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

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 :)

22 Replies

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  • 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

  • Uterosacral endo almost always affects the left side and the left ureter is often involved as the ureters runs very close to the ligaments. The type of endo involved is nodular or DIE (deep infiltrating endo) as it is formally known and the nodules grow into the ligaments and compress the nerves. A nerve runs along each US ligament and these enter the sacral plexus at the base if the spine which is a confluence of nerves that becomes the sciatic nerve. I don't have any detailed knowledge of neurology but if it is the right side that is affected with buttock and leg pain it might be possible for a cross over to occur within the plexus.

    Was the lap diagnostic or did you have the nodule excised? If you did have it excised then this is likely to have aggravated the nerve and it is very early days if your lap was only a few weeks ago. You might need to give it a few months to settle and if you feel it hasn't resolved your pain then it may well be adenomyosis as this can cause the same symptoms and as you will know a hysterectomy will be the only definitive cure for this. Adenomyosis can be very difficult to diagnose and can be of two forms - localised into lumps or adenomyomas that resemble nodular endo and are thought by many experts to originate from the same tissue present at birth and diffuse which is when the adeno is widespread throughout the muscular layer of the uterus and causes the bulky and spongy appearance. The adenomyomas are easier to diagnose than the diffuse form but specialised radiographers usually can identify it as seems to be the case with you.

    Certainly the mirena will do nothing for rectovaginal endo since it works locally within the uterus and it is acknowledged in the NHS England contract that hormone medications generally are not effective for deep endo since the pain is caused by nerves and sometimes adhesions. This pain is not caused by oestrogen so is not affected by trying to withdraw or reduce it.

    I do think you are likely to need a hysterectomy at some point but let us know how things go.

  • 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!

  • Are you having the nodule excised at the same time?

  • Yes, that's the plan.

  • Then you sound to be in good hands. I hope all goes well. x

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

  • Hi Jean - the US ligaments are one set of several ligaments that hold the uterus in the pelvic cavity. They join the back of the cervix to the sacrum, running along the top of each side of the pouch of Douglas and going round the colon, again one on each side, until they join the back. If the cervix is left after hysterectomy then they still serve to hold the vagina up. If the cervix is taken then the US ligaments are cut from the cervix and rejoined to the top of the vaginal vault to hold it up. Vaginal prolapse can be a problem after hysterectomy but this aims to prevent it. x

  • Thank you Lindle.

  • 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!

  • Hi - it is not known for sure because the pathogenesis of endo is still unknown but it is thought possibly to be due to the sigmoid colon entering the pelvis on the left and if retrograde menstruation is involved this might aid the transport of menstrual debris to the left side. But really it is not known why - just that statistically the left is much more often involved. x

  • 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

  • caz-54. It is clear from the previous history that mylady77 has suspected adenomyosis from an MRI. She has rectovaginal endo affecting the uterosacral ligaments and ureter that typically causes referred pain to the sciatic nerve. If this is the cause then it can only be resolved by removing the nodule. Adenomyosis can cause the same symptoms. I am not sure why you suggest a general surgeon to deal with this as the NHS contract requires this to be dealt with in a BSGE centre that I am sure you will know as a retired nurse has to have a pelvic pain management department as part of the multidisciplinary team.

    THEY decide if pain management is the appropriate course.

    This forum is backed by the NHS and recommended in the NICE guidelines and as a consequence the advice given must be reliable. We have a very deep knowledge of endo and the correct UK treatment pathways on here. I'm not sure why you think considering adenomyosis is over the top when a radiologist suspects it. May I suggest to look at women's histories before commenting.

  • This is a public forum where women post the most intimate details of their medical histories for consideration asking for help. Mylady77 had given all these details in her previous posts for all of the thousands of third parties who are members to see. If you truly believe that women should not be posting details of their medical histories in the only help community many of them have to rely on, and a community that is recommended by the NHS for this very purpose, because you believe it to be against ethics then there really would be no hope for anyone. We have women from all over the world coming here for help and support who can only receive that if we know what their full story is. I sometimes spend hours going through a woman's previous history that she has quite happily made public in order to give correct and appropriate advice. I can assure you that Endo UK has confirmed personally to me that they value my help greatly and this applies to all the other members who give freely of their time to do whatever we can to help women with a condition so poorly understood by medical 'professionals.' Women always have a choice to communicate by private message but it is the public discussions that reach the furthest and give the most help to the greatest number. This is the very essence of the community and its reason for existence.

    If women choose to describe their symptoms in a public forum run by a highly recognised and respected platform (Endo UK) and voluntarily choose to be a member because no one is listening to them and you object to it on the grounds of ethics then I would respectfully suggest that it is not a community for you.

  • 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

  • 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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