I'm going through my 7th early loss at the moment. Every time I conceive the doctors just watch as I miscarry again knowing my levels drop. I was told they can't even confirm the pregnancy until the early scan after week 6 and only then they would consider giving me medication to support the pregnancy. But if they are not going to help me maintain the pregnancy I don't know how to keep my hormone levels balanced until this scan which is done after week 6. And I will be 6 weeks tomorrow so idk why they can't at least look into it. I tried getting help from GP, EPU, Gynae and my Fertility clinic but they all just watch and then ask me to start over again next cycle.
I am so tired of going through the same loop and honestly I'm struggling with ptsd as well. They are refusing to acknowledge there could be an issue as mine and my partners results came clean. Another lady on here suggested a sperm dna fragmentation test which I inquired about but I was dismissed saying if the sperm analysis is clean then there is no reason to take that step. And according to them they don't need to do further investigations because the miscarriage related tests were normal. But if everything was normal why would my levels start dropping randomly?
Even this time I was testing regularly until the test appeared to have gotten much lighter overnight for no apparent reason. I have added the picture here for your reference. The test on the top is just from the previous day with fmu and the test on the bottom is taken 24hrs later with fmu. I begged EPU to do bloods once I saw the line had gotten lighter and turns out it's at 21 meaning it's not viable again. It just doesn't make sense. I'm losing my mind without any closure and they just don't seem to be bothered about it. As I am typing this post I'm mentally ready to feel the bleeding any time now. I just want to know what's wrong with my body so that I can move on to the next step but i don't know what to do to get them to help me.
Please could I get your opinions on this. Any info would be appreciated. TIA 🤍
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JulieMS
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So sorry for your losses and everything you’ve been going through. I’m not clear so hope you don’t mind me asking, but are these IVF pregnancies? I’m really surprised that after so many losses, no one has offered any further examinations to understand what exactly is going on. Have your progesterone levels been checked? It may be working looking into karyotype testing of both you and your partner too. There are many, many tests you can explore xx
These are natural conceptions. Since the basic tests they did on both of us are clean they just called it unexplained infertility. They checked my progesterone levels once on day 21 which was at 43. And the thing is these are losses for me but they don't even count the chemicals because they don't have any evidence that ever happened. So as far as they are concerned it's my 2nd miscarriage in a year.
Hey they did day 21 progesterone test only once on my first cycle on letrozole 2.5 mg and said it was all good. Didn't bother repeating it the second cycle not sure why. I think to them we are just a young healthy couple having bad luck xx
Jumping in on this as the general dismissal of progesterone makes me a bit cross - it can be way more complex than just a day 21 can show. The day 21 is a basic does it look like you ovulated test. The levels can drop massively straight after and then you may not have enough to sustain implantation and pregnancy. Your body can also not react as it should and start to shed the lining and bleed even with good levels. The latter is what happened to me for years and no-one took it seriously. So in particular if you have spotting before a period definitely look into this, or if you have or have had endometriosis you can have oestrogen dominance/progesterone resistance (again, I had this even though my endo had gone) and this usually means you need more and different forms of progesterone. At the most basic level they should check your progesterone on the day of transfer and ideally be trying different forms of progesterone if there's any indication it's not being abosrbed, like low blood levels or spotting (they normally start on cyclogest/anal but others forms can be better absorbed by vaginal, lubion and/or intra muscular). We were also put into the young healthy couple having bad luck category - for the best part of 7 years - and it wasn't until I started having bad responses to IVF, spotting, losses and I just kicked off, basically, that I actually started to get some dedicated attention. It doesn't mean everything can be sorted but I'm about to have my second baby in 3 years so I struggle to believe it was just bad luck all that time.
Congratulations this is such good news I needed this today 🥹❤️ I really hope it all goes well for you and you have a healthy baby.Yes I believe they didn't look into the progesterone angle and just assumed my body would be able to handle it but I was on the pill for 8 years so I believe my body is confused and brings on the bleeding even when I conceive. This is what i said before as well but it's not like they listen until someone kicks off. Even after the hycosy the doctor was like you have healthy eggs and a high egg reserve so your ovaries so that's proof that conception part is not really the issue. I have kicked off today and emailed them in a mildly threatening manner. I included my solicitor and the health outreach team cuz in my experience feeling threatened is what gets them to treat you right. I have told them not to contact me until they have a revised more appropriate treatment plan for me. And I told them I blame them for putting me through this again xx
Thank you. Yes I was on the pill for 15 years - it treated my endo but I do wonder whether it also had some consequences. My AMH was through the roof and I had masses of follicles so was being predicted 25 eggs, OHSS... and literally nothing happened on my first round. Then they had to tweak the meds a lot the next time. Ultimately it worked but it took a long time to be listened to and I feel like I was put in the unexplained camp and one to deal with later category. Progesterone support is not complicated, expensive or risky so it should just be an easy one to address and if it's nothing to do with progesterone, nothing lost. Well done on kicking off - I hope you now get the service you deserve x
I am so sorry for your loss. After this many losses you certainly qualify for further investigation. If they won’t listen then get a second opinion. I would also recommend looking into Tommy’s charity and Siobhan Quenby’s recurrent miscarriage research clinic at Coventry. You need answers before facing anything else. Take care of yourself as you try and manage the grief from this loss.
