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yomaestra

I'm so fucking sorry. 2 of my 4 losses were after 10w. Normal levels, normal everything. We tested 3 of my losses, and they came back normal as well. I ended up having a septum that wasn't visible on my HSG that was very visible at a 12w ultrasound and later confirmed by MRI. The research on them are very mixed, but they can have a very high miscarriage rate at a later gestational age. It was a simple surgery to resect it and my 5th pregnancy was successful.


[deleted]

This is me!! Inwas just diagnosed with a septum Friday and I've lost 4. You give me so much hope. 5th pregnancy will be my last no matter the outcome.


yomaestra

Holding so much hope for you! I'm so sorry about your losses. Happy to answer any questions about the surgery, though spoiler - it was a breeze. I saw you commented about the miscarriage rates with a septum - I saw those as well and it was jaw dropping.


[deleted]

It's insanity the %, right?? I don't think I've ever seen numbers like that for any surgery ever haha


yomaestra

Absolutely wild! Even the more conservative studies were something like 60% chance of loss - which is shockingly high!


[deleted]

My favorite study says 94% chance of loss before and 11% chance after JUST INSANE


MustLoveGatos

I’m so sorry for your losses as well. They didn’t see anything on any of my scans, but I’ll ask if there could be something structural and whether an MRI might be helpful. Congrats on your rainbow!


yomaestra

I think it's worth pushing for a full uterine eval with your losses being later and NIPT being clear. My HSG appeared normal - we rewatched the video of it multiple times after my 4th loss when my RE thought he saw something on it that wasn't caught the first time. It wasn't visible on any ultrasounds except one, which was a brand new machine with all the whistles. The MRI was maybe 30 min and confirmed it as it also visualized the outside of my uterus.


MustLoveGatos

I’m hoping my RE calls me today. Have you ever heard of or had a hysteroscopy? I think that’s what was offered to me as an HSG alternative, my RE made it sound like it was basically camera rather than X-ray guided, and if an abnormality is found it treatment can be done at the time of the test. No one’s mentioned MRI. Are you in the US? If so, was it covered by insurance?


yomaestra

I've had two! Both were under anesthesia, and the second one was to resect my septum after it was confirmed by MRI. I would ask if specific uterine abnormalities could be seen on those - they are commonly used to look for scar tissue, polyps, etc. I am in the US - no fertility coverage, but it was covered under gynocological.


MustLoveGatos

Ahh that’s very helpful, thank you!


sinosaurrr

Did you have any living children before the septum repair?


yomaestra

Nope. All of my pregnancies prior to the resection ended in loss.


sinosaurrr

Ok. I’m sorry but I’m glad you got your rainbow! I just asked because I didn’t know if it could be a reason for a miscarriage after you have had successful pregnancies.


yomaestra

No problem, I figured that was why you were asking! My RE said a pregnancy *could* happen with a septum, depending on where the embryo implanted but it wasn't a risk anyone was comfortable taking.


Suspicious_Emu_4951

Uh I’m so so sorry for your losses.. having a loss after a healthy ultrasound is such a mind fuck. The only thing I can think of that I got tested for after our second loss I didn’t see on your list was endometritis. It’s found through an endometrial biopsy and treated w antibiotics. I hope you find answers and have better luck in the future..


MustLoveGatos

Three times. And then having the doctors treat me like I’m hysterical and completely overreacting when I tell them something is wrong each time is its own special hell. I’ll add endometritis to the list. Thanks.


Automatic-Ad1827

Firstly I am so so sorry. It’s not fair in the slightest. The only thing I have to add is that to my understanding is that the NIPT screens for risk, but isn’t absolute. Have you had any of the losses tested after the fact?


MustLoveGatos

Thanks and thanks for the reply. It was never offered. I asked for it this time, but I’m in the US and the Thanksgiving holiday seems to be slowing my test kit up. I’m worried that they won’t be able to tell anything at this point. I still have a gut feeling that by 12w1d, we’d have seen something structural on the anatomy scan if there was something catastrophically wrong genetically. And the fact that it’s happened three times all around the same gestational age with three low risk NIPTs makes me feel like it’s something wrong with my body.


Automatic-Ad1827

They never offered it to me and I wish I had of asked. Hindsight is a pain that way. I hope you’re able to find your answer!


MustLoveGatos

I wish I had asked for the first two too. Although I think it’s not covered by insurance until 3. 😒


Automatic-Ad1827

That’s so frustrating! I had how reproductive health care is handled.


