Feeling isolated

[AlexandraT]

Hi ladies,  just a quick post looking for a bit of support.  I've been pretty poorly this year and am hopefully having a hysterectomy soon as I have several issues now as well as endo.   My fatigue and pain has led to my social life going down the pan over the last few years or so, which has led to me seeing less of my friends and feeling quite isolated and lonely.  As well as that so many are or have recently had children.  I am unable to have children (the end saw to that) which is something I have come to terms with.  What I find really difficult is that I've slowly lost most of my friends and as soon as they have children I have so much less in common with them.  Everything understandably becomes about babies and I have nothing to really talk to them about.  It's like they are part of an exclusive club that I can never join or be part of.  I am feeling very lonely and down at the moment.  Any words of support or advice regarding support groups etc would be really appreciated.  Thank you xx

[Yazza]

Hi Alexandra,

Do you mind me asking why your having a hysterectomy? My reason for asking is because depending on what pain symptoms you have unless all endo is excised (not lasered) a hysterectomy WILL NOT cure your pain? 

I have had 2 surgerys already and have spent many hours researching and educating myself on this miserable disease🙁...

I understand you feeling isolated to a degree however I'm fortunate to have 2 children but still due to pain i also have lost touch and missed out on many of occasions as when the pain hits the only comfort is a heatpad and pain relief.

Big hugs Sharon. X

[AlexandraT in reply to Yazza]

Thanks Sharon.  I'm having a hysterectomy because it looks like I've got adenomyosis/ fibroids now too. Agree re the heat pad,  sometimes I make mine so hot it burns a bit!  Thanks for the reply,  good to know I'm not alone x

[Niobii]

I completely understand and even though I'm not getting a hysterectomy (yet) I've been in exactly the same situation and it sucks. My best friend has now drifted apart from me since having a baby and it's like I've been going through the stages of grief. It hurts like hell and I've felt completely on my own. I'm not short of 'company' but I'm lonely for those special friends who 'get' you, that you have a history with, where you can be yourself with no guard up. There's a website called the friendship blog and it's lovely. It also has a forum section where you can chat to people in similar situations. I've learnt to accept where I'm at right now and try and be patient and open to meeting new people. Hope this helps, but you're not on your own with this. Sending you big friendly hugs xxx

[AlexandraT in reply to Niobii]

Thank you very much,  I'll definitely have a look at the website you suggested. I need to try and be more positive,  it's just hard as you know when I'm in pain all the time.  Thanks for the support xx

[applebird]

Hey, just to echo the other poster; hysterectomy is not necessarily a cure all for Endo and can cause many health issues in its own right, especially if you are younger. If the ovaries are left Endo is likely to persist. I'd recommend seeing a specialist for excision surgery at a bsge centre. If you have adenomyosis as well hysterectomy is the only way of solving the problem, otherwise do further research as its a big commitment with no way back.

As for the isolation, I've kind of been on both sides of this. Thought I was unable to have children and suffered miscarriages so it literally felt traumatic whenever friends started to have babies. Not only was I 'not in the club' but what they were talking about was just upsetting as it seemed it came so easily. You do go through a sort of grieving process for that friend and feel excluded. Then of course you feel bad you can't be there as much as you want to be for kiddie friends as it just brings up stuff for you.

What I would bear in mind is that pregnancy in particular can also be isolating. I'm now in the situation where the mummies are fantastic to me as I'm pregnant - plenty of baby talk and friendships rekindled there but sometimes all the baby talk gets old! 

I know some of my friends without kids have been out together and haven't invited me. There are various reasons they don't have kids so I do understand that having the preggo bore there would be difficult and when all the baby stuff is going on around you - sometimes you just want a night off don't you?! So I'm not bothered.

Hormones make you focus on the baby a lot hence the incessant chatter about them, but underneath it all your friends are still the same people and probably miss you too. They likely miss a lot of the things you are able to do - I have a single friend who's able to travel at the drop of a hat and is always out doing a,b,c. I love hearing about what she's up to and talking about stuff other than nappies. If you feel up to it reach out - there will be some mummy friends with a one track mind, but others will still retain other interests.

Reaching out to a support group is a great thing to do - Endo uk has a list on their website so you can find one close to you.

Otherwise I would recommend doing things for you to make you feel better, really loads of self tlc. Take up a class, meet new people, do what you need to relax and pamper yourself that kind of thing. What you're going through is a lot so it's important to prioritise no. 1 xx

[mountaincat]

Hello, I want to say thanks for being so frank about how it feels to be isolated and to be the only one in a group of friends without a baby. I really feel for you, and you've done a good thing by asking for help here. What you've said has made me admit this problem a bit more fully to myself - i think I've been in denial a bit, and have been so focused on the physical aspects of the disease that I don't deal with the emotional side of it. Always a bad idea as emotions that you ignore just fester, they don't go away.

I have lost large chunks of 2016 due to fatigue; I've had to limit physical activity a lot and spend a lot of time at home by myself. My friends can be very supportive occasionally, but of course their children come first and they mostly cannot spare time/energy to visit me now. I've had a lot of cancelled plans. I don't blame them of course, what can they do? It's tough realising and accepting it all though, and when I do see them, after they leave, it can be hard having seen their cute children and knowing it's something I will probably never have.

I found out that in the summer, four couples and their children (2 of the couples are good friends of mine) went as a group on a weekend break, hiring a cottage not far from where i live. The friend who mentioned it to me looked a bit pained as he said it. I'm not sure what's worse, that awkwardness and pity, or the knowledge that being excluded is inevitable for some years to come.

I know that getting caught up in negativity about this won't help me, so I'm trying to focus on what I can be grateful for, and think of the advantages of not having children. This isolation is not good for me though, and like the OP, I would benefit from meeting other women like myself.

I think I would be happier if I could find friends who can't/don't have children. In fact, I think I'm going to do a bit of google reaserch and see what I find. I know that my local Endo support group is unhelpfully far away, but perhaps there's something else out there...

[Hidden]

I know that awful feeling and ild rather not saying anything about how friends and family with children have drifted.By joining an online group you’ve taken a good first step and have friends on here now.Hang in there and am sending you hugs.