u/ngibbs105

A year ago today on my beloved grandmothers birthday we said goodbye to our first and so far only child, our daughter Mira.

Our story was so rare, still no other documented cases with all my daughter’s findings. From there another ultra rare genetic mutation that she inherited from me that I have no symptoms of. We’re the only ones in the world with this documented mutation. My mother and brother would later test positive too, then I would find out I have ashermans syndrome from calcified RPOC after our TFMR.

We started IVF, which has dealt us nothing but blows. Until recently when we landed 3 embryos. We’re gearing up for a potential FET and hoping we can give our daughter a sibling soon.

I truly cannot believe everything this last year has dealt us. It is unfathomable, when I think about it I genuinely feel I’m reading a made up story. Thing have been so hard and I am not the same person I was before this, I never will be. But I am finding my way slowly.

The lead up to this day was awful but now that it’s here we’re going to celebrate you the way you deserve. We love you so much Mira, happy birthday ❤️

Anyone get cleared, have “normal” bleeding for 9 months and then have a sudden loss of period again?

Diagnosed ashermans after having dark brown spotting for 2 days instead of periods after a second trimester d&e last year. One hysteroscopy in Jan, periods returned. Second in March and found and removed RPOC. No scarring removed in Jan had returned. Clear SIS 8 weeks post surgery. 2 day red bleeding heavy flow periods until this month when my period just won’t come. Temp dropped 4 days late, then have had light red spotting saturday morning, brown spotting Saturday day, heavy red spotting Saturday night, nothing Sunday, light red spotting monday.

I was meant to move into a FET so I do have a hysteroscopy scheduled next week, but I had scheduled it with my RE instead of my specialist because I thought it would be a check or clean up not a full surgery and now I’m second guessing everything and if I should just go see Dr. I and delay a FET? Or would it actually be better to get the hysteroscopy done and immediately move into a FET no matter what?

I was struggling with thin lining prior to this period so maybe my ashermans had returned invisibly and is just now becoming blocking? I don’t know what to think.

I'm about 11 months out from my loss. Generally, I'm doing a lot better. But you all know the grief comes in waves.

I'm having a tough weekend. My husband and I moved to the suburbs last year a few months before I finally fell pregnant. Now we're in the suburbs and we're the only ones without a baby. Sometimes I feel really stupid about that, like what are we doing here? But then I see my friends moving to the suburbs pregnant and they all get to have their babies and I just remember that was us too - only it wasn't because we don't get to have ours. Now we're just here and everyone has a family but us and we have an empty nursery.

Gosh, I feel dumb. I'm sure this feeling will pass but for some reason it's the feeling that's most top of mind this weekend.

I have confirmed stage 2/3 endo removed end of October 2024. I conceived 7 months later but had a 20w TFMR. I later found out this was genetic so moved to IVF for PGTM and also found out I had RPOC that calcified leaving me with moderate ashermans. Isolated on my left side. I’m clear after 2 hysteroscopies.

Like many with ashermans I now struggle with thin lining. During stims and a completely natural month my lining hovers around 3-4.5. It has gotten above 5 in one stim cycle with lupron but has really stalled out. It seems that it doesn’t really respond to estrogen at all.

I’ll be doing another hysteroscopy but I finally have PGTM embryos so I’m thinking about a transfer and my doc said that he probably does not want to suppress me for my first transfer because it thins out the lining. But with known endo this makes me nervous.

Has anyone struggled with thin lining and decided not to suppress during IVF? How did it work out? Wondering if I should ask to add on an anti inflammatory protocol to the FET if we don’t suppress.

Thank you!

I’ve done 2 retrievals so far and always have tons of “empty follicles”. Looking for some advice from others as to what we might change. I am 33f with mild endo (stage 2 excised 1.5 years ago) and 1.78 AMH. 1 natural pregnancy that ended in TFMR at 19w last year. Doing IVF for dominant genetic condition that we discovered post TFMR.

First stim was microdose lupron with 325 follistim and 150 menopur. Triggered with 10k HCG estrogen was somewhere around 3000. Last scan showed 12 follicles, 8 looked mature between 18-21. Triggered that night day 11 of stims. Retrieved 1 egg. Egg was mature and made it to blast and semi passed PGTA testing as a LLM but failed PGTM. Doctor told me he thought it was an egg maturity issue rather than quality but they did everything to flush those other follicles and saw nothing.

Just did my second retrieval. Switched to antagonist and did 225 meno and 225 follistim and dual trigger 10k hcg and 80 units lupron with ganirelix starting stims day 6. Last scan was on stims day 10 and largest was 24. Triggered next night day 11 of stims again. Retrieved 9 eggs 9 mature 8 fertilized and waiting on blasts. Better results for sure but the thing is, I had 20 follicles with 16 above 13mm day before trigger and my doctor told me he was expecting 16 eggs. So just near 50% empty follicles which seems high from what I’ve seen on this sub.

Both times I’ve primed with estrogen. Tried BC for second retrieval but I ovulated through it so went back to estrogen. Also did testosterone gel for 2 months between first ER and second.

My doctor is great so I know he’ll continue to make changes but at my clinic I’ve found I really have to advocate for myself so was hoping to see if others suffered from this and what helped. Some observations I’ve made
- my primed AFC is always 9, but 12-17 otherwise. Maybe a straight start would be better? Not sure this helps with this issue
- my body seemingly only releases mature eggs from follicles? Not sure this is a thing but I have 100% maturity rate through 2 ERs … not saying I want immature eggs but has anyone else seen that literally an egg will only release for you if it’s mature?
- also feels like my follicles have to be really large to yield eggs?

I know quality is better than quantity, but this empty follicle rate seems really high and I am somehow worried this an egg quality issue? Dealing with a dominant genetic disorder makes me desperate for all my eggs. Any and all advice on what I could suggest changing would be appreciated!

Did anyone else not get ashes? I lost my daughter at 19w last year and I was in a total daze when they were asking me all the questions, I got footprints but didn’t get ashes and it eats me alive. I also had a D&E so didn’t get to see her which I deeply regret.

I know I would have regrets either way but it feels like the combo of not seeing her or having her physical remains is just very hard to overcome. I feel like most people get them from what I see on this sub and it makes me feel guilty like I wasn’t a good mom to her.

For those who are further along in their journey / didn’t conceive easily after TFMR, how did you navigate the negative feelings with TTC? I truly feel like I’m out of time and this journey is over for me.

I’m 9 months out, almost 10, and going through IVF as we found out our TFMR was due to an unknown dominant genetic mutation I have. I feel like I’ve totally lost this timeline I attached myself to. We started trying just after I turned 32 and I was due to have my baby at 33. Now I’m about to turn 34, be one year out from my TFMR and I feel further away from pregnancy than ever before.

IVF is going really poorly for us. I almost feel like going back to trying naturally but either way at this point I’d be extremely lucky to have a baby at 35 and I just can’t wrap my head around the loss of having a child at 33.

I guess just looking for those who had to navigate longer TTC timelines/IVF after TFMR and any success stories as well. Part of me feels like my pregnancy with my daughter was it and it will never happen again for me.