News I didn’t want

Hi all, well today I received the news I didn’t want, I have got Sertoli Cell Only Syndrome, that’s it my chances of fathering a child that I have dreamt of since I was young, the chance to bring a new me in to the world taken away, I am completely devastated, feel like a total failure and to top it all off feel I have let my wife down. We now only have one option, a sperm donor, some other mans biological child, how do I feel about that, I have no idea, I don’t know who to talk to, I just feel so numb and alone. Has anyone else been dealt this news and how did you cope, who did you turn too, how did you come to terms with it. Sorry for the long post just don’t know where else to go.

[Fredaflintstone]

Hi Neilus, so sorry to hear your news. It's a real shock eh? I'm not in exactly the same situation because I'm female but I too am unable to have a child that is biologically mine. However I have slowly come to terms with it and feel incredibly lucky that we have the opportunity to have a child with donor eggs - all being well. I know I will love it as my own and I am thankful that we will in that way hopefully be able to have a baby that is biologically related to one of us. I've also always wanted a child and imagined a little mini me and am really sad that won't happen but I know my OH will be so thankful to me for having his child with donor eggs, for giving him that chance and I am sure your wife will feel the same. The child will be yours - you'll be his or her legal parent and will make decisions about the child's upbringing with your wife. The child will be a loved part of your family and is likely to have your mannerisms because children copy their parents. Perhaps it would help to arrange some counselling - its necessary through your clinic in any event for donor egg or sperm treatment. You might find it helpful to speak to someone about how you feel. We are all here too to support you if you want to share your thoughts and feelings. It will take some time to get your head around it. How does your wife feel about donor sperm ivf? I know people who have had donor sperm ivf and we would never guess they are not biologically related if we didn't know. Xx

[Hidden in reply to Fredaflintstone]

Thanks for your reply, it’s nice to know someone is out there. My wife is brilliant about the whole thing, she wants me to talk to her about it, she has said she obviously won’t fully understand how it’s made me feel as a man though but that she loves me for me and it won’t change anything. We have discussed the donor route before this and she has said it’s my choice if we proceed or not, she says she doesn’t see DNA, she sees a baby that will bring in to the world together and be ours, that we will love together , that we will raise together. I guess we have the opportunity to still have our family I’m just so scared about how I will cope knowing it’s not mine. We have seen the counsellor once before we even knew today’s results and she was great and made me think what was important, was it DNA or a family, obviously family as it’s what I have always wanted, however today’s results has hit me harder than I anticipated and don’t know how to process it.

[Fredaflintstone in reply to Hidden]

It's still early days and will take time to process the news and get your head around things. You are probably still in shock. It's good that your wife is supportive and is showing the kind of empathy that you need. Perhaps some extra counselling just for you would help too. Perhaps there are other things you could do to help you bond once baby is here e.g. men and women can share the maternity leave period (shared parental leave) now so perhaps you could take some of that time and look after baby yourself while your wife returns to work so you that time together? Or perhaps you could choose baby's name to help? Wishing you luck with your journey. Here if you want to chat more.

[Hidden in reply to Fredaflintstone]

Thanks, we have a good chat and I am beginning to see what I have around me and what I want and that’s a baby with my wife, maybe it’s not going to be the usual route but once I have got round the fact I can’t do what I’m supposed to do then things will become clearer. Going to see our consultant in a week and see what support I can get.

[Fredaflintstone in reply to Hidden]

You've already taken a massive leap! That's how I see it too. I want a family and ultimately no one else will be the baby's mum in my case or it's dad in yours. In this country the child has a right to obtain information about their DNA when they are 18. In other countries donation is anonymous so that's something to think about too. We're having our treatment here but I know others have gone abroad - not least because it tends to be less expensive. I think some NHS places do donor sperm treatment but I don't think any do donor egg treatment.

I wish you lots of luck for a happy future together. Sounds like you will be a fabulous dad! Some children don't have dads who are interested and engaged so your little one will be very lucky to have you.

