Finally diagnosed with Endo after being misdiagnosed by a specialist!!!

[TennisCourt]

Hi! I haven’t posted in here since January but I just had to share my experience!!

So I had a surgery in January 2024 which I posted about on here. It was with an endometriosis specialist privately and I got told I did not have endometriosis but it’s suggestive of Adenomyosis (scans also show things suggestive of Adeno). They did NOT do biopsies.

I was very confused as all my symptoms really matched up to endometriosis but there is a lot of overlap with Adenomyosis too.

I spent the whole of this year just thinking and researching and I came to the conclusion I wanted another opinion.

I saw 2 gynaes on the NHS in between who were absolutely horrible and said that I was told I don’t have endometriosis, so I don’t have it and if I don’t want to try the coil there’s nothing they can do with me.

I didn’t give up so I found another endometriosis specialist privately and had an appointment. Wow. The different was unreal! I was listened to, validated and I could tell he actually wanted to help me unlike any other doctor.

I decided to have another surgery with him because I just knew, call it intuition or whatever but I just knew I needed another look.

I had this surgery in October and the initial findings were it just didn’t look normal in there, my consultant removed and biopsied all areas he was suspicious of but it wasn’t glaringly obvious what it is. My womb was suggestive of Adenomyosis too, also my tubes were not great condition and thinks I could have early endo growth inside them. My utero-sacral ligaments were all puckered and just nothing looked right.

I had my post op last week and the biopsies confirmed endometriosis on the left and right pelvic side walls, left and right utero-sacral ligaments and pouch of douglas.

I knew it this whole time. I got misdiagnosed by a endometriosis specialist!!!!

The point to of all this is I truly believe you know your own body more than anyone. Keep fighting and don’t let any medical professional gas light you!

Also why aren’t biopsies within the medical guidelines?!?! My consultant wasn’t sure if it was endometriosis as it didn’t look super obvious but I’m so glad he was througher and biopsied to confirm everything xxx

[RedCat24]

Iv had the exact same situation as you. I wish I could have continued with the private specialist but unfortunately he doesn't take NHS patients and I no longer work due to the impact I have on my health. I'm so glad you continued to advocate for yourself, we know our own body's best and im happy you got the result. I'm now waiting to be seen at a BSGE centre x

[Bumfluff87]

This is so encouraging to hear! I've been told I have nothing so I should just be happy with the good news! I might get a second opinion!