ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

@Enfys23 I'm so sorry. It's unbelievably shit and unfair. All you can do right now is be nice to yourself and get through the next few days. Sending lots of love ❤️

I’m so sorry @Enfys23 don’t worry about future plans for now. Just take the time to rest and to grieve. Maybe when you’re ready then post a recap of your situation here and maybe people will have some advice or something you haven’t tried or discuss the what ifs. Mind yourself and DH.

So sorry @Enfys23 ❤️. It’s so, so hard and so sad, especially after getting the glimmer of hope with the BFP earlier.

I'm sorry @Enfys23 I get how you feel, remember my 5th was my first positive which was a chemical though and my 6th was the one that has been working. The things that helped me were my fibroid surgery, the natural modified cycle with low dose stims and the immune protocol. Is there anything else that you have looked at doing test wise etc? Or changes to protocol?

I am so sorry @Enfys23 ❤️❤️ sending you lots of love today xxx

I’m really sorry @Enfys23, I knownthe feeling of being back to the same point over and over again, the sadness and frustration it brings is like no others. I hope you and your DH can be kind to yourself ij the next few days ❤️ xxxx

@Enfys23 I’m really sorry. IVF is so hard.

@Enfys23 I’m so so sorry 😔 this journey is so difficult and it feels so unfair to get a BFN after all you’ve been through. I hope you and DH are able to take time for and be kind to yourselves. Thinking of you ❤️ x

@Janefx40 @Dochas12111 @Gardenlady543 @Spin101 @2021ivfagain @clhiu @CailinInUK @VenusStarr
thank you for all your lovely messages ❤️

I did have a good chat with DH yesterday PM though and we are going to keep going.

I was wondering about Manchester Fertility as an option - anyone heard good things or otherwise? They’re a bit more of a trek but I really think I need to go somewhere else now. Also was wondering about mild IVF/CREATE given I only ever get a few eggs anyway - any thoughts? Again I think CREATE Manchester are closest. Reading some online stuff people seem to rate CARE Manchester but I’m nervous about CARE now.

As a recap, we are now just both turned 36. Never had positive preg test in all time trying until this faint positive in this cycle. I have endometriosis and low AMH seeming to range 2.5-5.5 ish these past few months and AFC 4-6. DH has had excellent SA results and sperm SOS test. We are waiting to see what morphology was like on sample used for this cycle but was 4% original test and then 2-3% in our first two treatment cycles probably as DH got COVID fever before these. We’ve had normal karyotypes. I have autoimmune hypothyroid, coeliacs, raised thyroglobulin antibodies, and anti-cardiolipin antibodies (found on thrombophilia screen after our 3rd failed transfer). Hycosy and hysteroscopy all fine. EMMA and ALICE - All good. ERA post receptive but as we then went for natural FETs didn’t repeat.

Cycle 1 on 300iu FSH we had 4 appropriate size follicles develop. Lining got to 6mm just about at day 10. Cycle was handled poorly with junior/trainee staff doing procedures. Got 1 egg. It fertilised and made it to expanding blastocyst AB on day 5. Transfer was painful and they hit my uterine fundus causing cramps. BFN. Started bleeding day 8 post transfer. I was on Cyclogest 400mg bd.

Cycle 2 tostran androgen priming in month before. Lining again just under 6mm and by EC day closer to 5mm so was put on estradiol patches and tablets. Similar follicle numbers but this time 4 collected and 3 mature. All 3 fertilised. All 3 to blastocyst. Think it was AA, AB and a BC. Transfer still painful. BFN.

Then had all the hassle with not getting lining above 5.5mm in medicated cycles (often closer to 3-4mm) leading to cancelled cycles and the biopsy and hysteroscopy. Then tried natural and lining got to around 6.5mm for these. Did two natural FETs BFN. We added Lubion. Last FET we tried pred and clexane 20mg but only from ET day.

