We have now been through 3 cycles of IVF - 1st time 1x 2cc transfer (BFN), 2nd and 3rd cycle, all developed abnormally at day 3. I have an AMH of 63 and have PCOS. All the stories I find that are similar to me are Low AMH / ovarian reserve patients. It's so hard to find people in my position - with lots of eggs but all create abnormal embryos. Do we keep trying? Has anyone had success in a similar situation? I know we can use DE and that is definitely plan B, but I'm struggling to accept it now. There's always so much hope, everything goes well, good fertilisation, then day 3 - all developed abnormally.
I guess I just need to find some people who are in the same situation. I feel so alone and no one knows what to do with me.
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Lozza8
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I'm so sorry to hear that you've been through three unsuccessful cycles. That's really hard and it's even more difficult when you feel like no one knows what to do or has any suggestions for improvement. 💛
I'm curious - is there a particular reason you suspect an egg quality issue rather than a sperm issue? When embryos have arrested or abnormal development from day 3, it often indicates an issue with sperm quality. In our first cycle, we had 21 eggs collected and 13 fertilised but only one made it to day 5 and a further one was slow developing and made it to day 6. After those results, our consultant suggested that my husband have a DNA fragmentation test done and, lo and behold, it came back with very high fragmentation which explained the poor embryo development. Before you look into another cycle or donor eggs, I would definitely have your partner do a sperm DNA fragmentation test.
From an egg quality perspective, are you taking myo-inositol for the PCOS? You could also start Impryl which also helps with egg quality.
Best of luck. Hopefully you can get some answers soon xx
Hi, thank you for your reply! The Drs have suggested that due to the timing of the abnormal divisions it's likely to be egg quality. On our day 3 call they tell us they have divided abnormally so it's before day 3 that this has happened. I do however still want to explore the possibility of sperm DNA fragmentation, so we've checked everything before going down donor route. I am taking myo inositol, I have been for years. I've been taking coQ10, DHEA, melatonin etc etc. I really felt as though I threw everything into this round. Thanks again for your reply
I think this may be controversial but for many PCOSers DHEA reduces egg quality. DHEA is an androgen and for many with PCOS the issue is that your body makes too many androgens and too much androgen exposure is bad for eggs.
Did your RE do an androgen panel before recommending DHEA? If not that's something to look into.
I think if you search the forum you'll find PCOS posts that might be helpful. PCOS seems to be a mixed bag with some having no issues only really good results with lots of frosties or it is a real struggle to get one good embryo. I think it has to do with the severity of your condition and whether it primarily impacts ovulation/maturing eggs or if your androgens are haywire.
An acquaintance with PCOS with crazy androgens was on a special diet for 6 months (low GI) to improve egg quality. She produced lots of follicles and everything looked promising but at EC it turned out most were cysts (no egg), and the eggs she had were bad quality. At 32 she went from 3 eggs to 12 following diet changes. She ended up with a LO so the strict diet was worth it for her.
Hi thanks for your reply. I did have my DHEA levels checked and monitored throughout. I have quite low androgen levels it turns out, which is a trait of the Lean PCOS phenotype. I wasn't taking DHEA in my last 2 cycles and it was the same outcome, so didn't work for me anyway. I've been on a low GI diet overall for the last 3 months before this cycle, I feel like I've tried everything at this stage. I saw a nutritionist and have been taking supplements recommended for PCOS aswell.
Oh interesting, thanks for the additional info. I'm glad you're planning on getting a dna fragmentation test done anyway though. Our consultant gave us slightly different advice than P2021's - once we identified the fragmentation we were told our next cycle should be ICSI with PICSI, which otherwise they wouldn't have offered. The discovery of the fragmentation also set off some further investigations to try to determine the cause of it (ultrasound to check for varicocele, urine tests to check for infection , etc) which I think was worthwhile and, quite frankly, it was a boon for my mental health to finally feel like the weight of infertility didn't rest solely on my shoulders.
Jumpppy's comment about DHEA and PCOS is an excellent point. I would def look into that further and do an androgen panel/ have your DHEA levels tested. xx
Hello Lovely, I am so sorry to hear about what you have been going through. I am in a bit similar situation with 3 fresh cycles failure but no PCOS. my last failure was about a few months ago and now I am taking a proper break.
my amh was 10, 2 years ago, when I was 33. so it's a bit low.
husband has low motility but last tests showed significant improvement.
I always had around 8-9 eggs with good fertilization rate but most embryo stopped on day 4. So I ended up with one or two embryos in the end with day 3 transfer on 1st cycle and best quality so far was 5bb.
My consultant also thinks it's due to egg quality as it's more common than sperm issues.
