Just recently been diagnosed

Hello I'm Emmajane I'm 25

I've just recently had a laparoscopy to explore what has been causing me sever pain and flooding for the past 3 years I was absolutely shocked when my consultant told me everything she had found during my surgery she had found severe endometriosis adhesions had fused my womb in place so my womb couldn't move freely adhesions had also fused my left ovary to the left side of my womb and had to remove a large cyst from my left ovary thankfully she has reassured me that she had managed to remove all of this during my laparoscopy and then fitted me with the mirena coil

I'm now on day 9 since my laparoscopy and I'm feeling ok still not back to normal yet but getting there one day at a time I'm finding it quite hard to come to terms with tbh I've stupidly been thinking that now it's been removed that's it, its all gone but endometriosis can come back and keep coming back can't it????

4 Replies

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  • Hi, sorry to hear your news, but at least you know what you are dealing with now, unfortunately endo isn't curable and the gold standard of treatment is a thorough excision surgery that hopefully your surgeon has completed, endometreosis can come back, or be missed as it can be in odd location or microscopic.

    Lots off ladies have had success with the marina coil, as it stops periods and reduces estrogen, that's what feeds the endo

    Please be aware that general gyne often do not know what to look for outside of the reproductive system. And therefore tend to miss endo in places like the pouch of Douglas. If your pains return make sure you get refferal to a bsge specialist centre. The surgeons at these centres have much more experience at locating and removing endo,

    I wish you every luck, xxx

  • Bless u😌 I feel for u, hopefully they will sort it. I know how it feels, u have Yor good and bad daysss.. Try and be strong, I'm thankful that I'm healthy and alive with a roof over my head.... And my life isn't bad....

  • Hello Emmajane and welcome to the forum! Sorry to hear you've had the endo diagnosis but please try not to worry. You're right that it is a disease that can (and does in many cases) keep coming back, but this in no way means an end to life as you know it. Many women with the condition live full, happy and healthy lives but if you're really struggling with your diagnosis and what it might mean for your future please speak to your consultant and/or GP.

    I would definitely suggest having a good look around the Endometriosis UK website - they have lots of helpful information on the condition including details about surgery, medication and alternative therapies. In addition, if you have any questions about endo in general, want some advice on things like exercise and healthy eating or just want to vent, please visit the forum and let rip! We're all in the same boat here and there's bound to be someone who can empathise with what you're going through and will offer up some advice for you.

    With regards to your recovery time after surgery - everyone is different, but on average I would say it takes most people about 2 weeks to start to feel 'normal' again. My last surgery in October 2015 saw me have 4 weeks off work, but this was mainly because my consultant had to do a lot more in the way of surgery. From what you've said in your post, it sounds like you are in a similar boat so I certainly wouldn't push yourself until you feel absoutely ready to. I found gentle walks, swimming and simply sitting outside (weather permitting of course!) helped no end.

    L xx

  • Hi, when I was diagnosed in October 2015 I felt relieved that they had found the route of my pain but sad that there is no cure. I had 3 weeks off work and returned on short hours my gp felt I needed to go back for my own wellbeing as I was feeling really low about the diagnosis. It wasn't until about 15 weeks later that I hardly had any pain the internal healing took a while and I was back to my bubbly self. I still get pain and it is progressively getting worse (I'm waiting for an appointment with gyne again) it's taken me months to get used to the diagnosis but I feel a lot happier about it than I did Oct/Nov/Dec time. It's awkward when people ask me when I'm starting a family because I can't cope off of contraceptive because of the pain but I find this site very comforting. Make sure you rest and try take your mind off of it don't let endo consume you I did let it at first but keeping busy and thinking I can get through this did help. Good luck, I hope you feel better soon xx

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