I'm hoping your still a member, I'm feeling very lost.
I have PCOS, AMH of 197.7 and produce over 110 immature follicles a cycle. My IVF clinic is frankly afraid of treating me.
Before starting IVF they are wanting to test out Puregon on me, so they are having me only take 25iu a day and wanting to do iui just as a tester. They say I'll be injecting for upward of four weeks.
Along with this I am also drug resistant, in three years of medications I have only ever responded twice and that was to the legal limit of letrozole of 12.5mg a day for 10 days, which I triggered with.
Please give me some hope, the lack of infomation out there with someone in my position is crippling.
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10-03-2016 20:35 #11Junior Member
- Join Date
- Feb 2016
Hoping you read this!
10-03-2016 21:12 #12
Hi @Bambi88, I couldn't read and run. I also have a high AMH due to my PCOS. When we were trying for my DD back in 2010, my fertility clinic were also very cautious. We started on clomid which did nothing at all and I had no ovulation. We then moved onto injections of puregon. I started on a low dose of 50iu with no action at all so my dose was gradually upped to 75iu where I ovulated one egg but was unsuccessful in falling pregnant. On my second attempt I started on the same dose of 75iu but unfortunately nothing happened this time so my dose was upped again to 100iu were I ovulated 2 eggs. I was lucky and conceived DD through ovulation induction alone and BD at home.
We are currently ttc conceive no.2 though and its been a long journey. We did several rounds of ovulation induction again with no luck but it was as if my body just became so use to the medication and it took higher doses each time to ovulate. My fertility specialist took great care in only increasing my dose gradually so as not to over stimulate but it was becoming too difficult to produce only a few eggs so we changed to IVF.
I have done three cycles of IVF now and as before my doses have been different each time. My first two cycles were with a budget clinic who played things very cautious, I retrieved 15 and 17 eggs. I don't think the protocol was the best for me though and the quality of the eggs wasn't great. Neither of those times did I get OHSS and have been really lucky. On the second IVF cycle my fs was worried about it though and cancelled my transfer and I had to freeze all my embryos.
Since then I have moved onto a new FS who is known for pushing the boundaries, I wasn't achieving any follicle growth on a dose of 117 so he straight away upped my dose to 150iu which worried me initially. I retrieved 23 eggs, but he said if I felt ok he would transfer and again I felt fine so transfer went ahead. We haven't as yet been successful but just felt I had to reply to reassure you that not everyone with a high AMH suffers with OHSS, good luck with your cycle hun and as long as your clinic take things slowly you will be fine.
11-03-2016 06:44 #13
Just to give you some hope, I've now got two kids both through OI and BD alone.
My first was conceived on the 5th cycle, longest cycle was about 31 days of injections.
1. Clomid- nothing,
2. Clomid straight into injections, trigger, BFN
3. Injections, trigger, BFN
4. Injections, too many follicles, abandoned cycle
5. Injections, trigger, BFP
These cycles were all back to back between March and October and I was booked for a laparoscopy in November and planned to take a break from treatment between the surgery and the new year as I was just emotionally exhausted. Cycle 5 I'd pretty much given up hope and was just hanging out for the surgery and the break.
When we went back for no.2 I was expecting it to be quite a process but we got really lucky and conceived in the first cycle after injections for about 10-14 days? It was a lot different second time around, I had hope, I didn't have time to give it much thought. I've got 23m between my two and had them at 27/29.
I'm sorry I don't remember too much of my doses etc but I know we kept it low and took it slow. If you're in Brisbane I can highly recommend Dr Julie Lindstrom. She is amazing.
All the best Hun x
11-03-2016 07:37 #14
Yes I am still here and saw your post. I will start with the good news, I have two beautiful boys only 16 months apart so have been very lucky. This being said, I was incredibly sick with ohss with my first son. My first cycle my dose was too low 75 puregon and we got 6 eggs, 4 fertilized, 1 was transferred but ended in a miscarriage.
The second cycle I was on 125 for 3 days and then increased to 150 of puregon I got 21 eggs and 17 fertilized, 2 transferred, none frozen - that was the cycle I got my first son but also ohss, the ohss didn't set in until after transfer though. I was very sick and hospitalized for over a week and sick till about 12 weeks pregnant.