We’ve had an early loss but mainly recurrent implantation failure (and then an ectopic pregnancy) - off the top of my head we’ve had sperm dna fragmentation (despite normal semen analysis as this doesn’t mean there isn’t a dna fragmentation issue) and karyotype done for my DH, and for me a whole lot of testing including karyotype, thrombophilia and autoimmune screen (found thyroid and Antiphospholipid antibodies which can contribute to recurrent miscarriage and recurrent implantation failure), endometrial biopsy to rule out endometritis and also via biopsy the Warwick research clinic which found skewed NK cell population in endometrium (again can lead to implantation failure and miscarriage), tubal tests, MRI pelvis and hysteroscopy. I’m not saying you need to have all these things done but it sounds like you need clinicians who are going to listen and thoroughly investigate so that you can feel no stone left unturned.
This is very informative thank you. The worst part is they don't count my chemicals because it's failing so early way before they even agree to do my bloods. So to them I've only miscarried twice on paper. I will definitely be asking them to look into these things you have mentioned. They just very casually said unfortunately 70% of the cases are unexplained infertility so all they can do is help us keep trying. But I have no problem conceiving. Maintaining the pregnancy is what i am struggling with.
That’s really not on. The criteria for referral to NHS recurrent miscarriage clinics is miscarriage of a pregnancy proven by positive pregnancy test - there is no criteria on number of weeks or ultrasound or blood confirmation. You by far exceed the criteria with 7 losses. Even if they “only count” (which is wrong) 2 miscarriages, you still meet the new RCOG guidance released last year which advised clinical judgement in considering investigation of 2 non consecutive losses (don’t have to be one after the other), and that judgement should factor things like a suspicion of an underlying cause, age, and and IVF. I think you have more than enough grounds to seek more help.
You might find it useful to contact Tommy’s charity for more advice and support as well.
This is very informative. I will definitely throw these in their face when I demand them to do further investigations on Monday. Really appreciate it. Xx
I would definitely second the recommendation of the clinic run by Tommy's with Warwick University and Coventry hospital, I saw Dr Brosens who was brilliant (my issue was mainly implantation failure, but also early 'chemical' loss). You definitely deserve some support.
Yes this would be ideal to try if I still don't get the support after I kicked off today. I'm waiting to hear from them. I'm hoping they change the treatment plan for me because they are the nearest clinic so it's more suitable at the moment xx
Also wanted to add that I don’t know if it’s helpful but there really is nothing you or anyone can do now, so definitely go gently on yourself and please don’t place any blame on yourself. Once the pregnancy is miscarrying, and the HCG (pregnancy hormone) levels fall, nothing can be done to save the pregnancy sadly. If HCG level is staying okay but someone has some bleeding then if they know the pregnancy is in the womb from a scan after 6 weeks gestation (this is called threatened miscarriage, and they scan to make sure not an ectopic pregnancy) they will treat with progesterone/increase dose of progesterone in case of IVF pregnancy. But once HCG (the hormone tested on the home pregnancy tests) falls there is no way to correct this. I hope that’s helpful.
Yes i completely understand this and accepted this after my first miscarriage. Back then at first I thought they could do something but then after looking into it I understood how it all worked so I learnt to let go when this happens. And I make sure I don't blame myself because I do everything I can before it happens. Every single time. I ring whoever I can think of repeatedly until it fails. So my conscience is clean. My babies know mama tried her best. Thank you for your support 🤍
My route has been IVF rather than natural, but my understanding is there is very little if any downside to having Progesterone support right from the start of a pregnancy, especially if there have been previouse losses, and I believe there is even NICE guidance about the benefit of this. I do hope you're able to get the support you should be getting from your GP.
