I've had loads of tests over the years, can I have Endometriosis without them finding it?

[KittyK]

Hi everyone. Long time no see. I've basically never had a regular period and when I hit around 18 I stopped having them altogether and couldn't have them without medical help. I've got severe PCOS (my specialist said the worst he's ever seen in a woman my age) so in the end needed IVF to have my daughter. Anyway it's 3 years on now and I've still not had a period. I've tried some birth control to regulate it but that still hasn't work and about a week ago I felt period like pains (quite nasty ones) but no blood. It gets worse when I need a pee so I've been treated for a suspected UTI although my wee showed no signs of it.

I also have issues with Ulcerative Colitis but this is very specially across my pelvic area not my side where my UC usually flares .

Obviously over the years in my journey to get to IVF I had various ultrasounds, examinations, cameras in my ovaries etc and no one has ever mentioned Endometriosis but my sister has it and has problems with pelvic pain and irregular periods (although she does actually get periods unlike me). Is it possible to have Endometriosis and no one have noticed at this point even after the tests I've undergone? Do they need to have been testing specifically for that to find it?

[Feverdream]

They can only diagnose endometriosis with a laparoscopy procedure. Otherwise they can make assumptions you have it but won’t know for sure. I started treatment and nothing worked. The doctor said he needed to go in to see. He found lots of endometriosis and scarring. No one had any idea before that

[DianeArnold Partner Nurse Fertility Network UK]

Hi KittyK/ With my experience, you need to have a laparoscopy or hysteroscopy to diagnose properly. To put it crudely, I could open you up and not find any trace, but then 3 months later you can be full of it. It does a good job of hiding, so perhaps see someone who specialises in endometriosis. Good luck! Diane

[kelsbels88]

Hi kitty,

The short answer is yes. Some people don’t show any symptoms which could be seen as a blessing and a curse. (Blessing- no pain etc, curse - it can get worse and you not know).

One of my big symptoms which I didn’t realise at the time but did when I knew more was UTI’s. I went to the drs many many times for them.

Sadly Diane is right and also the wrong dr. A general gynae way be aware of it but may not know all the different ways it can look so may not know what they are seeing whereas a specialist is specifically trained. Laparoscopic surgery is the only hard fast diagnostic route for endo.

Hope you get some answers soon good luck

Kelly xx