Craptastic diagnosis

Sorry it took me a couple days to write this post. My baby sister is visiting for the summer (yay!), and this weekend her boyfriend came to visit. It was my first time meeting him, so I was pretty busy showing them around town.

Anyway, we had the WTF appointment with Dr. Y on Friday morning. (Thanks to my bloggy friends for this term, which seems like a perfect description for the appointment after a failed cycle…) It was not a cheerful conversation. It basically cemented my assessment that diminished ovarian reserve is a craptastic diagnosis. Some highlights:

  • Dr. Y was careful to point out that I am “not through menopause yet”, and therefore there is always a probability (however miniscule) that I could get pregnant naturally. So one option is to stick with timed intercourse + prayer. (In support of this option, he mentioned a patient like me who got pregnant naturally after quitting treatment…then miscarried. Not exactly a ringing endorsement…)
  • On the other end of the spectrum, Dr. Y pointed out that none of the tests to date has shown any problems with my uterus, so we expect a high probability of success from IVF with donor eggs. In that case, I would have to change care providers, because Kaiser doesn’t do third-party reproduction…
  • He was open to the idea of us doing IVF one more time with my eggs, but wanted to be very clear that he doesn’t expect a dramatic difference in outcome – we would be hoping for one quality embryo, not five. And we would want to go into it with a plan for what we would do in the (likely) event that it fails again. He does not support the idea of doing IVF bunches more times, as he said there would be a point of diminishing returns, and he doesn’t want to subject my body to all those drugs over and over if it’s not likely to yield the end result that we want.
  • Dr. Y did not recommend trying a different protocol. He is convinced that the antagonist protocol (with ganirelix/Antagon) is the best option for me. In particular, I had asked about a microflare Lupron protocol, but he felt that the ganirelix “worked” in the sense that it prevented premature ovulation, and that – as a rule – it suppresses my ovaries the least, making it the best choice for a poor responder like me.
  • Dr. Y was supportive of trying what he called “soft science” approaches to improving egg quality – including eating a high antioxidant diet, taking all the recommended supplements, and doing acupuncture – prior to trying IVF#2. He doesn’t necessarily think it will help, but he thinks it can’t hurt. He suggested doing it “all the way”, not half-heartedly, for 3 months, “living like a monk”. I think his rationale was that if I did absolutely everything I could think of, then I would be at peace with moving on with donor eggs (or adoption, or child-free living) if IVF#2 fails. (He did, however, mention that he had a DOR patient like me, who had a failed cycle, then did all the supplements, etc. for 3 months, got one embryo from IVF #2, which implanted and she is now in her 3rd trimester…)
  • We also learned that the embryologist had judged my three eggs as being of “very poor quality”. I think this is another reason for Dr. Y’s pessimism.

Here are some stats from the SART database to help illustrate why DOR is such a crappy diagnosis. For women up to the age of 40, a DOR diagnosis correlates with the worst odds of success from IVF:

SART Fresh IVF cycles Percentage of cycles resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

40.1

31.9

21.6

12.2

4.2

ovulatory dysfunction

43.3

36.9

28.3

14.1

3.2

male factor

43.2

36.7

25.6

16.6

5.2

unknown

42.5

33.4

24.7

14.1

7.1

female & male factor

39.5

30.7

20.4

11

5.1

tubal factor

39.2

31.5

20.7

14.6

3.8

endometriosis

38.9

29.6

24.6

13.2

4.7

other

36.5

30.8

21.9

13.2

4.7

multiple female factors

35.2

27.2

18.9

10.4

2.6

uterine factor

33.6

33.8

19.3

15.4

5.9

DOR

27.5

24.2

17.8

11.1

3.8

On the upside, if we ever happen to get any decent frozen embryos, the stats shift in our favor, at least given my relatively young age:

SART FET cycles Percentage of transfers resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

