Advice on when to stop

MaryB · Post by **MaryB** » Thu Oct 16, 2003 11:30 am

We have just failed our fourth attempt at IVF/ICSI. We are not only completely devastated but also confused as to what to do next. The hurt gets worse each cycle we do but it is also really upsetting to see how much it is hurting our friends and family as well. We have been lucky to get 2 or 3 embryos each time, but these have mostly been graded poor or fair. We have never had any frozen embryos. We are facing the decision of whether or not to carry on with this treatment and don't know how to make this final choice. Can anyone tell us how they came to decide to stop and how they dealt with all of the emotions that must bring. We realise we will have to stop at some point but there is always that thought that we should give it one more go. Any help gratefully received. Mary and Andy B

Alison · Post by **Alison** » Thu Oct 16, 2003 12:47 pm

Hi Mary - I'm sorry about your recent unsuccessful attempt - like you say, it doesn't get any easier does it?! We're in a similar position. We've had 4 unsuccessful IVF/ICSIs plus one failed FET. Twice I've had a very low positive result but its not hung around. We've decided that our next go will definitely be our last. Of course, I recognise that there's a chance we may change our minds, but at present we're 100% sure. For me part of the reason is that I've lost faith that it will ever actually work for me, so I'm reluctant to put me/us through everything again. Because I don't really believe it will work I'm feeilng resentful about the process itself, and the amount of time, stress and money it will take. Having spent the last 2 1/2 years going through endless tests and treatments the idea of having a normal life, even a childless one, that doesn't revolve around when treatment cycles is appealing, and more manageable than carrying on as we are at the moment. We're also planning some major life changes if it doesn't work - DH is planning to retrain to teach, something that we couldn't afford to do (or not so easily) with kids, and we're also thinking of moving away from London, and possibly taking some time off next summer to travel. And we're starting to think about possibly later on fostering or adopting older children, but that's not an immediate thing. I think in the last six months we've both begun to see that a life without children of our own still has possibilities and things we can do, and planning for that has helped me feel more positive. That's not to say there aren't days when it all gets too much and I want to scream about the unfairness of it all. And, having said I don't believe IVF is going to work for me, that doesn't mean I'm not hoping for some fairytale ending to our final go and get PG with twins, and I know that if it doesn't work again I'll be devastated. Sorry, I'm rambling, and this possibly sounds more positive and rosy than I generally feel. I do now have a sense though, more than anything, that we can't carry on as we are with the treatment, and that's probably the biggest thing prompting us to stop. Wishing you all the best with whatever you decide, love Alison

Grace · Post by **Grace** » Thu Oct 16, 2003 5:53 pm

Hi Mary and Alison too I know what you mean Mary. I have worried alot that I am be coming sort of addicted to treatmeant. I know that we can not possibly go on doing this for ever. I am currently on my sixth treatmeant cycle and I have found it every bit as hard as all the othrs. In some ways harder because I am a bit cynical about everything now. I know I should n't but I can't help it, and I can't be positive all the time because experience tells me otherwise. Like Alison I am now thinking of a future without children, this is moving on for me because it is someting I could not contemplate before. I think I would like to retrain and perhaps move away form London too. With all my heart I do hope treatmeant works for us this time. Somehow I think I will be okay one way or another though. If nothing else, all this treatmeant has showed me that I have strength within myself that I never knew before. I really want to have a normal life now, I feel I have been in "no man's land" for far too long. I too wish you the very best, you are not alone in how you are feeling. Love Grace.

Sal · Post by **Sal** » Fri Oct 17, 2003 8:54 am

Hi everyone. I think most of what I was going to say has already been said. Life would be so much simpler if we didn't have to make tough decisions, sometimes I do wonder whether are lives have been mapped out for us and whether this is just another test or obstacle for us to over come. Do we, or don't we? One of the hardest and also bravest decisions you will probably ever have to make and one that only you and your DH have control over. For us (in particularly me) I literally woke up one morning and thought I cannot go through with this all over again - sounds corny I know! I don't think I/we had knowingly made the decision, it was more of an acceptance/realisation? I'm hoping this is making sense as it is quite difficult to put into words.

fiona_lk · Post by **fiona_lk** » Fri Oct 17, 2003 9:27 am

Hi Mary, I hope you don't mind me bringing in a slightly different perspective. I am one of the very, very lucky ones to have eventually had successful treatment - but only after 14 ARTs (4 clomid/7 donor IUIs and 3 ICSIs). As you can imagine, especially after having lived through a very close break-up of our relationship, the trauma of an ectopic in my last but one cycle and a miscarriage of an amazing natural pregnancy (we have mf of 96% abnormal sperm) I began to wonder the very same questions. How many times could I put my body through the drugs and go through the horrendous 2ww? But my dh and I made a pact - we decided that for every cycle we did and that we could afford, we would do 'something' different. That way we would always (hopefully) feel that it had as much chance as the first cycle. For example, after my ectopic I went for acupuncture and continued it through my next (successful) cycle, and in fact still do it now almost a year later. I know that it hasn't helped everyone get pg, and a high FSH result forced us to change clinics and protocols too, but if nothing else, it really helped me to deal with the emotions IF brings. I suppose what I'm trying to say is that if you have decided what you feel are reasonable actions to take to get pg, and you have met all these actions and are still not pg then perhaps you can move on from the treatment without guilt added to all the other emotions. It will never be an easy decision, I understand and I wish you luck in whatever you decide your future holds. Love Fiona xxx

