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Lupron not working...can't even do fresh cycle. Need advice/thoughts/encouragement?

February 8 2012 at 8:43 AM
MacRita  (no login)

 
I can't even believe it. I recall reading this happening to Seymo and couldn't believe it...must be one in a million, I thought...

Starting my very first DE cycle at SG and now the Lupron isn't successfully suppressing my completely useless ovaries after nearly 2 weeks. My FSH in my late 30s was in the 80s. I haven't had a period in over a year and now this (and its a useless attempt at ovulation, confirmed by other bloods). Can't move forward with a fresh transfer because it's a shared cycle and they can't hold up the other recipient (understandable). All doc can say is this is bizarre, he doesn't know why, but I have to keep taking it and retesting.

I'm full of anxiety now. They tell me my mock went well and I have no other issues. Since my reproductive system has done nothing but fail me for 4 years, why would I have hope? My DH keeps saying he has hope, but that hope was what kept me from moving to DE a year ago...and now i feel I've lost so much valuable time based on nonsense hope. All I can do is keep thinking the whole thing will fail, because that has been my history. If I have POF so early, and now my body won't cooperate here, what else is going to fail? And knowing that FETs have a lower success rate (looks like 52% v 36% at SG for vitrified), when I finally get to transfer the frozen embryos, why would I feel positive? I know DE isn't guaranteed, but I didn't think I would get clipped at the starting line.

--Does anyone know/has heard of lupron being ineffective long term on someone with my details? Did it cause damage?
--Does anyone know of anyone who has gone on to success despite this kind of thing?
--Presuming I can cycle at some point, and I had 2 frozen blasts, would you recommend transferring both? If they had been fresh, I would've done an eSet, since I'm learnign that for me what can go wrong will (ie, health risks to twins). Now I'm concerned even one "perfect" won't implant.

Any advice? I feel like throwing in the towel and I haven't even gotten to start.

I'm really struggling emotionally. I didn't anticipate this at all...failed transfers, I was sort of anticipating, but not self induced ones. Talking to social workers/therapists doesn't help.

 
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Melissa
(no login)

so so sorry...

February 8 2012, 9:16 AM 

Hi there, MacRita. First, let me say how sorry I am that I have been where you are. My cycle with my super donor was canceled in November for the same reason. Though I am still on the waiting list, I am not sure what my doc will do to try to suppress ovulation this next time around. I did not pass my mock cycle and ovulated through the Lupron, so for my actual cycle, they put me on daily Ganirelix. SO EXPENSIVE. But it didn't work for me, either. They have mentioned that they might try Depot Lupron next time for a month or longer to try to suppress me. Maybe you can ask your doctor about one of those two options?

I, too, had such feelings of confusion....my ovaries, who can NEVER seem to do their thing, went into super overdrive during the times when they were supposed to be quiet. Its so unbelievably frustrating.

I wish I had more answers for you. All I know is that my doctor was pretty flummoxed, and that I'm still pretty nervous about next time, too. I'm curious to see if others pop on here with any new ideas.

For the time being....I hope you can find a safe place to just feel your sadness and disappointment but that you can somehow find the strength you need to find peace in this journey.

Melissa

 
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Anonymous
(Login gemini67)

Re: Lupron not working...can't even do fresh cycle. Need advice/thoughts/encouragement?

February 8 2012, 9:17 AM 

So sorry to read about your predicament. I'm also in shared program @ SG starting my first DE cycle.. I started Lupron yesterday. ET scheduled for 3/8. I have been trying to prepare for anything and everything that could go wrong along the way. After reading your story, I realize there is no way to fully prepare. My thoughts are with you and all I can say is DON"T GIVE UP!!! Keep your eye on the prize and remember what has brought you to this point. I don't want to try and blow alot of sunshine up your a$$, cuz you probly don't want to hear it, but take and deep breath and remember why you are doing this! KEEP TRYING!!!! Go through all your emotions, don't deny yourself, then move forward. You don't want to have any regrets!

 
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MacRita
(no login)

@Melissa -- Does this mean we might never get to cycle?

