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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask how doctors can give such conflicting advice on recurrent miscarriage hoping someone can help me

53 replies

ivfregret · 13/05/2023 21:45

I was previously under a fertility doctor whom I paid for surgery and that didn't help still miscarrying. He told me to go straight to IVF

I then spoke to a consultant at Tommy miscarriage clinic who said try IVF in 12 months.

I've spoken to about fertility doctor after my fifth miscarriage who is saying IVF is unlikely to help and I need further testing.

I am really unhappy how can so many doctors be giving such vastly different advice, IVF either can or cannot help recurrent miscarriage?

What should I do?

OP posts:
Sissynova · 13/05/2023 21:52

Is the 3rd doctor private or nhs? To me it seems like the first doctor doesn’t really give a shit whether the IVF will work for you or not and is just happy to get a paycheque.
The 3rd doctor seems the most reasonable. IVF is a brutal process and it’s a waste emotionally, physically, financially and time wise to go through it if it turns out there is a problem underlying that will result in miscarriage.
Further testing seems like the most logical option.

I am really unhappy how can so many doctors be giving such vastly different advice, IVF either can or cannot help recurrent miscarriage?

At the minute they don’t have much to go
off unfortunately and that’s the problem. If the issue is how the embryos form then that is solved by IVF in a way but if there’s an issue with you that makes it hard for an embryo to implant and thrive then unfortunately the same would be true for with IVF conception.

It’s not an easy road. I hope you get the answers you need and want soon.

Merryoldgoat · 13/05/2023 21:53

I sympathise but I have to solution or advice.

I was admitted at 38 weeks and saw 4 doctors over 6 hours who all had a different opinion on my treatment and no one knew wtf was going on. It’s exceptionally frustrating.

Skyla01 · 13/05/2023 21:55

Hi OP, very sorry about your situation. Don't have any specific advice. However sometimes medicine isn't black and white- it's shades of grey and hence why you might get different opinions from different specialists. Doesn't always mean one opinion is right and one is wrong. Still makes it difficult for you though, I'm sorry.

ISeeYouThere · 13/05/2023 22:05

Sorry you find yourself in this situation. I was where you are a few years ago. IVF won't stop you miscarrying. You can clearly get pregnant so the best way forwards is to have testing done on you both if you have access to a recurrent miscarriage clinic and also if you're far enough along when you have a loss on the fetus (via a D&C) and also decide how much more you and your partner can go through emotionally because it's a horrible road to find yourselves on.

I hope you get some good news soon

YouBoggleMyMind · 13/05/2023 22:08

Personally, I think more testing is the route to go.

khaa2091 · 13/05/2023 22:09

There is no evidence that IVF improves take home baby rates in women with recurrent miscarriage. I’m assuming that there has been no evidence of a balanced chromosomal translocation in you or your partner, in which case ivf allows only tested normal embryos to be transferred (and reduces the miscarriage rate).
The majority of women with recurrent miscarriage will eventually have a successful pregnancy, which may be ivf.

DifficultBloodyWoman · 13/05/2023 22:37

It depends on what is causing the recurrent miscarriages.

I had multiple miscarriages. IVF didn’t work for me. Some years later, I had a spontaneous pregnancy which ended with a take home baby who is currently wriggling on my lap.

IVF doesn’t offer guarantees. The odds are still alarmingly low. And it can’t fix all fertility problems. I think you need more tests to determine the cause of miscarriage before you spend a fortune on what is essentially a gamble.

Lotusflower16 · 13/05/2023 22:43

IVF doesn't help not miscarrying. You need further testing to identify the causes of your miscarriages: genetic, uterus abnormalities, immune issues etc.

ivfregret · 13/05/2023 23:18

Thanks for the advice and I agree with it all but I'm also just very confused as when I google it multiple articles say it can help recurrent miscarriage?

Has anyone ever used ivf for miscarriage? Why does it say it in many places if it's not at all useful?

So confusing

OP posts:
DifficultBloodyWoman · 14/05/2023 01:41

I can go into more detail than my earlier post.

I had multiple miscarriages. I had some tests that ruled out chromosomal issues as a potential cause of miscarriage. Because of my age and the fact that I was seeing a fertility specialist already, (a fertility specialist who was a gynecologist and an IVF doctor), I moved to IVF quite quickly in terms of time. Not quickly in terms of the number of miscarriages. I was able to get pregnant easily, I just couldn’t stay pregnant.

Recurrent miscarriages are a symptom rather than a diagnosis. They can occur for a number of reason including but not limited to chromosomal issues, incompetent cervix, Uterine scarring, etc, the list is long. And IVF can only help with some that.

IVF is fertilizing an egg in a Petri dish. The fact that it happens in a lab means you can pick and choose the best eggs and sperm. So if miscarriages are caused by poor eggs and sperm, problem solved.

But the perfect embryo might still not implant correctly. IVF is limited in helping with that. IVF doesn’t help if your cervix opens too early. Or if there are uterine abnormalities like many major fibroids. Or if your hormone levels cannot sustain a pregnancy.

Further testing is important to figure out whether or not IVF can help you. Otherwise, IVF is a really expensive crap shoot.

