Endometriosis pain

[Loulucy]

Hi I have been diagnosed with endometriosis about 5 years ago. Been managing my symptoms though the pill and then thought the progesterone only pill which has been manageable. I recently had to come off the pill about 4 months go. 2 weeks a go I have been in very bad pain, so went to A and E who referred me to see a gynaecologists for a emergency ultrasound scan to find how whsts happening. I was just wondering if anyone else has had an ultrasound and told by gynaecologists there is nothing showing on the scan and don't understand why you are still in pain. She said to go back on progesterone only pill to suppress the endometriosis which I have now done. Pain is a lot more better and a lot more manageable just wondering if anyone has been told the same after having an ultrasound.

Thanks

[DragonG]

Hi! Apparently it's super rare to find things on ultrasound. They can only slightly tell if you have an internal exam. They found nothing on my one but only in the internal exam

[Lindle]

In general gynaecology the sonographers will usually come from a background of radiography, midwifery or nursing and will only be trained in general ultrasound. They will look at the uterus and ovaries mainly to see if they look a normal size and are in the expected position. Ovarian endo in the form of endometriomas (endo cysts)show well but deep endo needs the expertise of a highly trained ultrasound specialist. The usual form of endo (peritoneal) doesn't show at all as the lesions are very shallow. So an ultrasound in general gynaecology isn't looking to diagnose endo but really to rule out other things that might be causing symptoms. They really should acknowledge this.

Do you know how bad your endo was when you were diagnosed 5 years ago and how it was treated? Do you have any paperwork such as the discharge note from back then that might throw some light on it?

Medical treatment notoriously masks symptoms whilst endo progresses and going back on it is likely a sticking plaster solution. At best it might slow it down and the ESHRE guideline comments that this is a likely reason for having severe endo down the line. I would say you need proper investigations by a consultant with a special interest in endo as the NICE guideline requires.