Low ovarian reserve and IVF

[Goldilocks2528]

Hello from a Newbie

My Partner and I have been having fertility/pre-IVF tests since Dec 2019. We should have been able to start IVF treatment before I turned 40 however COVID put a stop to that sadly, and therefore I am now 40 and am no longer able to undergo funded treatment.

Unfortunately I have very low AMH (2) and high FSH levels, and we are now in a position whereby we need to decide whether or not to proceed with self funded IVF knowing that the chances of success are even lower than they would usually be and trying to balance the cost and emotional side of things also. I have been told that I will need a significantly higher dose of medication should we go ahead, plus daily ultrasounds (I assume because of the increased risk of OHSS, and also because if I don't respond to treatment satisfactorily then it will be stopped by the clinic before collection) . I don't as yet know what that would mean in terms of specifics, however I should be having a conversation with the fertility clinic in the next week or 2 about this.

Is anyone else in a similar position? I would be interested in hearing any success stories or words of wisdom if you have been through this. It is very hard to know what to do for the best and I understand that we alone must make this choice, but I thought hearing from others who have/are going through this too might help.

Thanks very much

Hi Goldilocks, have you had an antral follicle count? That is another reliable indicator of IVF I think, and one my clinic seem to hold more weight with. Have you had your AMH tested only once? I've had a few over the years and they've gone up not down! My sisters also went from 4 up to 8 a year later, so again, if that's your only reference it might be worth combining with an AFC to get a clearer picture before deciding.

What was your FSH level? Mine was 12 and no one seems to have batted an eyelid over that.

So, to conclude, you might want to retake these tests and combine with an AFC before deciding what to do.

Hi @79andnotout

Thanks for your reply.

I have had the FSH twice, both a month apart. One was classed as 'borderline' and the other 'satisfactory' however I have been told they were also both were classed as high, although I don't have the actual figure. The AMH and a trans-vaginal ultrasound (which I think might be the same thing as the antral follicle count?) were on the back of that last week. Apparently the ultrasound was fine, no cysts or blockages etc which is a good thing. I asked the consultant for their views then and I was told that if we needed to self fund we should think long and hard about whether we proceed or not.

I've done a lot of research online (not always a good idea!) and although there were a few glimmers of hope most of it was all doom and gloom.

I shall ask whether the antral follicle count was done as part of the ultrasound when I speak to her, thank you.

Hi @Goldilocks2528, yes they might have counted the antral follicles when they did the ultrasound. It would be good to ask them what they saw. If there were very low numbers (less than 2 each side), then it might be best speaking to a clinic that specialises with advanced age and expected low response. I don't know what part of the country you are in but my sister had a great experience at the Evewell clinic in London, and my neighbour had a good experience at Create Manchester. You may be better off going with a mild ivf approach. My sister had success with own eggs but my neighbour went abroad for donor eggs in the end. Both required a few rounds.

Sorry, it's a bit doom and gloom at this age. I am in a similar boat, nearly 41, high FSH, and immune problems, but my AMH was 10 last I checked and my AFC was good, so going to have a go and see what happens. But don't want to go down the route of throwing good money after bad, so need to draw some lines in the sand.

Good luck with your decisions.

Thanks @79andnotout. It's hard isn't it! I will ask. The clinic seem fine but they don't seem to provide you with much info, and if you don't know the right questions to ask you're a bit stuck.

I am in the South West sadly, but I was reading about mild IVF earlier today so I might investigate that further. There is a clinic that specialises in natural and mild in Bristol, although I think natural is not recommended.

Best of luck. I don't think either of us are 'old' but good old mother nature thinks differently, and you have extra things to deal with too by the sounds of it. Best of luck and thanks fro your help, I hope it goes well for you.

Yeah definitely don't otherwise feel old, think I'm in better shape these days than I was in my 20's, but tell that to my eggs! Best of luck.

