Endo pain or not?

[Yellow17]

I had my lap in July 2021 and I was diagnosed with stage three endo. They removed my lesions with ablation and some excisions.

I still suffer regular pelvic pain and lower back pain. When I had my post surgery follow up with the consultant, 4 months after my lap, she told me that my ablation was gold standard surgery and that she does not think my pain can be endo because it was removed.

It feels exactly the same as before surgery though but now she is suggesting it could be muscular.

But there other symptoms of endo not just the lesions! And in the all months since surgery, it is possible to have regrowth or endo cells/lesions that were not visible during the surgery.

I just want to know a prognosis for life going forwards, she was acting like you've had the surgery so now you're off my list!

My surgery was at hospital with BSGE centre as well.

My only saving grace was that I refused to be signed off so she said she'd leave it 6 months and if no better, she'd send me for an MRI.

Why aren't we told more about what living with endometriosis is like? Pre and Post surgery generally... 🤔

[TennisAM]

Hello

So sorry to hear that and that your surgeon was so dismissive. Was your surgeon actually part of the BSGE endometriosis centre?

Abalation means burning, imagine you have 5mm depth of endo, they only burn the top, that doesn't affect the endo underneath. I'm amazed she thinks it's gold standard. Excision is the gold standard assuming the surgeon has looked systematically everywhere in the abdomen etc.

My BSGE endo expert said to me after my recent lap: "i didn't abalate, that's a waste of time"

Is there another surgeon in the BSGE centre? (i swapped between surgeons at my BSGE centre)

If there's another BSGE centre that you can travel to then your GP can refer to as a second opinion (make sure they state this on the form). The BSGE website shows which centres are nearby and who the surgeons are, you can pick a surgeon from that other centre and name them on the form, if you like their reviews etc. Be careful with reviews as some surgeons ask for bad reviews to be removed.

I wouldn't wait for 6 months, she should be sending you for an MRI scan now. You can ask PALS at your local hospital to intervene on your behalf to try to be referred now. Why suffer through it for another 6 months.

Sounds like she's not done her job properly and is trying to pretend you're the issue. If you have to then I'd say you want another surgeon to have a look and excise (use the word negligent if you have to). The other surgeon must be a specialist who can excise.

Take care and hope you can get another lap by a proper expert.