Low AMH and now adenomyosis - feels like the odds are very much against me for IVF, any help/advice appreciated for a newbie to this forum

[HoneyB11]

hi everyone,

Quick bit about me - I’m Lisa, I’m 38 and have been off contraception since April 2020 but been unable to get pregnant.

We got a GP referral to our local fertility clinic a year ago but discovered I had a low AMH (2.32) and my husband’s semen assessment showed bad morphology (shape less able to penetrate the egg). Therefore it turned out we would not be eligible for NHS funding (which was our first blow).

Knowing we would need to self fund it took us 10 months to get together the money to start private treatment. We went back to the same clinic and had further tests. Now I get told (by email) I have adenomyosis - which i’d not even heard of before.

The doctor had told us our realistic expectation was 10-15% based on our previous results so with this as well it will be even less.

This news has knocked me sideways - I’m on the verge of tears daily, I’m finding it hard to get out of bed in the mornings and concentrate at work and mostly just feel extremely sad. I can’t imagine not being a mother. All my best friends have had families over the last 2 years (one through ivf)… and normally I’m a positive person but feel like I have to face up to the facts.

I honestly don’t know what to do… with our results we’re not eligible for the refund programmes and we have the money for up to three rounds to try but I don’t know if I can face the heartbreak of it not working.

I spoke to a counsellor today but it hasn’t really helped - if anything it made me feel a bit worse. In the past with different issues groups like this have really helped as I know I’m talking to people who really relate to my situation so I’m hoping that happens this time.

I’d really like to hear from anyone who’s had the same challenges as me with your advice or shared experiences as I’m feeling very lost!

thanks xx

[Skittles11]

Hi Lisa

It's soul destroying when it seems there is bad news after bad news, I can empathise with you there.

I too have low AMH and discovered this nearly 3 years ago. I was also denied any NHS funding other than initial blood tests which I later discovered weren't carried out at the appropriate time - just to add insult to injury.

Anyway after working through the upset of the low reserve I later discovered I have an endometrioma cyst. It has felt to me at times that more crap keeps being added to my fertility woes which has a huge impact.

However I feel with all the crap I have in a way become slightly number to some of the emotion, not saying that's a good thing, that is just how it has been for me.

As you are at the start and you know you can fund 3 cycles I'd start by getting yourself in the best position you can. Think about and research if there's any testing you can do before you start your cycles. Clinics will often wait 2 or so cycles before they do extra testing and if you know you have 3 cycles I'd be inclined to skip that and do testing first.

Also with the counsellor I wonder if it may be different with a different person. I've used a clinic counsellor and just did not find it at all helpful. Having tried other counsellors I've had better experiences.

Do you have a good friend you can chat to? I know it's hard if friends have kids but maybe there is a supportive person you can confide in?

You've said you're a positive person which is great in this scenario. I've seen so many stories on this forum of ladies who have had success stories even after horrific experiences and several unsuccessful cycles. It can be done and I think until you progress with it you just don't know how it will unfold. There is every reason to be hopeful x

[HoneyB11 in reply to Skittles11]

hi skittles,

Thanks so much for your quick reply - it really does mean a lot ❤️

I’m sorry to hear of the troubles you are having.

I think as I’m at the start of the journey there’s still a lot I need to learn (even some of the lingo having read several posts!)

Thank you for your suggestion about getting further testing - but can you elaborate please on what other tests I should be asking about?

We have a follow up appointment on 6th Feb so want to go in as clued up as possible.

Regarding a friend to chat to - I do thank you and have set up a call with a friend on Saturday but I really think this forum will be invaluable.

I do worry that my husband finds it extremely difficult to even think about this all and he closes up when I try to talk to him about it.

I’ve also just downloaded the ‘it starts with the egg’ book people were recommending on other posts so will give that a listen this weekend.

Lx

[PepMo]

I can totally relate with you. I have had similar situation where I was diagnosed with adenomyosis after my first privately funded cycle ended in a miscarriage. When I was starting my second cycle, I was told I have a 26 percent chance of success. To add more trouble, I was not responding well to the stimulation and ended up with only two embryos. I still took the chance and now I am blessed with a beautiful 3 month old baby girl with one more embryo in the freezer.

All I want to say is that do not lose hope. I know these percentages appear scary and IVF is a long and painful journey which requires a lot from you. But keep your eye on the final results and keep a positive attitude ( easier said than done but hopefully you will find your strength)

Praying for you

[HoneyB11 in reply to PepMo]

Thank you PepMo and it’s so heartwarming to hear of your success - congratulations!

