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Hysterectomy at 28 - 5/28/2008 7:56:33 AM
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PrincessDonna
Posts: 10175
Joined: 4/11/2005
From: Cow country, Upstate NY
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Giving this it's own thread, so I don't hog the pregnancy thread and so the discussion is all in one place.
Background for those who don't know...I am pregnant with #5, due in September. I have had an agressive form of endometriosis for years now, and it gets worse after each baby. My doctor is willing to do a hysterectomy when we are done having babies, as that is the only cure for endometriosis as severe as mine. We're pretty sure (maybe 85%) that after this baby, we will do that.
Carried over from the pregnancy thread...
quote:
How are you feeling about the hysterectomy?
Sometimes okay, sometimes pretty scared. There just seems to be so much unknown that we can't know until we see how my body reacts. I have a deep fear of going crazy like my aunt did when she had hers at the same age and for the same reason.  Also, I know I can continue to breastfeed theoretically, but if my body NEEDS replacement hormones right away, I may not be able to, and I know that will be upsetting to me.
We're still not decided 100%, but that's only because we haven't heard a big, booming voice from Heaven telling us to do it. One of those times when I wish God would speak very clearly and audibly...Hey, Donna and Brian! This is God and this is what I want you to do.  Sigh. If it were not for my physical issues and if we had unlimited financial resources, we would probably have as many babies as God would give us. It's hard for me to find a balance between trusting God for ALL things and knowing that we do live in a fallen world and it's okay to take "optional" body parts out if they are not working properly. Finances are a secondary issue to us, but still, it is an issue...
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Donna will it be complete with ovary removal too?
Last I talked to him (before this pregnancy), yes, it would be. I'm going ask again though. I only have about 2/3 of an ovary left anyway, but it obviously can still do its job. 
quote:
What kind of crazy are we talking about with your aunt? Preventable? Treatable? Did she have the support system that you do?
I'm not entirely sure because I can't just come out and ask her. All I have are what my mom and other aunt have to say about it...that Aunt K went crazy for a few years. I personally think she is still a bit neurotic 25 years later, so maybe it had nothing to do with the hysterectomy? 
I keep telling myself that doctors know much, much more about hormone replacement than they did 25 years ago, and there are more options available (for instance, plant-based bio-identical hormones are recommended now vs. the synthetic made from horse urine ones that have been given for years and years).
Part of what worries me is I have now been to two Christian seminars on menopause, including surgical. Both mentioned that God designed menopause to be during the time when most women are also experiencing empty nest syndrome. Obviously, my nest will be very full (5 kids under 9!), and my family will very much need me to not go nuts. The doctor that taught the first seminar I went to told me I may well do better emotionally than an older woman, simply because I will have people who need me to be okay. I hope he's right...
quote:
I've got the same question as Brandy - what do you mean "crazy"?? Also - would you get the operation soon after baby is born, or quite a bit later so as not to interfere with BF'ing? It sounds like you've got a lot of difficult, BIG life decisions to make. I'll be praying for you!
The operation would be 3-4 months after the baby is born, in order for the endometriosis to not have a chance to flare up again. Last time, I am pretty sure it had attached to my intestines and colon, so the sooner we do it, the better chance of getting it all with minimal complications. Last time they were in there to see it (2005), it had not spread much past my uterus, ovaries, and tubes, but my symptoms since then have increased quite a bit.
_____________________________
He fulfills the desires of those who fear Him;
He hears their cry and saves them.
The Lord watches over all who love him,
but all the wicked He will destroy.
~Psalm 145:19-20~
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RE: Hysterectomy at 28 - 5/28/2008 9:50:42 AM
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Ellie-Mae
Posts: 3612
Joined: 4/9/2005
From: The EMPIRE state!
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quote:
We're still not decided 100%, but that's only because we haven't heard a big, booming voice from Heaven telling us to do it. One of those times when I wish God would speak very clearly and audibly...Hey, Donna and Brian! This is God and this is what I want you to do. Sigh. If it were not for my physical issues and if we had unlimited financial resources, we would probably have as many babies as God would give us. It's hard for me to find a balance between trusting God for ALL things and knowing that we do live in a fallen world and it's okay to take "optional" body parts out if they are not working properly.
I have SO been there. You were there with me, and saw me struggle with it. I think that I remember talking about it with you. I was hoping that God would just stop giving me kids when He didn't want me to have anymore. Of course, the paths that God chooses for us aren't always simple like that.
I can honestly say that I don't miss being pregnant at all and am at peace with that, but I would still love to have more babies and children. I think that God is going to provide differently now.
Now I have lost my thyroid. In some ways that was almost harder for me because now I know that I will have to be on meds for the rest of my life. I feel incomplete... handicapped if you will. These meds will control my hormones that control a host of other things. I find that scary. I am sure that with time that it won't be scary, but I cannot imagine feeling whole ever again even if does happen to a lot of people.
I think that you have been very brave, and God has given you miracles above and beyond the ones that are often taken for granted. I will pray that God makes His will clear to you and Brian and give you both peace for whichever way He sends you.