My third cycle I was on 100 for 3 days then increased to 125, personally I think this was the best dose for me. I got 19 eggs, 15 fertilized, 1 transferred and 2 frozen. I got my second son this cycle.
I had one HRT frozen cycle that was a big flop. The other embryo didn't defrost properly.
My fourth cycle my specialist convinced me I was older and needed a higher dose again, so I was on 125 for 3 days then up to 150 of gonal f instead. I got over 40 eggs, most weren't mature and ended up in an instant freeze all. I think 28 fertilized but only 2 made it to freeze, my specialist now agrees my age doesn't mean I need the extra dose.
I then had another frozen cycle with letrozole 5mg and got pregnant and lost the bub at 8 weeks, that was November.
I then had another frozen cycle with letrozole 5mg and got pregnant and lost the bub at 5 weeks at the end of Jan, I don't think the quality of those embryos was ever good despite the lab saying they were.
Now we are back about to start another full stim cycle on our quest for a third. A lot has happened in the last few years though and there is definitely hope. Please feel free to stay in touch. I am in Victoria, I am not sure where you are but I highly recommend making sure you have a fertility specialist that you have confidence in. Unfortunately iui was never an option for us because we need donor sperm as well and they didn't want to waste it on trialling iui, similarly I had severe endo removed as well and going to Ivf was the best option for us.
Wishing you all the best xx
11-03-2016 11:28 #15
Hi ladies just seen this post flash up in my feed. I'm in the same boat PCOS, high AMH levels (not as high as some of you) & 32 having been TTC for 3 years.
I'm just going through my 1st IVF round and all is going well. My EPU is on Monday.
My cycle consisted of being on the pill for around 6weeks and while still on the pill started synarel nasal spray on the 13/2 stopped the BCP on the 19/2 and had a mini period of 2 days then started my puregon daily injections on the 27/2. I've only had lose dose of puregon (100) and will be having my ovidrel shot tomorrow.
So far so good. I have a busy right ovary ATM with around 12 follies of measurable size (plus half dozen tiny ones) and my left ovary has 6 decent follies and 8-9 smaller ones.
Hope that helps a little
11-03-2016 11:40 #16
I was deemed high risk for OHSS so they made me use Syranel to trigger and after EPU I had a Freeze All so I didn't do a fresh transfer. The FET the following month ended up with my DD.
My understanding ( and I could be wrong as it was a while ago ) is you can't get OHSS till after egg pickup and that the Syranel suppressed everything to prevent that happening.
11-03-2016 11:59 #17
As @amiracle4me has commented it is also important which trigger you use if you have a lot of follicles. I have heard of some women using synarel before, my fs used a lucrin trigger instead of pregnyl which was originally planned due to my high risk.
11-03-2016 12:13 #18
Hi there, I'm probably not adding much that hasn't been said but to give you some hope, I've got pcos and a high AMH, retrieved 18 mature eggs on a cycle of 150 meds. They did a freeze all and a non Hcg trigger so minimum chance of OHSS and then I got my DD from the first FET of that batch :-)
11-03-2016 12:32 #19
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11-03-2016 18:41 #20Junior Member
- Join Date
- Mar 2016
My AMH is 232 I celebrate it because hey, it's the only massive acheivement I have so far ha. It's the highest my Dr has ever seen and he freaked out when he realised.
I found injectibles WAY better than clomid. So much easier for them to manipulate. I wasn't as crazy either, clomid made me wild.
First cycle we cancelled and converted - low response as they were too conservative.
Second cycle I hyperstimmed. OMG. Not fun at ALL. Freeze all cycle. Collected 24 eggs but they were largely poor quality with a few immature. I responded VERY QUICKLY.
Third cycle I semi hyperstimmed. Certainly not moderate or severe, just mild and feeling under the weather for a few days. I was still able to go on to transfer. It was a slower stim, took about a week longer than the other collection and overall better E2 per Embryo than my other cycle so hopefully better quality. We have 3 left in the freezer but negative on the fresh transfer
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