Just diagnosed with endo and finding it hard - Endometriosis UK

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Just diagnosed with endo and finding it hard

Jessie24 profile image
14 Replies

I had my laparoscopy 2.5 weeks ago where I was diagnosed with endometriosis. Although I was told beforehand all my symptoms point to it being this and I had prepared myself, I still feel really emotional about it and feel people don’t really understand.

I think at the moment it’s all the what if questions and that this pain may not go away. I would be really thankful for any suggestions to help dealing with it :)

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Jessie24 profile image
Jessie24
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14 Replies
AllthatGlitters profile image
AllthatGlitters

Hi Jessie24 I totally understand how you feel as it came as a shock to me to be diagnosed with gynae conditions and looks like you are feeling the same way as I do. I came on this site as I didn’t feel that my family and friends understood either. I also didn’t want to keep going on and on about it to them. You will get lots of support on here.

As for dealing with the emotional side of things, that’s a struggle and I can’t really suggest anything apart from cry when you need to and surround yourself with people who love you x

Jessie24 profile image
Jessie24 in reply to AllthatGlitters

Thank you for replying, I think it makes it even harder that it’s almost like an illness that is put to one side isn’t it, disregarded in a way. What advice were you given about having children, just because my appointment with gynaecologist isn’t for another 5 months 🙈 and just want to start seeing what my options are. I’ve started the combined pill now as the coil made my symptoms worse xx

AllthatGlitters profile image
AllthatGlitters in reply to Jessie24

Hi I was told that it could be a possibility that I could have children, I guess nobody really knows until they start trying? I have a friend who has the same illness and she has a child, all hope isn’t lost x

Cupcake1617 profile image
Cupcake1617

Hi, I totally understand where you’re coming from. Nothing quite prepares you for the diagnosis or the future.

This community is fantastic - ask away & someone will try to help. It’s all new so you’re bound to be emotional. I’m 2 years on from my diagnosis and I still get upset, why me and what’s next. But the longer things go, you kinda get a jist if meds which work for you to control the endo and the pain.

I also found for me, having the frank conversation with friends had them understand more which led to them being more supportive. For 18 months I did the whole “I’m fine” thing, then at my birthday meal I ended up crying because I knew I wasn’t fine and I was on my third Prostap injection. Don’t be afraid to talk about it or even get upset. X

Jessie24 profile image
Jessie24 in reply to Cupcake1617

Thank you for replying, after reading your post I thought it would be best to also have quite a frank conversation. I don’t know how you found it but people would say things like but it might not be like that and you don’t know that for certain, which can be quite infruriating as I suppose unlike them you’ve read all the charity information and read research. I don’t know, I think people are starting to understand but maybe not understand the true extent. Do you know what I mean? I think it makes it even harder that it’s almost like an illness that is put to one side isn’t it, disregarded in a way. What advice were you given about having children, just because my appointment with gynaecologist isn’t for another 5 months 🙈 and just want to start seeing what my options are. xx

Cupcake1617 profile image
Cupcake1617 in reply to Jessie24

Yeah I totally get what you mean. Mine all came out when I was put on Prostap and I ended up crying when we went out for my birthday meal because for the first time in 18 months I felt really good and like me & I think that shocked them. They asked lots of questions and it was actually quite nice to get all my hiding out in the open.

For me I now answer the phone when I’d rather not and if they just get me going hmm and yeah then that’s all they get - they then know I’m not upto a full convo but I’m not ignoring them either.

Oh yeah, it’s an invisible illness. No one gets it until they get it, quite literally. My sister has no idea what I go through because she doesn’t live with me, but my parents are very understanding as they see it all and also get the brunt of it.

I haven’t gone down the path of children as I’m not at that stage. But I hear after a lap is a good time to try, but also if it’s not the right time for you then don’t rush things. I’m a believer in what’s to be will be. I think we can get IVF too? So there’s always options if falling pregnant naturally doesn’t happen - but saying that, lots of ladies with endo do fall preg naturally x

Jess_85 profile image
Jess_85

Hi what you are feeling is completely normal and understanderable considering what we are all hoing through. In regatds to the emotional side there are support groups you can go to. I dont have any near me but found some on facebook for mental health and endo which has completely turned my perspective around. Just don't be hard on yourself this is a hard condition to live with and no one has an idea unless you are going through it especially at the beginning stages. Big virtual hugs 😀x hope you feel better soon.

Jessie24 profile image
Jessie24 in reply to Jess_85

Thank you 💗💗💗

hanybobany profile image
hanybobany

Hi Jessie, I am in the exact same head space as you so can totally relate. I had my laparoscopy back in March and was diagnosed with stage 4 endo in April and since then have felt isolated and completely in denial. I wanted to completely detach myself from it and what the future may hold for my health and fertility. Nothing can quite prepare you for the psychological effects of a diagnosis and the lack of control and isolation it brings. I guess my advice would be to embrace your diagnosis as soon as you can and talk about how you feel as much as you can too. You may feel like people around you don’t understand and that is a lonely feeling but even if you feel this way it’s important to talk and offload your thoughts and feelings. If you built these thoughts and feelings up you will become angry and resentful, which is where I am at now and on top of everything else that you are dealing with that’s not healthy. I hope my advice helps you, at least helping others makes me feel a bit better about my situation. Good luck and try to stay positive x

Jessie24 profile image
Jessie24 in reply to hanybobany

That’s been so helpful, thank you so much. I definitely agree I think for me having children is the biggest thing, that I could almost come to terms with having pain forever but the uncertainty of how your fertility is affected really makes me emotional. Definitely feeling far more positive than I was feeling 2 weeks ago and my fiancée is so supportive which is great. Have you seen your gynaecologist since your laparoscopy? Xx

hanybobany profile image
hanybobany in reply to Jessie24

It’s a bit of a rollacoaster I’m afraid. Your emotions will be all over the place. I am meeting with the specialist next week to determine what treatment is available to me and how the endo is effecting my fertility. Bit of an emotional wreck at the mo, I’m fearing the worst but whatever happens I will have to deal with it so there is no point burying my head in the sand. I’m glad you have supportive people around you because that really helps x

Fooofs91 profile image
Fooofs91

It gets better love I promise 😊 you will become a fighter and that pain will fade away slowly as your body will learn to control it through a rich diet and healthy life style don’t worry xxx

Jessie24 profile image
Jessie24 in reply to Fooofs91

Thank you 💗💗💗💗

GKing5 profile image
GKing5

Hi Jessie. I feel the same way you do! Had my lap 4 weeks ago today. Told it was endo and have to take Cerazette (eve though I have been sterilised - I’m 46 with a nearly 20 year old). I’ve been told nothing else. I feel lost. I don’t want to take the Cerazette as the hormones give me awful side effects but I don’t know what will happen if I don’t. I’ve felt permanently ill since having my lap which scares me if I ever need another. Everything I read frightens me too! Where do you ladies get these stages of endo from? I have no idea where I am other than lots removed :-(

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