has anyone had endosure test

[EndoJaz]

has anyone had this? It’s a private test for £450 that can tell if you have Endo or not. It is apparently 99% accurate?

[Char411]

Hi Jaz,

Given the minuscule after care we are given after an official diagnosis, I personally wouldn’t bother spending that much money. We aren’t offered much after diagnosis to help manage endometriosis, so if you’re considering it in the hope of medical help I personally don’t think it’s worth it. If you want a diagnosis for your own peace of mind then go for it

X

[EndoJaz in reply to Char411]

I already have a diagnosis but I know someone said to me who works at drs that more and more people are getting tested by this in the Uk now so just wondered if anyone had x

[Purpleindigo]

Hey,

In the UK this isn't a recognised test and since we do not know the cause of the disease, nor does everyone present the same...I'm not sure what they're testing for! Unfortunately, the only clinically recognised diagnosis comes from laparoscopy

[ClaudiaGrace]

Sounds interesting! I don’t know anything about it but I wouldn’t say it not being recognised by the uk means it isn’t valid, other countries were using deinogest for like 10 years before us, I believe we have a lot of red tape. If it’s not recognised though I doubt it would allow someone to access as Char describes the minuscule treatment offer anyway so may not be of much value currently to people. Will keep an eye on it though! I heard from a consultant that the next one that was coming was a saliva swab!

[Nina-Blue]

Hello, I have had the EndoSure test! I wasn’t so well at the time so didn’t absorb much of what they were say saying properly but the team were really wonderful and explained so much behind it, if I had been better I would’ve absorbed more but I know they mentioned it is currently going through the process of being approved by NHS and medical bodies. There were at least 3 clinicians present, and it was hard to stay so still for so long but it was worthwhile to get as much information as possible. I had already been diagnosed (two surgeries so far) so it was to monitor re-growth but as I am private/insurance the consultant recommended it. Although it wasn’t covered under the insurance I just thought it was worth a go. It turned out it was pretty accurate as I had it before an MRI which was read by Endo specialist at a BSGE centre and they found my Andenomyosis had progressed (which it picks up also). It works by reading electrical signals so little pads (similar to ECG) are popped on your tummy. If anyone is stuggling to get anywhere in the NHS I think gathering information cannot do any harm. I think you can take any scans you have (this one, MRI, Ultrasound) from specialists to NHS consultants they usually work in both private and NHS. Ideally NICE guidelines suggest we should be being referred to BSGE endo specialist centres for stages higher than 1/2 but it doesn’t always happen. I’m sure though you can pay privately to attend these scans and then go back through the NHS to see the consultant again. If anyone is reading this and curious you can search BSGE endo specialist centres near you on their website. Hope any of that is helpful!