Depressing Second Opinion Appt yesterday- need support (loss/DE ment)

Depressing Second Opinion Appt yesterday- need support (loss/DE ment)

KerriA
KerriA

May 6th, 2011, 3:36 pm #1

I was on depo provera and then Lybrel for birth control for a very long time because of those drugs, I did not have a period from 1995- the fall of 2009. Once my period resumed, at 35, I decided to begin TTC on my own with DS. Jan 2010, I clocked in with a d4 FSH of 27. I then had 4 miserable IUI cycles where my 7 dpo P4 was only 4. When my d4 FSH was rechecked in June 2010, it was 11.3 with e2 45. After these cycles, 7 dpo was always above 20 and on cycle 7, I conceived. Unfortunately, my baby girl had a fatal chromosomal disorder, and I lost her at 17wks in October. Jan 2011, I started trying again with no luck so far. The last 2 cycles my follicles fizzled out after stims so I am currently doing a natural cycle or 2 to give my body a break before going back to stims in the summer, hopefully. I just had IUI's on Mon and Tues of this week after getting +opk and a peak on the cle.arblue fert.lity monitor.

My present RE has been fairly supportive and is at the point where he just lets me do what I want, but I can tell that he's not very optimistic - to the point where I dread the beginning of each cycle. So, I decided to check out another RE to see if there was any other knowledge that could be offered. The new RE is one a friend of mine who had highish FSH (16) just bad boy/girl twins after IVF with this doctor. He was very thorough and did an ultrasound (3dpo, cd19), where we saw 5-6 antral follicles total for both sides. After reviewing everything, he basically told me my chances are dismal and he would recommend DE. Now, I know this is the canned answer and really I'm not surprised by it, but I found myself to be very depressed by it. I guess I was hoping (wrongly, I know) that he would say it was still worth a shot. So, I guess I'm looking for a little moral support if you all have any to spare.

Also, on the ultrasound he saw a tiny cyst or something in endometrium. Has anyone heard of this before? As far as I know, this was the first time something like that has been seen on my ultrasound, but his ultrasound machine seemed much better than my current RE's. He didn't know what to make of it.

thanks for listening ladies

p.s. he did recommend CoQ10 - says he puts it in his poor responder protocols. I told him I was taking it and he asked where I learned abou tit. - I think he said 300mg 2x a day.
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maureen
maureen

May 6th, 2011, 5:46 pm #2

KerriA,

It's tough when you know your odds aren't the best, but that you want to give it the best go with your OE and the doctors poo poo it. Really, if this was a try at giving you the ability to walk, would they just show you the door and say not try? I respect DE as an option, but if you still want another OE try, then why can't they give us that chance?

I think we need to know our odds going into it, but when we know, we really don't need to have DE preached to us to the point where they act like used car salesmen not even coming up for air during the pitch. What other doctors besides RE's act like this? I now start the conversation with how I know my odds are low, and I'm not looking for DE, and ask what they have. To me it's like trying to sell me a boat when I'm car shopping. My DH even stopped the runaway DE speach by bluting out that it was against my religion. ha! That doctor would NOT listen to us and was totally unwilling to try ivf with us. He was a stats jacka$$. It's really disheartening to learn how many doctors are just into making money and not really helping people.

This RE doesn't sound like the one for you. I've learned that it's best just to move on and than to fight them. Put together your next plan of action. That helps me raise my spirits.

Your antral count looks great. I'm not sure about the cyst on the endometrium. I had a fibriod one cycle, but it cleared up on it's own.

Hugs.
Maureen
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MargieD
MargieD

May 6th, 2011, 6:09 pm #3

I was on depo provera and then Lybrel for birth control for a very long time because of those drugs, I did not have a period from 1995- the fall of 2009. Once my period resumed, at 35, I decided to begin TTC on my own with DS. Jan 2010, I clocked in with a d4 FSH of 27. I then had 4 miserable IUI cycles where my 7 dpo P4 was only 4. When my d4 FSH was rechecked in June 2010, it was 11.3 with e2 45. After these cycles, 7 dpo was always above 20 and on cycle 7, I conceived. Unfortunately, my baby girl had a fatal chromosomal disorder, and I lost her at 17wks in October. Jan 2011, I started trying again with no luck so far. The last 2 cycles my follicles fizzled out after stims so I am currently doing a natural cycle or 2 to give my body a break before going back to stims in the summer, hopefully. I just had IUI's on Mon and Tues of this week after getting +opk and a peak on the cle.arblue fert.lity monitor.

