Sciatic Endometriosis??

[luthien]

Just been reading up on sciatic endometriosis, I didn't really think it was a thing.

website drseckin.com/endometriosis-sciatic-region

(remove the space after the to put it into google) It has loads of info!

I have endo, had two laps to excise it - first diagnostic and excision, second was exision of the bit on the bowel with a colorectal surgeon. Currently having physio for my coccyx pain, and doing regular exercise.

Physio is great at helping coccyx pain and my polefitness plus yoga is helping my core but I still have tight hips and sometimes in certain positions I still get a shooting pain down my leg starting from my butt cheek. I've lived with it for about 10 years and just thought it's what my mother had....the sciatica but she never went to see a specialist - for either the possible endo or sciatica like pain, I think she does have endo.

Physio is lovely and can't see anything wrong with that area when chatting, obviously they can't do scans etc, so suggested I go back to my specialist for the sciatic stuff before any physio is done there incase it's made worse - which makes sense as I went initially under GP suggestion for physio on coccyx - as I have pain when sitting - post lap.

A specialist endo wouldn't be able to see sciatic endo as it can be further down and round the back.

Anyone else have it? Heard of it? Be treated for it?

I'm happy to talk to my endo specialist but would another more spine specialist know more? Just thinking outside the box. My endo specialist is top of the are and private so I'm happy with his expertise.

[Doggiedogmom1973]

Hello, yes I'm pretty sure i had this, endo had grown around my sciatic nerve, I'm pretty sure it runs through your pelvis, it's where the endo it was located in my pelvis, that caused my legs to feel like they were on fire, it was nerve pain. Its definitely reachable for a surgeon, that pic on dr seckins website makes it look like the nerve doesn't go via the pelvis....but i could be totally wrong on that location info i just gave you....but i sure did get the shooting pains and sore legs and legs on fire feelings right down either leg.

[luthien in reply to Doggiedogmom1973]

Thanks, I shall make a note of my symptoms.

My specialist was really good for both my laps, so he would have spotted it but I've read that it can be further down the pelvis so not always reachable via lap as endo can be anywhere on the sciatic nerve. I thought my back symptoms were due to pevic endo, as I hadn't presented with any of the sciatic endo symptoms until after laps. Perhaps I just hadn't noticed before as everything was horrible.

I will give it a bit more physio then ask my specialist, perhaps he can chat with a nerve specialist, as he did for my last lap - he talked to a colorectal specialist. I have called my specialists secretary and had an email back to say he had checked the visible section on the sciatic nerve and no endo was seen at the present time.

[Doggiedogmom1973 in reply to luthien]

Thats interesting the endo can be anywere on the sciatic nerve, will keep a mental note to be aware for any of my symptoms.

so when I got endo removed off my bowel, do you think a colorectal specialist would've been there during the operation,...or does it mean you surgeon is not skilled enough at removing endo off the bowel. Don't get me wrong, it could mean your surgeon is so good, that he knows its best to leave it to a colorectal specialits to remove the endo. I don't know if my endo was ever on the inside of my bowel, but perhaps thats when colorectal specialits step in. This whole bowel thing is ok, but is defo something i need to catchup with my surgeon about, next month.

[luthien in reply to Doggiedogmom1973]

Bowel - gynae specialist only knows the reproductive structures - blood vessels, nerves etc. The colorectal specialist knows all the bowel structures so is best suited to assist any surgery involving anything on the bowel. Just the same as if endo were on the liver, lungs, they would all require the relevant specialist surgeon to assist. It isn't essential but it minimises the risk of complications as other organs aren't an endo specialist area which makes sense. It's standard and any endo specialist would still remove the endo off other organs; they are the lead surgeon, but they may require the guidance of another specialist if they are operating on another organ other than reproductive or bladder so that they do not damage that organ, this is especially the case for the bowel. I would be extremely concerned if a endo specialist didn't have a bowel surgeon present for laps on the bowel; how would they know they are operating correctly especially in the cases where endo has perforated the bowel.

I had a consultation with my endo specialist whom then asked if I could have one with the colorectal specialist. Obviously the colorectal specialist knows about endo and the bowel but he wouldn't be the specialist to remove the endo as it's origins are reproductive. Together they had a meeting and decided they would both like to be in the operation together should there be a need / requirement / complications / more invasive op on the bowel is required.

In summary it means they can sort your bowel endo out there and then no matter how horrible the endo or invasive the lap is. Otherwise your endo specialist will just do the lap, remove what they can and are confident doesn't interfere with the bowel and then ask you to have another lap with both present later.

Some hospitals wont tell you whom is attending your operation; I went private so I knew and had consultations.