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Help - need advice re hyst decision Help - need advice re hyst decision

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  #1  
Unread 11-28-2005, 04:19 PM
Help - need advice re hyst decision

Hi Guys

I have only been on here a very short while - my intro message is on the intro board - - but bsaically i am 25 and was dxd with endo when i was 23 - didnt realise (or really GET ) how severe it was. I have since had 4 surgeries for stage 4 endo that was EVERYWHERE. Rectovaginal nodule keeps coming back as well as adhesions and re-appearance of endo. I had a very major surgery in jan 2004 where i had all my peritoneum stripped, endo off both ovaries, side walls, ovaries and tubes stuck to side walls and bowel, bowel stuck to womb which was stuck to rectum, endo rel;ated to both ureters and uterine vessels - i wont go on - you get the picture!!!

I have been on GnRH since - well really since the dx - although i did have a small break.

I jab myself 3 times a day with Buserelin (dont know what brand name in USA - but UK is Suprecur).

A while back i had a joke with my OBYGN saying i wanted everything 'out' - i was half kidding- but was in so much pain.....- thinking he would laugh and say it was NOT necessary - well that taught me LOL - he said it was somehting i would have to think about seriously, but he would try his upmost to keep everything in there. Note to Me- NEVER joke about these things - even if I THINK its a joke - well the dr's may not - and may actually AGREE with your so called joke!!!

Anyway my OBGYN is simply FANTASTIC - he is an endo spec as well which helps things.

I am on the Uk endo board - but also wanted to get another side to my decision - from either people who have had hysts for endo - or who are contemplating it or who havent decided or who have decided not to etcetc

I just dont knwo what to do. I am 25...

i dont want tto use my own eggs due to genetic disorder (will NOT take that chance - 50% to pass on i am simply not doing that to my child) - BUT I DO WANT KIDS - maybe with donor eggs .. iDEALLY i want to keep my womb but chuck the ovaries - but wonder if thats possible - i.e to 'mother' a child via eggs but with no ovaries - i am assuming not - but with the relevant hormones (to do what the ovaries would do throughout oregnancy - maybe - just maybe this is possible??)

any pearls of wisdom for me? Thanks SO much in advance!!

Mich
25 Endometriosis and Noonan SYndrome. Open heart surgery (ASD repair), pulmonary valve stenosis, 9 eye surgeries, 3 joint surgeries, 4 gynae surgeries + other surgeries

Stage IV endo - dxd Nov 2003. Large rectovaginal nodule (re-occuring x 3) both ovaries, side walls, tubes, also relating to ureters and utrerine vessels, also adhesions sticking ovaries, bowel, womb, tubes, side walls rectum together.

4 surgeries using following: harmonic scalpel, aquadissection, diathermy, laser, sharp dissection, blunt dissection, ultracision etc etc
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  #2  
Unread 11-28-2005, 05:06 PM
Help - need advice re hyst decision

Dear Mich ~

While I don't have a story to share about this, reading your message made me want to say I greatly admire you for becoming aware and articulate about all you have been through and are facing! You're really an amazing woman!! I'm sure others here will fill in what I cannot offer. Blessings on the rest of your journey, and thanks for coming to this site. Welcome, with a full heart.
  #3  
Unread 11-28-2005, 06:54 PM
Help - need advice re hyst decision

  Quote:
Originally Posted by michellis25
i dont want to use my own eggs due to genetic disorder (will NOT take that chance - 50% to pass on i am simply not doing that to my child) - BUT I DO WANT KIDS - maybe with donor eggs .. iDEALLY i want to keep my womb but chuck the ovaries - but wonder if thats possible - i.e to 'mother' a child via eggs but with no ovaries - i am assuming not - but with the relevant hormones (to do what the ovaries would do throughout oregnancy - maybe - just maybe this is possible??)
Dear Mich:

I believe you would need to retain your ovaries to put out the hormones needed to sustain a pregnancy, BUT you could seek out donor egg and/or sperm to conceive. Here is a link with more info & support: www.fertilethoughts.com

I hope you find the right answers soon. I am sending huge cyberhugs
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  #4  
Unread 11-30-2005, 04:43 PM
thanks soo much

thanks so much for your help guys

please do keep replying to this post as i need as many opinions/experiences/wisdom/support that you can all give

bad pain day today and tummy probs g*d i hate this wretched endo!
  #5  
Unread 11-30-2005, 08:13 PM
Help - need advice re hyst decision

Hello Mich,

I myself am 25 year old so I know the decision you are faced with. I am fortunate to have two children already so I can imagine your fears.

I can help a little bit about the pregnancy part. My second child was conceived via IVF w/ ISCI. I am about 99% sure that you do need your ovaries to sustain a pregnancy. That is something you would be able to discuss with your Dr. I do not know your situation, but at what time period do you feel that you want to have children? If it is soon I would suggest having children and then afterwards looking into the hysterectomy and other options for the Endo. If you are looking not in the near future to be a mother, but 3+ years out then I wish I could give you more advice. There is always the possibility of adoption, again do not know how you feel about that.