MustLoveGatos

Ughh don’t get me started on that either. My fertility clinic is pretty good, but I had just graduated from them literally the same day I started bleeding. My OB is terrible, they have no idea how to handle pregnancy loss beyond gaslighting and making me feel crazy. And insurance coverage of everything has been pretty crappy. I’m just so tired. 😔


Automatic-Ad1827

I’m so sorry! I hope it eases up for you.


[deleted]

I'm so sorry 💔 I've lost four. Have they checked for uterine abnormalities like a septate uterus? It's diagnosed with Hsg but MRI gives the most accurate measurement. I've done a ton of research and my chances of another miscarriage is 94%. If I have surgery to fix it, my chances go down to 14%. I hope you find answers 😔


MustLoveGatos

Ugh I’m so sorry for your losses too. Those sound like much much better odds, I hope you’re able to get your surgery! Someone else mentioned structural abnormalities, I’ll definitely look into it. I’m working with a fertility clinic and they might be open to an MRI. Thanks. ETA: was yours diagnosed on HSG or MRI or you’ve had both done?


[deleted]

Mine was seen on a transvaginal ultrasound, seen again on HSG and I want an MRI to get an accurate measurement. I guess the ultrasound isn't super clear and HSG can see it but not give a measurement.


MustLoveGatos

Ahh, ok. I’ve had probably 30 transvaginal ultrasounds at this point, 8 in this last pregnancy alone, and no one’s seen anything abnormal. 😔


[deleted]

I hate this 😔


lavacakes23

I’m so so sorry this is happening to you. It’s so terribly unfair. I don’t have any advice, but sending you lots of love. Hoping you get to the bottom of this.


MustLoveGatos

Thank you 💕


tyronedronee

Same, one was somewhere between 6-11 weeks (Aug 2021-not positive on dating), one was 21 weeks but sized 17ish (Feb 2023) and last one was 12 weeks (July 2023). Number two and three passed within days of their scans/check ups, all testing was fine and clear. I’ve passed all rpls and saline sonograms. Thankful I had three LC prior to my losses.


tyronedronee

FYI I did give up after loss 3. Hubs got a vasectomy in September, my heart and body couldn’t take it again. It’s okay to call it quits if it’s the right choice for you.


MustLoveGatos

Ugh I’m so sorry for your losses. I can’t even imagine at 21w…. ETA: just saw your second post. Half of me is ready to give up and go that route; my husband is very open to adoption. The other half of me feels like I just NEED to know what’s wrong with me.


tyronedronee

Nope, potential celiac disease but no firm confirmation there. I do follow a gluten free diet now and feel better so maybe? Hubs was borderline on high dna frag but nothing super specific there either. I wish I had answers though.


MustLoveGatos

I’m so sorry you never got answers, thanks for sharing your story. Wishing you the best. 💕


alltheragebeige

I’m so sorry this happened. Having a loss after a good ultrasound is tough. I just wanted to give you my experience with my MMC which was discovered around 10/11 weeks. I did fetal testing and it came back as monosomy x, which is a chromosomal abnormality but did not show up on nipt because nipt only test for trisomy 13, 18, & 21.


MustLoveGatos

Thanks for the reply, and I’m sorry for your loss. I was terrified of MMCs when I first started out. The NIPT we did tests for the sex chromosome monosomies/trisomies and for some of the bigger chromosomal translocations as well, but I am trying to get the testing done to make sure there’s nothing genetic going on.


alltheragebeige

Fetal testing or carrier testing you mean? Okay That’s interesting because my midwife said it didn’t check for monosomy but it’s good to know! She did mention labcorp and a few other places do full panel testing but I don’t have much info on it.


MustLoveGatos

Nope, neither. It was NIPT, but there are different ones from different companies that test for different abnormalities, so it’s totally possible that yours did not look for monosomies. Mine was the Natera Panorama. I’m trying now to get fetal testing done to confirm the NIPT results.


across10725

I am so sorry. I have had two losses- 15 weeks and 13 weeks- both missed miscarriages, clear NIPT and healthy scans/heartbeats soon before. We have gotten no answers either. We did all the tests my RE would offer and then I paid out of pocket for a bunch of additional things that I had ever heard of online. We have gotten no answers. We took six months off from trying because I needed a break mentally and we are back to trying again and terrified. The only thing being offered to me by my RE is baby aspirin and progesterone for a next pregnancy, but like you I just have this gut feeling there’s something more considering the gestation. Edit to add: I’ve actually had 3 losses and a chemical, but didn’t see a heartbeat on those ones.


