Post-Op Endometriosis Options?

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Lilukalani
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/29/2011 4:48 AM (GMT -6)   
Hello! I had posted a topic on here about getting a Diagnostic Lap scheduled a while ago. It is now scheduled for May 18th, with pre-op May 16th. During pre-op, I want to talk to my doctor about what options I have for treatment post-op. During my last visit he told me about the "Menopause" shot, which I assume is Lupron thanks to a member of the forums, and doing "Add-back therapy" after wards. I did as much research as I could and got a lot of peoples opinions and I came to the conclusion that this would most likely just make me worse and that the Lupron seemed pointless if he was going to do the "Add-back therapy" after wards. I am only 21 years old and I am currently on Depo-Provera and I can hardly handle the mood swings, headaches and extreme fatigue from it. I don't like the Depo shot at all because of how the side effects are with me and I doubt Lupron would be any better. I want my pain to get better, but I don't want to substitute it for mental problems.
So I was wondering what other options are there? He only briefly mentioned those two at the time but I'm sure there must be more. I really don't want to put myself through more mental stress.

ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 4/29/2011 6:04 AM (GMT -6)   
All I can say is from my experience.
 
Lupron is evil. It made me utterly miserable, a raging cranky butt and the hot flashes were worse then the real surgical menopause I went through. I have met very few people who had success without intense side effects.  The add back therepy is progesterin, usually in synthetic form. If you do go this route, talk to a compounding pharm and look at bio-identical add-backs.
 
 
There are not a lot of cures or treatments for endo other then hormone therepy. You may want to talk to your OB about setting up an appointment with a compouding pharmacist. They can do wonders for hormone control and do it will much more body friendly hormones. Mine has saved my sanity since I had everything removed and went into surgical menopause.

Some tips for handling endo and adeno.
 
Avoid all phytoestrogen plants.
    Food with soya, milk with hormones in it
    Watch the meat you eat, it has a lot of hormones in it.
    Find out about the mirena coil. It is a wonder for some women because the low does progestorin it puts in your uterus but be warned, if they suspect you have adenometriosis it will make it worse. (Adeno is endo but it grows within the muscles of the uterus)
 
 
Best of luck to you.
 
Sarrah

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/29/2011 9:27 PM (GMT -6)   
If possible, find a surgeon that will remove all the endo. The endo surgeons with the highest success rates rarely use any medications after surgery because they remove all the endo. If all the endo is surgically removed, there is no need to suppress it.

I highly recommend getting the most experienced endo surgeon you can find so you can have the fewest surgeries possible. Each abdominal surgery increases your risk of adhesions and adhesions can be as painful as endo.

The Center for Endometriosis Care (CEC) in Georgia is one of the top rated facilities. They have a great reputation for helping women and women come from all over the country, actually, all over the world for surgery with their docs. They will do a records review (I think it's still free) where you send them your records and they call you to discuss their treatment recommendations. One of their docs talked to my friend for about 45 minutes and had great info for her.

Please take your time and research all of your options. Don't let anyone (docs included) rush you or pressure you into treatment. You are vulnerable when you are in pain, you want it to stop now, and some people will pressure you into treatment.

If I had $1.00 for every person that told me that so-and-so had endo so they had everything taken out (hysterectomy) and now they are fine, I could retire. When I question further, they usually tell me that the woman still has pain and problems but the endo is cured, I want to scream. Hysterectomy does not cure endo, some women continue to have serious pain and problems but every one tells them it can't be endo anymore. Hysterectomy does help some women, especially those with adenomyosis, but you have no way to know which side you will be on.

I am so sorry this is happening to you.
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