39.3

35.7

30.3

24.5

16.5

ovulatory dysfunction

42.1

38.4

34.5

19.4

33.3

DOR

40.8

32.6

25.9

23.3

13.1

unknown

40.8

37.3

33.1

28.7

21.3

male factor

39.9

35.6

29.3

28.1

16.7

other

39.5

37.3

34.1

31.8

16

female & male factor

38.6

35.7

29.3

21.7

17

endometriosis

37.7

33.6

32.7

28.9

3 of 12

tubal factor

37.2

35.4

24.8

12.5

28.3

mutliple female factors

35.3

33.3

31.2

26.3

18.6

uterine factor

31.8

32

31.5

17.9

17.4

Now, we both still really like Dr. Y, but I am somewhat concerned about blindly repeating IVF with someone who (I think) doesn’t believe it will work. So on Friday afternoon, I called the Colorado Center for Reproductive Medicine (CCRM) and scheduled a phone consultation with Dr. Schoolcraft. The earliest phone consultation he had available was September 16, but I figure that’s fine, since I need to take supplements for at least 3 months before trying IVF again. I can see what Dr. Schoolcraft says, and then decide whether to try again here one more time…or try at CCRM.

Why CCRM?

I have a good friend, N, who did IVF at CCRM, which is how I knew about it. (She didn’t have DOR, but had three failed cycles at her local clinic, prior to the successful one at CCRM.) I also read (and liked) Dr. Schoolcraft’s book. While my local IVF clinic is very good (maybe the best in California), CCRM is on another level. They perform 4.5 times as many IVF cycles each year as my local clinic. And their stats (as compiled by SART) are pretty amazing…even if you sort them by the diagnosis of DOR. Most importantly, my friend N is certain that Dr. Schoolcraft will be straight with me and tell me whether he thinks it’s worth continuing with treatment, or if I should give up and move on. (The skeptic in me thinks that this bluntness may explain the almost unbelievably high SART stats, as they probably don’t take cases with too low a probability of success…Still, I think it would be worth knowing whether my case is one they would take.)

What about CRMI?

The Center for Reproductive Medicine and Infertility (CRMI) at Cornell Weill Medical College is another place I am thinking about. Their stats aren’t as good (even sorted for DOR) as CCRM…and traveling to New York City would be notably less convenient than traveling to Colorado, (more time zone changes and no family nearby), but from what I can tell, it is the place for treating women with DOR. In 2011, they performed 3379 cycles (that’s more than 6 times as many as my local clinic), of which 776 were diagnosed with DOR. (By comparison, out of 2464 total cycles at CCRM, only 98 were DOR; and out of 545 total cycles at my local clinic, 85 were DOR.) So I also filled out an online form to be contacted by CRMI. If I’m feeling extravagant, I might even pay for phone consults at both clinics, just to see what they each say.

For your viewing pleasure, here’s a comparison of the fresh IVF stats for my clinic vs. CCRM vs. Cornell. You can see why CCRM is so popular:

My clinic Fresh IVF cycles Percentage of cycles resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

54.2%

43.4%

39.0%

10.0%

4 of 15

DOR

2 of 10

19.0%

6 of 19

10.7%

2 of 7

CCRM Fresh IVF cycles Percentage of cycles resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

65.0%

45.5%

35.3%

32.4%

20.6%

DOR

8 of 17

52.4%

28%

5 of 14

4.8%

Cornell Fresh IVF cycles Percentage of cycles resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

38.1%

29.2%

25.1%

14.3%

4.6%

DOR

14.6%

25.9%

25.0%

14.0%

5.3%

And a comparison of frozen transfers:

My clinic FET cycles Percentage of transfers resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

50%

41.20%

29.20%

0 of 3

0 of 1

DOR

1 of 1

1 of 2

1 of 2

0 of 0

0 of 1

CCRM FET cycles Percentage of transfers resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

67.90%

65.80%

58.90%

56.70%

33.30%

DOR

8 of 8

8 of 17

48.60%

51.70%

3 of 15

Cornell FET cycles Percentage of transfers resulting in live births

<35

35-37

38-40

41-42

>42

all diagnoses

38.30%

42.90%

34.80%

11.10%

1 of 15

DOR

2 of 5

5 of 8

5 of 11

2 of 11

1 of 8

As you can see, DOR women don’t often have an frozen embryos to transfer, hence the small numbers here.

As you can probably tell, I’m not feeling super optimistic about having my own genetic offspring at this point. I welcome any encouraging DOR stories, 2nd IVF stories, CCRM or CRMI stories, supplements improving egg quality stories, etc.