My present RE has been fairly supportive and is at the point where he just lets me do what I want, but I can tell that he's not very optimistic - to the point where I dread the beginning of each cycle. So, I decided to check out another RE to see if there was any other knowledge that could be offered. The new RE is one a friend of mine who had highish FSH (16) just bad boy/girl twins after IVF with this doctor. He was very thorough and did an ultrasound (3dpo, cd19), where we saw 5-6 antral follicles total for both sides. After reviewing everything, he basically told me my chances are dismal and he would recommend DE. Now, I know this is the canned answer and really I'm not surprised by it, but I found myself to be very depressed by it. I guess I was hoping (wrongly, I know) that he would say it was still worth a shot. So, I guess I'm looking for a little moral support if you all have any to spare.

Also, on the ultrasound he saw a tiny cyst or something in endometrium. Has anyone heard of this before? As far as I know, this was the first time something like that has been seen on my ultrasound, but his ultrasound machine seemed much better than my current RE's. He didn't know what to make of it.

thanks for listening ladies

p.s. he did recommend CoQ10 - says he puts it in his poor responder protocols. I told him I was taking it and he asked where I learned abou tit. - I think he said 300mg 2x a day.
I've been on this board for several months, learning a lot about High FSH and all. Recently, I've decided to learn about the "normal" reproductive system. In a NORMAL female, she usually produces ONE egg out of so many follicles. Yes, they start CD1 with so many follicles, but after so many days, (usually) ONE follicle becomes the lead/dominant follicle and that follicle usually has an egg. 99.999% (maybe this is an exaggeration - smile) of all women get pregnant this way.

So...if normal FSH women produce follicles with an egg or two per cycle on their own is wonderful, then why are our chances for conceiving "dismal" if we can't produce more than one or two per month???? What makes us High FSHers different? Maybe some of us are having trouble finding that mature egg? Maybe some of us don't release like we should? Maybe some of us have MF along with High FSH? Maybe our hormones that the REs are not monitoring are so out of whack? Maybe our follicles hate stims?? Maybe...I don't know...

If you have 5-6 follicles per month with one lead follicle that is producing or can produce a mature egg with assistance, why can't you get pregnant with OE?

I apologize if I am dumb about all of this. I have been thinking too much about all of this. I've been wondering if the whole RE business is to produce AS MANY EGGS per stimming cycle when nature intended for us women to produce only ONE or TWO good ones per cycle. Is my train of thought making any sense??

Maybe working with Dr. Check has thwarted my complete understanding of the reproductive system!

Screw the guy...find someone who knows what being an RE is really about!
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Joined: September 22nd, 2009, 7:19 pm

May 6th, 2011, 6:28 pm #4

I was on depo provera and then Lybrel for birth control for a very long time because of those drugs, I did not have a period from 1995- the fall of 2009. Once my period resumed, at 35, I decided to begin TTC on my own with DS. Jan 2010, I clocked in with a d4 FSH of 27. I then had 4 miserable IUI cycles where my 7 dpo P4 was only 4. When my d4 FSH was rechecked in June 2010, it was 11.3 with e2 45. After these cycles, 7 dpo was always above 20 and on cycle 7, I conceived. Unfortunately, my baby girl had a fatal chromosomal disorder, and I lost her at 17wks in October. Jan 2011, I started trying again with no luck so far. The last 2 cycles my follicles fizzled out after stims so I am currently doing a natural cycle or 2 to give my body a break before going back to stims in the summer, hopefully. I just had IUI's on Mon and Tues of this week after getting +opk and a peak on the cle.arblue fert.lity monitor.

My present RE has been fairly supportive and is at the point where he just lets me do what I want, but I can tell that he's not very optimistic - to the point where I dread the beginning of each cycle. So, I decided to check out another RE to see if there was any other knowledge that could be offered. The new RE is one a friend of mine who had highish FSH (16) just bad boy/girl twins after IVF with this doctor. He was very thorough and did an ultrasound (3dpo, cd19), where we saw 5-6 antral follicles total for both sides. After reviewing everything, he basically told me my chances are dismal and he would recommend DE. Now, I know this is the canned answer and really I'm not surprised by it, but I found myself to be very depressed by it. I guess I was hoping (wrongly, I know) that he would say it was still worth a shot. So, I guess I'm looking for a little moral support if you all have any to spare.

