Struggling to cope

[RoseTala]

Hi everyone. I have just joined this forum as I have just (a few days ago) been diagnosed with premature ovarian failure, and it has come as a complete and utter shock and not anticipated at all. I have been told my FSH levels are so high that there really is no chance of having our own children. My husband and I recently got married and have been trying for a baby for 3 months so it feels like my whole world has been taken away from me. I just wanted to reach out for any support and to offer support to others too as I am really struggling. It is helping to read other people’s stories to know we are not alone but I just can’t seem to find anyone to talk to about things. Thank you

[Blaze19]

I am so sorry to read your news and it sounds like you will be suffering with both shock and grief. When I found out that my husband and I couldn't have children I felt so isolated, like no one would understand (all my friends either had kids or no kids through choice). I went through huge grief over the loss of a baby I couldn't have and I needed comfort from others who were childless through no choice to get the real appreciation of what we go through. You're reaching out to the right place and the charity offers all sorts of support including volunteers you can speak to by phone and in some areas there are face to face meet ups. May be check that out if you've not seen it already and don't go through this alone. There are so many of us that can relate to your feelings and you are not alone x

[RoseTala in reply to Blaze19]

Thank you so much for replying it really helps to know someone else is out there and I am not completely on my own. That would really help to arrange to speak to someone, thank you for the suggestion. I’m so worried to tell my friends and feel isolated as you said. I feel like my whole life plans have been ripped away from me and I really don’t know how I will get through this and cannot imagine things ever getting better. I feel less of a woman and I am so worried about the implications to my long term health. My husband only recently got diagnosed with inflammatory bowel disease too and we are only just getting to grips with the implications of this, so I feel I can’t take anymore.

Can I ask if you ever considered donor eggs or adoption? I just don’t know how I feel about this but I can’t inagine my life without children. Sorry I am just so full of questions as it is so early and I haven’t had a chance to find out much yet. It’s maybe a little early to think down these lines but I feel I need some hope. I hope you are okay and I am sorry you have had to go through a similar situation, it just doesn’t feel fair x

[Blaze19 in reply to RoseTala]

Always remember that you are not going through this on your own. There are, sadly, too many of us who have been through it or going through it and reaching out to one another gives such comfort. When I told my friends they showed great empathy and said nice words but I knew they would never fully understand what it's like to suffer the heartache that we do. I would hope you're friends are the same and I am sure they will want to be there for you. Tell them when you're ready. I didn't share news with some of mine for a while as I didn't have the strength initially. My husband and I live in a 4 bed house which we bought thinking B&Bwe would have 2 children. I was exactly like you and felt like my world was turned over and whilst I'll never come to terms with being childless, I found ways of coping. I hope you can get medical support regarding your health and I am so sorry for your husbands condition, that must be so difficult. You will both find the strength to get through this. So I am able to have children but my husband can't and he couldn't deal with the emotional strain of a sperm donor. That would have been an answer for us but I couldn't force it when he only wanted his own biological child. I have also thought about adoption but never took it anywhere. It's been 2 years since we received the news. Everything you are saying and feeling is natural and I hope you find it helpful to speak to one of the volunteers or meet up sessions x

[RoseTala in reply to Blaze19]

Thank you again for replying and sharing your story with me. Im so sorry to hear about your situation too, it sounds really difficult but I’m glad you have found ways to cope over time and I hope you and your husband are still strong through everything you’ve been through. We keep just holding on to the fact that we have each other and that’s more than some people have. I know how you feel about having a house you expected to fill with children - we just bought and extended our house ready for having a baby... We told some close friends today but it just makes it feel more real, and as you say they try to say the right things but nothing can make it better, and it’s hard to know they too will want to try for a baby soon. We will hopefully see a specialist soon to discuss options and treatments so hopefully this will help in some way. Thanks again for the support x

[heather-moretolife]

Hi RoseTala,

Sorry to hear about the difficult time you are having. You are not alone as there is a whole community of us, all at different stages on our journey, living with the challenges of childlessness. I am the More to Life Coordinator and want to direct you to the support that we offer, which aims to help you achieve acceptance and a happier and fulfilled life over time: fertilitynetworkuk.org/for-...