Lorraine · Post by **Lorraine** » Fri Oct 17, 2003 12:34 pm

Dear Mary and Andy I have been thinking of how to reply to you for the last 2 days – I have begun this post a dozen times – and each time I have clicked the cancel button rather than the send! I so want to be positive for you, to calm you, and soothe your inner thoughts and fears and yet I am afraid that I won’t be able to do that and I will just add to your misery and concerns. After 7 years of ttc and 3 IVF cycles my husband and I have decided not to try again. Making the decision actually was not the difficult part – it was very much a slow realisation – I think so long as you listen to yourself and your body - honestly - and recognise when you have ‘exhausted’ the possibilities (or yourself) then you can be sure you are making the right decision. For us (and I guess for every couple it is different) it just felt right to say - enough – no more IVF. I recognised I had started to hate the whole process – and more importantly no longer believed in its possibilities. Just going to the clinic made me anxious and panicky – knowing that at any given moment the news could be devastating was too much for me to bear, and the invasive nature of the treatment, drugs and resulting failures have left me feeling violated. Strong words – and yet there are times when I still think – maybe just one more go – but I know in my heart of hearts I only think that so I can put off dealing with being childless for a while longer. Making peace with our decision is the hardest thing I have ever had to do. I thought having been told that children would be unlikely at the age of 16 prepared me for this time, I thought surrounding myself with special people, and finding a man who I love entirely would be enough, I thought building a purposeful career would be fulfilling, I thought doing my best at all times, leading a good life, trying hard, enduring all that treatment, being practical, and making plans that didn’t include children would mean that when the end of the chapter came – that I would just turn the page and write a new story with a new ending and it would still be a beautiful tale. But so far it hasn’t been like that and I was naive to think I could prepare for it ……… It has only been 3 months since our last cycle – I haven’t resolved, or really even begun to deal with my grief – and that is why I was reticent about writing to you – I can’t give you the whole picture – or the happy ending as I am struggling to find my own (others who write who are further ‘down the line’ will perhaps do that for us) – but I do have hope – I can put my hand on my heart and say I have the most wonderful husband and I something inside tells me constantly that we will still have a happy, exciting, fulfilled, and even useful life together without children …………… but I also know today I must grieve. I am sorry – its not very positive is it? But I wanted to be honest, I wanted to some how prepare you – or at least share my experience so you have some insight. From what you write you are considering another attempt so if this is too much information, too soon, if I have done wrong, spoke out of turn, upset you or worse frightened you – then I am truly sorry – not for all the world would I want to add to your burden. I sincerely wish you and all the other couples out there who are in the same position peace, and acceptance of what ever is to come. With Best wishes to you both Lorraine and David. xxxxx

alice · Post by **alice** » Sun Oct 19, 2003 4:56 pm

Hi, I just wanted to follow on from what has already been said. Finally giving up is something that each of us comes to at different times and through different ways. Like you, we had 4 ICSI and 8 IUIs. In the end I lost the belief it would ever work fro us and I can see now that IVF was runing my life. It was an obssession that wouldn't go away, yet caused me so much misery becasue I couldn't see the point in going through with it as I didn't believe in it. I guess stopping for us was just reaching the end of the line, where we couldn't fight any more. We made that decision in January, and time does make it better. I think that as a woman I will never get over my infertility completly and I still panic at new pg announcements and find seeing babies hard, but I can deal with it much better as the pain does lessen. . You have a hard job now of deciding what to do. My only thought is that you should take some time to think about it and not make rash decsions while you are still raw. Its good to see so many messages on this part of the site now. Its good to have somewhere where everyone understands. Each of us has our own story and own hurt but are getting through each day one by one. Love to you all alicexxxxx

MaryB · Post by **MaryB** » Mon Oct 20, 2003 9:01 pm

Dear Alison, Grace, Sal, Fiona, Lorraine and David, and Alice Sorry for the delay in sending this message back. We've been away for a few days to get our heads round everything that has happened. We were extremely touched by all your messages and deeply moved by all your experiences. It means so much to hear from people who know exactly how we are feeling and what a huge life-changing decision we are facing. Whilst our friends and family have been really kind to us, it is difficult for people to really understand how we are feeling unless, like you, they have been there. Thank you for all your words of advice and support. You have made us realise that what we are feeling is normal and that we are not alone. At the moment each day is a struggle but we know from your messages that with time things will get better. We haven't decided what to do next - we half want to have another go and yet half feel we can't take the pain any more. We are talking to our clinic and counsellor next week when hopefully things may seem a bit clearer. We're not going to rush into a decision but at the same time don't want to live with uncertainty for too long. We wish you all the best for the future in whatever you are doing and hope you don't mind if we call on you again if we need more help in the future. Thanks once again Mary and Andy B p.s. Alison and Grace: we hope and pray that your dreams come true in your next course of treatment. Lorraine and David: Thanks for sharing your experiences with us - you haven't upset or frightened us with what you've said. Thank you for your honesty, and we send our best wishes to you both.

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