Sabrinacolada in reply to TealBananaPeel2 months ago

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

Sabrinacolada in reply to TealBananaPeel2 months ago

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

Sabrinacolada in reply to TealBananaPeel2 months ago

It's OK. I am so sorry my love. I hope he can help you 🙏 xx

Sabrinacolada in reply to Rachel202 months ago

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!

❤ Sabrina x

Sabrinacolada in reply to Rachel202 months ago

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

Sabrinacolada in reply to Rachel202 months ago

Ah thanks i've heard of these in a private capacity only x

Sabrinacolada in reply to Rachel202 months ago

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

Sabrinacolada in reply to Rachel202 months ago

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

Rachel20 in reply to Sabrinacolada2 months ago

I understand fully now..thank goodness you seem.to have some people there who care...so right to see neuro straight away.x

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Sabrinacolada in reply to Rachel202 months ago

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

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Rachel20 in reply to Sabrinacolada2 months ago

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

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