I liken the jump to IVF by the medical profession to someone with a hammer treating everything as a nail. If it is the only tool you have, you will use it to fix every problem, regardless of whether it is suitable or not. And for many people, they have heard that IVF can solve fertility problems when, in reality, it can only help with a few specific problems.

Achwheesht · 14/05/2023 01:46

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

TakeMe2Insanity · 14/05/2023 06:04

You need an ivf dr who is also a specialist at RMC. In principle if they find something wrong they can fix it at the conception stage or prescribe medication to prevent it after the implantation stage but a standard ivf dr isn’t the answer.

I highly recommend looking at fertilityfriends.co.uk as theres more groups of people with similar problems.

febrezeme · 14/05/2023 06:08

I used IVF after multiple miscarriages and did eventually have success x

tuttifritti · 14/05/2023 06:35

Mr Shehata is the undisputed expert in this field. I would book into see him

PeloMom · 14/05/2023 07:00

A close friend of mine had a high number of miscarriages, some after IVF. Eventually she went to a new fertility clinic (in a different country) where they changed many things/ medications, etc, were very aggressive and she got pregnant and delivered perfectly healthy babies. It turned out her immune system was attacking the pregnancies and she had to be on immunosuppressants (among other things) until delivery. Maybe request further testing or seek a good fertility specialist?

BananaBlue · 14/05/2023 07:35

DifficultBloodyWoman · 14/05/2023 01:41

I can go into more detail than my earlier post.

I had multiple miscarriages. I had some tests that ruled out chromosomal issues as a potential cause of miscarriage. Because of my age and the fact that I was seeing a fertility specialist already, (a fertility specialist who was a gynecologist and an IVF doctor), I moved to IVF quite quickly in terms of time. Not quickly in terms of the number of miscarriages. I was able to get pregnant easily, I just couldn’t stay pregnant.

Recurrent miscarriages are a symptom rather than a diagnosis. They can occur for a number of reason including but not limited to chromosomal issues, incompetent cervix, Uterine scarring, etc, the list is long. And IVF can only help with some that.

IVF is fertilizing an egg in a Petri dish. The fact that it happens in a lab means you can pick and choose the best eggs and sperm. So if miscarriages are caused by poor eggs and sperm, problem solved.

But the perfect embryo might still not implant correctly. IVF is limited in helping with that. IVF doesn’t help if your cervix opens too early. Or if there are uterine abnormalities like many major fibroids. Or if your hormone levels cannot sustain a pregnancy.

Further testing is important to figure out whether or not IVF can help you. Otherwise, IVF is a really expensive crap shoot.

I liken the jump to IVF by the medical profession to someone with a hammer treating everything as a nail. If it is the only tool you have, you will use it to fix every problem, regardless of whether it is suitable or not. And for many people, they have heard that IVF can solve fertility problems when, in reality, it can only help with a few specific problems.

This explains it perfectly I think.

OP I’ve never and cannot have a spontaneous pregnancy but have had 5 IVF miscarriages (x2 successful cycles) and have been under RMC.

PGS detected chromosome issues 2 embryos normal out of 10) but even that’s not infallible.

RMC may be able to help discover why the MC are occurring and IVF may not be the best solution.

Be careful with private experts - we spent a fortune on quack theories through desperation.

there was a BBC documentary on this.

BananaBlue · 14/05/2023 07:37

And I wish you the very best.

💐

Custardonthehob · 14/05/2023 07:45

With regards to testing, my consultant said they test for certain things and if these are found they are harder issues to treat. He said you want it to be an issue they can't test for 🤔I had 4 miscarriages in-between take home babies. Never found out what had happened to cause the miscarriages. Wishing you the best of luck.

RosaBonheur · 14/05/2023 07:49

I'm sorry you're going through this, OP.

To answer your question, the reason why doctors give such conflicting advice about recurrent miscarriage is because it's an area which is difficult to research and difficult to treat. There also isn't much incentive to do so because the vast majority of women with recurrent miscarriage will go on to have a baby if they just keep trying. That's not to say there isn't a problem, just that eventually they'll get "lucky" and one will stick. I realise that isn't much comfort for someone where you are right now.

The other problem is that it can be caused by really diverse problems such as a hormonal imbalance, a blood clotting disorder, a genetic mutation, scarring in the uterus, structural problems in the uterus, poor egg quality, poor sperm quality and probably other things yet to be discovered. This makes research difficult because if a woman hasn't been diagnosed with a particular problem, researchers would be comparing a group of women with completely different medical problems, all leading to the same outcome.

I was where you are this time three years ago. I went to see a new doctor in the hope that he could help. Unfortunately I am in France so giving you his name won't be much help.

The first thing he did was run all the blood tests again to check for thyroid issues, clotting disorders, the MTHFR mutation, translocation etc. My husband also did the latter two tests and a sperm analysis. We both had the MTHFR mutation and were put on methylfolate.

The doctor also did a hysteroscopy to check for structural issues in my uterus, which ther were none, and a full fertility checkup. This involved blood tests on day 3 of my cycle to check my FSH, LH and estradiol levels, and 7 days after ovulation to check my progesterone levels, as well as an ultrasound in the second week of my cycle to check my antral follicle count. Based on this he concluded that I was not approaching menopause and so my issue was unlikely to be egg quality.