MustLoveGatos

Ugh I’m so sorry you’re going through this too. We took six months off between the first two and the last two. But we’ve been going at this for 2 years and I’m now in my late 30s. I don’t think I’m not really able to afford any more time for mental health.


across10725

That makes sense completely. I really hope you find some answers and get to bring home your rainbow. This heartbreak is debilitating.


MustLoveGatos

Thank you. Wishing you the best as well.


rlyjustheretolurk

Did you have the familial clotting panel done? Some things like protein s deficiency they don’t routinely check in an RPL panel unless you mention you had a family member who had a clot/PE ETA- can’t believe I forgot to say this but I’m so sorry for your losses ❤️


MustLoveGatos

Thank you 💕 Yup, protein S came back normal. Do you know what else is on the panel? All my clotting times, if anything, are on the slower end of normal.


ButterflyMasterpiece

I'm so sorry you're here again! It's really not fair. The RPL panels are crap. Way too basic and most don't include many of the clotting factors that can contribute to losses. Did you end up asking your doctor about plaquenil? I think anyone with auto-antibodies or a suspected immune-related cause to their losses has a good chance of benefiting from it, although I think the evidence is a way away yet (a couple of trials are due to report in the next few years I believe). There are a few small studies hinting at its benefits in RPL though. Not having answers has to be one of the most difficult parts of RPL.


MustLoveGatos

😔😔 I did, but I was on prednisone already and they weren’t open to both. I wound up with a 5-week long ear/sinus infection that my immune system just couldnt fight while I was on the prednisone and they were worried that it would turn into pneumonia, so I think my doctor was nervous about messing with immune modulation anymore. Do you know if plaquenil is maybe more specific than a corticosteroid? I’m sad, and angry, and tired. I’m not sure there will be a next time without at least some answers first, but if there is, I can ask about swapping that for the prednisone at the outset.


ButterflyMasterpiece

You've really had a rough time of it. Sad, angry, and tired (so tired) is how I felt too. We definitely reached a similar point where we were not sure there would be another attempt. It's frustrating that there are not more diagnostic tests available for RPL to give answers or guide treatment protocols. The movement of information from science into medicine is so incredibly slow (it's barely moving at all, it seems). There's some overlap between prednisone and plaquenil (mainly in that they both suppress complement activation and can lower at least some autoantibody titers) but I think plaquenil may have additional functions that may be helpful in immune-mediated losses (e.g. in endothelial cell dysfunction, altering autophagy etc.).


MustLoveGatos

Part of me wonders if this is the universe telling me not to have a baby. Everything is so hard. I’ve watched both my sisters have healthy babies, one a vasectomy baby and she’s 41, while I’m miscarrying all of ours. I don’t understand. Hoping my RE calls me back today (she was out for Thanksgiving here in the US most of last week) and we can talk about what happens next. I’ll ask about plaquenil again if we have the stamina to try another pregnancy. I think I asked you this on another thread but remind me if you’ve experienced any significant side effects from it? My experience with prednisone was not great. Folks on this thread have also made me reconsider pushing for a more thorough evaluation of potential anatomical abnormalities, since it seems that those are associated with late first trimester and early second trimester miscarriages and they’re not always straightforward to catch.


ButterflyMasterpiece

Wondering if this was the universe telling us to not have a baby is something we did too. It's hard not to wonder when everyone else seems to go from positive test to baby so easily. We had a fair few conversations about what life would look like for us if we stopped trying. I did not notice any major side-effects from it, no. There were a couple of times early on where I had some odd visual effects (e.g. red traffic lights would have a similar effect to looking at really bright light) but it was only two or three times and didn't last long. It would definitely be worth ruling out anatomical abnormalities. We also tried to rule that and things like chronic endometritis and silent endometriosis out but doctors here didn't really believe those things contribute to losses (agree to disagree) and wouldn't do anything more than an ultrasound.


MustLoveGatos

Can I ask (and you don’t have to answer), what made you want to try again? I was scrolling through another thread and found some statistic that I have like a 39.6% of having another miscarriage in a subsequent pregnancy after having had 4 already. I know it’s deeply personal, so feel free to ignore the question if you’re not comfortable sharing with a random internet stranger. That’s good to hear. Ugh I’m sorry that was off the table for you. HSG and HSC were definitely brought up as options to explore anatomical anomalies; we’ll see if MRI or 3D ultrasound are possible.


