Final diagnosis : Hi ladies, So i got my... - Endometriosis UK

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Final diagnosis

Ashlea2
Ashlea2

Hi ladies,

So i got my final diagnosis today, it turns out I have it on the bowel rectum and bladder and it’s sticking my organs together, my doctor suggested I tried the marina coil before we take the operation route, as she said the operation will be very tricky and I could be left with a permanent colostomy bag if there’s complications.

First question is has anyone in a similar situation had the coil and found it helped

Andddd

For anyone who had to have surgery was everything ok afterwards?

Thank you xx

3 Replies
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hi. How you doing?

firstly is the doctor your seeing an endometriosis specialist? I was told it would all have to come out but with a very skilled surgeon I kept it all ( for now 🙉). I had stage 4, full frozen pelvis ( none of my organs could move) and its on my bowel / bladder with a nodule somewhere to. I wasn't given a choice as I had a large cyst that was very troublesome so needed it out and he spent 6 hours Tidying up ' as he put it. For me surgery was brilliant I've never felt so well and we know down the line its likely to flare up again but for now it's great. I'm afraid I couldn't bear the thought of the coil but I'm sure someone with experience will reply. Good luck xx

Hi, I’ve recently diagnosed stage 4 , I had tried preset much everything before my lap as I have a large scar already on my abdomen it was high right to have op on the first place so they wanted me to try it all before hand... I went to get the Mirena coil this was my last option of trying everything.. when they tried to enter it I was screaming n crying as the pain was that bad I felt physically sick the gynae that tried to enter it told me it can’t be that sore that your having to scream she then told me I would need to get out to sleep for it , so couple weeks later I was sent to my local hospital to be put under for Mirena , as soon as I woke up the pain was horrific and every day since I got coil put in I have been in so much pain , I was admitted a few weeks after I got coil inserted in the mean time I had up to ten urine infection’s I felt ill that why they had to admit me in the end , once I was admitted they took my coil out but pain was still there I mean horrific pain , my scan’s showed Sice the Mirena was out in gave me 3 large cytst’s that why I was in so much pain , so after 3 months of waiting I finally got my diagnosis lap and that’s when I found out I had stage 4 endo ... I personally wouldn’t recommend it because what it done to me, but there are ladies out there that the Mirena is great, everyone body react’s diff! I now need to have a major op currently waiting on it , did your surgeon say they need to a have a multi disciplinary meeting with gynae and endo specalist? I’ve had my meeting I have now got an app with my endo specialist/surgeon before the op which is in a couple of weeks ... did they refer you to a endometriosis clinic ?

There ‘s a lot of mixed reviews about the Mirena...

also I’ve been told I could end up with a colostomy bag aswell as I have it on my bowel aswell but it’s the risk I need to take aswell as other risk’s.. hope his has helped a bit .. all the best x

Hi Ashlea2,

The main thing I would say is make sure you are at a BGSE center. bsge.org.uk/endometriosis-c...

On my last surgery in March I was told potentially I might have to have a bag but thankfully I didn't. I was so scared before hand and I wrote down my worries before I consented to the surgery and went through them with the endo nurse at my BGSE centre.

Good luck and best wishes xx

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