From your post it sounds like you have already went through so much and you sound like such a strong, wonderful woman. I wish I had some more advice I could help you with.

Kelly
  #6  
Unread 12-01-2005, 08:23 AM
thanks again

thanks so much hon

yeah i suspected as such

i am not in a relationship at the moment (though i want to be!) - but i desperately want kids

i really have 3 options

1) have egg donation but keep womb & ovaries and have children that way

2) adopt & keep womb

3) hyst and adopt

atm i am on permenant induced menopause (buserelin jabs 3 x a day - i feel like a sprinkler lol

thanks!!
  #7  
Unread 12-01-2005, 12:19 PM
Help - need advice re hyst decision

Hi Mich,

I completely hear ya about feeling like a sprinkler! When I was on my IVF cycle I had to have shots everyday. Of course DH gave them to me, but had to have shots in the stomach, butt and hips. After a white my bumm hurt so bad that I had these lumps and gosh was it sore to sit, LOL.

I hope you feel better and I am wishing you tons of luck on your decision. Keep us informed!

Kelly
  #8  
Unread 12-03-2005, 06:29 PM
Help - need advice re hyst decision

My GYN advised me that if I were to have both ovaries removed but keep my uterus, it would bleed. Second opinion GYN agreed. Hope that helps you.
  #9  
Unread 12-03-2005, 11:50 PM
Help - need advice re hyst decision

If you have your ovaries removed and keep your uterus, given your endo history, if you want to avoid the endo re-growing, you'll need to use hormones (some type of progesterone or progestin) which will both inhibit the regrowth of endo and at the same time prevent a buildup of the endometrium. That particular balance of hormones will preclude your carrying a fetus. If you decided to try to do in vitro fertilization using donor eggs and then implant the embryo in your uterus, you'd need to set up a different hormone balance... one which would both encourage the regrowth of endo as well as greatly increase your odds of getting endometrial cancer. Even then, it's doubtful that you could carry a fetus to term. The balance of hormones our bodies create for themselves during pregnancy is so delicate... it is virtually impossible given our current state of knowledge about hormones to duplicate it using HRT's.

I'm surprised your DR would encourage you to remove the ovaries and not the uterus, when you can chemically suppress the ovaries and achieve the same result. Given how severe your endo is, you might also find that when your DR gets in there, in order to get as much of it as possible, your uterus might have to be removed anyway. When things get fused together, unfortunately sometimes there is no choice.

You are in such a tough spot... and I understand you must want to grasp at any straw you can if it might hold a chance of delivering a baby. I hate to burst that bubble, but I don't think we'd be doing you much of a service if we built up your hopes in that area. At this point in time, the knowledge just isn't there that would enable you to do what you're suggesting.

Wishing you the best of luck with whatever you decide to do.

s,
-Linda
  #10  
Unread 12-04-2005, 04:55 PM
Help - need advice re hyst decision

surferbabe - i was never advised my any doc to keep womb - this is just a question i had

i suspect u MAY be commenting on what healthmaven said!!


i know what u mean by adhesions - i seem to get REALLY severe adhesions - cos i keloid outisde - i will obviously keloid inside (all to do with my noonan syndrome) - also cos i have a bleeding disorder - this will make the adhesions worse as the more bleeding and raw tissues theer are inside the more adheisons form - as well as more endo cos ofd the bleeding probs - and the more endo - the worse the endo is and the worse teh adhesions are - its a vicous circle really


anway i just wanted to say thanks and clear up the top bit - -am REALLY sorry if it came accross as me saying it was my doc that suggested chucking ovaries and keeping womb and then having babies - it was just something i wanted to know whether it was possible! So sorry again and THANKS SO MUCH for your and ALL replies

keep them coming guys - -i hope i can give SOME of the support u guys have given me - if i can give SOME i will be really happy - if i cam give more than just some - will be happier!!

Oh goodness can u tell i have just had my fentanyl?? LOL

THASNKS THANKS THANKS THANKS!!
i just wanted to say THANKS for you info and wisdom

although i keep telling myself to just get on and make a decison - i dont think i am ready for that at the moment

since my last surgery 9 weeks ago i AM better, no where NEAR perfect - but as i said i am on the permenant induced menopause - drug induced - busrelin 3 x sticks a day with normal syringes (not a pen like device which i WISH i could use - MUCH easier than messing around with all these syringes - u should see my medicine cabinet - well not a cabinet so much as a set of 5 drawers!!!)

i think in the states u have a pen like device? Busrelin injections is not usually used for endo - more for IVF - but the nose spray is commonly useed - but cos i have had REAL problems with nose bleeds in the past - the spray will irritate the lining and cause more probs

ok i am babblying on

to HEALTHMAVEN - thanks for your info - it makes sense i guess andx u never know in the future it may be possible to have a baby without the ovaries but using eggs.
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