Best wishes

[Hidden in reply to Fredaflintstone]

We are having our treatment privately in the UK, our consultant has been great and has tried everything to give me a positive result but it wasn't meant to be, from the start I said to my wife money is not an issue, I will pay any amount of money to have a child with my wife this is why I have kept going and going, being prodded and poked and walking like an old man after my biopsy and I would do it all again if they said there was a slim chance that they could find something, my wife however has said she would never let me have a biopsy again as she saw how much pain and discomfort I was in following it. Its amazing what we will put ourselves through to fulfil something that we want more than anything.

I also wish you and your partner all the luck for the future and I hope that everything works out for you.

[Fredaflintstone in reply to Hidden]

Gosh that sounds painful but I know what you mean I would do anything too!

Thank you. Fingers crossed. 🤞

[Kyell2]

Oh no. I'm so sorry. My OH discovered that he had this condition too at his SSR 6 weeks ago.

To be honest we haven't really fully digested it yet. It was quite a shock as his FSH was almost perfect but we have been told that this syndrome means there is nothing else that can be done.

If you have only found out today then all you can really do is take some time to process. We've taken a bit of a break from fertility stuff to process our thoughts, booked a holiday that we're going on in a few weeks and then we can see what we want to do next. Some of the ladies on here have given good advice about donor sperm but we're not ready to make that decision yet.

Can you talk to your OH, I'm guessing they're in shock too. Or do you have a close friend you can trust, it's such a personal thing, my OH had told only his mum really.

Look after yourself x

[Hidden in reply to Kyell2]

Thanks for your lovely reply, I’m also sorry to hear you OH has found out he has the same condition, it really feels like a kick in the teeth. I was given the indication following my biopsy 4 weeks ago that it stands a good chance I had this but was histology results that confirmed it, it sort of opened up a wound today . My wife and I have had a good chat about it and she has made me think about what I really want at the end of all this, that’s a family together, I count myself lucky that we have an option. I am going to take some time now to digest and come to terms that I am what I am which I had started to till today and then speak to our consultant next week to see what support there is and find out more about donors etc and then take some time to fully think about it. I hope you and your OH have a nice holiday and you have time to rest and digest your next steps.

[Kyell2 in reply to Hidden]

Your wife sounds very supportive which is great! I keep telling my OH, we're in it together no matter what and it sounds like your wife has the same idea.

I hope the consultant can point you in the right direction. Ours has been pretty crappy, and told us the news in a 3 sentence letter saying unfortunately there is no treatment. We haven't even got a follow up appointment so feel slightly abandoned 😞.

Feel free to message me if you want to chat/vent.

[_MrsC]

I'm so sorry to hear this. How absolutely devastating for you. Try not to blame yourself as it really isn't your fault. I know that's easier said than done and the nights can be very long and cruel.

We are not in the same position as we have unexplained infertility however, we have decided to stop fertility treatment so we are in the position of what to do next.

My husband is quite keen to adopt in the future and I always thought I would be but now I'm not so sure. Some of my fears are similar to yours, will I be able to love a child that's not ours? Will I be able to look past different looks, mannerisms etc. In my heart, I think the answer is yes but not yet. I need to grieve for what won't be yet. Perhaps this is what you need too? Could you give yourself say six months to have some quality time with your wife, some counselling and some time to get things clearer on your mind?

I am really truly so sorry to read your news. Thinking of you both.

x

[Hidden in reply to _MrsC]

Thanks Mrs C for your message, I am too so sorry to hear that you are also suffering problems, it is a terrible thing to hear isn't it. I had a very sleepless night last night, I felt so empty and I thought to myself why, I can't miss what I have never had, but that doesn't make things any easier. I Know that what has happened to me is completely out of control but it doesn't make it any easier does it. I am going to speak to work about counselling outside of the fertility circle and also make use of a sessions with the clinics counsellor, I just need someone to talk too, I need to address these fears that I have, my wife has said that everything I am feeling aren't true, I think she knows me more than I know myself but I have always been the same throughout my life, I always question everything and over analyse things, too many what if's etc. Hopefully I can see someone through work and they can help me to realise that what I am feeling is normal and that I can go to the next step and fulfil my wish of being a dad. I have Step Children who don't live with us unfortunately and I love them to bits, I have never treated them as another mans child, I treat them as if they were my own so surely this is what I would do if we went down the donor route only this time I would be called dad and legally be that child's dad, I would make every decision about that child's life but I still can't get my head round it. I think maybe a break to digest whats going on is a good idea, but part of me thinks I will never change, I will always sit here thinking the worst of the future, thinking over things that may never happen, as they say time is a big healer.

