>>>>
>>>>>>Thanks,
>>>>>>
>>>>>>Becky
>>>
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