Endometriosis UK
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32 and struggling with hysterectomy

Hi all,

So last year i had a full hysterectomy, removal of both ovaries and tubes and a bowel resection due to stage 4 endo. I am now 1 year with no pain which in itself is amazing, i finally feel like i can move on a bit but now i feel lost, like i don't know how to move on. I always thought i would have had children and that was my plan. I have a complete empty feeling just now and i've been either trying to fill it with other things.

So far i feel like i want to run away and just be by myself, husband is lovely but just does not understand, says things like 'aw well i don't think i would have wanted kids anyways' which doesn't make me feel any better makes me feel like ive spend 11 years with a man who doesn't want the same things as I do.

Any advice would be appreciated x

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Hi Harley_Q so sorry to hear you had to have a full hysterectomy, that must have been really tough to get your head around wheh you're still of child bearing age. Endo is such a cruel condition 😢Glad to hear you're free of the awful pain though.

Could you access any counselling, whether via the NHS or privately? Although our situations are different I see a counsellor because of infertility and something she does do is help people through accepting they won't carry a child. I'm not at that point yet but it's something I've broached with her and although I'd never had anything like counselling before I have found it helpful.

Could your husband be saying things like that to try and make you feel better/try to make sure you don't feel guilt that you can't have biological children..not that you should of course but I know lots of women do. The emotions stirred up are so complex and aren't always rational, speaking from experience! He may not want to upset you any more after what you've been through.

It's a very personal decision but there are other ways you could become a mummy, adoption or surrogacy although admittedly I don't know much about surrogacy in the uk (assuming that's where you are) They are big decisions though and although it won't be easy I think you should have a really honest chat with your hubby about where you both see your future.

I really hope things look brighter for you asap, hugs xx

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Thanks for taking the time to reply. I know things are going to take time. My work is currently sourcing some counselling for me so I'm hoping that gives me some sort of direction or starting point. X

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You've already been given great advice regarding counselling. Just wanted to throw another idea which may work for some or be horrifying for others, apologies if you're the latter. Have you considered getting a pet. I love my fur babies a cat or dog will give you something to focus on. A dog would give you something to do in walking it maybe you and your partner together. Hope I've not caused offence, in my opinion pets can be very therapeutic. Good luck.

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Thank you for taking the time to reply. I already have 2 furbaby dogs so no offence taken there at all. I love them I really do I just feel a bit lost but I will see how I do with the counselling x

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Aww bless you there's no right words. So I'll just say good luck and come on here to vent if you need to.

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so sorry to hear what you are going through, it struck me when you said what your husband is saying that he may well just be saying that to make you feel better, as Georgina said. It's the sort of thing my partner used to do in his own stupid way to try to help! I found with things like endo and 'female' problems (horrid way to put it but you know what I mean) partners can feel so lost and helpless and don't know the right thing to say. Only you know what steps you want to take next but don't rule out adoption, it worked for a lady I work with who tried years of ivf and it's given her what she so desperately wanted. Whatever you do, sending you lots of love xxx

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Another positve to the adoption if yiu wanted another positive is that you get to tell the child how special they are because they were chosen by you.

Someone my mum knows adopted 2 brothers and they were such a good family fit noone would know unless they were told that they weren't biologically their own children. The children grew up with the view that the felt even more special beacuse of all the children in the world my mums friends picked them xxx 😊

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Hi Hayley. Just to add my sympathies and say I have some idea what you're going through as although I was 42 when I had my hyster it was at that point I was told I would never have had children due to endo and adenomyosis and misshapen womb. Not easy to hear when, like you, I've always wanted children.

I agree with trying counselling as it has helped me and I know I need more. But also two organisations that have helped me are hysterectomy association and Gateway - the latter supports women without children who find themselves there for any reason.

Above all just be kind to yourself.