Cycle 3: DHEA 12 weeks before. 450iu FSH again. Still same number follicles. Lining to 8mm finally with viagra pessaries. 4 collected, 3 mature. 1 good quality blastocyst, 1 poor quality blast that didn’t make it to freeze and 1 that arrested. Did pred (10mg from day 5 up to 20mg from EC) and clexane 40mg from earlier in cycle this time. Faint positive day 8, BFN by OTD day 11 post transfer (if you looked with eye of faith still something on first response but standard test crystal white).

I haven’t tried Lupron suppression of endo before transfers yet as concern will be about affecting my ovarian response even more than already poor, while I may still need to stim quite soon after.

Sorry that was long. Any thoughts or advice appreciated xx

Oh and anyone had experience with Access packages? Thinking might go for 2-3 multicycle package. I had thought about batching (obvs not possible with packages) but not sure now, I make so few eggs anyway and the package will make it a lot more financially viable to do another 2-3 cycles.

@Enfys23 I had the access 2 cycle package and would do that again. I looked into Manchester fertility, they do a lot of natural modified cycles there, I think they open 7 days a week which is ideal for this type of cycle. I would encourage you to try a low dose stims natural modified FET in the future. Do you have any embryos remaining? I think trying a more gentle embryo creation cycle like they do at create would be a good idea and lots of people on Mumsnet swear by it. With raised autoantibodies I would look into LDN if I were you, I'm on it. Have you considered seeing a RI like Dr Gorgy for an immune protocol? What about optimizing Progesteone, best thing to be on is prontogest PIO I bought an autoinjector to inject it.

Hey @Enfys23

I am just so sorry to hear of BFN and totally admire yours and DH commitment and continuing on. The faint positive must mean you’re heading in the right direction. Will you have a follow up with your clinic? Perhaps moving clinic could be a nice refresher if it isn’t too much stress and admin.

Forgive me if you’ve already said this but have you looked at your endo? Could it be worth getting a lap?? I haven’t had one yet but also have pelvic endo and Adenomyosis which I have a feeling is getting in the way of implantation and causing chemical pregnancies.

They’re very expensive but perhaps cheaper than batching.

I don’t know anything about batching or access packaging, sorry.

are you based up north? I have a friend that used create and was successful 2nd time after lots of failed IUIs. But I couldn’t recommend them myself- I’m down in London you see.

sending you lots of love and productive vibes xxxx

Thank you @Gardenlady543 will def look at progesterone and LDN. No embryos now. I did like the fact Manchester Fertility are open 7 days. It’s really hard to choose clinics as all seem to have issues! But it does sound like they monitor more than mine did. I’m definitely going to look at an opinion from a RI, hopefully they’d work with my more local clinic. I don’t think I could add stress of further travel or travel abroad to the equation especially as don’t have the most flexible job.

@Sar1010 thank you, yes based up North. I’ve been told so far that best approach for me due to the rapidly declining AMH (due to endo too prob) is to focus on the IVF and that surgery for endo is unlikely to change my outcome. I guess with moving clinics and a new pair of eyes I may get a different view on it. I have no doubt my pelvis is completely toxic to anything that tries to make a home there right now!!

@Enfys23 so I would recommend Dr Gorgy in this situation, I'm also nowhere near London and they work with me so I don't have to travel too much. All appointments can be over zoom. When I need blood tests they arrange for the kits to be sent to me so I can take them locally and send them back to the lab. I did need to travel for LIT (Dr Gorgy is the only person in the UK to do this and most countries don't offer it), I also went down for IvIg and LIT with a positive test. If your clinic are against immune stuff, Dr Gorgy will prescribe it, prescriptions will be posted to you and you can get the meds locally. It's likely he would want to start with a number of blood tests and a endometrial biopsy to look at Nk activity.

I think for embryo creation you need to look at clinics that specialise in DOR that are local to you. Once you have the embryos you could look at changing clinic for transfers.

Thank you @Gardenlady543 really helpful info 🙏🏼

Hi @Enfys23 I'm glad you and dh are on the same page with your next steps.
I have low amh (was 5 in 2020, so its probably much lower now) and I like Create's approach with mild ivf. First round was with 225 bemfola and we got 3 fertilised and 3 top quality blasts from that (and 2 pregnancies, 1 was definitely healthy chromosomally).

