Currently writing this from a hospital bed ( missing an endometresiosis support group I said I'd go to today!) just to see if anyone else has had anything simular. 3 days ago started to get reduced limb sensation ( both limbs), numbness, tingling and some shooting pain. When walking legs feel heavy and feel like will fall over. I've had right sciatic before accounted to maybe a disc issue but never both sides.
111 has led me to orthopedic admission. One mri scan, bloods later. Ruled out a disc lesion ( mild dehydrated disc but not severe enough to cause signs) and thankfully not cauda equina. Thus since I have severe endometresiosis ( already have altered sensation urinary and fecal since last year's surgery) I am waiting on gynae to see me .
Long story short I started zoladex about 6 weeks ago. I managed to speak to the private endometresiosis specialist just now. He says he has never came across endo patients with bilateral limb deficits?!!! Hence why I am here anyone else had this ... I feel like I've seen messages from people on here re sciatic, back etc?He says zoladex has extremely rare cases of disc compression but only in men using it for prostate cancer plus my mri doesn't show this. He has said see a neurologist!
Anyone's stories or ideas welcome. Hope you're all having a lovely pain free day.
❤ Sabrina
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I have this 😢 I just posted about it. I don’t have any advice I’m sorry. I’m really scared. I’m losing more and more function. I have to use crutches all the time.
I'm so sorry my love. Will look at your post too. Yes it's terrifying isn't it not knowing if it's permanent or if it will be worse. I will keep you updated on what happens to me too incase anything may be relevant to you hun x
Just read your post. You poor thing. So the endo specialist I asked him about nerve surgery he says doesn't touch them. Says one surgeon in London who does nerve surgery I will Google now as my primary concern was general neurology for now and he mentioned alot of other stuff ( didn't have a pen as in hospital). I will see if I can try and find a name for you or if not email his secretary to ask. Also have you seen a neurologist? The endo specialist I see says worth ruling out other nuero issues before we say endo x
Sabrina...so sorry you are at hospital at the moment.But as you are i wanted to give you some sdvice to let let anyone feel this may nit be because of endo.I have horrific sciatica only just befire and during my period..legs start to feel like they weigh a ton and i cannot walk properly and even have to roll out of bed as i cannot get up normally.This sciatica dissapears after my cycle.I get twinges of it sometimes but never as bad as when on a period.A gynecologist when i mentioned yhis told me that endo in no way is assosiatrs with sciatica.This is not true.Not all gynes seem to know about sciatica and endo and are wrongly dismissing this.I believe it is very hard to see on scans ...Have a look at sciatic endemetreosis on the internet while you are in hospital amd mention all this to whomever you talk to.There have been many reports conducted on this.You can mention this becuase they can easily dismiss it.They say it is very rare.But i honestly doubt this.The lack of knowledge is shocking.So do not expect a gyne to know this.Sending all my best wishes to you Sabrina
Thank you for your kind words and message. I have found research papers re sciatic endo and know from this group of other women who are in a similar circumstance. My signs were initially right sided sciatic and always during menstruation as of last year. But since the mri then had a possible disc dehydration the gynae team have presumed that.But now it is bilateral, not during menses ( I'm in induced menopause) and I've had a specific spinal mri, orthopedics have said it cannot be disc related! Thus I have spoken to the endometresiosis specialist for this region ( not general gynae) who is still saying sciatic both sides with nerve deficits he has never seen (career has spanned decades he gets the most complex endo cases) ? 🤔 however since he has said this now the hospital want nuero involved. Thus I am stuck here for a few more days! If they conclude not a brain issue or other neuropathy it can only be endo logically.
I suspect part of the rarity as you said comes down to proof scientifically. It was easy to dismiss me with one sided sciatic as non endo and thus as per other women I assume just sent to physio or told non gynae. Unless there's a big nodule on the sciatic nerve it won't show on an mri ( as per the research paper cases I have found- larger visible nodule resected thus curative for one woman).
I still need surgery for a rectovaginal nodule, ureter involvement and considering a hysterectomy due to the adenomyosis. The endo specialist as part of the surgical team doing this has specifically said he doesn't touch nerves thus I don't really see an outcome via the nhs. I just wait and see what nhs nuero say for now. If they say no true neurological issue then I speak to the endo specialist again!
