How best to cope

[Yellow1993]

Hi everyone, I hope you're okay?My story...my partner and I have been trying to conceive for 3 (going on 4 years) we first made our GP appointment 2 years ago and after tests we found that my partners sperm was a different shape than usual (morphology) now recently, after having the dye test through my fallopian tubes that they were both blocked as well as my scan showing PCOS, I got both results within weeks of eachother in late 2023 and we were then referred for IVF. We had our first appointment a few weeks ago and were SO excited, only to get into the appointment and for our consultant to be uncompassionate, she kept interrupting and told us we would need to repeat all our tests again and that I would likely need an operation on my fallopian tubes, the end of the appointment we were handed leaflets and told to make the appointments ourselves, after this I was devastated and crying all the way home - I am so grateful for the opportunity for IVF and I don't mean to sound otherwise but I am really struggling with the continued limbo of this journey. If anyone could please give me some advice I'd be so grateful? I've just decided tonight that I think I would really benefit from speaking to those who are going through the same as I feel so lonely. Thank you in advance and I'm here if anyone needs a chat xxx

[CardiGrey]

Hi Yellow. You’re in the right place. Thanks for sharing your story with us. I also have PCOS and was diagnosed relatively late too. My partner and I have been TTC coming up 3 years this year but he already has two children, so it’s quite a lonely journey. There are quite a few people on here who have had adverse experiences with healthcare staff. Sometimes it’s can be because whilst this journey is unique to us, it isn’t to them. Therefore, what is quite an emotional journey for us can be spoken about it an a matter of face type of way. However, try not to let that deter you. Lean on your partner for support and be a comfort to each other during this time. I’ve found having a journal/diary helps me as well as exercise (although I’ve been slacking on that lately). I also had CBT, which I paid for privately. That was a massive help. I have a handful of friends who know about what I’m going through and I can talk with candidly about what’s happening and that also helps. We’re currently saving for private treatment as partner’s two kids means that we aren’t eligible for NHS. Just think of it as being one step closer to being parents. Take care x

[Yellow1993 in reply to CardiGrey]

Hello, first I just want to say I'm really sorry that you're going through this and I hope you know I'll be here for you so don't feel that you are alone! Thanks for your message, you've given me some good tips and I will use them I will also look up CBT, I have had CBT before but not for this reason. Do you find that you put off decisions due to your journey? I'm really unhappy in my job and want to look elsewhere but ive definitely learnt over my journey that you never know what will happen so any advice is very welcome if you've been in a similar though process thanks again xx

[CardiGrey in reply to Yellow1993]

Thank you. That’s incredibly kind of you. I’m here for you too if you need anything. I had a fertility specialist counsellor who has experienced PCOS and infertility herself so she was really empathetic. My partner and I have prioritised his children, then we prioritised finding somewhere to live- at times I’m not sure if it’s my fight or flight and I’m looking for excuses. There have been a few people on here wanting to find new jobs etc before starting treatment. However, I would say you can do that alongside your treatment. People can’t discriminate because of infertility or early pregnancy (fingers crossed for that for you by the time you get looking for your new job) xx

[Yellow1993 in reply to CardiGrey]

That's great that your counsellor was empathetic, exactly what is needed when your struggling yeah I know what you mean! Life doesn't stop does it and I bet you're glad you prioritised, thank you that's helpful and I think if the right opportunity comes along I should go for it! Xx

[Boo718]

hello, I’m always here if you want a chat. I’ve been on the ivf journey for a good few years now. If you are going through the nhs it is very long between appointments and letters and quite hectic and disorganised. You have to just go a day or week at a time. Stress is so bad for the whole process so try to think of it as we have started the journey now we have to get on with everyday life until we hear the next piece of information xxx

[Yellow1993 in reply to Boo718]

Hello, thank you so much, always here for you too how have you found your IVF journey? We've definitely found the waits long so far and disorganised too at times, on Friday I went for my 2nd dye test and they told me I had been booked in the wrong day (day 14 instead of 10) so I have to now go next month, but it's one of them things! And that's a great piece of advice thank you xx

[Onestepatatim3]

Hey yellow1993 I'm so sorry you have had a really tough time of it. I'm glad you reached out for support. I've had a rough time starting my journey with the experience of some healthcare staff in the NHS but have found the staff at my private clinic so much more pleasant in every interaction and they have a listening ear and empathy. I wondered if you are not already with a private clinic if you could perhaps explore this route as it may help throughout an already difficult journey. If you are already with a private clinic I wonder if it may be worth changing clinic perhaps depending on where you are in the journey. It's the best move I made. The stress and anxiety healthcare professionals in the NHS gave me would definitely have impacted my stress levels and outcome. I requested all my personal records test results scans etc and just sent them to the new clinic. Most of the tests I didn't have to repeat. If changing clinics isn't an option perhaps see if you can change consultants. The situation could have definitely be handled better and I really hope things improve. Sending you strength xx

