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Endometriosis UK
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Endo on nerves?

Has anyone been diagnosed with endo on your nerves? I have it on my womb and bladder but my specialist is sending me for an mri to check my nerves as I have constant flooringly painful groin pain.

This sound odd but... I keep waking up with numb arms, and this morning a numb leg too. And the other day I used a stapler and it made my leg tingle. If we are looking at nerves is it worth emailing to tell him this info or will I make myself look stupid 😂

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I had a numb leg for months prior to my surgery but they dismissed it (especially as nothing showed up on MRI) as anything to do with Endo even though it was the same side I had all the my Endo problems (left) after surgery my leg has returned to normal so I know it’s Endo related. It’s hard to be listened to especially when we know our own bodies and this disease better than most of the professionals. Endometriosis can definitely affect nerves so don’t let them fob you off

All the best xx

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Thanks Char! It was my specialist that suggested nerves, despite him only having one case before like it, and with differing symptoms. Me and my dad came to the conclusion of this months ago but the last gynae laughed me out the room saying it was so rare, so I’m glad new one brought it up himself

I just want to make sure it’s found, so if it might help him know where to look.. I know mris are naff at picking it up so I’m nervous he’ll never find it, as he’s said when it’s on the nerves theyre not visible without knowing where to look!

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Yeah I think some of mine was missed but I’m glad for some reduction in symptoms after my surgery. Good luck with everything and hope you’ll be on the road to recovery soon xx

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Hi there

Yes it’s rare but doesn’t mean it’s not possible. I have it on nerves in the groin area (clear diagnosis will never be possible though) but it wasn’t detectable on MRI and it can’t be seen on laparoscopy as not the right region. My lap found it elsewhere although my symptoms didn’t improve after the lap. At its worst I was in agony ( I’ll never use this word lightly again) and couldn’t move let alone walk for months. Nerve tests showed motor nerve damage and the only suggested cause is endo ( I had monthly symptoms before it reached its peak) and am now on long term Prostap injections. I wonder if we have the same specialist?!

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How interesting!

What did your symptoms present as? And what was shown on your mri if no endo? Did your mri get seen by a specialist in seeing it on mri, because according to my specialist there’s only 2 people in the hospital that he want to do my mri because they now what to look for when it comes to endo and it’s so easy to miss.

What hospital are you at?

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Also I’m with you on having a lap and waking up with my usual pains through the drugs 😣

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Just to add - my symptoms were a severe tightness in the right groin a few days before a period, loosening after a few days into a menstrual bleed. Until one month when the tightness worsened and the nerve damage occurred. I also had painful periods and a contorted pelvis with lower back pain and a monthly ‘toothache ‘ kind of pain in the R thigh for years. I have adenomyosis too.

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Hi!

I’m under 2 gynaecologists actually, one at James Cook in Middlesbrough which is where I had the most recent MRI and lap. The other is in Mansfield. My consultant specifically asked a specialist radiologist to be present during the MRI and to check the images before I went home. The scan showed nothing. However they found endo on the lap. It’s therefore possible that I have a small amount on the nerves but it can’t be operated on as they can’t operate without knowing exactly where to look. It’s a very risky area as there’s lots of nerves. At least the endo diagnosis means they are able to treat me with Prostap which means I can get some strength back to my leg muscles ( without further nerve damage). Far from ideal but at least I can function now! Are you on any injections yet? They can make it less likely for it to show up on the MRI so hope you’ll have the scan first?

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not yet, he wants me to go on prostap after the mri. I’m at Wakefield so not same guy, it’s good that they’re taking it seriously though, annoying that it’s possible that we will never be rid of it.

What’s your long term plan? Isn’t prostap only meant for a tear or two at the most?

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Yes very annoying and hard to accept but I’ve got my head around it now. Just. Have been on the injections for nearly 2 years with HRT. My consultant plans to do bone scans every 3 years and provided results are normal to continue. He has another lady who has been on them 12 years.

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Eeesh!

If it’s working for you though that’s all good! I hope it continues to and keeps the pain at bay 💕

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Thank you. Good luck with your scan. Please let me know your result. Take care. X

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