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Severe Endo; Preparing for Hysterectomy Severe Endo; Preparing for Hysterectomy

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Unread 07-07-2002, 04:30 PM
Severe Endo; Preparing for Hysterectomy

Hello Everyone. My name is Rachel and I am 23 years old. I am new to the site and don't know all of the codes for tems yet so bear with me. I have been diagnosed with Endo since I was 20. I was misdiagnosed for 3 years and told that it probably was just something "in my head". Since being diagnosed, I have had 4 laparoscopies and am now on my 4th 6 month run of Lupron. I am also going through HRT. To complicate the situation I have colon problems. I have had 5 colonoscopies, and one upper endoscopy in the past 5 years. They have found colon polyps in the past with early signs of cancer.

The problem is that nothing has seemed to work. I still have attacks and cannot work because of the pain and exhaustion. He only thing left is Hysterectomy. Because of the Endo it will be a total abdominal hysterecomy. I already have a small chance of bing able to ever get pregnant because of the endo and ovarian cysts.

I have done quite a bit of research on the surgery but am still very nervous. I know that this is the right decision for me. I have to wait until the beginning of september for the surgery but wish I could have it now. Hysterectomy is not a 100% cure for endo but it will at least help. Anything is worth a lower amount of pain.

I just don't know anyone my age that has gone through what I have gone through. Its quite lonely. I have support from my family and friends...bu they can only understand so much..

thank you for listening...if you have any advice, I would love to hear it.
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Unread 07-07-2002, 05:12 PM
Severe Endo; Preparing for Hysterectomy

Dear Rachel,

Welcome to Hystersisters!! I am very glad that you found us and that you decided to post.

I'm so sorry that you have had so many years of pain and of being misdiagnosed.

I have seen several threads in the past from young women your age, and even younger, who have had to have a hyst due to various problems. If you do a search (little purple button at top right) on the word young you should find several threads that may help.

Have you read the pre-op and post-op hints that are found in the drop-down menus on the main page? They may help you to be even more prepared for your surgery.

I hope that you'll continue to read and to post. We'll try to answer your questions and will always be here to give you a

Unread 07-07-2002, 05:13 PM
Severe Endo; Preparing for Hysterectomy

Dear RG,
I am so sorry that you are having to go through this. I was diagnosed with endo w/adhesions at 20. I was fortunate to have a great doc, but it was still such a trial... I went through the procedures (laporoscopy/laporotomy), the treatments (synarel/danacrin, etc.) I was never able to get pregnant. It has taken me twenty years of pain, inconvenience, moods, fibroids and mess to finally have enough and say - that's it I want this out of here.
You are the only one that can make a decison for and about you.
We are here for you to ask questions or just vent. Sometimes that is all you need for a minute or two.
Let us here from you.
Take care of yourself.
Be well and be blessed.
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Unread 07-07-2002, 05:43 PM
Keeping ovaries??

Your post didn't mention whether or not you were keeping your ovaries, but that's an issue that you need to consider with certainly don't want to come back to surgery if you don't have to, and taking both ovaries is much more likely to vanish your endo.

There's a young woman here -- wish I could remember her user name -- but she has a page on "teen endo". You might try a search for that to connect with your younger bunch.

I had my first surgery for endo at 20 also. Sometimes I think I would have been healthier had I done all this ten years earlier (I'm 47 now) at least. My SAH-BSO was (hopefully) the last of 5 surgeries...

Good luck to you. Research very carefully your hormone replacement options, too, as estrogen replacement can bring back whatever endo your surgeon may have missed. My favorite site for that subject (next to this one, of course ! ) is Survivor's Guide to Surgical Menopause . This site was also most useful as I researched my choices.

Good luck to you! You deserve an off-ramp to this road you're on...


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