Contact me if you would like to speak with a volunteer: [e-mail] but if you are not ready for that - maybe try the Self-help Guide or register for a webinar. You are probably in shock right now and it takes time to digest and come to terms with your news. Hopefully we can support you.

Take care.

Heather.

[RoseTala in reply to heather-moretolife]

Thank you Heather I really appreciate this. I hope I will be ready in a few days or so to speak to a volunteer or someone so will get in touch soon. Thank you

[MrsB89]

So sorry to read your news. I am also new to this forum. I was diagnosed with Premature ovarian failure a year ago soon after getting married (aged 28) but I haven’t felt ready to join anything before now.

I don’t have any words of wisdom for you other than talk to friends or family that you feel comfortable with, I have told very few people - nobody in my family knows (other than my husband obviously) which is my choice but it is really quite isolating (part of the reason I have decided to join the forum) so having someone to talk to is really important, even just to be able to say this situation is awful and this is how I feel!

Take time to come to terms with this news, take time to look after yourself and spend time enjoying time with your husband - take time out for yourselves to enjoy married life. It’s a grieving process and it takes time, allow yourself time!

Take time to think about any options and don’t be afraid to talk to your husband about what you want and the options that would be best for you both not anyone else but take your time, don’t rush into anything!

I would say the most important thing, especially at the moment in these very early days is take care of YOU! Do what you need to do for you!

I hope that is of at least some support knowing that you are not alone, even if it feels like it sometimes x

[RoseTala in reply to MrsB89]

I’m so sorry you are going through the same thing and thank you for replying. I have reached out to a few different places/forums online and it makes so much of a difference to know others are out there who really understand. I’m overwhelmed by the kindness of complete strangers saying such supportive things to me.

POF is not even something I had really heard of before last week never mind knew anyone suffering from any kind of infertility. It is absolutely devastating. I have been having panic attacks and not coping mentally, I have bad anxiety at the best of times. It’s so hard telling people but I find some people I have told have been amazing in trying to help, even though it doesn’t actually make the situation any better. Thank you for saying how important it is to try and take care of yourself, I’m going to try so hard to make myself better and be as strong as I can to try and fight this - some days I feel like I will get through it and others I just collapse, and it’s only been a week! So I can’t imagine how it is for you and others out there who have been coping for years.

I hope you are your husband are doing okay and keeping strong for each other. I know we may be at different stages with everything but please feel free to message me if you would like to chat at all about anything x

[MrsB89 in reply to RoseTala]

Thank you for you kind words. I think we are starting to come to terms with not having children, I have been told I have a 1% chance of natural conception (I have a few eggs but not many at all). We have spent the last year thinking and talking about options, for us they wouldn’t be right but that might be different for you!

We went on holiday about 2 months after the diagnosis was confirmed - adult only hotel as I couldn’t face being in a hotel full of children! I am much more able to be around children now - I have 2 nephews, a niece and another niece or nephew on the way and I love spending time with them. I try and look at the bad things like when they are being a nightmare and the good things like giving them back! It helps me get through it and on the bad days I don’t see them.

POF is something that is just not talking about unless you actually look for it! I know someone who was diagnosed at 26 (if you’re on Facebook her page is Justovaryacting - it’s very helpful!) so when we were going through the process it was something that was in the back of my mind.

I would say it’s completely normal to have days that you feel you can’t cope and want to hide away! I work in mental health which sometimes is helpful and sometimes not but I always say it’s ok to have days that you don’t want to speak to or see people, we all have that no matter what our situation so never feel bad for having days like that!

Unfortunately in terms of formal support it seems to depend on where you live as to if there is support with the diagnosis but if there is support, take it - maybe not now but at some point.

Don’t be put off by professionals commenting on “you’re too young to be going through menopause” it hurts but it gets better, it’s because it’s not understood or talked about enough!

I’m a year into my journey and I think I am only just really coming to terms with it in my own way, I think it’s taken me this long to process it.

