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Endometriosis UK
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feeling like nobody understands

Sorry if this seems like a rant but mood has hit rock bottom today.

I had my post lap follow up appointment today and I’ve come out feeling absolutely miserable even though I knew what I expected to hear it still has made me feel so sad.

Gynae has Said to me quite abruptly “well I don’t want to say you’re infertile, but you know the statistics it’s very possible and you will likely struggle and have to try a lot longer than most and it may not happen”

Maybe I’m over reacting to these words but I’m really upset, my Oh and I have a plan to start trying within six months but the thought that my body could be broken in a way absolutely crushes me considering one of my only dreams has been to have a family. OH is trying to reassure me but in a way it feels like he is minimising it (not his fault he is trying very hard) my family knew I had the appointment today and none of them have even bothered to ask how it went or how I’m doing

Just needed to rant to some ladies that would understand how I’m feeling.

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Hey, I’m so sorry to hear you’re going through this. I understand how upsetting it can be to hear you might struggle to have kids or not have them.

I’m glad your partner is trying to help, I know guys do struggle in this department haha but at least he is trying. As for your family, mine were never understanding before my lap as they thought I was making the pain up to get out of doing things or being a drama queen 🙄

If you want to have kids, you could at least try since there’s a possibility you can pregnant but there are also other ways to have a family like ivf or even adoption if you wanted to. You’re not over reacting to the gynaes words, it’s just the shock and heartbreak, I know it’s hard but try to remain positive even if it’s just a little ❤️ xxx

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Guys do struggle in that department but bless him he might not know the right thing to say but he makes sure I’m appreciated and as happy I could possibly be. My family genuinely don’t seem to give a damn about it I seen them yesterday and mentioned again I’d had an appointment but they didn’t want to hear it. After taking a day to myself and a bit of self care I’m feeling better I think just the intial shock hurt a bit. The hope isn’t gone yet by any means

Thank you lovely hope you’re doing well xxx

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Hi I’ve not been on this forum for ages, came on looking for answer myself about something else but saw your post and felt compelled to reply. It’s definitely a lonely journey sometimes with endo and only those with it can understand to some extent. Your partner sounds like he is trying to understand at least.

I had very severe endo, it took us nearly 2 years to fall pregnant, I thought if would never happen. I ended up using ovulation predictor kits ( they were not that common 13 yrs ago), 1st month I used them I fell pregnant, I ovulated much later in my cycle than I thought. Once we’d had one baby we left it to chance and very soon baby no 2 came along. I was told once your tubes have been cleared so to speak, a second pregnancy is quicker to come! Don’t give up hope yet xx

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Your story gives me so much hope, endo is a journey of so many emotions and I’m so glad to have women who understand.

Thanks and hope you and the kids are ok xxx

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I don't think you are overreacting, even if you know the chances it's quite a horrible thing to hear from a doctor. Theres no escaping it once they have told you.

For some reason this really helps me, no women knows they can have children until they try. If you struggle, you'll know why and you can deal with it much quicker than someone who doesn't know. For example you can start saving for IVF now, whereas if you didn't know you wouldn't see the point. It's a small thing, but it helps me deal with it.

Also I don't know if this is the case for your family, but one of my friends messaged me the day after my initial appointment with the gynecologist, she didn't want to upset me if I had bad news so she gave me a day to start processing it all.

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Unfortunately I even reminded my family I’d been at the hospital but they didn’t want to hear it but partners family have been amazing, his mother even offered herself up to come to the appointment with me because I was going on my own bless her. You are right I’ve not been told I’m definitely infertile so trying and seeing is the best way

Hope you’re doing well xxx

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Dya know what? I’m getting so massively annoyed with the stuff endo sufferers are experiencing.

I’m so annoyed at the doctors, I know they’ve a difficult job but empathy is just not being shown!

I’m angry when people don’t take you seriously when you say “I know I have something wrong with me.”

And I’m totally annoyed by the fact that the more I look into this illness, more and more sufferers are having to be so tough just to get basic answers and help.

I really hope you pick up soon.

I turn to this app when I’m feeling rubbish about my symptoms. It’s been a lifesaver.

I felt proper rubbish last week, but I’m not anywhere near your position.

I haven’t been diagnosed and I’ve never felt like I want kids, but I can’t even imagine how that made you feel. Why did the doctor just use a bit of tact when telling you that?! Really gets my goat!

Anyway, rant over. Hugs from me and hope you have a good day tomorrow x

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Endo is a long journey it took me ten years of going back and fourth to the gp before they would even refer me to the gynaecologist to get my diagnosis but it’s worth it just to get some answers.

I’m feeling lots better today now I’ve had some time to give myself some self care and process it a bit.

My doctor is anything but tactile he is a very blunt man and he often makes me feel as if I’m wasting his time. Now I’ve been diagnosed and they removed the endo he has discharged me straight back to gp.

Best of luck to you and I hope you feel better soon. Xxx

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I was diagnosed with pcos when I was 14 was told I’d probably never have kids or it would be a struggle or would be ivf if i did. Fast forward to now and I have four :) my youngest girl I caught for straight after a lap and some cyst removal ( kinda woke up my insides up I reckon) she’s now 12 and my youngest is four and caught for him after a lap too.

I now have endo although not diagnosed I’ve had all the symptoms for years so may have had it since 14. Now waiting for a hysterectomy as I’m done feeling this way.

Not saying we are the same, but just wanted you to hear that doctors don’t know everything :)

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So sorry to hear you are feeling down. I can relate to a degree to your upset. I feel the nhs need to have psychological support to go along with this condition. To have an assigned mh nurse/counsellor - someone who you can contact when the psychological impact can get too much. Being a mum is part of an identity of being a woman and to be told in such a blunt way with little care you are likely to not be able to achieve that is devastating. I am also struggling with this too. I also can relate to family not asking more about what is going on. I recently felt let down by similar situation with mine. I think out of everything family are the ones that make things so much easier when they show they do care, and make things so much more upsetting when they act like they dont (likely without thinking). Perhaps mention to your family this is a deeply distressing time and ask for them to either give you space, so at least then you wont be let down by them and you can process everything without that interferring or else explain how you feel and suggest to them how helpful they could be if they asked how i was a little more right now. Much love to you, let us know how you get on xx

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