Yes i understand what you mean. I will be pushing them to prescribe me progesterone for my next cycle. So far they just put me on letrozole 2.5 mg from day 3-7 on first cycle and when it ended in a chemical did the same with a trigger shot of 5000 dose when the follicle was mature. I feel if they had given me progesterone it would've helped maintaining my levels xx
Hi JulieMS, I’m so sorry for your losses. I agree with the comments above about contacting Tommy’s and being referred into a miscarriage clinic. As I understand it, repeated chemical pregnancies and miscarriages are typically an indication of an immune related issue, caused by high Natural Killer cells, cytokines or anti-nuclear antibodies, which was the case with me. This can be treated either by Dr Quenby at Coventry or Professor Shehata at Epsom and Hellier and you can be referred into either on the NHS. Too many doctors seem to put things down to bad luck when they could be successfully treated by the right doctor. Best of luck.
hi JulieMS, I’m really sorry for your losses. I had four natural pregnancies, 3 early missed miscarriages and one chemical so I can relate. We have done all the tests, karyotyping, sperm DNA fregmentation, antiphospholipid , NK cells etc… most of the results were normal but the doctors recommended that we do IVF because the early losses can be a result of chromosomal abnormalities due to egg quality. I’m 39 now but was 35 when we started trying so I’m not sure how old you are but this could be another reason.we are doing ICSI with PGT-A testing and have one embryo in the freezer ( I’m also difficult to stimulate so only produce one egg per cycle).
With my last natural pregnancy my doctor (private) also gave me progesterone pessaries and aspirin from week 4 but unfortunately it didn’t help me.
I agree with the others above please do go get a referral to a recurrent miscarriage clinic ASAP and I’ll have my fingers crossed for you! X
I was 28 when I came off the pill and started trying and I just turned 30 this year and my husband is only a couple years older than me so they said it's not because of our age. Your case proves that they could prescribe me things to at least try and maintain a pregnancy so it is very helpful to know this thank you xx
Hi lovely, I’m so sorry you've gone through this so many times. It’s really unacceptable that yours doctors haven’t been more proactive.
As endofitall mentioned, you more than qualify for recurrent miscarriage testing through the NHS. The “standard” miscarriage tests include blood tests for thrombophilia, antiphospholipid antibodies and lupus anticoagulant. You can and should also push them for an ultrasound of your uterus and fallopian tubes, and karyotype testing for both yourself and your partner. Depending on how you get on with all that, you could also look into Fertilysis which is a mail order testing service. They have a Recurrent Pregnancy Loss test panel which covers additional things which may be relevant. DNA frag tests aren’t ever covered by the NHS so you’ll need to go private for that regardless. Fertility Solutions (clinics in London and Bucks) offer the DNA frag test without a referral.
Thank you for this it's very informative. The only thing they did was taking 3 tubes of bloods for basic testing and a sperm analysis and a hycosy. There's a lot more they should be doing from the info I'm getting from you ladies on here xx
I’m so sorry you’re going through this. I had 5 chemicals and a blighted ovum all natural conception. I got my gp to refer me to Siobhan Quenby at Tommys in Coventry and had lots of tests done with them although nothing came back obvious. I then started ivf and did dna fragmentation tests which were really high so did ICSI and chromosome testing of embryos. Also did immune testing which showed high th1/th2 ratio so was put on immune protocol and other testing which showed mutated gene PAI1 which affects clotting so had blood thinners. My second transfer worked and I now have a little boy. It was a really long journey to get there and I also have ptsd as a result of all our losses. I really hope you can get referrals sorted and I really hope you get some answers soon. Be kind to yourself xx
Like others have said, this doesn't sound acceptable, or normal. My consultant said with unexplained infertility it is often a numbers game but after my second early loss I made him go through every possible test and further investigation with me as I hated the idea of wasting embryos if there was something wrong with my womb environment or hormones, or to be going through the trauma (and cost) of transferring non-vibale embryos. Similar to what you've been told he said due to our ages he doubted testing the embryos was relevant or worth it, he didn't really consider NK testing worth it (he said there's usually other symptoms and syndromes associated with it), and I'd had two laparoscopies and a hysteroscopy, plus thrombophilia panel and all looked normal. So I guess check about all those things (the blood tests are cheap, or your GP may do them). All we came up with was progesterone because I'd bled before OTD and had a load of other symptoms for years that fit, even though my day 21 results had always been high. Changed to utrogestan and lubion. I think ask your consultant to go through everything with you and/or seek a second opinion - sometimes you have time pay for the consultantation if it's an IVF clinic, but often redeemable against treatment. Or as others have said, get a referral for recurrent miscarriage - mine now count as 3 on my records and it doesn't matter how early, even though there is a tenancy to dismiss them if they were before 15 weeks.
Thank you for your comment. Yes I do believe they dismiss what's in front of their eyes just cuz the usual criteria doesn't seem to fit etc but I will definitely be pushing them into doing further investigations this time and if not I'd be forced to switch clinics xx
Just wanted to say thank you to all the kind lovely women who left comments on my post. Please know that you have comforted me more than you'd ever know. I really needed that. I only discovered this group very recently through a lady on another site. I don't remember who it was but I will be forever grateful because I didn't feel as lonely as the other times I miscarried. I feel stronger because of you all. And I've gotten so much info from different perspectives which is so helpful. So thank you from the bottom of my heart.
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