No change following endometrial ablation

[Shannon1608]

Wondering if anyone else has had the same and can offer some advice

After years of going to to the doctors with extreme period pain and heavy bleeding they considered the possibility of endometriosis. They recommended having the Mirena coil to see if it would alleviate anything, fast forward two years and I was in the same position. I then had multiple ultrasounds but they couldn’t conclude anything so I fought and fought for a laparoscopy which I finally had in January 2024 and was diagnosed with serve endometriosis on my left side. During surgery they completed a endometrial ablation to remove the tissue they found.

Following surgery I was still in a lot of pain and having irregular periods. I gave it time in hope that it was just by body recovering but now a year later I am still in extreme pain both at my luteal phase and period, having irregular periods that can last between 7 days and 2 weeks and suffering with fatigue bloating and nausea.

I feel so defeated as hoped the surgery was going to help but I’m in the same position and worried.

Has anyone experienced anything similar? Is it worth going to the doctors again? Could the tissue have returned within a year? Could there be something else going on?

Thank you in advance and sorry for the long read

[AllthatGlitters]

Hello is it the novasure endometrial ablation you had? I had this twice.

It had taken away a lot of my severe pain. It’s also stopped me bleeding for weeks on end. I had a very bad period when on holiday abroad. This was out the blue and unusual since I had the novasure. I bled through my pad and bikini and towel, onto my sunbed. Dripping down my legs. It was horrific.

I think the ablation works for some people and doesn’t for others. I have been told that the tissue can grow back. I’m due another ablation next month. I believe it can be done a few times but the effectiveness decreases after each one (according to my gynaecologist).

I would definitely go back to the GP and ask for a transvaginal scan, then possibly see gynaecology again x

[Joonaspryte in reply to AllthatGlitters]

Omg you poor thing, that’s awful.

I’ve had a few embarrassing times, but with my bladder emptying itself, the worst was at a school sports day, I also couldn’t get to a bathroom in time and actually had to squat in a car park, in front of my in laws and other people, luckily my husband shielded me with my coat.

Us women go through so much don’t we ?😞😞

[AllthatGlitters in reply to Joonaspryte]

Hello, oh yeah don’t we just, it’s not fun being female is it. Are you keeping well? X

[Joonaspryte]

well, as good as can be expected with this horrible condition and the horrible pain that comes with it.

I seem to be having many problems, very high blood pressure and got diagnosed with type 2 diabetes two weeks ago.

If you look at my last post, I’ve had my mri results now.

How are you?

What’s the latest?

Hope things aren’t too bad xx

[Bopsy]

Hi Shannon, I had ablation 4 years ago and ended up worse after the surgery. Just last year I was out forward for another surgery under a different consultant. They did a bi-lateral peritonectomy (removed the peritoneum) as that's where the endo was and I've had a major improvement. Not 💯 but big change. Also prior to surgery I went for pelvic floor physio for months and this also dialled down the pain. The physio said the muscles in my pelvic area were hypertonic, from tensing and reacting to pain for an extended time. The surgery obviously depends on each individual, but I've read that ablation doesn't remove the endo fully. I would highly recommend physio if you haven't tried it already. Hope you are keeping well.

[Rasmol]

Hi, Im really sorry to hear you are still unwell after your surgery. unfortunately, multiple studies have shown that the most effective technique to remove endo is excision rather than ablation. It is a shame that doctors still perform ablation when it is well known to have low success rates long term. my advise is to find a specialist with the right skills to perform excision.

I have also sufered years of unbearable pain (daily pain) due to my endo and excision endo saved my life. I also took the minipill while I was waiting on surgery and that worked well for me. I hope this helps and wish you the best of luck in your journey.