Oh its a minefield of mis imformation.I think the medical profession have to realise that everyone is different.Endo is obviously not the same for everyone.Endo specialist have taken sciatica away from ladies nerves before so i suspect this may be new to this doctor. Just because this doctor has never seen it or done this procedure does not mean it is not happening to you.It just means it is the first case he has ever experienced.It does not rule it out atall.If he says he does not deal with nerves then he has never removed endo from there.So do hope he keeps an open mind. have heard of many people having endo taken away from there sciatic nerves.Knowing this has been done lets you know it is very possible.And if many women like myself are just told to go to physio it is being ignored in many cases.Although as you say very hard to see on scans.I would just mention this to everyone you see even the neurologist as it is not forfront on anyones mind.My gyne looked at me as if i were stupid to believe my sciatica was caused by endo.And was absolutely certain endo and sciatica are absolutley in no certain terms, not related.It took me aback quite frankly.I was told to go to physio.Ridiculous to say it is not attributed to my endo or periods when it only happens around my cycle.I dont think it is a stretch to believe it can reach to both sides either.Really hope you get to the bottom of this and get the treatment you deserve.It cant hurt to see a neurologist anyway.I truly wish doctors would become more aware of this.The papers and evidence are there for sciatic endo.Instead of dismissing this and not believing it they should listen and research.Or worse still believing it is so rare that it cannot be the case.Sending all good thoughts your way while in hospital.It is not a nice place to be but neither is the horrific pain you must be in.All the best xxx
Thanks. Yes a minefield indeed. This is the endometresiosis specialist for a large region of the UK not just general gynae. He just said never seen in both sides but I agree doesn't mean it is impossible, he did give the name of a endo specific nerve surgeon ( private practice in another area of the uk) Which raises my concern that for endo as per guideline severe cases need specialist endo surgeons, colorectal and urogenital surgeon in theatre operating at once but no guidelines re nerves. I am down on an nhs list for specialist surgery with him but he has said won't do anything to nerves. Do you know where these woman have had sciatic endo removed by? Is this private as certainly in this region it is not an nhs service? x
I just wondered if you have had a mri with contrast...or without.Really a mri with contrast should be done.Also i have heard that Mr Shaheen Khazali who works at Ashford and st peters hospital nhs but also works at a private hospital called The listers hospital..Although some have been treated at St listers on the NHS..Peter Barton Smith from the endometreosis clinic also recognises sciatic endo.Although this is purely private.
Yes it is. Not going to lie I've had to advocate for myself to get that. As soon as told not disc issue was told initially will be on outpatient gynae/ endo centre. Told them I'm still on that currently for 7 months already with no correspondence so far ( I've ended up paying private to see the endo specialist who I emailed when I was hospitalised ) and my concern of progression on accounts I can barely walk. So the waiting game consisted of gynae seeing me to say not their issue thus get neuro.
Let's see what they say. Thanks for your help and kindness xx
I am not suprised advocating for yourself has led you where you are.But please dont give up now..dig your heels in your in agony.Really feel for you.I have been ignored and do not want anyone else to go through that.You keep going Sabrina..dont let them just dismiss you and discharge you or put you on another waiting list.You can barely walk..you need and deserve treatment.Keep going Sabrina.You should not have to contact private doctors.Good luck and all the best, truly xxx
This was orthopedics on Fridays response. At that point I hadn't seen or heard from gynae. So I'd emailed the private specialist knowing general gynae wouldn't have an answer ( on accounts he is the most senier one here and not working!). I'd said yes ortho have ruled out a disc issue and I am happy for that but if I go home, can barely walk am I just meant to wait and see if I lose full sensation? Am I stable to be sent home. So they reffered to gynae. By then the specialist had rung me yesterday morning with what I've already put above. I told that to general gynae here yesterday who also said go on outpatient nuero since not a gynae issue. So re raised again no diagnosis and their senier has said see neuro now😬 it's a long story. But will wait because discharging people with no diagnosis or put on 6 months plus outpatients list even the matron here has agreed is unacceptable thus I have ended up waiting for another team! X
Yes cant fault the actual ward I am on nurses been brilliant. And generally the doctors I have seen have been good. Just the familiar cycle... its endo ... its complex... go home to your endo wait list with pain management in the mean time. But the ones I've spoke to are aware it's been since Thursday and limbs are not improving etc so without guarantee won't get worse etc they also now agree need further investigation which feels like at least I am being heard and may get answers x
Yes a dreadful cycle..needs sorting now your in such a situation.So so glad tbey agree and you are being heard.Just terrible isnt it that it has to get to that point before you are.Pray you get answers and help x
Sorry very hard to summarise. Jist is tried by 2 seperate teams to discharge me and place on an outpatient list ( ortho wanted gynae outpatient, gyane wanted nuero outpatient) even though on one for 7 months already. Bypassed it by speaking to most senier endo specialist for region privately who said see neuro urgently. Left in medical limbo until nuero see me x
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