Pathology report came back negative after surgeon "confirmed" and removed what he said was Endo!

[Hermi_t]

Hi everyone

I am completely at a loss...

(For context: I live in France and I think things work a bit differently here)

I have been trying to get a diagnosis for over 3 years now. After fighting my way to a doctor who actually listened, I was diagnosed with Endo by MRI. They decided to do a laparoscopy to confirm and remove whatever they could. The surgeon "confirmed" that I had a fair amount of superficial endometriosis on both utero sacral ligaments and was able to remove it all. I am now 2 and a half weeks post op and have just been sent my pathology results by email, they came back negative for endometriosis and I am so confused and frustrated! I don't understand...What did they remove? Why was the surgeon so confident that it was Endo? I've spent over 3 years being messed around, being given different diagnosis' that doctors kept changing every few weeks. After the surgery I was so relieved to finally know what was happening to me and now I feel like I'm back at square one. I really don't know what to do other than get ANOTHER "second" opinion. I just want the pain to stop and to know what's wrong with me...

Has anyone got any wisdom for me or has been through something similar?

[Endosufferer1]

Hi! Change of hospital and go to a specialised one for endometriosis. Or, they have made a mistake and have given the results of someone else (that happens a lot). But to be honest, that's weird they found artificial endometriosis on the MRI. Did you have any cysts? When did you get first your periods and what are your symptoms?

[Hermi_t in reply to Endosufferer1]

Hi, thank you for your reply. I am already in a specialist Endo clinic which is why its so confusing. My surgeon was so confident that it was Endo and he specializes in it so I am really thinking its more likely to be a lab mix up but that's just insane! I think with the MRI I was just lucky as I have also read that superficial Endo is next to impossible to see on MRIs. I wondered if they just saw that the ligaments were thickened? No cysts. I first got my period when I was 13 (now 22) and first started having symptoms when I was 18 although I always had "uncomfortable" periods when I was younger. I went on the pill when I was 14 to help with acne so I wonder if that helped keep my symptoms at bay for while. My symptoms are stabbing pains in my lower stomach, and lower back with pain radiating all the way down in my right leg and hip pain that radiates into my groin. I also have to pee about 20 times a day but my pain specialist says that that is probably due to the hypersensitivity I have developed in my pelvis. I am now on an anti epilepsy med to manage chronic pain which has helped a bit with this.

[Endosufferer1 in reply to Hermi_t]

You need to follow a specific diet for endo (no lactose, soja, fried food, etc.) and take natural remedies (curcumine, noni juice...). You need to make a formal complaint because I'm sure that your results have been mixed (it happened to me once when I was younger for another thing and nearly ended up at the hospital because of that).

[Avourneen]

Hi there,

That is one of the strangest things I have ever heard. You must be completely freaked out by this. It could have a logical explanation, I was sent the wrong scan results and the operation report for a different person after my op in the UK.

Could it be that they have sent the wrong results for someone else's test?

I would start by getting back to the surgeon who did the op and asking what on earth could this mean, I'd also ask the lab to double check the test results. There is a hospital in Bordeaux which is meant to be one of the best in Europe for treating endo you can find it with a google search. I would also contact them send them a copy of your MRI and the results saying it was not endo and ask them for advice.

They have a top team of doctors and researchers and I would hope that they can help you.

Try these steps and let me know how you get on DM me if you need more info. You need to know eaxtcly what was done and what was removed.....Good luck.

[Hermi_t]

Hi! Thanks for you reply.

I know! I couldn't really believe it! having thought about it rationally now I am thinking that its quite likely to be some sort of mix up... Its just so frustrating that I have to wait 2 weeks before seeing my surgeon to explain it to me! Im sorry you were sent the wrong results, that's awful! How did they let it happen TWICE!?

I contacted him yesterday straight after I received the email and spoke to his secretary (who is possibly one of the most unpleasant people Ive ever met) and she said it clearly says no Endo on the lab results and when I asked how that was possible and what it was that he removed she said I have to wait until my appointment with him on the 30th for him to explain it to me.

I actually only live an hour and a half away from Bordeaux and my gyne often works closely with professor Roman who is a founding member of the clinic in Bordeaux. He looked at my dossier before the op and said that he trusted the specialist surgeon in my local clinic to do the surgery as there was nothing "too complicated". The Bordeaux clinic usually only deals with severe and complicated Endo cases.