I did ask about DNA fragmentation but he said even if there is fragmentation - treatment will be ISCI and embryoscope which we had in all our cycles. So won't change management even if that's the case.
I was on coQ 10 in last cycle and preconception multivitamins.
Now all stopped and we are only taking Impryl.
I am not sure whether you are aware of Infolic Alpha which is also for PCOS and review is quite good.
Hang in there. it's definitely hard for a few weeks after BFN but it'll gradually better.
Hey! Just saw your post about dna frag. That’s what our doc said to us and it’s simply not true. There’s lots they can do for dna frag - diet, antibiotics and even surgery to retrieve the sperm directly from the testicles. If you look up Dr Ramsey, he has lots of information on his website.We ended up changing doc because he simply wouldn’t take the sperm into account.
Search dna fragmentation on here and you’ll read lots of success stories!
Hi hun so sorry to hear your failed cycles. I’m in a similar situation but have endometriosis and never managed to get an embryo! Can I ask you what kind of protocols you were on and where of you could kindly message me? I also wanted to give up as nhs told us we should look at donor eggs but my husband doesn’t want to give up and want to try privately. We had three initial consultations till now and need to decide what protocol to take. I know this is such a hard time I’ve cried nearly every day but trying to stay positive, taking loads of supplements, acupuncture and exercising. Could I also ask how long you took dhea for? I’ve heard mixed reviews about this and side effects.
Hope you don't mind me asking these questions but your situation has piqued my curiosity and now I'm going down the rabbit hole on PubMed!
-What type of protocol and meds were you on for your three cycles?
-How long were you on DHEA for before your latest cycle?
-Were you testing your testosterone and SHBG levels throughout your DHEA supplementation? If so, what levels of each did you reach at the time of your cycle?
-Have you been tested for autoimmunity? If so, were you on any treatments during your cycle?
If these feel too personal to share on the thread, feel free to pm me. Or ignore this completely if you want!
- What tests would I do for autoimmunity? No ones offered me any unless thyroid counts. If so I have subclinical hypothyroidism which I'm taking levothyroxine for
Hi lovely, thanks so so much for sharing. Apologies in advance for the long message and if you already know some or all of this!
It sounds like you have hypoandrogenic PCOS (haPCOS) which I suspect you may already know since you've tried supplementing with DHEA. The Center for Human Reproduction (CHR) in NYC identified this phenotype in 2013, and has had success with treating patients by raising their androgen levels through DHEA (and occasionally, testosterone) supplementation. I found this article (centerforhumanreprod.com/fe... super enlightening, and my key takeaways were:
-Your testosterone levels in your 20s were likely high, as you would normally see with 'classic' PCOS patients. They probably started dropping in your late 20s or early 30s. Your ovarian tissues still remember these high testosterone levels as normal, so when raising your androgens through supplementation, you need to achieve higher than 'normal' levels of testosterone in order for your ovaries to start functioning correctly. This may mean that you should be aiming for higher levels than 1.6nmol/L.
-Women with haPCOS normally have elevated levels of SHBG. At CHR, they monitor testosterone levels as well as SHBG during androgen supplementation, and they won't initiate IVF until SHBG drops below 80nmol/L.
-Though they lack empirical studies, CHR suspects adrenal autoimmunity often goes hand in hand with the haPCOS phenotype. To be honest, I'm not sure which tests you would do to test for this, but I would definitely bring it up with your clinic and endocrinologist. Immunosuppressive therapy may be something to consider during your next cycle.
-I assume you're in the UK(?) so working directly with CHR isn't an option, but they have a 'second opinion program' where you can upload your medical history and they'll give you a written second opinion report for $350. You can then have another follow-up with a doctor for $250. If it were me, I'd definitely get the written second opinion and then maybe try to coordinate with your IVF clinic and endocrinologist here to have a follow-up consultation with everyone together.
-I know you said you've been on myo-inositol for several years. As P2021 suggested, have you tried the Inofolic Alpha brand? Apparently, 35-40% of women with PCOS have trouble absorbing myo-inositol due to altered gut microbiota. Inofolic Alpha includes alpha-lactalbumin in their formula which increases absorption of myo-inositol for these women. It might be worth a shot in case you’re in that 35-40% and haven’t been getting the full effect of myo-inositol.
I hope some of this is helpful. If it's true that you have haPCOS, it's no wonder that you've been struggling with IVF. Since it's less common than both 'classic' PCOS and hypoandrogenism with low AMH/ovarian reserve, most doctors don't know how to treat it, but once you get the treatment dialed in, things should start clicking into place. Wishing you lots and lots of luck xx
Thanks for your detailed reply. I actually know of Dr Gleicher’s work at CRM, it’s why I pushed to try Dhea in the first place. I may look into their second opinion program though. I’m not sure my nhs clinic will ever take any of that into account as they don’t try anything experimental or out with their normal protocols. But I may be able to find a clinic that does.
