ENDO Messages for January, 2007: Re: cently diagnosed and very discouraged....

Re: cently diagnosed and very discouraged....

From: Jenn (anonymous@obgyn.net)
Sat Jan 27 23:10:37 2007

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Previous message: Liz: "Recently diagnosed and very discouraged...."
In reply to: Liz: "Recently diagnosed and very discouraged...."

Hi Liz,

Don't be discouraged, you know what you're dealing with and it a) doesn't necessarily cause infertility and b) is treatable. I think it's 65% of women who have endo can have children, those that can't on the first try can often be helped with the kind of surgery I assume you just had, either with laproscopic laser or excision (excision seems to be more successful in the long run according to many endo patients and a few studies...85% nonrecurrance rate for 20 years of patients at one speciality center). Yes, antecdotally, endo tends to come back when it is burned off...but only if it's deeper than the 2mm that the laser reaches. As far as I can tell, and this is just conjecture here, the younger you are the better your chances of laser getting it all or most of it. Deep endo can be up to 5mm deep (from what a specialist told me).

I keep wondering if women who don't have pain, don't have the level of immune involvement that those of us with crushing pain have...if anyone knows anything about this, please let me know.

You can read stories about endo and diet on http://www.endo-resolved.net. And a lot of people have recommend Dian Shepperson Mills's book _Endometriosis: A Key to Healing and Fertility Through Nutrition_. I learned a lot from it, there's an overview of medical treatments and then chapters 7-15 are about nutrition and supplements.

If you do BC pills, most people I've talked to try hard to go for the low estrogen ones (the theory is that estrogen feeds endo).

For a general endo reference I recommend is Mary Lou Ballweg and the Endo Assn's recent _Endometriosis: The Complete Reference for Taking Charge of Your Health_

I've also seen posts inquiring about http://www.clearpassage.com/, but haven't heard from anyone who's tried it...maybe it's a website to file away for a few years from now, if you end up needing help with fertility.

If you end up wanting a doctor with expertise in endo, check out http://www.geocities.com/endovictims/endodocs.html or the EndoDocs group on Yahoo. Another source of patient discussion is the ERC's group at yahoo (ERC = endo research center). You could also get a corraspondance list of people talking about fertility and endo if you join the Endo Assn, http://www.endoassn.org.

These are the sources of info that have helped me, I hope they help you too. I know it's a lot of info fast, but it's the kind of stuff I wish I'd known when I first got diagnosed. As far as I can tell, in most cases where it doesn't manifest as unrelenting pain, this disease can be very manageable (if not surgically curable).

-- Jenn

PS If you every hear "Lupron", my strongly held advise is RUN. To find out why (and how many people agree with me), search this fourm.

At Sat, 27 Jan 2007, Liz wrote: > >After being diagnosed with a 2nd tubal pregnancy, my dr. decided to do >surgery to remove the baby and leave the left tube disconnected so there >would be no further tubal pregnancies. While the Dr. was doing the >surgery he found endometriosis all over my pelvic region. He was able >to remove all of it with a laser. I never knew, or even suspected, that >I had endometriosis. I absolutely LOVE my dr. and greatly respect him, >but he seems to think the endometriosis will not come back, but >everything that I have been reading on the internet says it will. He >doesn't think I need to go on birth control, or do anything. My husband >and I are young, newly married and would like to wait a few years before >trying to have a baby, but I am afraid it will come back in the mean >time. Any advice? Also, anyone have success with a certian diet?

Next message: D: "Re: Endo returning while on Lupron?"
Previous message: Liz: "Recently diagnosed and very discouraged...."
In reply to: Liz: "Recently diagnosed and very discouraged...."

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