Take care

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Thank you Marcia! I will have a look at those organisations you mentioned. It's just nice to know I'm not on my own as it can feel quite isolated at the moment. No one really understands what I'm feeling, saying that neither do I!! I will get there tho 😊 x

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I was only saying yesterday to a friend of mine who hasn't been able to have children why does no one really get it? They may have kids themselves but surely they can understand why we feel odd/down/different/sad or anything else when people talk about kids but it seems others just don't have that kind of empathy.

We'll all get there together!

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I just feel as though people think ah well why don't you adopt/foster etc as thier default reaction. In no way do I think that is a bad idea I just think that it's not the same. You don't get to do all the things that you would if you had gotten pregnant naturally and had all the excitement that goes with that. All the wonder of who the baby will look like and be like etc. It's like torture.

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Totally agree with you. Just know there are some of us that know exactly how you feel and think and it's all perfectly normal and it's ok to feel that way.

Take care.

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Thank you x

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You are allowed to feel however you want to feel. No one should be told any different. Or be judged or treated differently because of that. X

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This has really helped me as ive to make the decision on full hysterectomy ive been though alot off opperations which didn't go well my partner is the same feels helpless as can't help me but ive realised my health and life comes first as nearly lost mine during one off my surgery's there is nothing more i would want is kids off my own but I believe everything happens for a reason life is cruel just hoping can save some off my eggs and not to badly damaged good luck for the future keep your chin up hun I know its hard things will work out for the best xx

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Thanks for the reply. It's such a hard decision which in my case really wasn't a decision I could have made any other way. I was taking morphine/pethidine daily just to cope with the pain and even then it didn't help that much. I don't regret getting the hysterectomy for a minute as it's given me a life back but it's only now things are feeling more normal the reality of things have hit me square in the face. Good luck to you too and hope you get better quickly :) I know everything with fall into place eventually it's just the journey getting there! Xx

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You dont have to journey alone. We are all here to keep you going when you find yourself getting tired or feeling lost. X

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I think your husband is trying to reassure you that he isn't going to leg it cuz you can't have kids .. men arnt really subtle .. I would see it as sweet. My partner's aware I'm infertile, he has 2 children, 1 early 20s and 1 8, but constantly reassures me that he'd have loved to have had children with me, but it's ok that I'm infertile .. lol. Councilling sounds good, cuz dont take this personally, but it seems you're taking your problems out on those closest to you (your husband).

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Oh I'm under no illusion that the people closest to me are getting the brunt of things but it's not like I'm in a bad mood or depressed I just feel a bit distanced from everyone and not sure what do with myself. I feel like I can't complain because I threw myself into work the last year even landed a great promotion but still I'm like meh. X

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It's hard .. You will have plenty of ups and downs .. I honestly can't imagine what you're going through cuz I wasn't really bothered whether I had children or not. It will do you good to get it all off your chest with a stranger .. be careful not to push yourself too hard cuz exhaustion will actually make it worse for you! Running will not hide your problems! It will all need working through and a councillor will be perfect for you to help you do that!

Good luck xx

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Thank you xx

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I like your attitude and advice. X

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Sending you a hug .I had a total hysterectomy at 24, as previously suggested a councillor would be a good idea.it may be your husbands coping mechanism .

Love to you both

Xx

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I think you maybe right.

What can a partner do in a situation out of their control. It must be really hard on them knowing they cant help. That they cant make you feel better or take away something that is causing someone they love so much pain and suffering.

And then they want to reassure you that everything will be fine and nothing has changed.

How can you tell someone that even when they are breaking inside because they have to make a decision that will change their life forever....that it will all be ok....when they dont know themselves?

I went through my decision myself...i had my mum dad and siblings to be there for me. But no partner to lean on. My future is unsure with regards to partners....how do you tell someone you cant do something that they assume automatically that you can? When are you supposed to tell them? 1st date? 2nd date? A month in?

Tell your partner how you feel...they cant see inside your head, how else will they know how to support you? Xx

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