Learning to deal with endometriosis - Endometriosis UK

Endometriosis UK

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Learning to deal with endometriosis

Liberty37 profile image
5 Replies

I am so glad I have found this page. I have recently been diagnosed with endometriosis after years of painful heavy periods and ttc issues. I only got diagnosed following a scan where a cyst was found. Then completely freaked out when they requested a CA125 blood test, little did I know that this would be raised. Thankfully my cyst couldn’t been seen on my follow up scan but still have raised ca125 levels. Even though my consultant says it’s nothing to worry about it still freaks me out! I think I am driving my husband crazy with my emotions!

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Liberty37 profile image
Liberty37
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5 Replies

Getting diagnosed is such a roller-coaster! I remember freaking out when they asked for that blood test as we have a history of certain health problems in my family. I hope you're coping well with you diagnosis it's a learning curve but at least now you have a diagnosis and know what's wrong. Your husband will adjust haha my fella learnt pretty quickly to sit at a distance and chuck bits of chocolate at me on flare days lol x

Liberty37 profile image
Liberty37 in reply to Theendotravellercouk

Thanks. Hubby just grabs the hot water bottle as soon as I request it now ha ha x

veneerofclass profile image
veneerofclass

Even though finally getting an answer can be helpful after years of pain it’s still going to be difficult coming to terms with the fact that you have an illness like this. It’s good that they have figured it so you can get the treatment you need, which will hopefully decrease the amount of pain you’re in, but I completely get that it’s a scary place to start. Something I often forgot was this, it’s okay to feel all over the place about it. It’s okay for you to be scared or happy or sad or uncertain. It’s okay to be emotional, and it’s okay to talk about how this is all affecting you as much as you need to. And if you have any questions this page is an excellent place for advice or to vent when you’re having a bad day. X

Liberty37 profile image
Liberty37 in reply to veneerofclass

Thank you, it definitely has been an emotional roller coaster, I burst into tears today at work as one small comment just pushed me over the edge 🙈so far the pill has helped a bit but I’m going to start back on my reflexology that I use to have years ago, even if it doesnt help I know I will have an hour of calm.

veneerofclass profile image
veneerofclass in reply to Liberty37

Things will get there in time. It’s a lot to sink in and no-ones expecting you deal with this all straight away. I’m glad that the pill is helping and I hope that you’re doctors are looking into any other ways they can help with your pain management etc.

I don’t know if it might help you but I find meditation really helpful and mindfulness and CBT were good as well. I found they are all useful tools to help me take a step back, think about things which helps calm me down. The first two were suggested by my local pelvic pain team and although I didn’t think much of them they have been surprisingly good on my bad pain days and the cbt is good for when I feel anxious about it. None of it may be for you but it may be a place to start. X

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