_____________________________
Please do not PM me about this message, discuss it at the water cooler, or include it in your church bulletins. If you have questions, please keep them to yourself. ~Kerrlaw
W2D1
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RE: Hysterectomy at 28 - 5/28/2008 11:40:47 AM
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TammyIsBlessed
Posts: 1478
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Are you considering delaying the surgery until after you're done nursing? Or is that not even an option right now?
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I am only one, but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do. Helen Keller
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RE: Hysterectomy at 28 - 5/28/2008 4:14:21 PM
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PrincessDonna
Posts: 10175
Joined: 4/11/2005
From: Cow country, Upstate NY
Status: online
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quote:
I actually didn't know that endo could move beyond reproductive organs, that's very interesting...if you chose not to have a hysterectomy...how aggressive could it get? What kind of complications beyond your fertility?
Endometriosis is when the lining of the uterus grows on the outside of the uterus. If I don't have a hysterectomy, it will grow around all my abdominal organs...intestines, colon, bladder, etc...binding them all together and causing all kinds of problems. I could treat it with BC pills, but I don't want to do that forever. I could also go on Lupron, which causes artificial menopause, but that can't be done for more than 6 months and has nasty side effects. I could also just leave it alone and periodically have laproscopic surgery to clean it off, but the lap. surgery itself causes scar tissue, which is a whole other issue.
Long term, if we are not interested in preserving fertility, hysterectomy is the only cure for endo. AND I've learned that if they miss any of it, hormone replacement therapy can still cause it to grow, even after a hysterectomy...so it's very important they get it ALL.
Before this pregnancy, I already had signs of it spreading to my colon, evidenced by bowel problems.  Pregnancy causes it to shrink back or at least stop growing, but after baby is born and I start cycling again, it comes back each time, and worse each time.
Thank you, Jennifer and Lisa!
quote:
Are you considering delaying the surgery until after you're done nursing? Or is that not even an option right now?
Right now, no. My cycle came back 4 and 6 months postpartum while exclusively nursing, so if we want to catch it before it starts growing again, it needs to be done sooner. I could probably use some of the temporary things and wait longer, but since those will also affect nursing, I don't see an advantage there, KWIM?
_____________________________
He fulfills the desires of those who fear Him;
He hears their cry and saves them.
The Lord watches over all who love him,
but all the wicked He will destroy.
~Psalm 145:19-20~
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RE: Hysterectomy at 28 - 5/28/2008 4:17:28 PM
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Brandy
Posts: 1839
Joined: 4/7/2005
From: Los Angeles
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Do progesterone BC pills effect endo? I know they are safe for BF'ing but not sure if they would just stimulate the endo more.
_____________________________
~Brandy
<--- Isabel Grace eating on Thanksgiving. Her first food.
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RE: Hysterectomy at 28 - 5/28/2008 4:32:59 PM
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myka
Posts: 811
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(((((Donna)))))
I'm glad that you started this thread; I'm glad that you are inviting us to walk with you. We care about you and your family.
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RE: Hysterectomy at 28 - 5/28/2008 5:12:52 PM
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TammyIsBlessed
Posts: 1478
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Wow, Donna, that's just tough. Assuming you do have the hysterectomy we'll sure be praying that God will do a miracle in allowing you to breastfeed as long as you had wanted/planned to. What a tough decision.
_____________________________
I am only one, but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do. Helen Keller
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RE: Hysterectomy at 28 - 5/28/2008 5:14:55 PM
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PrincessDonna
Posts: 10175
Joined: 4/11/2005
From: Cow country, Upstate NY
Status: online
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Thanks...
Everything I've read has said that the hysterectomy itself should not affect bfing, since it is the pituitary gland that regulates that, not anything that will be removed. Any hormones I might need to be on could though...but there's no way to know until that time.
_____________________________
He fulfills the desires of those who fear Him;
He hears their cry and saves them.
The Lord watches over all who love him,
but all the wicked He will destroy.
~Psalm 145:19-20~
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RE: Hysterectomy at 28 - 5/28/2008 5:28:13 PM
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Brandy
Posts: 1839
Joined: 4/7/2005
From: Los Angeles
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What kind of effect can the HRT have on your supply or the baby?
_____________________________
~Brandy
<--- Isabel Grace eating on Thanksgiving. Her first food.
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RE: Hysterectomy at 28 - 5/28/2008 6:19:24 PM
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crimsonfollower
Posts: 631
Joined: 12/29/2006
From: the middle of nowhere
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Donna- just letting you know that I am reading and praying for you while you try to make this decision
_____________________________
Beth
"Do not be conformed to this world, but continually be transformed by the renewing of your minds so that you may be able to determine what God's will is-what is proper, pleasing, and perfect." Romans 12:2 ISV
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RE: Hysterectomy at 28 - 5/28/2008 8:08:59 PM
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PrincessDonna
Posts: 10175
Joined: 4/11/2005
From: Cow country, Upstate NY
Status: online
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quote:
What do you think is the main reason you wouldn't have the hysterectomy? I.E., not sure you're done having children? Worried about breastfeeding? Something else? I know you've mentioned several different things, but I'm wondering if there is one primary issue, or if they're all just muddling together.
