After laproscopy surgery

[Oliviahx]

Hello all.

I have suffered for over 10 years, not being taken seriously, being made to feel the pain was in my head. Finally they did a laproscopy and found endometriosis which they burnt off. The surgery was in February and already pain is back. Has anyone else experienced this ? They have said only solution is trying the contraceptive which I am skeptical about from past experiences. Just feel I am at a wall to be honest and is it normal for the pain go come back a few months since the operation?

Thank you

Olivia x

[Moon_maiden]

Hi

It varies so much and it can depend on if they took it all or missed some. They don’t know enough about it yet.

Was it an Endo specialist or general Gynae who did op? It’s worth getting your notes, especially if they didn’t say much about the extent of the Endo. Do you have a follow up?

[Oliviahx in reply to Moon_maiden]

Hey, it was the gynae team at a nhs hospital. I had a follow up where they offered me the contraceptive, tried that and the pain has got worse, waiting for another follow up..I am just abit like ok what are they going to say this time when I do get my next appointment.

[Moon_maiden in reply to Oliviahx]

You should get a referral to a specialist Endo consultant. They should’ve referred you straight away.

[Endosufferer1]

Burned off?!? You mean ablation instead of excision???!!!!!? It's gonna come back in few months! Excision is the golden standard! Where was your endo?

[Oliviahx in reply to Endosufferer1]

It was on my ovary, uturious. I am convinced its come back the pain is unbearable.

[Endosufferer1 in reply to Oliviahx]

You know, each time before a surgery, you need to make sure it's the specialist for endometriosis who is going to operate on you on that specific day!

[Pacotj]

Hey, I too had my lap in feb after10 years of dismissal and I too unfortunately had ablation. I am in agonising chronic pain now including nerve pain which I never had before. I haven’t had a pain free day in a month and I the pain is so so much worse than before surgery. I read a surgery recently that said 80% of patients who received ablation had reoccurring pain within 3 months and that there’s a much higher chance of tissues damage. I’ve also declined all hormonal treatments, it doesn’t stop the growth of endo and I don’t tolerate it well.

[Pacotj in reply to Pacotj]

read a study* that should say

[Oliviahx in reply to Pacotj]

I am at logger heads do not know what to do.the pain is unbearable, I am always tired I really am banging my head it's doing my head in

[ailis95]

Hello. Sorry you’re still suffering.

I had the same situation, my first lap in Feb 2020 was under general gynae and they only ablated a small amount of superficial endo and I found the surgery offered no relief to my pain or related issues.

Fast forward to today and I’m on the waiting list for specialist excision surgery at a BSGE centre after an MRI showed deep infiltrating endo.

Are there any BSGE centres near you? It would be worth contacting your GP and starting the referral process xx

[Pacotj in reply to ailis95]

Hey can I ask how did you manage to get a referral for MRI after your surgery? I feel like both gyn and my GP have washed their hands with me because it was superficial but my tubes are completely blocked which doesn’t run in line with superficial endo and clearly something is going on considering how much pain I’m in xx

[ailis95 in reply to Pacotj]

Hey!

I begged my GP for a referral to the BSGE centre closest to me. Then the centre referred me for an MRI. I explained that the surgery with general gynae had not given me any relief of pain or symtoms and that I felt it needed specialist intervention and said that after researching (thanks to lots of people here) in hindsight I wouldn’t have even had the surgery under general gynae had I known what I know now. The hospital that performed my surgery washed their hands of me too. Even after I explained none of my symptoms had changed post surgery they discharged me from their care and back to my GP.

Considering your tubes are completely blocked too I can’t see how they can deny you any further investigation or help! I hate how badly we are treated with this disease.

I’d say even if it takes seeing a different doctor every week keep pushing, it shouldn’t be that way but unfortunately it seems we have to fight for even a basic level of care.

Wishing you luck xx

[Pacotj in reply to ailis95]

Thank you so much for replying, can I ask one more thing about when your referral to a BSGE centre was done? In Scotland anyway now (the rules have changed in recent years) they will only see you if you have diagnosed stage 4 so I’m so skeptical they would even entertain it. It’s crazy when you’re diagnosed with other conditions you get so much help and advice yet with this it’s just abysmal. Xxx

[ailis95 in reply to Pacotj]

To be honest I think I was lucky in that the GP didn’t really understand and I think they were fed up of me constantly being there asking for help so wrote the referral without really looking into it.

I’m in England so those rules don’t apply, I find it ridiculous that those rules have even been allowed in Scotland.

All I can suggest is speaking to the GP and making clear just how bad your pain and symptoms are and that ablation surgery is not the gold standard of treatment for endo.

I’m really sorry that you’re having to try navigate this! Xx

[Pacotj in reply to ailis95]

I think that’s why so many women are seeking treatment abroad here, complete substandard treatment causing more damage than good. Thank you for responding xx