I hope that everything turns out well for you and again thanks for replying to my post it is very much appreciated.

[Lucyloo81]

I know of three couples who for whatever reason have used a sperm donor. They are so in love with each other and are excited to bring up a child together. My son is from a previous relationship and is 14, he has been in my husbands life since he was 5. I kid you not everyone thinks he's my husbands. The mannerisms, character and sense of humour. Your child might not be yours biologically but he or she will be yours.Good luck xxx

[Hidden in reply to Lucyloo81]

Thanks for your reply Lucy, a few people have said the same as you to me, i guess this is where the term anyone can be a father but it takes a real man to be a dad fits in doesn't it. I think once I have got my head round this all then all will turn out fine. Reading how people react to your son resembling your husband really makes me think does DNA mean anything, what am I worried about so much, we have a baby to love, to raise and to complete a family don't we, is DNA important at all, the more and more I read peoples replies the more I am starting to see this and understand it. I think I need a break to come to terms with the fact I have this Sertoli Cell Only Syndrome, and to focus on how much joy a baby will bring to me and my wife no matter how it comes about.

Again thanks so much for your reply, I really appreciate you taking the time.

[Lucyloo81 in reply to Hidden]

I couldn't of said it better myself. Take care of yourself xx

[Cinderella5]

We started out this journey with my hubby having a very low sperm count, I cant tell you how much he felt like a failure and it was heartbreaking to watch and hear, he told me he would understand if I wanted to start again. This is course was not an option as we are in this together. Its not quite the same but like a few other ladies that have replied the chances of me having my genetic child are pretty slim due to my age/egg quality, we have had 3 cycles with my own eggs to no avail. It was my turn to feel like a failure and have a small glimpse into what my hubby felt like. We have opted to have donor egg which was pretty hard for me in the beginning, my husband was very open to this from day one but did say he wasnt sure he could do donor sperm, he had similar concerns as you. Now we are in the process of going ahead with a DE cycle and we have had the chat that if we have to go down the route of DS (as its only an educated guess that its my eggs that is the issue, although he has had karyotyping done and no problems, just a very low count) and he has changed his mind, he just wants us to be a little family unit! We have friends that had to start using DS as her hubby had no sperm at all (and it took years for him to come around to the idea) by which time they found out that they would need to use DE too. They couldnt be any happier with their lovely daughter and being a family. Having also spent time with them you can see how much they love their little one....she even has her mums high maintainence traits but also has some of her dads relaxed nature, its a real mix!

Obviously it will take some time to get over the shock of your results but hopefully with the support of your lovely wife you can move forward with a plan that you are both comfortable with!x

[Hidden in reply to Cinderella5]

Thanks for your reply, I certainly have a lot to think about and its nice to see a ladies perspective on it, the emotional side around ES, I am guessing that the feelings are very similar. Its still sinking in and I have asked work if they could find me a counsellor outside of the whole fertility clinic environment, as I have recently had surgery for something else which I have coped with badly this has topped it off and I am now asking to utilise the support they offered after my last operation. From what everyone has said even though DS is a hard choice to make, everyone has entered in to parenthood as if the child was biologically theirs which is so nice to see, its really filled me with hope that what I am feeling now will start to fade as time goes by and that my wife and I can take the DS route and I can become a dad and have the family that I have longed for. I really appreciate your time responding to me and I wish you all the best for your future.

[Cinderella5 in reply to Hidden]

Hi, I think that couselling is a great idea and its really good that you are open to this! You may also be entitled to some genetic counselling too on the NHS but not sure if that's the avenue you want to go down or not or perhaps at a later date once you have dealt with your OP! Wishing you all the very best and thank you for your well wishes too!

