Endo found on left USL but experience mos... - Endometriosis UK

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Endo found on left USL but experience most pain on my right hand side?

mylady77
mylady77

Hello,

Had my lap a few weeks ago and the (BSGE listed) surgeon found endo on my left utero sacral ligament, extending onto the ureter.

This was the only site he where he found endo but I do look to have adenomyosis as well.

I was so sure that if endo was discovered it would be found on my right hand side. I do suffer pain on the left but my worst pains are definitely on the right - including lower back, buttock and leg pains. I've heard of referred pain and am wondering whether this is a possible explanation.

Anyone else had a similar experience of questioning the diagnosis due to location of pain? Slightly concerned that something may have been missed, despite my surgeon being highly regarded in this field.

Thanks in advance for any help :)

26 Replies
oldestnewest

Hi- where did you get the idea of adenomyosis? did the surgeon tell you this? what did he do about the endo he found-has he offered you treatment like a Mirena? All our "ladies bits" are so close to other organs like bowel and appendix,bladder etc and sometimes it just might not be gynae but a general surgeon who needs to find out your pain. Try not to let your mind wonder from things you might read on the internet, some of the info is way O.T.T. Good |Luck

Hello,

Adeno was first mentioned following an MRI which showed a thickening of the womb. Following the lap the surgeon confirmed this - or was 99.9% certain it was the case - apparently the appearance was 'mottled'.

We discussed excision of the endo and a hysterectomy (leaving the ovaries which are healthy) to deal with the adeno. Back to see him 20th September.

I refused the Mirena - every time I mess with my hormones my ME gets worse and I end up depressed.

Thanks for your response x

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mylady77
mylady77
in reply to Hidden

The lap was purely diagnostic. The surgeon had previously warned me this may be the case depending on the severity/location of any endo found.

Thank you for explaining why the pain may 'seem' to be at the wrong side. It's good to be able to maintain my faith in the surgeon, he certainly gets great reviews!

I am definitely going ahead with the hysterectomy - I'm 39 this year and my family is complete. My only area of uncertainty is whether or not to keep my ovaries. This is something I'll discuss with the surgeon in more detail during my next appointment.

Many thanks!

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mylady77
mylady77
in reply to Hidden

Yes, that's the plan.

JeanOsborne
JeanOsborne
in reply to Hidden

Hi Lindle, are the uterosacral ligaments removed with a hysterectomy or left in?

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JeanOsborne
JeanOsborne
in reply to Hidden

Thank you Lindle.

Avsw
Avsw
in reply to Hidden

Hi, out of interest, why do you say it almost always occurs on the left usl? Just had DIE removed from my right USL but nothing on the left. Is there a physiological reason?

Thanks for the info you posted on this topic previously, was really helpful when I first found out!

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Avsw
Avsw
in reply to Hidden

It's so frustrating that everything is so unknown isn't it. Thanks for the info though x

Well I wish you good health with future medical intervention

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JeanOsborne
JeanOsborne
in reply to Hidden

Very well said Lindle, and we would be totally lost without yours and everyone else's help on here. I for one really appreciate all the help and advice you have given.

I have pain on my right side but the endo was only found on the left side too. I gather is probably due to nerve ending close to the lesion. I am having my excision op next Monday. Will post afterwards to keep people updated. The consultant strongly recommended the coil to prevent recurrence. There are some evidence suggesting it maybe effective. So, I will have it put in and see.

All the best

Thanks for your reply - very reassuring to know I'm not the only one. I'll be watching out for your updates following Monday's op. I really hope it goes well for you!!

Best wishes x

I had my lap in October 2015 my left side has always been worse and at times I suffer with sciatica down my left leg but my surgeon only found endo on my right side and on my bladder I also think it's referred pain.

I also the same symptoms as you and what Lindle and others have said makes sense that it could be referred pain and from the sacral plexus. I had endo on left US ligaments but right sided pain in groin, buttock and right sided sciatic pain and still do have even after left US ligament endo has gone. I had adeno and had womb removed and that made a tremendous difference not having killer cramps and awful period pains. Keep yr ovaries if you can I had mine removed and bitterly regretted that. Let us knowvwhat consultant says at yr follow xx

mylady77
mylady77
in reply to SusiePg

Hello SusiePg,

Had my follow up yesterday. Have opted for a total hysterectomy and tube removal but retention of ovaries. The endo will be excised from my USL and ureter, which will involve a stent during the op.

The nurse mentioned I have an adhesion on my omentum but this wasn't linked to any endo so I'm desperately hoping nothing has been missed!! Otherwise keeping my ovaries may be the wrong decision...

It's all a bit of gamble I suppose.

Thanks for your advice.

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