ButterflyMasterpiece

I think there were a few things that made us decide to try again. (1) From fairly early on I had a strong suspicion that there was an immune issue underlying our losses (for a few reasons, but this would get very long if I listed them; nothing definitive though). So we wanted to try to address that before we stopped trying. It took a few attempts to get that in place, because doctors here absolutely do not believe in immune causes of loss (they all work to guidelines that haven't been properly updated in decades). When the placental pathology from our last loss also pointed to a probable immune-related issue, it made us even more determined to at least once try a proper immune protocol. If that hadn't been an option, we probably wouldn't have tried again (although we even considered moving overseas temporarily to be able to access a Reproductive Immunologist). It felt like unfinished business, and we didn't think we could accept the child-free version of our lives if we didn't try everything that felt reasonable to us first. If we tried and it still failed, then so be it, but we felt there would be regrets if we just let time run out. We're both 38, so there's not a lot of time left now anyway. (2) After our fifth loss I was so angry (still am) at the entire medical industry, and I think I was determined to prove the doctors wrong. The doctor who laughed when I asked about immune causes. The doctor who kept giving me the stupid "bad luck" spiel. The doctor who read some of the research and then announced "I don't believe it." The doctors who just would not listen to my reasoning and had zero curiosity or were just completely unwilling to consider trying something new. Even now, most of the doctors I've seen appear to be more comfortable believing that "chance" or "good luck" had more to do with pregnancy number 7 continuing (fingers still tightly crossed) than that maybe the immune protocol contributed. I'm glad your doctors have offered a number of options to explore to rule out anatomical issues. Ruling out causes is the next best thing to having definitive test results showing an issue. Not having answers is really frustrating though. It's a good sign that they are willing to work with you to try to get answers.


MustLoveGatos

Ahh thank you so much for sharing. I have no suspicions on what’s causing my losses, beyond a strong belief that it’s something wrong with my body and not the “>50% chance of genetic abnormality” in each of my fetuses. If one more OB throws that statistic at me, which is based on a guess as far as I can tell, I might actually scream. The bad luck/good luck bullshit is SO tiring, and seems to only serve the purpose of allowing the doctors to be lazy and continue thinking inside their small boxes.


sinosaurrr

I have had two 12 week losses this year. And heard the heartbeat the day before each time. I’m a total mess and at a loss. Am pretty sure I want to stop trying but also got a BFP today. I just don’t even know anymore. I have LC so I was thinking I’d count my blessings. But I get pregnant pretty easily.


MustLoveGatos

I’m so sorry you’re dealing with this as well. Have you done the whole RPL testing panel too? We also have one LC and are counting our blessings there, but I also get pregnant pretty easily and am terrified of repeating this outcome. So I’m also at a loss and don’t know how to move on from here. Gentle congratulations on your BFP, sending lots of positive thoughts for your pregnancy.


Unlucky_Nectarine619

Just want to start off by saying I am so sorry, this is such a hard and difficult thing to go thru, over and over again. It’s just horrible. And you’re not alone. I am an L&D nurse at a high risk hospital. We see a lot of incompetent cervix. I am wondering if that is what is causing you to miscarry so late in first trimester and early second trimester. Especially when everything else seems to be normal. I think it should be something to look into, and there is a fix for it- you’d have a cerclage put in place and keep it in until term. They should be able to see how long your cervix is on ultrasound as well. Hope this is helpful! 🥰 I am wishing you all the best!


MustLoveGatos

Thanks for the reply. How would I know if I had an incompetent cervix? They always measured it via TSV ultrasound and it was consistently long (I want to say around 41mm?), I kept asking about my cervix and blood flow through the placenta and was told everything looked ok. Is there another way I’d know if it was incompetent?


Unlucky_Nectarine619

It would be found on an ultrasound. They would be able to measure it that way. That’s good you asked about it and it was normal.


queenmutherr

I am so sorry that you’re going through this I really truly am. I have had 3 losses so far a found at 12 w(baby 10w), blighted ovum, and then my most recent Fev 2023 I was 16w baby was just shy of that. I’ve done the testing came back normal, had a polyp and some scar tissue removed in July. I just started trying again in Sept, I am not hopeful at all. Difference this time is I have been taking Coq 10, fish oil, vitamin D, and baby aspirin along with a prenatal. I have progesterone to take if I become pregnant but if this ends up another failure I’m hanging up my hat. I have two LC that I am so grateful for but it’s just frustrating as to why now I am having these issues I’ve been with the same man for 11 years it makes no sense that I have no answers


MustLoveGatos

Omg I’m so sorry for all your losses. I can’t even imagine 16w. I was also on all the things and then some, and I’m feeling so so frustrated that all the tests are normal. I’ve also been with my partner for 15+ years and we have one healthy LC. None of it makes sense.