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Old 09-29-2009, 04:43 PM   #1 (permalink)
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Default Non-responder with IVF history

I am 28 and was diagnosed with PCOS almost 5 years ago. I don't respond to metformin or chlomid and I am thin (BMI 22). I have done IVF 3 times (1 fresh cycle and 2 frozen) The first cycle resulted in the birth of my angel, Avery, born sleeping almost 2 years ago. The next two frozen cycles were unsuccessful, one was a blighted ovum and the other a bi-chemical pregnancy. I am now being told by my RE that my egg quality is low because of my endometriosis (I have had laporoscopic surgery and they found a small amount 4 years ago). My OB tells me that my egg quality is low because of the PCOS. I don't know what to think. I have also done 2 IUIs with femara and follistim. Both were unsuccessful. I only have one tube and am not sure if the other one even works. However, I know I can carry a child because I carried my daughter for 32 weeks. I have had every test done and no one can really give me a straight answer. I am looking for a support group so that I don't feel so alone in my frustration. Is there anyone out there that can relate?
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Old 09-29-2009, 07:10 PM   #2 (permalink)
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Hi Candi, I have not had the same experiences, but I am going through IVF currently. I can tell you that egg donors have a very high success when it come to IVF and success rates. I know that using someone elses egg doesn't give you a 100% biological child, but it could give you the ability to have a successful pregnancy and the child that I know you desperately want. It's just a suggestion, but I do know that a lot of women who can't get pregnany with IVF and their own eggs have great success with donor eggs! Best wishes to you!
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Old 09-29-2009, 07:35 PM   #3 (permalink)
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Thank you! We have thought about donor eggs but my RE is convinced that if we give him one more shot he can get us through to a successful delivery. I just don't know if I am willing to spend all that money (if I can come up with it) and have it not work. Do they have you on Metformin for the IVF? I wonder if that will help my egg quality? I am also going to ask about the ovarian diathermy. When I did my first they took 46 eggs. That is a lot for IVF and I have been told that the more eggs you have the lower the quality. We had 40 fertilize but only 7 make it through to transfer and freezing. Then out of those 7, 2 weren't good quality at thaw and then I had the blighted ovum and bi-chemical pregnancy. I just wonder if there is a way to improve egg quality before doing another egg retrieval??
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Old 10-01-2009, 01:54 PM   #4 (permalink)
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I was on Metformin for 2 months and it made me really sick. I didn't really need it. She (My RE) put me on it just because that's their beginning protocol to combat PCOS. I took the glucose tolerance test and I was completely find. The only issues I have with PCOS is that I just don't ovulate, however, I responded well to Clomid and Letrozole. I wasn't overstimulated on either one. I had approx. 3 good eggs each cycle. I have currently been on the BC pill (today is my last day) and Lupron. SO I have NOT made it to the retrieval stage yet. All I know is that I'm super scared that's about it! I don't know that Metformin will improve egg quality. I believe that its only purpose is to help lower your insulin levels so that ovulation is possible. I feel you on the money issues. My paretns have luckily given us the money we need for 3 cycles. It's a lot of money to just gamble on your RE's intution...Honestly, I have a lot of hope for you, you did conceive! So your eggs can't be as bad as they say!
Any advice for how to get through this without going nuts? I got pregnant before, on my own, with no help unfortunately it was a complete shock and I ended up terminating the pregnancy. I'm really kicking myself in the ass right about now...so I'm thinking about that and now all of this IVF stuff and it's super hard. I'm praying that since I did achieve a pregnancy on my own that I just need IVF to bypass the whole getting pregnant issue!
My heart goes out to you and if you need to talk pleaswe let me know!
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Old 10-01-2009, 02:36 PM   #5 (permalink)
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Candi - what kind of protocol did they have you on when you were stimming for IVF? My doc, who treats A LOT of PCOS patients via IVF, uses a different batch of meds for his PCOS patients vs his non-PCOS patients. My second IVF cycle (which resulted in my daughter, who is now 19 months old), we tweaked my meds even further, and it resulted in a lot fewer eggs, but of MUCH higher quality embryos. I would tend to believe your OB's conclusion about your egg quality being low due to PCOS rather than low due to endo.

