Gynae appt for suspected endometriosis tomorrow, how to avoid getting fobbed off

[CormorantStrikesBack]

This is for Dd 22yo. She has textbook symptoms, lower abdominal pain and bum pain starting just before her period and worse during her period. Painful sex. Hurts when having a poo during her period. Horrendously heavy periods, always have been but worse now since she is on blood thinners. Bu5 all symptoms started before blood thinners.

she had an ultrasound which showed nothing. But sonographer said she couldn’t see everything.

dd had a phone appt where they said it didn’t sound like endometriosis and wanted to discharge her. Dd politely kicked off and refused to be discharged so is now having a f2f appointment tomorrow and has asked me to come. She’s had an appointment summary letter from the phone appointment with the dr saying they don’t think it’s endometriosis.

ive looked at the NICE guidelines and it says for suspected endometriosis even if ultrasound is normal if symptoms persist undertake further investigation and discuss laparoscopy.

can Dd ask for and realistically expect a laparoscopy?

she can not take the pill due to previous blood clots and does not want a coil.

Anyone? Just trying to gauge what the usual approach for suspected endometriosis is currently?

I would go in and push for a laparoscopy OP. I have endometriosis which was diagnosed by laparoscopy, granted it was nearly 10 years ago now. I was ttc so I'd been monitoring my cycles and had all the symptoms your DD had, plus I wasn't ovulating (I'd had some standard hormone tests done by a sympathetic female GP before seeing the gynae consultant).

Ultrasounds can't detect endo - they can see if organs are out of place or stuck to each other because of the adhesions, but they can't pick up the adhesions themselves. She needs a laparoscopy and possibly excision, to properly diagnose and have the adhesions lasered away - if that's what the NICE guidelines say for your area then definitely quote them.

However, the best ongoing treatment for endo is hormonal contraception unfortunately. I saw a private consultant last year for my terrifyingly heavy periods after having my DD; she basically said if I wasn't ttc I shouldn't be having periods at all, because having a monthly bleed just feeds the endo. She fitted a mirena coil and it was brilliant - however I know this isn't right for everyone.

Good luck with your appointment, hope your DD is ok.

Thankyou, sadly she can’t have hormonal contraception even if she wanted to as she’s previously had a pulmonary embolism.

Oh my goodness she's had a lot to deal with bless her!

Hopefully if she can get a laparoscopy at least she'll know what's going on and then you can go from there.

I was her years ago and got fobbed off so many times until reluctantly the GP referrred me for a lap..... which shock horror showed I was covered in endo!
Go into as much detail as possible and how it affects quality of life. Pish as much as you reasonably can. Having a lap really improved my quality of life for years.
Ultrasounds are useless for this, it can only be diagnosed by a lap.

*push not pish 🙈

Thanks everyone. She’s now on the waiting list for a laporoscopy. They are really pushing her to have a mirena fitted at the same time. There’s a slight risk to her of a clot