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Endometriosis UK
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Feeling miserable and still in pain even after removal of endo 🙁💔

Today I had my follow up after my surgery which confirmed stage 3 endo. The surgeon removed as much of it as possible and some cysts. Prior to the symptoms becoming more recently severe, I had been taking cerazette (treatment for endo) for about 2 years.

He has discharged me from his care today and advised I should have the Mirena coil fitted or continue with cerazette. I just worry because I’ve taken this pill for 2 years and the endo had developed, that it is only going to return?!

I am really struggling with my bladder lately (ache when full, ache when urinating, sharp pains randomly in the bladder or when urinating) and he said I could have some small amounts of endo in/on my bladder but he didn’t see any when they did surgery. I also have the exact same pain I was in prior to surgery. He just told me I need to continue to manage my pain meds. Is this honestly it? I thought surgery would relieve me from pain but I’m in exactly the same amount of pain as I was in before... 🙁 Feeling so miserable about the future and don’t know how I’ll cope and go on with this constant pain 💔

9 Replies
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Sorry to hear that. When did you have you most recent surgery?

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3/4 weeks ago so originally I thought maybe it could be me still recovering. I’m completely back to normal now, nothing hurts... just the constant ache deep inside my right hip, which I’ve always had. My consultant said surgery doesn’t always relieve pain which has disappointed me a bit 🙁 just hoping over the next few weeks the pain eases a little?! X

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Again, sorry to hear that. I didn't you have a surgery so soon. I thought you had a surgery 2 years ago based on your post. So you had one 2 years ago and you thought the symptoms got too severe so you had a recent one?

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Oh sorry, I’ve read my post again and it was a bit confusing. Only in February 2018 I started really noticing the pain and symptoms of endometriosis. What I meant was that I had been taking cerazette for 2 years previously and then may 2018 had been diagnosed. So the endo has only recently grown or developed, even though I’m taking the pill which is meant to slow it down?? So I’m worried that if I continue to take the same pill that it is only going to come back!

I’m really new to all this so I’m probably making no sense!

I think I need to just face facts that I’m probably never going to feel as healthy and well as I used to xx

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I don't think the pill is making it worse. Your endo will develop whether you take it or not. I also started taking pills when my symptoms started. The symptoms got worse but it would could be even worse if I was not on the pills. I think there is no going back once the symptoms started. I do hope you feel better soon !

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It might take a few months to notice an improvement, you're still recovering internally even if you feel ok x

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Howdy there my friend. I am really sorry to hear about your state. It is really unfortunate! I wish I could do something to help... I went through pretty much the same after my hysterectomy! In my case the pain was worse than before. The doctors told me that it is normal to feel pain. All they did was prescribe pain killers... Like a mountain of painkillers. Things got better though. It did take me a while but it all went away at the end! Please try to be strong! This is the most delicate part of your recuperation! Don't lose hope for better days. They are just a little bit further away than what you thought! Sorry if this wasn't that helpful! I was just heartbroken to hear about you... I wanted to send some love! Wish you all the best.

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Go get a urine culture!!!! I got a Antibotic resistant UTI infection from the catheter.

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Thanks so much girls 💖 xxxx

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