Looking for advice after laparoscopy - returning endo and worsening sypmtoms

[Leanne102]

Hi all,

For a bit of background, I had my first laparoscopy at the start of March this year with multiple areas being affected. It ended up taking me about 4 months to fully recover after a pretty lengthy and difficult time.

A few months before my surgery I started getting worsening pain around my kidneys, lower back, hip and shooting up my sides. I've never been under the impression that this is anything other than endo as it follows the same cyclic pain pattern that I'm used to and it's not a regular back pain, I can poke and move my back however and it doesn't twinge. It feels deep underneath and inside my pelvis where I guess the kidneys are. Alongside the pain is the absolutely horrid fatigue that I'm experiencing, which is causing no end of problems with work and my general daily functioning.

This area wasn't checked in my initial ultrasounds and MRI as they were done over 2 years before I got to surgery and with how much the NHS is currently struggling, I have mostly had short over the phone consultations and I suppose I thought this would all be solved by having the lap.

With my recent post op appointments I've been sent for an ultrasound to check my kidneys, but of course that has come back with an all clear - which I suspected following after clear ultrasounds previously.

My frustration now is that my care team at the hospital have deemed this as a non-endo problem and won't be continuing to investigate as there's nothing to be seen on the scan. I've been recommended to either try yet another contraceptive pill in the hopes that it'll be the miracle one to fix what it hasn't been able to before (I currently have the Mirena coil fitted at the recommendation of the consultant who fitted it while I was in surgery), get a referral to a pain management clinic, or to a pelvic clinic with the suggestion of pelvic floor exercises amongst whatever else (why that specifically is a suggestion I have no idea).

I guess I'm looking for anyone who has had returning/worsening symptoms after a lap and whether they were taken seriously or not, and if not have you had any success trying to get a second opinion, or found anything medication wise that has helped with either the pain or fatigue? I think if I had to choose I'd rather deal with the pain and try to fix the fatigue, but I guess when your body is constantly inflamed it's forever trying to heal itself so that fatigue will persist as long as it's there.

Sorry for the long post, I'm fresh from my hospital appointment and switching between anger, frustration and being generally upset that this is all it's come down to again after fighting to be seen in the first place.

Thanks

Leanne

[Marcia71]

it depends on where you’re endo was. How they removed it. And whether they got it all. It’s possible you need a more specialised surgeon but you may need to try things in the meantime.

An ultrasound with someone trained to spot endo would be a good next step. There are many on nhs but privately would be quicker if funds allowed.

Of the things you mention I would definitely try pelvic physio as often when we’ve been in pain for so long our pelvic floor muscles are overtight or unable to relax and a specialised physio can work out exactly what your situation is and give you some relief.

[Leanne102 in reply to Marcia71]

Hi,

Thabk you for the reply! I'm waiting to hear from my gp this morning so I'll definitely discuss these with them. Feel like I'm right back at the beginning with it all

[Lindle]

Did your scans show any endo?

[Leanne102 in reply to Lindle]

My first ultrasound a couple of years ago didn't but I had an MRI shortly after and that did show endo, just not to the extent that it was when they went in for surgery. So I was willfully hoping I'd have a follow up MRI this time, but that hasn't been the case.

[Lindle in reply to Leanne102]

So for endo to show on MRI it is considered severe (as it is deep to show up). This must only be treated in a specialist endo centre so is that where the lap was done?

[megiiva]

Hi, really sorry you're feeling that way. Try to find painkillers that help untill you figure out what is happening. I'm in the same situation as you absolutely same simptoms and had my laproscopic endometriosis operation in April this year. As the symptoms never went away I had endometriosis on my bladder too. Had copper coil fitted as refused the mirena. Had Sibo really bad still treating it lot's of BV,Trush and so many dlin reactions literally I'm on painkillers for few months now. Pushed for MRI which I'm due to have next week and cystoscopy to see as well if there is soe inside the bladder as they found blood in my urine. Push for MRI you can't just stay like that is not a normal life.I will keep you updated but please try to get MRI,ultrasound doesn't shows really only if is not severe xxx