Next steps? Lap negative: Sorry for the... - Endometriosis UK

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Next steps? Lap negative

nicjd1
nicjd1
2 Replies

Sorry for the lengthy post but want to give my background as I really need some advice and be interesting to see how it compares to all your experiences with the NHS.

I have had horrendous pain for years (to the point where my body would go into shock and I would go sweaty and grey, slur my words, lose control of bodily functions and be unable to move and if I was lucky pass out) I was worse first day of my period before I started bleeding but would have awful pain throughout period, peaking again halfway through, would get pain all the week before as well as sharp shooting pains that felt like it was right in my ovaries probably when I was ovulating. Would have pain during sex etc, heavy periods.

Eventually after about 7 years I was referred to gynecologist and my experience has been depressing. Said it was likely to be endo and I (after another couple of years) had a lap. Never saw my actual consultant until after the operation for about 30 seconds. Said no endo found and all was fine and that I would probably grow out of (at 31 years old) and that getting pregnant would help and discharged me day of the op.

I was devastated, my gut feeling about my surgeon was off and my mental health deteriorated so much after this I couldn't face seeing anyone again for a while.

Eventually I did and GP was furious, I was re-referred and feel like I have had a real battle due to my lap being negative, won't give me an mri scan as I have had the lap, have never had any other condition discussed with me except endo (which apparently I can't have as they didn't see it) and just had another ultrasound which was 'nearly normal' whatever that means. Said I probably have endo but its small (?) which explains why it wasn't found.

If I pushed I could have another lap but they have just wanted to put me on hormones and I'm now on the Depo injection for 9 months which has helped but I bleed for 3 weeks at a time and have more or less constant pain now it's just mild ish so more uncomfortable than debilitating. I'm scared of having

Is it worth me pursuing this? I'm tempted to go private has I can access a plan through my partner. I just can't go through what happened last time again.

Anyone had a second laparoscopy that gave a different result? Are they right that an MRI is pointless? Is Endo the only thing that could be causing me this misery?

2 Replies
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Afrohair

Hello so sorry that you are going through this you was treated appallingly if I was you I’d go through your partners health insurance you’re bound to have a better result I’ve not had a lap myself but this is something I’m scared of because a lot of people have got a negative result on the NHS from Endo there’s no point paying to go private when your partner have health insurance which you can use sorry again it’s disgusting

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