Also, on the ultrasound he saw a tiny cyst or something in endometrium. Has anyone heard of this before? As far as I know, this was the first time something like that has been seen on my ultrasound, but his ultrasound machine seemed much better than my current RE's. He didn't know what to make of it.

thanks for listening ladies

p.s. he did recommend CoQ10 - says he puts it in his poor responder protocols. I told him I was taking it and he asked where I learned abou tit. - I think he said 300mg 2x a day.
by my RE#2. I saw him when I was 40, with one ovary (other surgically removed several years due to an endometrial cyst), hashimoto's and an fsh over 10. He said ivf wasn't worth it and that it was time we started looking into DE or adoption.

I was absolutely devasted. I literally couldn't eat for a week and dropped 4 lbs in a few days. I cried constantly, even at work. It was horrible. Then I got googling, found my way here and starting getting mad. I did a bunch of research and found the best RE that I could for my situation.

Less than a year after that appt I was blessed to get pg naturally with my now one year old son. In between I had two failed ivf's and was prepping for my third when I got pg.

Looking back now, I realize that RE didn't treat many women like me. He didn't know how to treat me, so he basically pushed me away. So many of these doctors can see easier patients. They don't have to treat the tough cases so they tell us we don't have a chance. I don't think that is true at all, and we shouldn't be listening to them.

Only you can decide what is an appropriate plan for you and your family. I recognize that I was lucky. I did have a long term outlook - I was prepared to go through 4 ivf cycles, and if that didn't work, I was going to look into DE. That helped give me the strength to get through the long slog.

If he doesn't treat high fsh women on a daily basis, then he's not an expert. Just being a fertility doctor does not make him special. I know it's a hard road, and it can seem even harder when someone who you think knows what they are talking about says hard things. But that doesn't make him right. My crappy RE was wrong, I bet yours is too.
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Sara H.
Sara H.

May 6th, 2011, 9:15 pm #5

I've been on this board for several months, learning a lot about High FSH and all. Recently, I've decided to learn about the "normal" reproductive system. In a NORMAL female, she usually produces ONE egg out of so many follicles. Yes, they start CD1 with so many follicles, but after so many days, (usually) ONE follicle becomes the lead/dominant follicle and that follicle usually has an egg. 99.999% (maybe this is an exaggeration - smile) of all women get pregnant this way.

So...if normal FSH women produce follicles with an egg or two per cycle on their own is wonderful, then why are our chances for conceiving "dismal" if we can't produce more than one or two per month???? What makes us High FSHers different? Maybe some of us are having trouble finding that mature egg? Maybe some of us don't release like we should? Maybe some of us have MF along with High FSH? Maybe our hormones that the REs are not monitoring are so out of whack? Maybe our follicles hate stims?? Maybe...I don't know...

If you have 5-6 follicles per month with one lead follicle that is producing or can produce a mature egg with assistance, why can't you get pregnant with OE?

I apologize if I am dumb about all of this. I have been thinking too much about all of this. I've been wondering if the whole RE business is to produce AS MANY EGGS per stimming cycle when nature intended for us women to produce only ONE or TWO good ones per cycle. Is my train of thought making any sense??

Maybe working with Dr. Check has thwarted my complete understanding of the reproductive system!

Screw the guy...find someone who knows what being an RE is really about!
and adding in what Dr. Check said yesterday at my appointment:

You, normally, have a bunch of egg-letts starting out. Then, the body picks the best one and makes it the dominant. So, with high FSH, if you only have a few egg-letts, your best is far from your best when there are tons. See what I mean?

Also, and I was not totally clear on this part, if your system is swimming in FSH your receptors are basically full, so having the egg implant is much harder.

All in all I totally know what you are saying and I agree but this is what I thought I understood.

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Mrs. A
Mrs. A

May 7th, 2011, 12:48 am #6

I was on depo provera and then Lybrel for birth control for a very long time because of those drugs, I did not have a period from 1995- the fall of 2009. Once my period resumed, at 35, I decided to begin TTC on my own with DS. Jan 2010, I clocked in with a d4 FSH of 27. I then had 4 miserable IUI cycles where my 7 dpo P4 was only 4. When my d4 FSH was rechecked in June 2010, it was 11.3 with e2 45. After these cycles, 7 dpo was always above 20 and on cycle 7, I conceived. Unfortunately, my baby girl had a fatal chromosomal disorder, and I lost her at 17wks in October. Jan 2011, I started trying again with no luck so far. The last 2 cycles my follicles fizzled out after stims so I am currently doing a natural cycle or 2 to give my body a break before going back to stims in the summer, hopefully. I just had IUI's on Mon and Tues of this week after getting +opk and a peak on the cle.arblue fert.lity monitor.

