ENDO Messages for July, 2008: Re: What's next!!?

Re: What's next!!?

From: ampyali (anonymous@obgyn.net)
Thu Jul 24 14:32:11 2008

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Katie--I'm sorry to hear about all your pain and troubles conceiving a child.

You've certainly found a place where others understand what you're going through! It's really important to understand this disease and to also understand what drugs like Lupron can and can't do. There a many good resources on the web but the best are connected to endometriosis specialty treatment centers that practice excision surgery. Excision is the best hope any of us have for living symptom-free. I like to imagine that endo implants are like little icebergs firmly stuck in the pelvic tissues. Obviously, when a laser or electrocautery treatment is used, the majority of the implant is left untouched below the surface.

Lupron puts your body into a psuedo-menopause, which, in some cases, can provide temporary relief. The problem is that Lupron's use is limited by it's harsh side effects and because it doesn't actually treat the disease (only treats the symptoms) the same problems will often return after the drug treatment is stopped.

Excision surgery treats endo more like a cancer. The surgeon completely removes the whole implant, no matter how deep it's buried below the surface. They are also skilled in identifying endo in all it's sizes, shapes and colors, so they miss less. The biggest plus is that one of the main goals is to leave organs intact and preserve fertility. There are many Drs out there who call themselves Endometriosis Specialists, but don't practice excision, so it's important to ask how they treat the disease. It's important to understand that hysterectomy is NOT a cure for endo.

I don't know where you live and because I live on the West Coast, I am only familiar with the specialists here. Others on the forum will be able to direct you to specialists across the country. Here's a couple from my area:

http://www.vitalcareinstitute.com/truth.html

http://www.endometriosissurgeon.com/default.aspx

Best wishes and I will keep you in my prayers!

At Thu, 24 Jul 2008, Katie wrote: >
>My husband and I have been trying to have a baby for 2 1/2 years now, I
>was on clomid for about six months but after a very scary trip to the
>emergency room a softball size cyst was found on my ovary and after two
>months of waiting and severe pain that I couldn't get anyone to
>understand they decided to do surgery to remove the cyst and found that
>I had endometriosis. They were able to remove some of the tissue and
>all of the cyst without removing my ovary. I had the surgery the last
>week in Feb. I have been recieving Lupron shots since March and will be
>getting my last shot in August, then following up with the ultra-sound
>in September to see the condition of the endometriosis.
>
>I am wondering if anyone knows what might happen for me next, it has
>been a very difficult and long journey. I started having problems and
>pains back in high school, the doctors said I had cysts on my ovaries
>and that the only thing that would help was birth control pills, I did
>fine on pill which was from 1999 to 2005, but when I stopped taking the
>pill things got bad fast, I never imagined I would be having surgery or
>be waiting this long to have a baby. Everyone around me is having
>children, all of my siblings that are of child bearing age have children
>including my sister who just turned 21 and is a single mother, it just
>doesn't make sense to me.
>
>I'm looking for some comfort and not feeling so alone, my husband is a
>wonderful supporter, but he can't even come close to understanding the
>pain and discomfort that I go through. I have no one else to talk to,
>no one else who understands.
>
>Thank you for listening to me and I would welcome any support or advice.
>Katie

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