I did have a thin endometrium, for which I was prescribed pentoxyfylline and high strength vitamin E. However, the evidence for this is quite poor. It's one of those "can't hurt, might help" things. Separately, I started drinking a lot of grapefruit juice in the second week of my cycle. Some women swear by this for egg white cervical mucus, and since the rationale behind that is that it boosts estrogen levels, I figured that if it works for EWCM it should also help thicken the endometrium.

I also had an endometrial biopsy to check for abnormal natural killer cells, but the results came back normal.

Having failed to find a cause, my doctor explained that there were a number of things we could try, including a couple of clinical trials, but if absolutely nothing worked the last resort would be to do IVF with preimplantation genetic screening so we could be 100% sure the embryo was normal.

I did one cycle on intralipids and had another chemical pregnancy, so we didn't try that again. That was my 5th loss, as I had already had 4 before I went to see this doctor.

We then did a cycle where I had ultrasounds every couple of days from day 10 of my cycle, and when my follicle looked just the right size, we triggered my ovulation with Ovitrelle, which is HCG, the pregnancy hormone. The trigger shot is a standard part of the drug protocol for both IVF and IUI. I did two further half doses of Ovitrelle at 3 and 6 days post ovulation, and took progesterone after ovulation. There isn't much research regarding using HCG to support early pregnancy, but it is a cheap and low intervention option and my doctor said he'd had some good results.

Anyway, I got pregnant again on that cycle, my 6th pregnancy, and that time it was successful. I did the same thing again a year after my son was born and it was successful again, so I ended up with two children from my 6th and 7th pregnancies, and a 21 age gap between them.

In your case I think it is important to do all the testing that is available to make sure there isn't a known cause which has been overlooked. But bear in mind that all the testing in the world won't necessarily produce an answer. It didn't in my case. Once you've done all that, you need to find a doctor with a game plan, meaning a plan for what to try and in which order. Basically, someone who isn't going to give up until you get your baby.

Good luck, and feel free to PM me if you have any questions.

GrabbyGabby · 14/05/2023 08:03

There used to be an incredible thread on here for repeat miscarriage. It was the best source of practical and emotional support bar none. I think it went underground after one of the hacking scandals, i think they called it The Other Place. I never did manage to find it.

I had 6 miscarriages. Was then treated for underactive thyroid and now have 2 lovely kids.

seven201 · 14/05/2023 08:11

Sorry for your losses. Ivf can help for couples who make embryos with chromosomal abnormalities. In ivf you can have the embryos tested so the chromosomal ones aren't used. A couple of years ago I had 6 embryos tested - 3 normal, 3 not. Do you think they're referring to that? Have you had any of your miscarriages tested to check for that?

If you're near surrey or london and can afford it I recommend going to the CRP clinic. They specialise in recurrent miscarriage. I've had four and am now 15 weeks pregnant, which is the furthest I've got to since my dd 7 years ago (no issues conceiving her). I had 6 rounds of ivf I didn't need (turned out I just needed surgery to remove some scar tissue from my uterus that was acting like a coil). I wouldn't do ivf unless it's needed.

FatAgain · 14/05/2023 08:15

Sorry for your losses.

Op do you have any autoimmune diseases? I had a mc when I was in a horrendous flare up of psoriasis. My sister has repeated mc and only realised long after that ship had sailed that autoimmune diseases can be a factor.

I think it’s absolutely worth persevering with tests if you can face it, I know what an awful journey it is.

Lcb123 · 14/05/2023 08:41

The difference in opinion are likely down to the lack of research in this area, which doctors can access. I’d go the testing route, as there might be something uncovered which can be treated, and therefore improve changes with IVF or natural conception

Quisquam · 14/05/2023 08:56

I had 4 miscarriages and 3 early pregnancy losses after the normal pregnancy of DC1. We went to a well known NHS and private infertility clinic. Our consultant believes in comprehensive testing and found

  1. Asherman’s syndrome -adhesions in the uterus, probably caused by a D & C after the first miscarriage
  2. Abnormal hormone levels
  3. DH had antibodies to his own sperm

He said I could never have carried a baby to term, as 50% of my uterus was taken up with adhesions, so there wasn’t enough room for a baby to grow. I would have had 20 miscarriages. Had a doctor elsewhere recommended IVF straightaway, it could never have worked!

After a hysteroscopy to divide the adhesions, we had IVF, because he told us, they could control everything like my hormones and ensure the optimum thickness of the endometrium. We had six grade 1 embryos and the pregnancy was successful.

As pp have said, I’d suggest you have comprehensive testing.

ivfregret · 14/05/2023 09:54

I thanks everyone it's all really useful. I think I have ashermans syndrome too possibly but then had a hysteroscopy and laproscopy to apparently sort those things.

I'm addition I think I have hormone issues.

I have had under and overactive thyroid historically and tested my tsh last week during tje 'pregnancy' and it was above the optimum level for pregnancy.

OP posts: