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Endometriosis UK
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Social isolation

Hi ladies,

I have stage 4 endo and have recently been diagnosed with adenomyosis amongst some other health complaints. I've had 4 laparoscopies and am due to have an open surgery with a few surgeons involved next year.

We had a chance to try for a family in 2012 but we weren't in a good position financially. Since sept 2012 I've always been awaiting surgery, in recovery or on prostap. We were told after the last surgery that - provided my review appt went ok I'd be able to come off the pill and try. We got married and the review came a few days after - they found adeno on the ultrasound and instead of everything we'd planned for I'm back on the waiting list again. A month ago I had another appointment and finally they agreed I should probably come off the pill and start trying despite the risk of things getting worse pain wise.

I haven't told anyone about this because I don't want to face getting asked if we're pregnant yet at every opportunity...

I feel a tremendous sense of loss at not being able to enjoy the first six months of my marriage, instead taking in the shock of something else being wrong and pain being awful. Since being off the pill I'm very nauseous, the pain isn't as constant but is more stabby and severe, it's difficult to walk far. Sex is ok at the tiI me but I'm a mess in the days after so it's hard to encourage my husband to essentially hurt me again.

To get to the point, a number of friends are now pregnant and I feel I can't be around all the bumps and pregnancy talk. Partly because it makes me think about what I'm stressed about and partly I have to lie that I'm ok, if I talk about what's actually going on for us I start crying. I don't want to take the edge of any friends celebration or be unsupportive but I need to look after myself too.

I've honestly never felt as inadequate and even feel embarrassed as with time going on it's becoming more and more obvious to the outside world that I can't function like a normal woman. The worst of it is when feelings like this crop up I feel like I'm letting my husband down and it actually hurts emotionally to be near him.

I know you all must feel the same sense of alienation when you're lying with hot water bottles, high on painkillers.

I miss feeling aligned with my friends, it's so difficult to relate at the moment.

Do any of you have any tips to be able to cope with this sort of situation better?

3 Replies

I read your post and just wanted to 'virtually' put my arms around you and let you know it will be ok. I think many of us can identify with your sense of isolation, for our own, probably different reasons at times. This is what the disease does to us. It took so long for me to realise, - I'm not 'normal' so it was ok to stop expecting myself to be! You are much stronger than you think you are, cope how YOU need to, not how you think others want you to. Despite often feeling sad I can't be normal, once I 'let go' of trying to live up to that, I can tell you I felt so liberated. Now, I focus on what feels right for me. I do know that there are lots of partners out there who are very supportive , once we share our fears, and let them In. It took me years to work that one out too!

Good luck, take each day as it comes, putting one foot in front of the other is easier than running a marathon, even if the destination ends up being the same x.

1 like

Thanks for this, I'm hoping certain friends can understand I need to look after myself right now. The next op I'm scheduled for is a yr away, it's risky and I may lose my womb in the process. So I'm trying to get my head around that I'll be facing that when surrounded by newborns. How do you say to your friends "congrats I will see you in a few years when they're toddlers" lol

In the meantime I've come off the pill which I'm finding tough and we have 1 yr to try so you're right I need to do what's right for me and what makes me feel good so I'm not so stressed out. Xx


Im not yet at the age where Im trying for a baby but i understand in the social isolation sense. All my friends are going on overseas trips, getting full time jobs and getting married and Im in so much pain on a regular basis that just this year have lost two jobs and an internship so i can find it very isolating staying home with my mother who struggles to look after me as she has health problems too, whilst my friends complain about their work or the cost of getting married. I feel quite alone sometimes and its hard.


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