Has anyone here also experienced this? Had my first lap for excision on Endo on 28th Feb this year and feel like its starting to show its face again as I was also told of the high possibility there would be microscopic lesions still around but invisible to treat at the time. The endo was found on both my left and right uterosacral ligaments and the top of my vagina. But due to the symptoms I was experiencing prior to diagnosis they also thought some could be nerve related but was told this is something that "ill just have to live with and cannot be treated if its to do with nerves".
I am from Australia, does anyone know about any nerve treatment options in other countries for this?
P.s have tried a Tens machine - doesnt do anything and currently taking Lyrica and duloxetine daily but doesnt seem to be doing anything except making me super forgetful!
Please help!!!!
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Endo_girl22
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This sounds like Sciatica. The sciatic nerve is the main nerve running from the spine down each leg. It runs right past the very places endo usually nests on the way and is often getting caught up either directly with endo growing on it or more commonly with adhesions which stick to it.
It can affect both legs but usually one side is the problem.
Surgery to cut away endo and cut back adhesions can provide a lot of pain relief from
sciatic endometriosis .
There isn't really any pain killer that you take orally that will do a great job. you can have nerve blocking injections to kill the nerve pain signals, but they are temporary and not nice. It is far better to have the problem removed if that turns out to be endo or adhesions.
Another thing is ovarian cysts, they can get weighty and be resting on the sciatic nerve when you are sitting or lying at certain angles and cause irritation to the nerve too.
not many regular gynae surgeons are familiar with sciatic endometriosis . It is fairly newly identified - 1955 onwards.
but there are enough cases on this forum to know that although still a rare one, it is one that surgeons should be looking for when they map your endo.
There are plenty more websites mentioning this - i would print some URLs off - selected paragraphs too - and armed with that see your GP or specialist about getting a referral to a specialist surgeon who does this type of surgery, or contact medicare if you are with them and find out what specialist surgeons are operating near to you on this type of condition. You could well have to travel some distance, I wouldn't imagine there are too many such surgeons around.
don't give up just because one doc says there is nothing more they can do. if this is endo - there is a lot more they can do, you just have to do the donkey work and find the right person to do the job. Best of Luck
Wow thank you so much you have really confirmed alot of things for me and provided some really fantastic information!!
Yes my mum did research and find Dr Possover who is based in Switzerland I believe? Currently no specialists trained with this type of excision in Australia and would sadly have to travel, the Endo specialist I chose is the top for my state - there needs to be more training and awareness!
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