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MrsK914
LIF Infant
Member since 10/08 337 total posts
Name:
Stacey
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Not a good day...progress update
So I went for a consult today. Good news is my FSH is finally down to 9. Bad news...I have officially been diagnosed with POF (Pre-mature Ovarian failure). MD says that chances of me getting pregant are slim and that my most viable option will probably be a donor egg... which as I've learned, is SOOO expensive! 
We thought we had a follicle growing, but my estrogen levels started to decrease even though I am still on the Estrace.
We are still going to take some steps to attempt to get my follicles and eggs developed. The Estrace is now at its maxiumum, 2g, 3 times a day. Then followed by a round of Provera in 4 wks.
I am trying to be hopeful, but this is so hard. I was doing so good and now it feels like I have been smacked in the face. It can't be good if he has me going for a consult with the Donor Specialist already!
Is there anyone who has been diagnosed with POF or used a Donor? I could really use some advice.
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Posted 12/11/08 4:36 PM  |
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katiebell
Hoping, wishing, waiting....
Member since 8/06 1418 total posts
Name:
K
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Re: Not a good day...progress update
I don't know if my offical dx is POF but I have high FSH the lowest it was ever was 22. The RE let me do an IUI cycle and I did shots of follistim for 8 or 9 days, and I had one or two follies, but they weren't growing and my E2 wasn't rising but my LH was so they cancelled the cycle. They will do one more IUI cycle as soon as I get my period. Then my next and only other option is donor egg which like you said is expensive but my insurace cover some of it. I just need to know I tried everything I could with my own eggs before I move on to donor.
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| Posted 12/11/08 6:25 PM |
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BA2008
Need to find some hope!
Member since 2/08 2485 total posts
Name:
Beth -Ann
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Re: Not a good day...progress update
Well, I'm sort of in your boat. I'm in the middle of "I have no idea what to do syndrome". We are looking into DE and most likely will go in that direction in the coming year. Or we try one more time with my eggs?
I am 40, so you are probably younger than I but I think the emotions are the same. I think I'm younger in my mind, though my body has to keep reminding me that that isn't so.
I have been extensively looking into DE. You sort of need to morn for your eggs first. You will know when you are ready. I'm like 99% there in my head.
Let me know if you want to chat about it.
I think that when you have your baby, you wont care that it was DE (even though the idea feels horrible now). I have been looking at my friends kids, whom I love so much and I think...this could work. I didn't give birth to them and they are not even related to me.
Research and find some women who have been through it. Not one of them regrets it, in fact they are really truly happy.
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| Posted 12/11/08 6:41 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: Not a good day...progress update
My fsh was 14.9 when I did my first IVf cycle which was successful. I now have 2 week old twin boys who are healthy and happy
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| Posted 12/11/08 6:59 PM |
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MrsK914
LIF Infant
Member since 10/08 337 total posts
Name:
Stacey
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Re: Not a good day...progress update
Posted by katiebell
I don't know if my offical dx is POF but I have high FSH the lowest it was ever was 22. The RE let me do an IUI cycle and I did shots of follistim for 8 or 9 days, and I had one or two follies, but they weren't growing and my E2 wasn't rising but my LH was so they cancelled the cycle. They will do one more IUI cycle as soon as I get my period. Then my next and only other option is donor egg which like you said is expensive but my insurace cover some of it. I just need to know I tried everything I could with my own eggs before I move on to donor.
I totally understand about the knowing you tried everything with your own first. I feel the same way. My husband and I decided to TTC only 6 months ago, and its been a downward spiral ever since. We were fortunate enough to find out something was wrong within 4-6 wks of coming off BC and have been trying to diagnose and treat since. They have been monitoring my Bldwk for the last 8 weeks hoping to IUI, but I havent had any success. As a matter of fact, I had at temporary rise in my E2 which showed follies, but it was followed by a quick decline, and they basically disappeared.
Thank you for taking the time to share. Its somewhat "comforting" to know I am not the only one going through this.
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| Posted 12/11/08 9:47 PM |
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MrsK914
LIF Infant
Member since 10/08 337 total posts
Name:
Stacey
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Re: Not a good day...progress update
Posted by melijane
My fsh was 14.9 when I did my first IVf cycle which was successful. I now have 2 week old twin boys who are healthy and happy
Thank you for your encouraging story. Its helping me try to stay positive.
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| Posted 12/11/08 9:49 PM |
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MrsK914
LIF Infant
Member since 10/08 337 total posts
Name:
Stacey
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Re: Not a good day...progress update
Posted by BA2008
Well, I'm sort of in your boat. I'm in the middle of "I have no idea what to do syndrome". We are looking into DE and most likely will go in that direction in the coming year. Or we try one more time with my eggs?
I am 40, so you are probably younger than I but I think the emotions are the same. I think I'm younger in my mind, though my body has to keep reminding me that that isn't so.
I have been extensively looking into DE. You sort of need to morn for your eggs first. You will know when you are ready. I'm like 99% there in my head.
Let me know if you want to chat about it.
I think that when you have your baby, you wont care that it was DE (even though the idea feels horrible now). I have been looking at my friends kids, whom I love so much and I think...this could work. I didn't give birth to them and they are not even related to me.
Research and find some women who have been through it. Not one of them regrets it, in fact they are really truly happy.
I am the samy way with my nephew. Most other kids too. I love them, they are so much fun to be around and its amazing watching them grow and develope. Thats what upsets me most.
I know that if it comes to DE, I wont regret the choice. I am fortunate enough that my sister is a good canidate for a Donator and is willing to donate eggs if necessary. It will be weird but it would give me the most genetically matched child to me as possible. My RE said its always good when family members can help out.
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| Posted 12/11/08 9:52 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: Not a good day...progress update
Posted by MrsK914
Posted by melijane
My fsh was 14.9 when I did my first IVf cycle which was successful. I now have 2 week old twin boys who are healthy and happy
Thank you for your encouraging story. Its helping me try to stay positive.
I'm glad-also just so you know-high fsh does NOT mean you will not be successful at IVF. You may not stim as well as someone with low fsh but thats it. My results were:
8 retrieved 5 made it to day 3, did a 3 day transfer with a 7 and 9 cell embies and results as above. i wish you luck. I would definitely try on my own before doing DE
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| Posted 12/12/08 12:25 AM |
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gsgirls1
LIF Toddler
Member since 11/08 421 total posts
Name:
St Gerard and God, thank you for our blessing
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Re: Not a good day...progress update
My last FSH was 42 so my new RE will try natural IUI. I feel AF coming, so I am not too hopeful. Funny thing, they found a follie growing on my wedding anniversary and 3 days latter I did an IUI natural. (2 days before previous doc. only said DE). I was so happy and thought this would work, but I don't think it did....lower back cramping tells me AF is sneaking in.
Anyway, I am having more of a problem knowing my baby wouldn't be a mix of DH and me. I am not opposed to the idea of anyone doing DE, but it does take a new mind set for yourself. I love other's children, too, but always dreamed of my DH and my baby.
If it wasn't for the expense, I would have probaby done it, but I have great insurance and they pay for IUI and IVF in full. So, we decided to try our own "stuff" for a while. I am 45 and just waited too long.
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| Posted 12/12/08 7:02 AM |
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CellarDweller
LIF Adult
Member since 11/05 1562 total posts
Name:
Jennifer
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Re: Not a good day...progress update
 I don't have any advice re: DE but, as you know, the RE I was seeing told me my only option was DE because of my high FSH. That news knocks you for a loop.
You certainly aren't alone in this! 
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| Posted 12/12/08 7:32 AM |
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mom2mgn
Love my family
Member since 2/08 2267 total posts
Name:
Christine
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Re: Not a good day...progress update
I'm so sorry you are going through this. I suggest you go for a 2nd opinion. Don't give up hope. Different RE's have different views on things. Also, an FSH of 9 isn't that high. There are things you can try to get it lower. Is there another reason your doctor thinks you have POF??
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| Posted 12/12/08 9:34 AM |
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BA2008
Need to find some hope!
Member since 2/08 2485 total posts
Name:
Beth -Ann
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Re: Not a good day...progress update
Posted by MrsK914
I am the samy way with my nephew. Most other kids too. I love them, they are so much fun to be around and its amazing watching them grow and develope. Thats what upsets me most.
I know that if it comes to DE, I wont regret the choice. I am fortunate enough that my sister is a good canidate for a Donator and is willing to donate eggs if necessary. It will be weird but it would give me the most genetically matched child to me as possible. My RE said its always good when family members can help out.
I just have a few questions for you. How old are you? what RE are you seeing? How high was your highest FSH? Maybe with more info we can all share a little bit more with you.
Though I will say you are lucky to have a sister who would be your donor. That would make a world of difference for me (same gene pool).
Cornell has been researching (for a while now) on something where they take the donor egg and your egg and pull out your nucleus (that has your gene pool in it) and put it in the donor egg. I wish they were doing that now. Oh well...timing is everything.
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| Posted 12/12/08 11:41 AM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Not a good day...progress update
My FSH was 18.2 at first. Acupuncture, wheatgrass and a better diet got me down to 8.7. I'm considered high though and I'm 41 so that matters more.
North Shore told me that I should consider donor eggs.
I was devastated. I went to Cornell and they didn't suggest it at all. They have an older clientele. They have protocols and procedures for women who are poor responders.
As far as DE..I will consider it only after I have failed with my own. I'm just starting out and haven't cycled yet, but this is what I know.
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| Posted 12/12/08 11:57 AM |
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leighdvm
My golden boys!
Member since 3/06 4419 total posts
Name:
Michele
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Re: Not a good day...progress update
My RE said I had ovarian dysfunction also. My first round of IVF, there were NO eggs in my follicles when I went for my retrieval. (first time he ever saw that, lucky me)
My second round, at the max dose of Follistim, I only had about 3 follies....he said do the Follistim one more day and somehow, I had 8-10 follies overnight. RE was still not optimistic that it would work since I had ovarian dysfunction. Here I am, PG with twins.......
I did acupuncture, quit smoking, took supplements, etc. Everything I possibly could.
Please don't give up hope yet......
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| Posted 12/12/08 12:35 PM |
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MrsK914
LIF Infant
Member since 10/08 337 total posts
Name:
Stacey
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Re: Not a good day...progress update
Posted by BA2008
Posted by MrsK914
I am the samy way with my nephew. Most other kids too. I love them, they are so much fun to be around and its amazing watching them grow and develope. Thats what upsets me most.
I know that if it comes to DE, I wont regret the choice. I am fortunate enough that my sister is a good canidate for a Donator and is willing to donate eggs if necessary. It will be weird but it would give me the most genetically matched child to me as possible. My RE said its always good when family members can help out.
I just have a few questions for you. How old are you? what RE are you seeing? How high was your highest FSH? Maybe with more info we can all share a little bit more with you.
Though I will say you are lucky to have a sister who would be your donor. That would make a world of difference for me (same gene pool).
Cornell has been researching (for a while now) on something where they take the donor egg and your egg and pull out your nucleus (that has your gene pool in it) and put it in the donor egg. I wish they were doing that now. Oh well...timing is everything.
Thank you ALL for getting back to me. Let me explain a few things and answer a few of your questions. I am 26, seeing Dr. San Roman (RSofLI). My highest FSH was 71. I immediately started to experience hot flashes, mood swings, and headaches after coming off BC in June. Also, no AF since. No previous history of menstrual problems.
The Estrace is what has lowered my FSH to 9. My E2 is currently around 120 after being 12(in August). At one point my E2 peaked at 193 and they were seeing a follie, but then it started to decrease. They have an extremely difficult time seeing my ovaries in sonos, especially on the right side.
So that is basically where I am at. Now that my FSH is under control, he up'ed the Estrace hoping to restimulate my ovaries, they way we saw briefly a few weeks ago. Who knows if it will work. If it does, we will IUI. If not, plan B...donor eggs. I have given it thought and I am going to get a second opinion in the meantime. Its not that I think he is wrong, I just want to make sure I am definately doing everything possible on my own before resorting to a donor.
Thank you all for you kind words and well wishes. I really hope that this stimulation will work. But I am trying to mentally and emotionally prepare for the fact that it might not.
Message edited 12/12/2008 5:10:22 PM.
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| Posted 12/12/08 5:09 PM |
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BA2008
Need to find some hope!
Member since 2/08 2485 total posts
Name:
Beth -Ann
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Re: Not a good day...progress update
Ah...now we got the whole picture. OK there are definitely some things you can look into. Cornell deals with your issue but they don't believe in immune issues or bacterial issues (they do test for bacterial issues but there are other tests out there that they don't test for). And I think it is possible one of those things could possibly be your problem. I would also check out SIRM (Dr. Braverman on LI) for immune issues. And there is also another Doc, Dr. Toth (a little controversial), but he deals with Bacterial issues. I do not know what types of testing RSof NY does before IVF b/c I left them b/f I got to that point, but I know they didn't do extensive testing because when I went to RMA they did more testing and when I switched to Cornell they did more testing (they all used my previous testing though, which was good) . I was 39 at RS of NY and they were wasting my time doing a zillion clomid IUI cycles. And it turns out b/c of my uterus problem I should never have been put on clomid to begin with.
Anyway, it doesn't hurt to have a consult or two to get different RE opinions before you decide what to do.
Best of luck to you. I'm here if you want to chat ever.
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| Posted 12/13/08 3:05 PM |
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