Sciatic Endometriosis

[Chezzerl]

Hi can anyone else tell me have you been diagnosed with this and if so how were you diagnosed and what were your symptoms please ?

I have been told of the “Possover “ site ? Has anyone received advice or treatment in the Zürich clinic r via their website plz

Any advice would be appreciated

[Sunnydays154]

Hi there, I came across your post and hope you don’t mind me messaging you.

I have just been diagnosed with this, I have been told it’s very rare, I wondered if had any advice?

Thanks

Sarah

[Chezzerl in reply to Sunnydays154]

Hi Sarah

Thanks for your message , any information on how you were diagnosed would be a huge help thank you xx I have recently been diagnosed with Ankylosing spondylitis so difficult to know if I have sciatic endo as well or not

How is your pain and what have they recommended to do for you ..?

Many thanks Cheryl xx

[Sunnydays154 in reply to Chezzerl]

Hi Cheryl,

I had sciatic pain for years, I had numerous MRI on my back which came back clear. I was sent to physio for 6 months. Nothing improved I was getting more and more nerve pain in my foot and noticed I could not lift my foot up as much as the other one. I showed the physio, who referred me to a rheumatologist. I begged them for a MRI on my hip/ pelvis as this is where the pain was. Finally they agreed . It showed muscle wastage on my glutes. I then had a EMG test which showed nerve damage. I then had more MRI ( with contrast) on my pelvis which showed thickening of some nerve roots. I was then sent to a specialist hospital who was able to do a CT guided biopsy, it failed thr first time but they repeated it ( just before my period) and the biopsy showed endometriosis. It has been a long time to be diagnosed and constantly chasing up.

Does yours get worse around your period? Mine did but as I had period pain anyway I didn’t put them together. I didn’teven know what endometriosis was. My sister actually researched and found a case on the internet which seemed to describe my symptoms. It did not seem to be on that radar of the consultants. It seems very very rare so difficult to find anyone who has/had it.

I have foot drop now , because of it, my foot is numb. I am not in as much pain as before ( I used to get a knot in my bum which was agony and nerve pain would radiate down my leg. I get zaps of nerve pains in my foot now.

I have been told I will need a difficult operation to remove it, pain and mobility will get worse after the op, it will be a hard recovery, lots of intense PT and will take years to fully recover. So it sounds very very scary! I am trying to find anyone who has had similar operation to see how it went.

Sorry for the long reply. But I hope it helps !

Sarah xx

[Chezzerl in reply to Sunnydays154]

Hey Sarah , so sorry I didn’t get round to replying before now , this year just been crazy for us all , hope your doing ok xx

Have you made any decision on the operation yet ? Very hard decision to make for sure , and not knowing how long the recovery will be and the long term gain or side effects if only we had a crystal ball 😐

I had a bad flare up just as lockdown began , mostly triggered by the stress of having to close my pub down .

But generally have been in less pain until flare I had 2 weeks ago and still find it hard to believe it is not endo related , so frustrating

Please take care and stay safe xxxxx