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38 Comments

  1. IVFfervescent gal

     /  July 1, 2013

    That post is excellent and, frankly, terrifying. Thank you for the information. I just feel so scared now.

    Reply
    • I’m sorry! That is so NOT what I intended. Please come back to see the comments, as I know there are plenty of examples of DOR women who have gotten pregnant with IVF! JenS at Overworked Ovaries is an excellent example! Luvnmysailor at The Road to Mini-Mart is another…

      And don’t forget that those stats are all from 2011. Surely our knowledge of how to treat DOR has improved over the past two years!

      Reply
      • IVFfervescent gal

         /  July 1, 2013

        Oh I hope I didn’t sound cranky or cross or anything! I’m hugely grateful for the intelligence and thoughtfulness you bring to the online community. I was just telling my husband about you this morning, after he jabbed me 🙂 But yes, I just found your post really sobering but appropriately so. I’d always prefer to have information, even when it totally sucks.

      • You didn’t seem cranky; I just hate to think that I’m increasing any IFers already-sky-high stress levels!

        I agree about always wanting the information, which is why I like Dr. Y so much…

        And I really do think that you have plenty of reason to be optimistic. Dr. Y’s poor prognosis for us was based on additional information that he got from our failed cycle. Your follicles may respond great to stims, and your egg quality may be fantastic!

      • IVFfervescent gal

         /  July 1, 2013

        I had a pot of chai on the weekend … with black tea in it … which has caffeine in it … and felt SO GUILTY about it. How much does this whole thing suck. Gah. Anyway, thanks for your kind and encouraging words yet again. I hope things work out well for us. It’s so kind of you to try to pep me up when you have your own crap to deal with!

  2. Since you’re in SoCal, I would still suggest checking out mini-IVF at Life. It’s a whole different approach from the high stim model at CCRM. The idea is to use minimal drugs to stimulate a couple of follicles each time and try to grow them to blast. Dr. Y there believes in preserving egg quality over the quantity. You bank the embryos for a few cycles and do a later frozen embryo transfer And 3 cycles of mini = the cost of 1 cycle of conventional IVF. I’m terrified that my first conventional cycle wouldn’t work. If it really doesn’t, then I’ll look into traveling to SoCal for this.

    Reply
    • Thank you for the tip. I’ll definitely look into it, but I think the protocol we did last time is actually considered “mini IVF”… I think mini-IVF and natural cycle IVF assume that the one or two eggs you get are of high quality, which was not the case for my eggs. I’m hoping supplements might change that…

      Reply
      • So I go on this forum for high FSH women and many of them go to one of the few clinics in the country that specialize in mini and natural IVF. Life, New Hope, and another one. One of the themes that I have come across many times is.. for DOR women, a great lab that could grow embryos to blast and an RE who knows how to tweak protocols to try to get as many eggs as possible without compromising quality is the key. Life IVF kept popping up as one that has the best lab and can grow embryos to day 5 blasts. I mean, I haven’t really done a cycle with them. I did go to their seminar and met with Dr. Y there. He’s totally unfazed by high FSH and low AMH. Cost is another factor. Yours might be mini-IVF but yours cost a lot more than 3 cycles at Life. Anyhow… just another option to look into. A successful high FSH story at CCRM: a client of mine (2 year old) was conceived at CCRM when his mom was 39 with high FSH after failing 1 cycle at another clinic. Mom is now going back to CCRM for #2 at age 43.

      • Again, thank you! I’m looking online at Life IVF now, but can’t find their SART stats. Are they too new? Or maybe they don’t report? I’ll definitely be following your journey with interest!

      • They are new. Started in 2010. There is recently a thread about the CDC stats for Life: http://www.network54.com/Forum/53068/thread/1372609825/Life+IVF+-+2012+Statistics+and+Phone+Consult

  3. It’s always jarring to see the actual DOR stats all lined up like that. Makes you wonder if we aren’t delusional, keeping on trying. But you’ve only had one IVF, and I honestly find it a little surprising that your doctor isn’t open to at least tweaking your drug protocol. I have a feeling you’ll find quite different opinions at the other clinics. Can’t wait to hear what they have to say!