My chances are low (less than 10%) but I feel that still need to try rather than forever be thinking what if

Hi @MabelG
I absolutely know what you mean. I feel the same, I really don't want to look back and think 'what if we had tried'?. On the other hand, my partner went through 5 rounds of IVF with his ex, and he said emotionally it was hell. It broke his marriage. Plus there is the cost of it all, and the fact that I just can't see it happening first time, if we even got to that point.
We are much stronger as a couple and would both love a baby together, so I am not worried about it wrecking our relationship at all because I 100% know it will not, but I am worried about the immense stress and financial cost when it might all be for nothing. I don't want to look back and regret not trying either though.

Best of luck. Is this your first round or have you tried before?

@Goldilocks2528 I'm a couple of rounds in - I didn't find the first round too stressful because it was all new and I was hopeful, the second one was a bit more stressful but now it's our last go I have to admit am quite stressed. And it is hugely expensive but if you can afford it then think it is definitely worth a try. The other thing to remember is that these tests can only give you an idea as to how you will respond but the only real way to find out is to actually do an IVF cycle. Good luck with whatever you decide!

I am 32 but my reproductive system thinks it's 42. I have low AMH (5) and have had an antra follicle count of at least 8 on both rounds. I agree with 79 that you need the afc to help you decide as this will give you a clearer idea of how many follicles you could grow. My clinic give me the max stims dose and it is expensive! Some clinics approach low AMH in the opposite way and would advise natural or mild ivf in order to focus on quality over quantity. This has the added benefit of being more affordable due to less drugs being used. I would also query the daily ultrasounds. I had 3 both times. Even with the high dose we are a low risk for ohss as we just don't grow that many follicles. Daily scans sounds quite intense. Good luck whatever you decide. Xx

Hi OP,

I just wanted to say I know how tough this decision is.
I have NC’d for this but I promise I am a genuine person, I just couldn’t risk my other username being linked and someone in my real life working out it’s me because I haven’t told many people about my IVF.
Just to give some background, I am 40 and myself and DH have just gone through our second IVF cycle (frozen embryo transfer) after our first fresh transfer attempt last year sadly resulted in an early miscarriage.
I have a low ovarian reserve and we only had 2 embryo’s frozen so we were very nervous about whether the second attempt would be successful. Every single step in the journey seems such a milestone, firstly responding to the drugs, then having the first scan to check the womb lining, then making it to the clinic for transfer, will the embryo thaw okay, will I make it to pregnancy test stage this time and so on. And of course the fact we are living in a pandemic, we have been worried about that too. (Beware there are some judgemental people who think nobody should be TTC in these times. But when you are at this stage in life, month’s cannot be wasted let alone potentially years waiting for the pandemic to go away).
My advice to you would be to go for at least one IVF cycle, I know it is so expensive and you will have concerns about the strain on your relationship but please don’t have regrets in the future about not trying and thinking ‘what if’.
I knew that if we didn’t at least try once I would be sad about this for the rest of my life. I’m sorry if that sounds dramatic but I just felt so strongly that would be the case.
I have been incredibly lucky in terms of not experiencing any of the awful side effects you are warned about on either cycle (so far!). Not everyone experiences them. Try not to let that side of things worry you, if they happen it won’t be forever.
I would suggest that if you go for it, agree on how many cycles you will try. This can be difficult because you don’t know how many embryos you may end up with until it happens but if you can try and agree on I.e. 2 or 3 cycles, I think that is helpful. Although I am one to talk as I always said I would never want to try IVF but here I am! But in our case we just couldn’t afford to keep going beyond one more cycle.
I would suggest going for some counselling if you can, either individually or as a couple to talk through everything.
I live in the South West too, please feel free to PM me if you want to chat, I am happy to tell you which clinic we went too and give you details if this is helpful. (We didn’t go to Bristol).

Whatever you decide, I wish you both the very best of luck OP.