February 8 2012, 10:05 AM 

You'll never get to cycle? And that our ovaries might never shut down properly? I thought I was technically in menopause, so don't understand this at all.

I'm beside myself.

 
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Denise
(no login)

Re: @Melissa -- Does this mean we might never get to cycle?

February 8 2012, 10:45 AM 

One idea to consider is freezing your embryos, then doing a(( natural FET)) according to your cycle when the embryos are transferred with only progesterone support..

 
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Melissa
(no login)

@MacRita and Denise

February 8 2012, 11:26 AM 

Yes, that was another option presented to us, to go ahead and make the embryos and then freeze them. Our clinic doesn't do vitrification, and so it didn't really seem worth it to us.

I really really hope it doesn't mean we can't cycle, MacRita. I really hope. But, like you and others have pointed out, I sometimes feel like there is literally no limit to the number of ways in which this can not work . It is so frustrating and scary how much control we do not have, and how much of this is out of everyone's (even the doctor's) control.

I have had to take a break from all of this to finish some academic work, which has been good and bad at the same time. It is nice not to be obsessing about every twinge, every blood draw, every phone call. I think that when I can focus more energy on this again, I will likely start calling some of the big names, like in San Diego, and just ask for some phone consults about their ideas about how to approach a case like ours. If I get that far, I will be sure to share it with all of you.

Melissa

 
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MacRita
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Thank you, Melissa.

February 8 2012, 11:50 AM 

Sending angry "shut down!" vibes to your ovaries. They have to knock it off at some point, right?

 
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MacRita
(no login)

To your point, Denise...opposite lupron effect?

February 8 2012, 11:52 AM 

I wonder if it's possible that the lupron is forcing my pituitary to work harder in opposition to it, as if it's still fighting that initial lupron surge that happens (I think) the first day or so you take it. After all, when you have high FSH, don't drugs that stim you for IVF cause FSH to go even higher (to no effect)?

I'm partially tempted to go off it and then retest, see what happens. But of course, I'm afraid to...

 
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Denise
(no login)

Re: To your point, Denise...opposite lupron effect?

February 8 2012, 11:55 AM 

I am just thinking a natural FET is best option for these concerns it would be my choice with these issues..Good Luck.

 
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MacRita
(no login)

that's my next conversation with the dr...thank you.

February 8 2012, 4:24 PM 


 
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Julie
(no login)

I don't have an answer for you but maybe a little hope (success ment)

February 8 2012, 11:24 AM 

I am so sorry -- I know you feel just crushed. I don't have any advice on what to do about your ovaries BUT I did want to make sure you knew my FET was successful at SG. My DD was the result of an FET of a tx of 2 6-day blasts. Oh gosh what a curve ball you have had thrown at you. THinking of you.

 
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MacRita
(no login)

Thank you. ((hugs)) I will meditate on that response.

February 8 2012, 11:48 AM 


 
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Leigh
(Login leigh74)

So sorry, MacRita..

February 8 2012, 1:03 PM 

This breaks my heart.. And as someone else with POF (FSH >150 at 37), I'm trying to understand how this is even possible?! Since I am also about to start Lupron for the first time, can you tell me how they know it's not working? By ultrasound or hormone levels or something else?

You're in my thoughts, and for what it's worth, I still feel like there MUST be a solution. Between the doctors and the women here, you will find a way to make this work. Try to keep the faith. (((hugs)))

Leigh

 
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MacRita
(no login)

Told it was rare! So don't worry too much...

February 8 2012, 4:21 PM 

Check out my post below to The Same Boat...that said, I did a lot of googling and didn't see a lot of women who busted through the lupron. Maybe others just don't post, but anyhow.

Also, what they do is check your progesterone (bloods) and ultrasound (ovary follicles, AFAIK). They have you do those about 7 days after taking lupron.

I wonder if you can start taking lupron earlier in your cycle so that you have more runway if you're doing a shared cycle where dates are pretty much fixed (so get on the wagon or your embryos get frozen). They build in a few days padding, I think, in case your lining is behind, or your ovaries decide to be obnoxious. It did not even cross my mind that mine would actually be a factor in getting pregnant.