Also I’m not sure if I misunderstood at the end there but I don’t have low AMH/reserve. I have very high AMH. I may be reading that wrong though like I said x
Heya, yeah I figured you were probably already aware of his work since you've tried DHEA.
Good luck if you choose to go with their second opinion program. I don't know how much medical advice they're willing to dispense through that program, but it would be great if they could advise on what types of protocols they see success with, what you should aim for with your testosterone numbers, and what tests you should have done to check for autoimmunity. And yes, I would look around for different clinics here that are willing to try something a bit different. After three rounds, it seems a sensible point to explore other clinics.
And yes, I understood that you have high AMH. I was just saying (not very clearly!) that haPCOS differs from more common diagnoses like hypoandrogenism with low AMH, which is partly why lots of doctors don't know how to treat it.
Just as an FYI on this. I sought a second opinion from CHR and the nurse I spoke to when setting this up actually recommended that I not do the second opinion but a phone consult. I sent all my info ahead of time and Dr Gleicher reviewed prior to the consult. I think it cost less too. Nurse said benefit of the phone consult is you can ask questions and engage in conversation (i.e. Dr could ask me questionswhere there were gaps in documentation)-second opinion program is just a "written opinion." I found the phone consult valuable and glad I went that route. Actually had a send phone consult based on questions and further investigation into my treatment.
Thanks for this, that’s so interesting. Can I ask how much you paid? (Private message me if you prefer)
Also, do you have a similar case to mine and do you feel as though you’ve got more options now? I’m worried that I’ll pay all that money, get advice and no clinic in the uk will follow it up xx
I can't remember but it was USD250-300. For me the RE was recommending we go to donor eggs based on the results from 2 cycles with PGT-A. I was not ready to believe that's where I was so I sought a second opinion given they specialize in older women with DOR. Key factor for me is that I was seeking a "specialist" opinion and believed Dr Gleicher was a specialist in my "infertility presentation." Otherwise wouldn't have been worth it as a lot of clinics will give youna free or reduced cost initial consult if you want to change clinics.
For me it was worth every penny as Dr Gleicher said I wasn't ready for the donor route and recommended I put back two of the tested embryos (mosaic and abnormal), change REs (but stay) at my clinic and tweak protocol. I just delivered 4 wks ago, totally healthy and normal. Plus I continued cycling (pre transfer) and have good looking embryos in the freezer.
A live healthy birth is worth the 2nd opinion. So for me worked out well.
I will say I had a friend go to him first and he recommended she stop trying with her own eggs (3 cycles 4 MCs with trisomy 21/18) as she had consistent abnormalities and every transfer stuck. She kept going with her own eggs and had 3 more MCs and delivered 6mos ago via donor eggs.
He's VERY honest and straightforward and will not just tell you what you want to hear. He gave me "reasons" for all of his thoughts based on my results. He did recommend a whole bunch of additional tests before consult #2where he discussed his thoughts on protocol tweaks. I'm in the US so all of the testing was free with insurance - but there was a lot he suggested so be prepared. If I had to pay out of pocket I would have likely only done a handful of what he recommend. Personally I really trusted his advice and thought it well-reasoned. I went with it and had great results.
I hope things work out for you too - one way or another.
Hey! 🙋🏼♀️I don’t have PCOS, just PCO and poor egg quality. I’ve just started my stims for found five 😞 no success yet.
I get lots of eggs and high fertilisation but they rarely make it to day 5. And any that have didn’t develop any further.
We’ve had our dna frag tested and it came back normal so it’s definitely my eggs but our doc is going to do a testicular biopsy anyway as he says the results aren’t always reliable.
This round we’re using gonal f, pergoveris and a growth hormone called Saizen which is meant to improve egg quality. Crossing my fingers and toes that it’s works cuz I’m not sure how much more of this I can go through.
If you ever need to chat or have questions, just send me a dm. Xx
Hi, thank you for your message. It’s refreshing to hear someone in the same position as me but I am so sorry to hear that you are. How did your cycle go? Xx
Fingers crossed for you wishing you all the luck!! To our surprise we had one low quality blast at day 5. Thursday is OTD and not hopeful at all as no symptoms 😔 let me know how you get on xxx
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I was just saying (not very clearly!) that haPCOS differs from more common diagnoses like hypoandrogenism with low AMH, which is partly why lots of doctors don't know how to treat it.
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