IVF Journey

Knottie34543584

Hello

I basically just want to reach out and see if anybody has had any similar experiences. Thank you so much for any replies in advance. 

I am 27 years old, and after not having a period for over 6 months after coming off the pill, I was diagnosed with 50/50 (thin) PCOS and Hypothalamic Amenorrhoea. I was started on Metformin and referred to a FS. Husband has a completely normal sperm count.

I started on a few months worth of Femara, and ovulated beautifully each time, but still did not fall pregnant. My next step was to have a HSG/Laproscopy, but my FS pointed out that doing these investigations would be a similar out of pocket amount to IVF, and that we could consider that instead. 

We ended up commencing IVF, with a very low dose of stims as my AMH is 113. On my first few scans, the FS was gobsmacked at how many follicles I had forming (over 40), and reduced my dose further. As I was at a very high risk of OHSS, my FS changed my trigger from Ovidrel to Decapeptyl as he was concerned I could end up very unwell. 

All looked great, and my egg retrieval was scheduled. Upon waking, I was told the news that unfortunately there weren't any eggs retrieved. This was obviously devastating and confusing, after the FS suspected we would get quite an abundance of eggs. Apparently I am in the small minority of people who do not respond to this trigger; the FS has been in the game a long time and said this happens in generally less than 2% of women, so it was quite unexpected.

Luckily things settled down quickly and we started another cycle, a little different this time; a few days at a high dose, then cutting right back. Again a lot of follicles were forming, but otherwise things looked well and egg retrieval was scheduled for today. When I woke, I was told that 6 eggs had been collected. FS said this number was quite good overall, but he was surprised to find he didn't get many eggs compared to follicles and requested I do a blood test. He said the scientists were a bit concerned as the eggs looked "unusual" and we should give them ICSI to give them the best chance. I was then to await a phone call. Phone call a bit later from scientist to say actually they retrieved 5 eggs (1 they thought was an egg didn't end up being an egg). She said 1 of the 5 was immature, and she suspected there'd be 3-4 for ICSI, but another might be immature. I asked in what way did they look unusual, and she said the outer layer of the egg looked unusual, as though it possibly hadn't formed properly. FS said this could be due to a low level of LH, which prevents the eggs from forming properly, and is usually why the Decapeptyl trigger doesn't work as well.

I know this is normal feeling during an infertility journey, but I am feeling just a bit disheartened with the whole process as it seems my outcome on both occasions is not something that they see regularly. The FS said if we do another cycle he will add some LH, but I'm not feeling as confident about the whole IVF process anymore. I am just wondering if anybody has any similar experiences to share? 

Thank you so much

JamieH2000

Welcome!! I am on round 4, so I know how hard it is to go through multiple IVF rounds. After two failures, I would definitely seek a second opinion. You can see in my siggy, but changing REs and getting a new perspective totally improved my results in round 3. I think it would be good to get another opinion since your case is somewhat unique... best wishes and thinking of you!

AngryBull

Welcome, and I am sorry that you find yourself here. I have found this board to be a tremendous resource and I hope you do, too. I haven't had this exact issue personally so unfortunately I don't have any info to share, but I know I've seen posts previously from ladies with PCOS specifically mentioning issues with their follicles to eggs retrieved ratio and different protocols their REs were trying.  I do have PCOS, though, and I'm constantly reading about it so if I come across anything I will post.  This is a tough journey and I'm sorry you're feeling down right now. Hopefully things will turn around soon and you will get some answers and feel better - I'll be sending good thoughts your way in the mean time!

Knottie34543584

Thank you so much JamieH2000 and AngryBull for your replies, it is really appreciated. Multiple failures definitely make this whole thing so much more of a roller coaster of emotions! Thinking of you both as well, and wishing you both luck. PCOS and IVF are such a tricky mix, and each cycle can be so variable. Had a phone call this morning; 3 out of 3 eggs they attempted to fertilise fertilised! So good news but hope they'll continue to develop over the next few days. Thank you both again for getting in touch  

FuzzyDust

Hi @Knottie34543584
I also have Hypothalamic Amenorrhoea, which started when I was 16.
Just like you, I respond abundantly to stims, and I'm also in a risk group for OHSS because of that.

I just did my first cycle last month. Did 150 UI GonalF + 75UI Menopure for 12 days (+ ovulation suppression the last 5 days and on a trigger day too so that my body don't add extra HCG). I had about 70 follicles growing, and I did ask my RE to switch my trigger from HCG to something like Decapeptyl, but she said that it might cause the "empty follicles" (in reality it means the eggs don't prepare for ovulation correctly and don't un-stick from the follicle wall for the retrieval). Instead, my HCG amount was cut in half, and I ended up with 13 eggs retrieved/ 10 mature / 7 fertilized.
I also ended up with moderate OHSS and I'm doing the freeze-all so that it doesn't get worse. My retrieval was on March 3rd, and I found out yesterday that we ended up with 3 frozen embryos, biopsied for genetic testing.

Maybe try changing RE clinic, a different kind of cycle. 

Lots of hugs, and good luck! It's a good turn of events having all the eggs successfully fertilized, so maybe its time for more good news in the next few days. Waiting for the embryos to grow is both exciting and nerve-wrecking.

mandasd

@Knottie34543584 yay 3 embabies! Keep us posted!

@FuzzyDust 70 follicles! You just have been really uncomfortable and your ultrasounds must have taken forever! FX for strong pgs embabies! 

FuzzyDust

@mandasand, haha, yeah.... My ovaries are still "massively enlarged"  (real term used in my ultrasound 2 days ago, that was day 5 after retrieval). A few days into stims, I was bloated and I could feel my ovaries "jiggle" as I walked. In the middle of stims cycle my RE was showing off my u/s pictures to all the nurses and they'd come to my room just to comment on it  And yeas, measuring took forever during checkup, even though they only recorded top 20-25 each time.

Aera11

@knottie34543584 my OB diagnosed me with PCOS since I don't have periods on my own, but when I switched to my RE, she doesn't think I fit PCOS criteria other than being anovulatory.  I've only done one failed found of IVF so far, and feel that same disheartening weight on my heart.  I responded well to my stims but when they went in for retrieval, a lot of the follicles were appearing empty (I guess this time they are going to use a different pipette/needle to retrieve).

I think the most important thing for any of us to do during this process, is to do whatever we need to in order to take care of ourselves.  We are pumped full of drugs and hormones, it's an emotional ride for us and our spouses/partners, it takes a toll on our relationship with family, friends, work, etc. so just be kind of yourself and know you are not alone in your feelings.  We all want to fill that baby shaped hole in our hearts.  Make you a priority and do something nice for yourself, big or small  I gave up a lot of things I love along time ago for this process (wine, coffee, chocolate, basically anything salty) and wanted to be as healthy as possible, but now I treat myself to a nice coffee, piece of chocolate or a pedi on the days I feel sad or extra down.

*edited for typos

Knottie34543584

@FuzzyDust Wow 70 follicles, that is insane!!! That is very interesting your RE said about Decapeptyl maybe causing "empty follicles". My RE did tell me of this risk, but said it was less than a 2% chance, so not to over think it, but alas! It sounds like despite everything you've had a good result so far, so fingers crossed everything will settle down quickly, and baby dust to you also

@Aera11 PCOS can be so confusing can't it, with a mixture of opinions on diagnosis. I'm sorry about your failed ivf, it's so hard! And you are right, it is so important to look after yourself and if there are little ways we can make ourselves feel better, then we just have to go for it! All the best to you X