    Reply
  4. God. Aren’t you incredibly grateful for your education? Not everyone is capable of the kind of research you’ve done here, and I think that if anyone can find out what needs to be found and do what need to be done to get pregnant with DOR, it’s going to be you. I have full faith that you will make the best decision moving forward. And I think it was absolutely right of you to seek out second opinions. I’m rooting for you, woman!

    Reply
  5. So sorry that this is not exactly the news that you wanted to hear, but it sounds like Dr Y was very upfront with his assessment (I know, shitty consolation) but you still have options and second options to pursue. I have to refer to a quote from Aramis “DOR sucks balls!”

    Reply
  6. After 2 failed IVF cycles at a well-respected SoCal fertility clinic, I moved on to CCRM. I was impressed because of their high SART numbers despite the fact that they take some of the toughest cases and are the last resort clinic for women who were unsuccessful elsewhere. I also lived for 3 months like a monk and threw in all of the soft science. If you are interested, I included a lot of detail in my blog. Best of luck to you from a fellow scientist!

    Reply
    • Thank you! I subscribed to your blog a while back, but you’ve motivated me to check out the older posts.

      Reply
  7. I’m so sorry your wtf appointment was so disappointing. Though I would certainly appreciate the honesty- my FS wasted a lot of my time blowing smoke up my ass. Ugh. Anyway- I hope you find some better options- it sounds like some of the ladies commenting here have some great thoughts.

    Reply
    • Thanks catwoman. I totally appreciate Dr. Y’s honesty. I also appreciate all the support from my bloggy friends like you!

      Reply
  8. I wish I had a positive story to share. I don’t. What I do have is a very specific set of skills… oops sorry, wrong coversation 😉 What I do have is a lot of hope for you. I’m sending a lot of love and faith your direction.

    Reply
  9. Your doctor’s stories remind me a little bit of how my mind worked in the heat of IVF. I think he’s got the brain of an infertile woman. I think second opinions from both clinics won’t hurt and might actually help you find your path.

    Regarding supplements I’ve heard good stories (online) about DHEA. I took it but still didn’t get pregnant. I do believe my retrievals around that time resulted in more eggs. Also, keep in mind I was recently diagnosed with uterine issues so for all I know it did help but my uterus screwed things up. I’m going to guess that I’m probably a fair bit older than you too. You may want to investigate it soon though, I believe the suggestion is taking it for 3 months prior to IVF.

    Reply
  10. Sara

     /  July 1, 2013

    I would recommend checking out SIRM (Sher Institute for Reproductive Medicine). There are many locations, I went to the one in St. Louis and saw Dr Dayal. The original location is in Las Vegas, and Dr. Sher is the director there, and he works in St Louis. Consults are free and they have a great website, haveababy.com.

    Reply
    • Thanks Sara. I didn’t know that their consults were free… That definitely makes it tempting!

      Reply
  11. I hope you find a clinic and doctor who is able to give you better odds. Sorry that DOR sucks so much.

    Reply
  12. I think it is a great idea to do phone consults with both. Gather all the information you can before you make your final decision.

    For us, we did 2 IVF cycles with SEVERE male factor infertility. The Doctors kept telling us that we “only needed one!” but God only knows how many time we would have to do IVF to even FIND that one healthy sperm he had… We have now moved on to donor sperm and are happy with our decision. In the end, as long as you make a decision that feels right, you can’t go wrong 🙂

    Reply
    • Thanks Gypsy Mama. I’m certainly considering donor eggs very seriously. And I know that if/when we make that decision, we’ll look back and wonder why we spent so much agonizing time trying to force my geriatric ovaries to function properly!

      Reply
  13. Wow. We are a few steps behind you, with a DOR diagnosis (I’m being optimistic – or in denial – and saying DOR instead of POF at least for now) and considering next steps. Anything I’ve looked up online (which is all from different fertility clinics) is consistent with the theme of your data which shows that DOR/POF reduces success rates of IVF because it’s harder to retrieve eggs. ON THE OTHER HAND, lots of anecdotal success stories of IVF with own gametes. So, it’s all up in the air….Anyway, it’s always good to find another “Craptastic” in the blogosphere!

    Reply
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