[Hidden in reply to Cinderella5]

I have decided I need to speak to someone otherwise I will just go round and round in circles thinking what if this and what if that, I know the decision ultimately has to be made by me but I just want someone to talk to, one minute I am yes donor route is the way to go, then I start thinking again and I start to doubt myself and think the worst. I so wish there was more online support for me, it seems men don't like to openly talk about their feelings, me however I am a very open person and in the future will be around here to help any men that need help and support, hopefully I can get myself sorted first.

[Cinderella5 in reply to Hidden]

There is a mens room on another website called Fertility Friends. I dont know how often its used but you may find other guys to talk to there. Ive only seen a handful of men on here over my time of being a member but they are very support ones also! I have done my fair share of going back and forward and seeing women older then me with worse fertility results having succesful treatment but I have to keep reminding myself "how long can I put myself through this mental and physical torture", not to mention my age, I want to have kids before Im too old. IVF/ICSI is a massive lottery and I just dont have the odds in my favour!

[Hidden in reply to Cinderella5]

Well I have my fingers crossed for you and thanks for letting me know about the mens group, I will go and find it.

[ch319]

I will have to google this as I have never heard of it so I really can't offer any advice but I couldn't just read your post and ignore it. It really moved me. I'm so sorry you are your wife are going through this and I would say decisions about donors or other options don't need to be made today. Take some time to think and absorb together and maybe have a weekend break together. My thoughts are with you both xx

[Hidden in reply to ch319]

Thanks for taking the time to reply, it’s so kind of you even though you didn’t really know the condition I have been diagnosed with, it was very touching. We are going to chat through things again and I think I might start fighting down my worries and fears and then cross reference with how this will change our life bed, what it means to both of us etc etc, then hopefully having things written down will help me to focus and to overcome what is worrying me.

[ch319 in reply to Hidden]

I completely get what is on your mind. It is a huge decision and there is no right or wrong answer it's just what you feel will make you both happy. Infertility is more tough than a lot of people realise. Take care xx

[7AVA]

Hi Neilus, I am so sorry to hear your news and agree with the other posters here about taking time and counselling. I know of a couple who conceived a little girl with ivf donor sperm and a now a perfect family unit. All the very best xxx

[HopingWish]

Hi am neilus's wife I would like to thank you all for such kind words and support , he will have my full backing on deciding to go down the donor route and if he feels he can't then that's fine to as I got into the relationship knowing he couldn't have children.Hes a great step dad to my boys and they adore him x

[7AVA in reply to HopingWish]

Sounds like you got one of the good ones. Wishing you both all the very best in making your decision and in your future together. Xxx

[Lizzielizzielizzie]

Hi

I haven't read the other replies, I just wanted to let you know that my good friend also has this. He and his wife now have two boys born through iui, one 4 and one2; they were able to choose a donor who looked like him and there's no way you could tell from the outside that they're not genetically his. He tells me that, though it was a difficult journey, in some ways he is glad that they got a definite answer quite quickly and were able to get working on the solutions quickly. It meant they were still able to have their family in quite a short timeframe rather than the years and years that many couples with unexplained infertility feel.

And yes, he totally is their dad. They don't have another dad somewhere else, just a genetic donor.

I hope you manage to access the relevant counselling to help you come to terms with it as I can see from spending time with my friend that it's possible to have a happy family through donor sperm if this is what you decide to do.

[Hidden in reply to Lizzielizzielizzie]

Thanks for your reply, it’s nice to see a positive outcome to having to use a donor, it’s these stories that have really started to put my mind at ease, I’m feeling less angry at my diagnosis today and more focussed at getting some support to prepare me for the next step, my family is the only tho g on my mind at the moment. I really like what you said about your friend being the only dad and the children don’t have another dad somewhere else just a genetic donor and I guess that’s what I need to get my head round they are just some kind person that has given a couple who love each other the chance to have a child that they would never of had. So much can to think about and so much to digest, it’s only been a day so still raw to a degree. Again thanks for replying and sharing this story.