I think I need to really keep these success stories in mind when I start treatment.

If you have any advice on other things I can do to give myself the best chance please let me know - I’m taking folic acid and Co-Q10 supplements as suggested by my doc and have made lifestyle and diet changes etc but not sure what more I can do.

[Debsdex11]

I’m so sorry, maybe to look at options abroad, it can be half the price of uk and only a couple of hours flight away, to make your money go further.. Also if you’re desperate to be a mum there is the option of donated eggs/sperm/embryos that will significantly increase the chances of a live birth. I was in a similar situation and am now pregnant after going with donor eggs (only produced one decent egg trying with my own and that ended in MMC). Best of luck for whatever path you choose x

[HoneyB11 in reply to Debsdex11]

thanks Debs - would like to try at least one round with my own eggs but would definitely consider donor eggs if I can’t get any good ones to fertilise.

Congratulations on your pregnancy - hope it all goes smoothly for you x

[laraedwards]

Hi,

I'm really sorry to hear the situation you are in. It's so anxiety inducing. I am 36 and have a similar AMH to you. Luckily I have a son conceived naturally in 2018 but are struggling to have another since September 2020. Due to my AMH being low I was told I wouldn't be able to have IVF. I have taken the approach of seeing a Fertility Nutritionist and tomorrow I'll be seeing a Fertility acupuncturist. The nutritionist has really helped and I'm actually currently painfree during the middle of my cycle (I was getting muscle aches, internal lower abdominal pain and tender breasts from a few days before ovulation until my period). We've worked on reducing gut inflammation, vaginal dysbiosis (bad bacteria), improving my diet with more protein, and reducing sugars (and lots more). I was low in vitamin d and iron so been supplementing that. I also take coq10 and omega 3, magnesium supplements. I was getting bad anxiety and I saw a solution focused hypnotherapist which was really helpful too in guiding me away from my negative thoughts. Obviously this all costs money but if you can save up a bit more you could get you and your partners health as good as possible before IVF. I follow a lady on instagram called @alexoconnor_fertility and she talks about AMH not really being relevant. Worth checking her out if you haven't already

[HoneyB11 in reply to laraedwards]

hi Lara,

Thanks for your reply.

This is all so new to me so appreciate any advice and have started following Alex on Insta… just reading through a few of her posts and had no idea that acupuncture can help improve one’s AMH level?! Have you seen a positive increase in your treatment?

There’s a highly recommended local clinic for complementary fertility treatment using a mix of eastern and western methods so I may book a consultation with them.

Good luck with your journey x

[laraedwards]

I haven’t had a retest of my AMH as not sure the fertility nurses would allow it (although I’ve not asked) as they probably wouldn’t believe the AMH could change. It’s really interesting reading her posts and the case studies though. Wishing you lots of luck too x

[FrancesC90]

Just to let you know Access Fertility offer a multi cycle programme that is available regardless of medical diagnosis. Gets you 2 cycles for a bit cheaper than paying them individually.

[HoneyB11 in reply to FrancesC90]

Thanks, yep that’s the one we’re doing 😀

[ZiggyandBC]

Hi lovely,

I got the news that my AMH was low as well as having endometriosis and my partner had poor sperm as well as a very low count. It was really hard to take and felt like everything was against us! We were given similar odds of it working at 10-15% ish chance each time. It felt like a massive blow and I was devastated and felt like it would never work but I’m currently 30 weeks pregnant after our first transfer. Just because it feels like you have a lot stacked against you doesn’t mean it won’t work for you. I’m sending you all my love and know that you’re not alone ❤️

[HoneyB11 in reply to ZiggyandBC]

wow that’s amazing - congratulations! So nice to hear a first cycle success story. Thanks for your reply and best wishes for the rest of your journey xx

[Matt_p]

Hi Honey, I am currently researching Google for further info a out adenomyosis. We started IVF in 2019 and have had 2 rounds - first resulted in miscarriage, 2nd we didn't produce any viable eggs. We took a step away last January to love life again and since my wife has been diagnosed with adenomyosis albeit advanced stages of not we've been told.

My wife is 38 I am 43 like you and your husband, we are devastated reading the statistics of a successful birth with adenomyosis and devastated about the possible of a future without kids.

I want to go again my wife is sceptical as doesnt think it will happen..we have privately funded everything and are knocking on 45k do a huge concern to throw more money at it.

How has your journey gone? Sorry to pry, I just would love to know outcome stories of people in same boat as us....I want to do one more round before the likelihood a hysterectomy comes knocking to alleviate my wife's pain.

Thankyou