All so new and a bit nervous

[Vim84]

Hi

So i started geting endo symptoms back i 2019. Went to the drs who sent me for a scan said i had a cyst that was normal and mentioned endometriosis in a round about way but said nothing needed to be done. I ignored ot for a while but the problem got worse. When i started to have pain almost every time i had sex i mentioned it again. Another scan the referred to a gynaecologist who said straight away thats what it was. They fitted a coil then wanted another scascan in 6 weeks to check on its positioning and also check on the cyst.

The scan showed the cyst had gone but the coil was in the wrong place. Waited from july to sept to see a consultant again. They have suggested keyhole surgry which i am booked in for in 3 weeks but said they may not find anything.

Has anybody had this done and founfound no signs of endometriosis?

[charlatan]

Hi,

Been there - was in pain for years and after I ended up in A & E, I ended up having surgery where they found no endo at all. Few months later, ended up in A & E again and was diagnosed with the worst case of endo the surgeon had ever seen. The endo had spread so far and was so extensive that it presented like a normal, smooth surface. It was pure luck that it was an endo specialist who was on duty the second time I ended up in A & E.

I don’t know if I misunderstood your post but endo can’t be diagnosed by a scan, it doesn’t always show unless it’s really extensive. The only way to diagnose it for sure is through a diagnostic laparoscopy (keyhole abdominal surgery). If you have the chance, take it.

Best of luck to you x

[TogetherWeAreStrong Moderator Endometriosis UK in reply to charlatan]

Hi Ladies, reading your post @Vim84 and charlatan was like reading old diary entries of my life. Trips to A&E in agony, to be told that there is nothing they can do to help, without knowing the cause of the pain. I have had surgery and been fine for a while, but when the pain flared up again, I was told it may not be endometriosis, so I had to start the whole process again. However, I have had surgery and at my follow up appointment/s had a further scan and my consultant has found that it had come back (even worse). But without the surgery and the correct diagnosis my consultant could not have stated that it was the endometriosis from just a scan. It is frustrating,but please follow the process and if you have a consultant that you trust, stick with them. Good luck!