Oh and sorry a couple of other things to add. Maybe double check the fact Covid has meant you can’t have funded treatment due to turning 40. I’m sure you already have, but it’s worth checking this as I thought I read something somewhere saying they have relaxed this rule in some cases.
Another thought is, would it be worth paying privately to see another specialist IVF consultant for a second opinion? This could be a good way to get all the facts you need to make a fully informed decision. It’s just that the consultant you spoke to was all doom and gloom and it could be their style to be overly cautious. I have found that some of the medical professionals we have encountered have been real doom mongers, when in fact last time we beat all their odds to get as far as we did. They made it clear afterwards that they didn’t think we would even to get to embryo stage but somehow we managed to end up with 3! I know they are trying to be realistic and trying not to get people’s hopes up, I can understand that, but even so a bit of positivity works wonders IMO.
Anyway good luck OP x

Hi @Goldilocks2528

Just to say I also have similarly low AMH but antral follicle count varies cycle to cycle, to the extent that I have a baseline scan at the start of a cycle to decide whether to start stims or wait a month. As an example in January it was 4 but in March I had 14 follicles (and then bloody lockdown happened!).

Regarding your clinic, my first clinic were very reticent, but I pushed for information, it is my medical information and I did not like to be patronised.
Since I've gone on to have further treatment I realise even more how crap my first clinic were, even small things like tilting the screen away from me during an ultrasound and whispering, whereas in other clinics they show you the screen and point out the follicles or lining or whatever they are looking for.
My clinic when they said AMH was low actually twice did not answer me, just said 'low' when I asked.
Anyway I got my medical notes. You really do need to advocate for yourself, remember they're not doing you a favour!

The daily ultrasound seems weird, I don't think OHSS is going to happen when AMH is very low.
I'm currently with a very good thorough clinic in Spain and they are happy with scans every other day.

Also I have got better results on a lower dose compared to the maximum dose in my first clinic.

I've got a zero interest credit card which I used to pay a chunk of the treatment costs.

It sounds like you could benefit from a consultation at a different clinic, might be a few hundred pounds which is (unfortunately) a drop in the ocean in IVF costs! But worth it to find the right clinic that you can trust.

Hi @MabelG Best of luck with this round, I have everything crossed for you and thanks for the advice.

Hi @SpyroC (named after the game? Love that game if so), thanks for your reply. Sounds like I defiantly need to know the afc, I shall ask about this when I next get a call from the clinic. I'll also check about the daily scans, I was a bit shocked when she told me my AHM was so very low so I could have misheard her.

Hi @FingersCrossedForAllOfUs, thank you for your message and for sharing your story with me. I wish you all the luck in the world with the next transfer. The more I ready everyone's messages of hope, the more I think we should at least try, even if it is one round. I have always said I could never go through IVF (terrified of needles, hate anything medical, never had an operation .... etc) however I changed my mind because we would both love a little us so much that I'm willing to put myself through that to try. Getting more used to the needles now since I've had so many blood tests and 2 MMR jabs since starting this process, but still know i couldn't inject myself. Other Half will have to do that!
By the sounds of it, we may use the same clinic, I'll send you a PM (when I can work out how to do that here ).

Hi @JeNeBaguetteRien, thanks so much for your message too. I hadn't realised that afc could alter quite so much, that's good to know. I think I'll ask for a copy of my medical notes as well, thank you. I have no reason not to trust the clinic I am with and they have been very nice so far, I am just so new to all of this it takes time to get your head around the terminology and I don't always know the right questions to ask. I think sometimes medical professionals assume you know it all when in fact you know very little.

Thanks again everyone, you have all been so helpful

Hi OP,

Thank you for your good wishes and your PM, I replied earlier.
I know it’s such a big decision to make but I think you are right to consider trying one cycle. Just like you I always said I would never try IVF but when it became obvious it was our only option left and my age was against me I changed my mind and luckily my DH felt the same.

I can understand your worries about the medical side of things, needles, etc. I know I might not be the norm but I actually found the injections the most manageable part. I have found the pessaries more difficult to manage but everyone is different I’m sure. I have also been very lucky both times with having no major side effects from the medications. Only some discomfort around the ovaries area which I’m told can happen.
I’m glad your OH will be able to help you with the injections, once you’ve got over the first couple I hope you will find it isn’t as bad as you think.

Also we found that the first time we had IVF the medical professionals were using lots of abbreviations that we didn’t really understand. I think they are so used to repeating things to so many people they forget what it’s like for first timers! Don’t be afraid to ask lots of questions and to get a second opinion elsewhere if you feel it’s needed.

Best of luck to you and your partner with whatever you decide.