My present RE has been fairly supportive and is at the point where he just lets me do what I want, but I can tell that he's not very optimistic - to the point where I dread the beginning of each cycle. So, I decided to check out another RE to see if there was any other knowledge that could be offered. The new RE is one a friend of mine who had highish FSH (16) just bad boy/girl twins after IVF with this doctor. He was very thorough and did an ultrasound (3dpo, cd19), where we saw 5-6 antral follicles total for both sides. After reviewing everything, he basically told me my chances are dismal and he would recommend DE. Now, I know this is the canned answer and really I'm not surprised by it, but I found myself to be very depressed by it. I guess I was hoping (wrongly, I know) that he would say it was still worth a shot. So, I guess I'm looking for a little moral support if you all have any to spare.

Also, on the ultrasound he saw a tiny cyst or something in endometrium. Has anyone heard of this before? As far as I know, this was the first time something like that has been seen on my ultrasound, but his ultrasound machine seemed much better than my current RE's. He didn't know what to make of it.

thanks for listening ladies

p.s. he did recommend CoQ10 - says he puts it in his poor responder protocols. I told him I was taking it and he asked where I learned abou tit. - I think he said 300mg 2x a day.
you're in a 2WW. Remain hopeful that maybe you won't ever have to lay eyes on another RE again!

But in the case that you do (let's hope really hard for otherwise!) what I would do is call the RE office back and request a callback with the RE. When he calls tell him you've had a few days to digest the appointment content. Let him know you appreciate his candor about your prospects and his recommendation for success (humor him here), but that you realized after walking out that you were missing information. Specifically, you want to know how he would treat you using OE, and OE only. You understand the position/argument for DE but where you are right now is trying ONLY with OE. And as such, you'd like to know how he would handle your situation (DE aside) given your stats. He's an RE and he needs to be made to put his little brain to work! It may turn out that he doesn't want to treat you at all but he shouldn't be let off scott-free by telling you DE. He shouldn't be allowed to cut you (or anyone for that matter) at the knees without first trying some principle of medicine that does NOT involve DE!

As for the cyst on the endometrium...was it a cyst or a fibroid? That's fine if he can't make out exactly what it is with a regular u/s but he should be recommending something to figure out what it is. A SIS? A hysteroscopy? Maybe this is something that could hamper implantation? Could it be scarring or something like that leftover from your loss? Seems like it should be worth exploring after this 2WW is over. Maybe you don't even bother with an RE for this and just go back to your OB. Doesn't sound like it should be coded as something for infertility.

P.S. - as a sidenote, did he by chance note the pattern of your lining considering your were 3DPO? I'd call the office back and see if it was noted in your chart.
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Joined: November 11th, 2010, 2:23 am

May 7th, 2011, 4:54 am #7

I don't understand this RE- how is an AFC of 5-6 bad? my RE is working with me and my AFC is never more than 2! You need to find a more supportive doc - where are you located?

gisg
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KerriA
KerriA

May 7th, 2011, 1:58 pm #8

KerriA,

It's tough when you know your odds aren't the best, but that you want to give it the best go with your OE and the doctors poo poo it. Really, if this was a try at giving you the ability to walk, would they just show you the door and say not try? I respect DE as an option, but if you still want another OE try, then why can't they give us that chance?

I think we need to know our odds going into it, but when we know, we really don't need to have DE preached to us to the point where they act like used car salesmen not even coming up for air during the pitch. What other doctors besides RE's act like this? I now start the conversation with how I know my odds are low, and I'm not looking for DE, and ask what they have. To me it's like trying to sell me a boat when I'm car shopping. My DH even stopped the runaway DE speach by bluting out that it was against my religion. ha! That doctor would NOT listen to us and was totally unwilling to try ivf with us. He was a stats jacka$$. It's really disheartening to learn how many doctors are just into making money and not really helping people.

This RE doesn't sound like the one for you. I've learned that it's best just to move on and than to fight them. Put together your next plan of action. That helps me raise my spirits.

Your antral count looks great. I'm not sure about the cyst on the endometrium. I had a fibriod one cycle, but it cleared up on it's own.

Hugs.
Maureen
He said if I wanted he would try IVF with my OE but DE was the way to go, and he wanted me to have my d3 labs done again as well as AMH before saying what he thought the odds were.

My expectations were that he would preach the DE party line, but my hopes were he would say "of course you still have a shot - your ovulating - your body is doing all the things it should - it may take longer but it's worth a shot." I was seeking out a second opinion for a couple of reasons - 1) was due diligence just to make sure there wasn't some better treatment out there (with my religious reading of this board, I was fairly certain there was nothing else magical out there for treatment) and 2) I've been through 10 IUI cycles (1 cancelled) with my current RE and at this point, I know he is totally humoring me and also thinks I should go the donor route, but he is letting me be on the path I need to be on - it's just I can see the frustration and pity in the faces and voices of the RE and his support staff. I think they really do care about me as a person, but it is getting hard trying to always put on such a brave face to counter their consoling looks. So, I thought maybe a blank slate would be good. I feel like I need someone who can be just a little positive and say things like "well, the last cycle didn't work but maybe we'll catch the egg this month" - especially since they know I am well aware of what my prognosis is.

Yeah, I don't think this is the RE for me - even if my friend found success with him.

thanks for your support, Maureen!
kerri
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KerriA
KerriA

May 7th, 2011, 2:05 pm #9

I've been on this board for several months, learning a lot about High FSH and all. Recently, I've decided to learn about the "normal" reproductive system. In a NORMAL female, she usually produces ONE egg out of so many follicles. Yes, they start CD1 with so many follicles, but after so many days, (usually) ONE follicle becomes the lead/dominant follicle and that follicle usually has an egg. 99.999% (maybe this is an exaggeration - smile) of all women get pregnant this way.

So...if normal FSH women produce follicles with an egg or two per cycle on their own is wonderful, then why are our chances for conceiving "dismal" if we can't produce more than one or two per month???? What makes us High FSHers different? Maybe some of us are having trouble finding that mature egg? Maybe some of us don't release like we should? Maybe some of us have MF along with High FSH? Maybe our hormones that the REs are not monitoring are so out of whack? Maybe our follicles hate stims?? Maybe...I don't know...

If you have 5-6 follicles per month with one lead follicle that is producing or can produce a mature egg with assistance, why can't you get pregnant with OE?

I apologize if I am dumb about all of this. I have been thinking too much about all of this. I've been wondering if the whole RE business is to produce AS MANY EGGS per stimming cycle when nature intended for us women to produce only ONE or TWO good ones per cycle. Is my train of thought making any sense??

Maybe working with Dr. Check has thwarted my complete understanding of the reproductive system!

Screw the guy...find someone who knows what being an RE is really about!
you raise the point I was hoping this RE would embrace - I am still producing eggs and still ovulating so shouldn't I have a shot.

I also think that not all "high FSH" ladies are the same. So of us seem to have high FSH and respond really well to stims and find success quickly. Others don't have as high FSH and don't stim as well but what they have is good quality. Some respond well to stims but are still trying to find the best cocktail to generate good embyros - so when the RE looks at that one number and says - you should go the DE route seems a bit hasty. Also, I guess since I had been pregnant a few months ago I thought maybe that would account for something. His response was that my chances of miscarriage due to aneuploidy was much higher because of high FSH. My baby had triploidy, which is thought to be one of the most common causes of miscarriage and age does not alter your chances conceiving a triploidy baby - they are the same for all but this RE was like " well, of course, your baby had a chromosomal issue - you have high FSH." The whole meeting just made me feel bad.

thanks for your support!
kerri
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KerriA
KerriA

May 7th, 2011, 2:07 pm #10

and adding in what Dr. Check said yesterday at my appointment:

You, normally, have a bunch of egg-letts starting out. Then, the body picks the best one and makes it the dominant. So, with high FSH, if you only have a few egg-letts, your best is far from your best when there are tons. See what I mean?

Also, and I was not totally clear on this part, if your system is swimming in FSH your receptors are basically full, so having the egg implant is much harder.

All in all I totally know what you are saying and I agree but this is what I thought I understood.
and thanks for posting your Check experience.
best,
kerri
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