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Endometriosis Message Board
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Old 11-19-2009, 03:29 AM   #1
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yellowtop HB User
Wink Hysterectomy & endometriosis

Hello i'm new to this site & i went into hospital about 3wks ago for a hysterectomy.When i woke you the doctor told be that they could not carry on doing hysterectomy as my endometrosis was so bad,they said it was like cobwebs & too dangours fo carry on.So now i have to go into hospital again in the next couple of months to see a oncologist.I asked if they would defo do it for me this time round because i could not go through all this again.So i was just wondering if anyone has been in the same position as me.
I need to get it done as i am doing adoption & have already been put back because of all this.
Thanks Yellowtop

 
Old 02-01-2010, 10:33 PM   #2
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Lightbulb Re: Hysterectomy & endometriosis

Quote:
Originally Posted by yellowtop View Post
Hello i'm new to this site & i went into hospital about 3wks ago for a hysterectomy.When i woke you the doctor told be that they could not carry on doing hysterectomy as my endometrosis was so bad,they said it was like cobwebs & too dangours fo carry on.So now i have to go into hospital again in the next couple of months to see a oncologist.I asked if they would defo do it for me this time round because i could not go through all this again.So i was just wondering if anyone has been in the same position as me.
I need to get it done as i am doing adoption & have already been put back because of all this.
Thanks Yellowtop
Wow I am not sure but I go in 2 days from now and have 2 adopted boys but am 45 now. They are middle schoolers. I have had endo for over 20 years and am having a LSH but the cobwebs might be an issue for me. That is now something I will ask him about. I know you posted a couple of months ago. How are you now and what did you decide to do. I will post after the surgery.

 
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Old 03-01-2010, 10:23 PM   #3
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Re: Hysterectomy & endometriosis

Yellowtop,

Welcome to the healthboards. I am trying to learn all I can about endometriosis and hysterectomy, as this has all fallen on me in the last 2 weeks.

It has been recommended that I have a full hysterectomy, but I have read stories like yours, and I understand your experience is not uncommon. Did they offer you any other possible treatment?

I have been hospitalized for the pain, and on super strong narcotics for 2 weeks before getting the diagnosis of endo 4 days ago. Since I have other major health issues, major surgery is the last thing I need, of any kind. My Ob/gyn offered me a shot that puts you right into menopause, and killing off the endo, for 3 months, then another shot. The shot cost me $2,000.00 out of pocket, and the side effects were immediate.

So I have 3 months to get all my doctors to ok surgery, or not. There are so may horror stories, etiher way you look...
What does a person do?

How long had you had the endometriosis, and what happened that surgery was performed? What kind of pain did you have, and are you still in it? I am so sorry to hear of your dilemma and I wish you the best.

 
Old 03-03-2010, 05:57 AM   #4
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Re: Hysterectomy & endometriosis

Writeleft,
I am 4 weeks postop and am doing well. Still a bit sore sometimes but I went back to work yesterday. I don't know the full medical condition and the endo. I had quite a bit of endometriosis in the left side of the abdomen and got color photos to prove it. I have had endo for 25 yrs at least that is when it was diagnosed. I share your pain of no children. God bless you in your journey. Right now it is so imperative that you get yourself well. I have not heard of the shot you are referring. When I had 3 laporoscopies over the last 25 yrs after the last one 15 yrs ago they put me on Danazol (male hormone) for 6 months that puts you right into menapause. I was 28 yrs old. This halts the endo but it was right after they went in and lazered the implants. It worked. It will not go away, something will have to be done. Side effects for me were aggressive dreams and weight gain but no more surgeries for 15 or so years. I still have battled heavy periods, swelling until this surgery. My doc said if the LSH could have not been done then he would have opened me up the old way and took care of it. It is 3 incisions is all and they are small one in the belly button I can't even see now, 2" on the left of abdomen (where they remove the uterus in strips), 1" on the right side. Only thing remaining is the cervix that could be taken later vaginally if needed. Ovaries produce estrogen that feeds endo. I didn't know that I thought it was the bleeding. So... I got rid of the ovaries and avoid anymore endo and not risk ovarian cancer. Post me back. I am hear for you. I don't know you but I do know your pain. Don't know your age, I am 46 in a month. I had no issue of taking what needed to be taken to take away the pain. If losing organs is an issue for you don't let it. We are women and having children biologically does not define us as woman. I had to learn that and am very happy. I am on one pill estrace one time a day and I am fine for now. Hope to hear from you soon. A shot for a 3 mo. suppression is a short term solution and if they can do the lsh it is less invasive and short recovery verses the old way. If you leave ovaries it will produce more endo. I made the decision to remove both on the way down to surgery after briefing with the doc. Let me know what you find out
Good Luck.

 
Old 03-03-2010, 07:42 AM   #5
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Re: Hysterectomy & endometriosis

Hi Terry, Good to hear from you...

A bit of background on me, i am 49 years old and I have two sons, one 25 and one 15. My eldest son lives on the east coast (Boston) and my youngest is at home with me. I am a single parent, and have been for many years.

My medical background is crazy! About 8 years ago I had an ectopic pregnancy that ruptured, requiring emergency surgery, and I lost so much blood, I had a heart attack the operation table.

Soon after that, I had 4 simultaneous strokes while I was snorkeling in the ocean. I had terrible hypertension due to my lifetime of work with paints, solvents, petroleum products, etc. The strokes caused my kidneys to fail, leaving me unable to talk, walk, think, and I slept for the first year, and little by little, I regained most of my functions. Even though I can type, I cannot speak anything like I type. I learned to type right here on the HealthBaords, after a solid year of practicing everyday.

Whatever comes my way, I can take it...
So as of today, I am in stage 4 renal failure, and have been fighting to hold off dialysis, which could happen any time. My blood pressure is impossible to keep under control, and requires daily monitoring and adjustments with medication, diet. Basically, I am happy to be alive, but very ill from a combination of illnesses. I have spent everyday of the last 6 years fighting to recover from the strokes.

On valentines day I was hit with excruciating pain in my lower right pelvis. It si a pain that I have had before, many times, but I always got through it, after a few days. This time it was too much to bear, so I want to the ER. I ended up getting admitted for the pain, but they could not find anything, so after 5 days, I went home. Within hours of being released, once the morphine wore off, I was back! this happened three times in the last 14 days.

I was finally diagnosed just 5 days ago, and that's when it got confusing!
With my medical issues, surgery is not that easy. In fact I was on the operation table last year for an exploratory, but my BP shot up, and the doctor wouldn't operate.

In order to relived the pain, I got the shot, and to give myself 3 months to work this out. I have a lot of doctors who all have to give their ok. Meanwhile I have been on narcotic pain meds to help me get though, but I'm as loopy as you get!

I am trying to learn all I can, but it looks like surgery is the best choice, if I can handle it. I am forcng myself to find the positive in all this, but endometriosis ? Damn it.

Last edited by writeleft; 03-03-2010 at 07:45 AM.

 
Old 03-07-2010, 12:24 PM   #6
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Terry45 HB User
Re: Hysterectomy & endometriosis

I am so sorry you are going through so much. With your history, wow I would definitely lean on your docs. Maybe they could just put you 1/2 under with the anastesia and a pain blocker like an epidural for pregnant woman. I don't know as I have never had any health conditions like you have experienced. Such a young lady you are for having to go through this much. Let me know how it goes. I have no idea the options you have at this point. Hang in there they will figure something out. I will keep you in my prayers and will pray that they will find the right method that will be the least risky and you will be free of this awful condition. Take care and stay in touch.

 
Old 03-07-2010, 12:55 PM   #7
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Re: Hysterectomy & endometriosis

Hey thanks! I am so much better! I am feeling much better already...Only have a minute now, but i'll be back.

 
Old 03-08-2010, 06:29 PM   #8
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Re: Hysterectomy & endometriosis

Great to hear. I am doing great also. I am so glad to have this message board to get and give info on how we all deal with our conditions. You are in my prayers.
Terry45

 
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