No relief after second surgery

[Peren]

I had ablation surgery from a general gynae last September. This surgery provided no relief and in fact made things worse.

In May this year in went to an endo specialist and had excision surgery. Endo was over my bowl, bladder, ligaments, recto vaginal endo, etc, etc.

I am now 5 months post surgery and still suffer agonising pain which radiates done my leg and means I struggle to stand/walk.

What are my options? Can I undergo further investigation? Could something else be an issue?

I thought things would improve and maybe they did a bit but now I feel I’m back where I was.

[Romana98]

Hi, feeling exactly the same- had 2 laparoscopies, the last one was excision with an endo specialist 5 months ago. Like yours my endo was over my bowel, bladder, ligaments, urether plus had rectovaginal endo. Still in pain however it’s slightly reduced. I’m sick and tired of taking painkillers and living in uncertainty! Went to see my endo specialist last week and he said that my full recovery might take months! How many?he doesn’t know! It’s a struggle xx

[Peren in reply to Romana98]

Sorry to hear you have the same problems as me. So draining isn’t it.

I just want to be fixed x

[lap1]

Hi Peren. I am in the same boat as you. I’ve had intense pain on my right side where right ovary should be: this pain radiates down to my groin and front of leg down to knee. I have it every day with two or three flares a day that knock the breath out of me. Excision surgery for endo didn’t help. I’m waiting for full hysterectomy because I have no more options. Did your pain resolve and/or do you have any idea what might cause such specific pain?

[Peren in reply to lap1]

Hey - sorry to hear your are still in pain.

No my pain didn’t resolve and I now have an endometrioma which requires surgery so that will be my third in less than 3 years.

My pain does sound the same as yours - all I can think is that there is pressure on a nerve or something like that?

I’m being referred to a bowel specialist- first appt Thursday, I wonder if that can shed any light on anything?

Seren

[lap1 in reply to Peren]

Sorry to hear your pain hasn't resolved. I also think its a nerve being blocked. My bet is obdurator nerve entrapment. In my case anterior entrapment because pain is down front of leg. See this article

ncbi.nlm.nih.gov/pmc/articl...

It talks about struggling to walk,stand etc, says it can happen after surgery and suggests an EMG test and nerve blocks.

I actually told my surgeon I thought it was nerve entrapment before the op. He kept saying it was because my ovary was stuck to the pouch of douglas. I saw him very briefly after my op: he said he had separated out the ovary. But it didn't cure the pain at all. i'm seeing him again for a post op consultation mid August and will press this point again: I will ask for an EMG. If you hear anything interesting from the bowels specialist, please let me know. Good luck!

p.s. if you have an endometrioma it probably means your endo is active again. Have you been recommended hormonal treatment? I've been on Visanne for a few months now. It hasn't helped with my chronic pain (because I think a nerve has been trapped) but I'm hoping it stops the spread of endo and it has also helped with endo belly and monthly cramping. Visanne is a fourth generation progesterone which I've had to order from abroad. I could never take synthetic hormones: the side effects used to send me to A&E, but this one seems to work.

[Peren in reply to lap1]

Interesting- yes my ovaries are stuck again (according to ultra sound) too so with that and the endometrioma its all active - I’ve not taken anything as I don’t react well to hormones. I’ll look into the stuff you’ve mentioned though, thanks.

I’ll let you know what specialist says Thursday.