Dichloroacetate for Endo

[allym92]

There is currently a clinical trial going on to see if Dichloroacetate could be used to treat Endo, has anyone participated in the trials? Have you found it helpful?

endometriosis-uk.org/endome...

[Moon_maiden]

I’ve been following that for the last couple of years and tried to get it off licence or join the trial. It’s only Edinburgh and a part of London. The professor running it doesn’t do private consultation or I’d have tried that way 🤣

I’d try it even though I’ve been told no Endo left, I suspect it’s still in the bowel.

[allym92 in reply to Moon_maiden]

Yeah I tried emailing the professor to see if there is any possible way to try it / be a part of the trials and she advised me against trying to since the trials are still ongoing. I would defo try it as well. And endo is sneaky she can always come back!

[Moon_maiden in reply to allym92]

I think they could open the trial and we’d pay, we get that desperate 🤣

It also made me think more about Endo being a type of cancer, looks like when you compare photos, acts like it the way it invaded organs and now a cancer drug is working well. Although in a webinar they did specifically say it’s not cancer 🤔 If it was recognised properly we’d get far more empathy, but can you imagine the thousands of women demanding answers 😬🤣 we’d break the NHS completely so it’ll never happen.

If you’ve not seen the webinar there should be a link on the Endo uk webinar page on YouTube. I think there or the Edinburgh Endo page.

[allym92 in reply to Moon_maiden]

Haha 100% we would pay to be in the trial!!

Yeah as far as I know it grows similarly and also my physio has said we don't have any endo specialist surgeons here but we do have surgeons that are oncologists that are considered the best because the surgery is similar. Though I always caveat that by saying endo usually isn't terminal whereas cancer quite often is, cause sometimes when I explain those similarities to people they think I'm dying then!!!

I hope we will keep getting better care and answers as time goes on... Thats all we can do really! :/

Which webinar is this for? on the clinical trial?

[Moon_maiden in reply to allym92]

Be first in line 😂

Oh dear, although when Endo breaches the bowel or other organs it does similar damage and can be life threatening if surgery doesn’t take place. That’s good they get oncologist to do the surgery. I also think general surgeons should take it on, they could do all the organs more easily and also have endocrinologist involvement for hormone treatment.

I hope so as well 🙂🤞

Yes, from a couple of years ago or so, it was through Endo UK, very interesting. If you can’t find it let me know.

[allym92 in reply to Moon_maiden]

Such a wonderul disease we have... :')

I can see an article from them but not a webinar! Do you have a link?

[Moon_maiden in reply to allym92]

I’ll try and find it, if not tonight, tomorrow. Just need to look up the name of their Endo department as well.

[Moon_maiden in reply to allym92]

ed.ac.uk/centre-reproductiv...

Scroll to the bottom of the page

[allym92 in reply to Moon_maiden]

Thanks so much!!

[allym92]

Great thank you!!