hth,

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Old 10-01-2009, 02:41 PM   #6 (permalink)
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The only advice I can give is to take it one day at a time and don't let yourself get overwhelmed with it all. Also, remember that the end result is totally worth it. I am assuming that your RE has done all of the blood work to check for genetic disorders and that they have done the sonohistogram? The worst part is the retrieval and that was only bad for me because they took out 46 eggs. I was really swollen and sore. Most women only get around 10 or less eggs so I doubt it is as painful for everyone. I know that every RE is different. Mine had me coming in every other day for bloodwork and ultrasounds up until the retrievel and I had to drive 2.5 hours each way for those appointments. If you are close to your RE it may be less stressful for you and he/she may not do that many ultrasounds. I wish you the very best and please let me know if you ever need to talk about anything. It really is a stressful process and it's nice to have someone to talk to who has been there! good luck
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Old 10-01-2009, 02:46 PM   #7 (permalink)
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Ann, I know I did a follistim pen and mixed it with another drug (it's been a while and I can't remember the name but it starts with a G). I wonder if I do get to do it again whether he will change that. I kind of hope so! He has a plan for me for my next cycle but we can't do it until we come up with the $$$ and that may be a couple of years. He doesn't think we should wait more than a year because my egg quality will keep getting worse. He is keeping me in mind for clinical studies but I am not getting my hopes up.
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Old 10-01-2009, 03:20 PM   #8 (permalink)
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Follistim is often used with Ganirelix (which suppresses LH). Another common option to Ganirelix is to use Lupron (in very small doses - NOT the mega dose that is used to treat Endo).

My doc likes to use Gonal-F, in his opinion, with women with PCOS, it grows fewer eggs, but likely higher quality eggs. So, in a typical IVF cycle, he uses Gonal-F to stim, with lupron to supress LH.

During my second (successful) IVF cycle, he added micro-doses of HCG - this made a MONSTER difference in the quality of my eggs / embryos.

He said that another option to micro-dose HCG is to use something like Menopur / Repronex, which has a combination of FSH and LH, but he feels like he has more control over individually dosing FSH, and the HCG is cheaper to use, and in his opinion, just as effective as using Menopur / Repronex.

HTH,

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Old 10-01-2009, 03:23 PM   #9 (permalink)
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Oh - I forgot to mention that I am on Met and synthroid. You might want to consider getting a full thyroid work up (and make sure that your TSH levels are between 1 and 2, which is considered optimal for TTCing). Low thyroid function can have a very negative effect on egg quality (and can prevent ovulation if too low).
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Old 10-01-2009, 03:48 PM   #10 (permalink)
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I remember using Menopur now that you mention it. I have used lupron for my FETs but not for the fresh cycle. I have had a thyroid work-up and it all came back normal. Thanks for the information. I am going to ask my RE about it when we talk again. I am curious to see what he says.
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Old 10-01-2009, 03:56 PM   #11 (permalink)
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Candi - did you actually see the NUMBERS from your thyroid work up? A lot of labs still use the OLD values, and report your thyroid function as "normal" when it's really not. See http://thyroid.about.com/od/getteste...altshlevel.htm.

I would see if you can get a copy of the actual lab report.

hth,

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Old 10-01-2009, 04:09 PM   #12 (permalink)
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I will do that. I am going to talk to my OB next week anyway so I will ask him for the results. I know my sister has problems with her thyroid but her's is obvious and she was diagnosed during pregnancy. I just want to find an answer!! and even better... a way to fix it!
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Old 10-04-2009, 06:44 PM   #13 (permalink)
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Hey Candi, I can't send you a private message, but my e-mail address is cathyuzar@comcast.net, please e-mail me so that we can chat without going through this....I'd really appreciate it!

Thanks and look forward to hearing from you!

Cathy
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