Second round I don't really count as was low dose stim of 75, then 150 and although we did convert to egg collection and got 3 they didn't progress well and got 1 morula. But I'm open to trying the 225 dose again.

I've only been to Create but they're open 7 days a week and I find really accessible and approachable. We're considering a 3 cycle package with them which seems reasonable cost wise, with immunes on top. I don't even know if we can create embryos anymore but feel we need to try before we walk away.

With the immune stuff, it depends how far you want to investigate it and how much money you have to put into it. Initial tests are around £3k and we're about £40k in now with no positive outcome. We know where we've drawn the line now and I'm not open to further immune tests with other doctors now, I'm satisfied I know what we're dealing with and comfortable with the treatment approach with my RI, but everyone is different and you'll have your own threshold of what you are happy to do.

Sending you lots of love ❤️ xx

Super helpful thank you @VenusStarr you’re right and we are really weighing up what we can afford. We’ve just bought a house and DH trying to set up business so he’s at home more, so challenging times though I know we are luckier than most.

@Enfys23 I'm so sorry, it is just so shit isnt it. We've never had positive either with over 30 eggs but shitty embryos and only managed to transfer 2 none of which stuck. We've just done immune stuff, recurrent loss blood tests etc and ema/Alice at Dr gorgys clinic. My 1st clonic classed me as reduced ovarian reserve purely because I needed high stims and didn't respond as well as they thought I would, poor quality eggs, possibly feel the approah was completely wrong but knowing where to go is so overwhelming. We are also in the North sland don't know what we're going to do yet- our material, donor and depends on what comes from recent tests really as i have endo, pcos and we have severe mfi. Care has a clinic at Leeds I do believe as well as Manchester depending on where in North you are.

Anyone got any recommendations for clinics that do well in the DOR side of things for @Enfys23 and also cheekily myself?

Hi @Enfys23 I don’t have much to add on top of the others suggestions. If you’re bleeding early I would check progesterone levels throughout the TWW and recommend having progesterone in oil injections on standby. I’d also consider asking for letrozole to be added to your protocol. I also have low AMH and had my best responses in terms of both eggs and embryos when taking letrozole alongside Stims.

id also want to discuss the potential impact of the endo on implantation. I know a girl who spent 5 years doing ivf and only got pregnant after having the surgery to remove endo. She was on a clock to go for another before it grew back and so when her little one was 3 months she did a transfer and is now 7 months pregnant with her second. Again this is anecdotal but wild ride fertility on insta did something similar with her first.

@Enfys23 I think you need a clinic with more monitoring. CRGH are excellent at monitoring and they do Access Fertility packages, but they are based in London. I live in Plymouth so I had to do lots of travelling.

Oestrogen priming might be a good idea but without dhea especially if fsh is not that high.

@kerrym87 my friend had excellent care under Dr Gudi for DOR, but he's London based as I expect many of the other specialist clinics are. He would scan my friend every 2 weeks I think for free and only start stims when there was a good baseline afc. He would do both follicular and luteal stims.

@Enfys23 on the lines of what @Dochas12111 is discussing I'm in a number of groups that say if you have surgery for endo go to a Nancy Nook surgeon.

I am so overwhelmed by how wonderful you all are. Thank you for all the advice and ideas. Definitely things for me to take forward and make sure are addressed @kerrym87 @Dochas12111 @2021ivfagain @Gardenlady543

@Enfys23 Also, another thing which is good is zomacton. It’s hgh and it boosts follicular growth. Oestrogen priming allows for even growth so all follicles start at same point. With progesterone, it’s best to be on injections and cyclogest or crinone.

Thank you @2021ivfagain I’ve heard about HGH will have to look into it a bit more. I definitely think a clinic with more monitoring will help as currently been hard to know for sure what my progesterone is up to.

CREATE nearest me seem to have more limited opening hours so makes me lean towards Manchester Fertility with the 7 day opening. Guess just need to go and ask lots of Qs.