ENDO Messages for July, 2006: Re: Stage IV Endo..hysterectomy decision..Extreme sadness

Re: Stage IV Endo..hysterectomy decision..Extreme sadness

From: anonymous@obgyn.net
Sun Jul 30 20:55:41 2006

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Hi Kath:

First let me say welcome. Big Hugs from afar! I am so sorry to hear that you are at the final and most crucial point in your battle with endo. I am a stage IV as well and can relate on a lot of levels of what you are and have to go through. It looks like your body has been through so much as well as your heart. I had to resign piece by piece to get to the point of a hysterectomy. I lost a baby while trying in the early stages of pregnancy. Even with a loving husband he still has a hard time understanding the why and how are you women having to continue to suffer like this. After my hysterectomy in 2002 I felt tons better for 8 years..now I am 42 and it's back not as bad but just as debilitating if that makes sense. The "H" is not the cure, seems nothing is but you have less organs to battle with. Not to minimize you and your life long friend - your body. Some like me have constant problems with colon, bowel, retropertioneal fibrosis and urological blockages still with this disease after and "H". But that is me..Others have less or more problems still after an "H" The key is to keep managing it before and after your "h". Like I said I didn't have a reoccurance again for 8 wonderful years and now I back managing it again the best I can with our in or outpatiet surgeries to remove the scar tissue and adhesions over time. Hopefully after your's you will see a greater effect and can come down and clean out your body from all the medicines and procedures you have been through. It takes time..and an answer will come about children for you..if you keep searching when you are ready.

We ended up adopting. We started the process 5 months after my "H" because I was so sad I thought my heart was going to break in a thousand pieces. It seemed like forever before we got our daughter at 11 months old in 2003. I won't lie I didn't feel my heart fill up again until I had her in my arms. I was so beaten down with this disease like you..it's hell. The good side is single people are adopting now all over the world. There are programs that if you can't travel there to get your daughter for an extra fee they can chaparone (hope I spelled this right) her to the airport. I have an autoimmune deficiency now because of this disease so I didn't even get to go get her. My husband and father-in-law went (as he conducts business there all the time) and was a big help.

I look at my life now as the reason God did not want me to have my own children was maybe something worse would happen to me. I give lots of credit to single women who are battling this disease and raising a child- they deserve it too. It's just a little harder on those days when it takes you down.

One last thought..after you do your "h" can you do something to cease your cycles before and after your "H"? Have no period prior to surgery so the endo can be dormant and when they operate it will be better for them to get as much as possible without the spreading of disturbing more? Sorry, so long, I just wanted to share with you some future options. It's going to be OK..you and your body deserve a break and there is hope. If you ever want to write me personally about adoption, I would be happy to help anyway I can.

God Bless you and I am here for you!

Elisa At Sun, 30 Jul 2006, Kath wrote: >
>Hi. I'm new to the board but I'm hoping to find some support here. I've
>been dx with Stage IV Endo years ago. I'm single and have never had
>children. I actually tried to conceive for almost 2 years, beginning a
>little over 2 years ago. I'm at the end of my journey as my RE has told
>me that I really need to have a Hysterectomy. My Ob/gyn told me that I
>needed one 7 years ago after she did my first Lap. I've been through
>more laps, Lupron, fertility treatments, birth control pills, etc....Now
>I'm taking Vicodin every month and still suffer from a lot of pain.
>Anyway..the reason I'm writing tonight is because I've been so sad. I'm
>Never like this. I have to give my RE the decision to do the H on
>Tuesday. I'm going to ask that we wait until the end of Winter so I'm
>not depressed from Winter along with the H. Has anyone else experienced
>this horrible sadness? I just can't stop crying. (This is the opposite
>of how I usually feel) If so, what did you do to make it go away? I Hate
>being like this!!!!!

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