I am lucky enough that I don’t usually suffer with low mood or anxiety but I certainly have been of late and I think it’s because of this horrible diagnosis! I am in the process of looking at HRT options to manage my symptoms and I have a very supportive colleague who helps me. A year ago I couldn’t even begin to think that I might need to have HRT, I told myself I was too young - im ignoring the fact that I turn 30 this year and have said I will stay 29 forever so it’s a big thing to consider HRT!

It’s like a grieving process, a lot of things I have read say the same. I’ve had to grieve for a child I will never have and grieve almost for the person that I was and that’s part of the reason that some days are better than others!

Surround yourself with things that make you happy and (where possible) get rid of the things or people that make you unhappy! YOU are the most important person and right now YOU (and your hubby) are the only ones that matter!!

Same applies from me - if ever you want to talk please do message me! I don’t know that I can be of any practical help but as you say words can help just as much sometimes. Writing how you’re feeling can be just as helpful and important as the words that come in return!

Xxx

[RoseTala]

Thank you for all of this and sorry for the late reply, things have been hectic the last few days to say the least. Thank you for the suggestion of the Facebook page - I have just spent ages looking through it and reading things - found I have spent a lot of time on google and various forums the past week!

I’m so glad you are starting to come to terms with things and finding ways of processing everything, I can’t imagine it’s been an easy journey. The last week has felt like a lifetime already to me. I love the idea of getting away from everything with my husband to try and process what is happening - hope we can find time to do that (and to get away from certain things which are causing further stress at the moment!). It’s so easy to spiral into a black hole of negativity and stress, so I’m trying hard to fight that.

As you say it’s so true that writing things down can help process your feelings, and hopefully it can reach out and help others in any small way possible. I still feel when I am writing this it’s not my life I’m talking about, it’s still so surreal but I’m sure it can only get easier. Yesterday I was crying and screaming and so angry at the world but weirdly this evening I have had a little bit of calm come over me (even for a short while) and I feel lucky for everything I do have in life.

I saw a specialist yesterday who everyone had recommended but I found him to be so unsympathetic and so unhelpful. He confirmed everything simply by looking at my FSH levels and said there was no way of ever trying IVF with my eggs (which I knew deep down but was still a shock to hear). He did a scan and found one follicle and some cysts on my ovaries but didn’t explain what this meant. He has also taken blood test for my AMH level but he didn’t even seem to think this was important - I had to push for it. He offered little advice or explanations of what I was experiencing (even asked me briefly at the end of the session if I would like to start HRT now with NO discussion as to what this involved! He said itwould help with my ‘symptoms’ to which I had already told him I’m not experiencing any yet) and sent me on my way. We asked if there was anything we could do to try with own eggs at all to which he replied ‘have sex’. We left feeling more confused than before. So not a great experience!! I would love to hear how you get on with HRT discussions and I hope you have managed to find a supportive doctor to help with this. I know so little about it but it does seem so scary so young.

I work in mental health too - in research/clinical trials. I also sometimes find it a good environment as people understand/are sympathetic if you’re having an off day, but I also find other people expect you to be fine and know all the answers since you work in that field!

When do you turn 30? I just had my birthday a month ago and it’s not too bad (except this damn problem!!) but I hope you have something nice planned to celebrate. X

[lc01sw]

Hi,I am sorry to hear about the issues that you are going through it must be really difficult for you, I hadn't heard of Premature Ovarian Failure before, must have been a shock for you I had a hysterectomy in 2011 as was suffering with polycystic ovaries and fibroids which was a difficult decision to make. Hope you manage to come to terms with your issues in time, life is hard to deal with. Take care x

[RoseTala in reply to lc01sw]

Thank you for your kind words. I’m sorry to hear what you have been through too and I hope you are okay. Life can be hard and so unfair but I guess we just somehow have to find some kind of way to accept and move on with things, not easy though xx

[lc01sw in reply to RoseTala]

That's right, have to adapt to a life without children which me and my husband try to do but like you say it 's not easy, book a holiday some where if you can, that's what we take advantage of being childless, take care x