Thanks for your kind words. God, I hope there aren't so many more huge bumps in the road in front of me (or any of us). I feel superstitious for even saying that.

 
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Mamaheart
(no login)

6 day blasts?

February 9 2012, 8:14 PM 

Barge to Julie;
I saw your post about the 6 days blasts -- I just had planned 5 day transfer delayed as none of the embies were in blast stage yet -- did that happen to you or did you clinic plan day 6 from the start? Information would be greatly appreciated, thank you.

 
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thesameboat
(Login thesameboat)

Barge to Mamaheart (success mentioned in passing)

February 11 2012, 2:52 AM 

I did 6 DE transfers. My successful cycle was a 6-day transfer (there were other changes made too, so I'm not attributing the success to this alone) because day 5 would have been on a holiday and the clinic was closed. You had better believe I was in a panic! happy.gif
All the best to you.

 
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Seymo
(Login Seymo)

That sucks

February 8 2012, 1:04 PM 

You're right - that happened to me too. I continued on the Lupron and finally my progestrone came down.

Here's the thing no one answered for me - if my progesterone was elevated as if I ovulated through the Lupron, why did the US taken at the same time as the blood draw show completely quiet ovaries with no evidence of ovulation? I posted that question on this board I believe several wrote that that didn't matter. It was the elevated progesterone that messes with the lining development. But still, why would progesterone become elevated if no ovulation took place?

That's not helpful really but that was my experience. (FYI - I have no known issues just DOR and shitty eggs, 4 failed OE IVFs, normal FSH last time it was checked, I just turned 43, boo hoo.)

What does SG plan to do for you? For me I was part of 2:1 shared and they waited for my progesterone to fall. But if that didn't happen within a certain period I think they would have cycled without me and I would have taken the frozens.

To your other questions, I always leaned toward a sET of a blast but I was forced into a 3 day transfer because of the holidays. I had a perfect 8 cell transferred, 1 8-cell, 1-6 cell and 1 5-cell to freeze. The fresh transfer was a BFN. And now I am in the 2ww for a day5 FET transfer of a poor quality blast and a morula. They never told me what happened with the last embryo. So for me I would definitely transfer two for FETs and a single embryo for fresh. But now that I have a failed cycle under my belt I may think differently next time.

Good luck. Don't let this freak yo out too much. Despite what they say, I think Lupron being ineffective is more common than is reported.


 
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MacRita
(no login)

My simple understanding...

February 8 2012, 4:13 PM 

Is that my pitiful ovaries made an attempt to ovulate. I didn't ask specifically, but the tech mentioned in passing that she saw follicles when she did my first ultrasound (I thought it was weird, but inconsequential, since, hey, I was on Lupron!). The progesterone messing with the lining is ultimately the most important thing, as I understand.

I'm in the same situation as you...2:1. They can't wait for me, though. Too late. Unless there's a miracle in the next couple days, and the donor stims late, I'm FET or nothing. It does give me heart that your progesterone eventually cooperated. I can only hope...

Thanks for your advice on FETs. If I have the choice, I'm pretty sure I would do more than one in my transfer. This experience has changed my thinking on eSet. I'm now more worried about this never working than I am about having twins.

And I think you're right about Lupron. If the FET fails, I go to donor 2, and if this happens again with Lupron, I will go ballistic. I still feel like it's way to coincidental that I suddenly am attempting to ovulate after 1 year of nothing, esp knowing that Lupron actually kicks your pituitary into overddrive for the first day or so (if I understand what I'm reading).

 
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Denise
(no login)

Success ment.

February 8 2012, 5:28 PM 

BTW I have three year old twins and they are best friends and so much fun just rough for first six months.

 
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thesameboat
(no login)

I'm so sorry. And I have a question.

February 8 2012, 1:38 PM 

Do most doctors prescribe Lupron for women who haven't had a period in a year? I thought in that case, no Lupron was necessary, that the intended mother would take birth control pills to get a period and then start the estradiol to build up a lining starting at the end of that period.

 
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