[Yellow1993 in reply to Onestepatatim3]

Hello, thank you for your helpful reply and I'm sorry to hear that you had a negative experience with some healthcare staff too! But really glad you're having a better experience now I absolutely agree the added stress is not helpful and makes a hard situation worse, well it has for me! That's a good idea, I'm going to see what the next appointment is like and if no better I'm going to ask to change consultants! I rang my GP the morning after our first appointment and they said we could be referred to another hospital but it would put us back to the start of the process! Sending you strength too and fingers crossed for you in your journey xx

[Yellow1993]

Tt

[AJKP]

Hi Yellow1993I'm very sorry to hear that your journey so far has been difficult. I'm not sure you if you are going to an NHS or private clinic. But what I have learned from my journey is that you have to stand up for yourself. Just because they are medical professionals doesn't always mean they are right. I was referred to a private clinic by my GP who also accepted nhs patients and I found them cold and heartless. So I moved clinics and feel my new clinic have been so compassionate throughout.

Sometimes you have to repeat tests because they can get out of date but generally they can use previous test results.

I have one blocked tube and my clinic never asked me to redo a test or to have it unblocked. I was going to go down that procedure anyway on the nhs but then for other reasons I didn't follow it up, but it never impacted the treatment I had with my private clinic.

IVF is an emotional rollerocaster, but this forum have been great to seek advice from. Wishing you all the very best of luck xxx

[Yellow1993 in reply to AJKP]

Hello and thank you very much for your advice! I'm glad that you moved clinics as you shouldn't have been treated that way at the first clinic and I'm really sorry you went through that! It certainly is a an emotional rollercoaster and I'm so grateful to have found this platform I wish you all the very best of luck too xx

[Dormus01]

lord do I relate to what you are saying . I found the consultants at my ivf clinic to be pretty harsh too. Got given lots of information, no context, asked if I wanted to use donor eggs all with 20 minutes. It was horrible. I had my first round of ivf last year, managed to create 2 embryos, did one implantation which failed. I’m waiting to do the second as I’d like to still try to conceive naturally. The thing that got me through all of this was my acupuncturist who specialises in Chinese fertility medicine. Very experience, science based and has taught me so much about my own body and explained things in a kind and compassionate way. I’m also making the most of the counselling service that the clinic run. My advice is to get as much support as you can, if you can pay for things that will help you manage what you’ve got going on holistically. The most important thing, is to just look after yourself and remember whatever happens you’ll be ok. I actually follow a lot of woman who celebrate their child free lives to remind myself that if it doesn’t work out life will still be rich and exciting. Good luck with it all - we are rooting for you xxxx

[Yellow1993 in reply to Dormus01]

Wow this is exactly what happened with us!! A quick 20 mins appointment and left so sad! I'm really sorry that your implantation failed and I'm wishing you lots of luck in your next implantation! Thank you for all of your advice, is there anything holistically that you would recommend amongst acupuncture? (I'm brand new to the holistic world but will absolutely give anything a go) I would love to manage my stress naturally as I get very stressed and down! Best of luck to you too and sending lots of love xx

[Dormus01 in reply to Yellow1993]

Holistic treatments - I would recommend seeing what’s available in your area and just giving different things a try . See if you can find someone who just specialises in fertility related treatment and check their credentials. I live in a little hippy now so I was spoilt for choice and found accupuncture in my door step. It isn’t cheap tho / I’m spending around £200-£300 a month but she has really held me hand through this whole process .

[Rainbow_23]

I wish there was a way we can sugar coat it and tell you it’s all going to be ok but sadly there really isn’t. And it’s only going to get tougher. I used to consider myself as a strong woman but IVF has broken me. Please don’t be disheartened, what reaching out will do is prepare you to toughen your boots and take the road on with all your mite! IVF is incredibly hard so make sure your partner and you are a force not to be reckoned with, communication is so important.

people ask me what it’s like going through IVF and the only way I can explain it is that you’re numb and living life in limbo. And that is how cruel infertility is my lovely. But as said, prepare for that now, get a strong mind set, you’re going to need it. Always always speak to friends, us (the infertility warriors) and your partner, don’t bottle things up. You will be ok ❤️

[Yellow1993 in reply to Rainbow_23]

Hello, I feel like this is what I needed to hear 😊 I've become aware recently that I need to work on my resilience - if it's one thing this process has taught me it's that life is not a fairytale and don't we all know it hey! I am always here for you and hate to read that IVF has broken you! Thanks for all your great advice and I will definitely be working on a stronger mindset! We are infertility warriors indeed! Sending lots of luck xx