Why would I not? Hmmm...they are kind of muddled right now, so let's see if I can unmuddle them.
Part of me feels like if I do this, it's because I didn't have enough faith that God would heal me. I know He can if He wills it...I just don't know that it is God's will for me to be healed of this supernaturally. I mean, this has been going on since 2003, so He's certainly had time if He wanted to heal me, KWIM? If God wants to heal me, then I don't want to have the surgery. But how do I know God doesn't want to heal me? And round and round I go... 
And while part of me would love to keep having babies, we both feel like this is a good number for us now. We do hope/plan to foster and maybe adopt later on, like in 10 years or so. But I do love carrying new life, even though pregnancy is hard on my body.
I am worried about bfing, but not enough to not have the surgery. To me, that's a secondary issue that we'll deal with when the time comes. I'll nurse as long as I can and if it doesn't work out...well, then, it doesn't work out. My oldest had formula alone from 4 months and he is a smarty pants. If it comes down to a choice between a healthy Mommy or a bf baby, then I have to go with the healthy Mommy...for my family and for myself.
_____________________________
He fulfills the desires of those who fear Him;
He hears their cry and saves them.
The Lord watches over all who love him,
but all the wicked He will destroy.
~Psalm 145:19-20~
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RE: Hysterectomy at 28 - 5/28/2008 8:22:51 PM
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sharonjef2007
Posts: 645
Joined: 4/10/2007
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Is it possible that God's way of healing you is through the surgery? Just a thought.....
You mentioned Lupron and I have been on that one before. Have you ever taken it? If so, then that should give you a window into what you will feel during menopause.
One thing to think about and perhaps ask your doctor about the surgery is about the differences in having sudden and complete menopause and natural menopause. Will there be a difference in your bodies reaction since normal menopause is gradual and the surgery is a huge and fast process of menopause.
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my blog......Finally, a new last name!.......
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RE: Hysterectomy at 28 - 5/28/2008 8:22:59 PM
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Ellie-Mae
Posts: 3612
Joined: 4/9/2005
From: The EMPIRE state!
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quote:
Part of me feels like if I do this, it's because I didn't have enough faith that God would heal me. I know He can if He wills it...I just don't know that it is God's will for me to be healed of this supernaturally. I mean, this has been going on since 2003, so He's certainly had time if He wanted to heal me, KWIM? If God wants to heal me, then I don't want to have the surgery. But how do I know God doesn't want to heal me? And round and round I go...
I remember talking to you and voicing pretty much what you have said here. I remember talking about women with more problems than I have going on to have more children. I don't remember you ever saying that you thought that I needed more faith, or that maybe I should just wait and see. I do remember you sitting by my bed encouraging me though. I still have that pretty flower pot in my room that was filled with candy that reminds me of what a good friend you were and are to me. I just want you to give yourself the same grace and compassion that you gave me. I think that you are kind of being hard and judgemental to yourself.
I to worry about the stress that you may be putting your body through and what that might do to your life expectancy. I want you to see your kids grow up and your grandkids, and see your great-grandkids. I didn't have any idea if this would take a toll in the long run or not, but I really want you to be healthy. You are too young to be old.
_____________________________
Please do not PM me about this message, discuss it at the water cooler, or include it in your church bulletins. If you have questions, please keep them to yourself. ~Kerrlaw
W2D1
292 more miles t
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RE: Hysterectomy at 28 - 5/28/2008 10:05:30 PM
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Jenny-Fair
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From: WA
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Donna, you know how conservative I am on these things but I really think it's a wise decision in your circumstances. God HAS done amazing, miraculous things with your reproductive organs already! But an end to the Endo is not one of those things. And combining it with the pain you experience when you are pregnant, it just makes plain sense to me. Plus, shortly after birth seems to be the best time to take care of it in one fell swoop with the least chance for later consequences. If you do not do it shortly after Jellybean is born, we don't know that you will ever be pregnant again anyway, and so it could only get worse and more difficult to take care of.
As for 'going crazy'...my MIL had a bad psychological reaction to a hysterectomy that she had when she was 20 or so. She felt that she was no longer a woman, and then she proceeded to attempt to prove her female worthiness in  ways. This ultimately killed her. HOWEVER, she did not know the Lord, she had never had kids, and I think she felt in those days you didn't talk about it. None of these things apply to you. And frankly, with all you have been through, I can't imagine you being worse off! LOL
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Ziva: It is possible. I do not remember all their names.
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my soldier! 
Just to be able to talk it out here, and others to think of things maybe I haven't thought of so I have a good list of questions for my doctor in 4 weeks. Mostly mental and emotional preparation though...it helps me to talk about it, but that's not so easy to do IRL. 
Proud Moo Club Member 
