Finally - Answers!!!!! Uterosacral Ligament Endo... Help!

Hi Girls

Just thought I'd update, I had my follow up at Guys on Tuesday and got my MRI results... Apparently they couldn't see any Endo on my bowel and everything looked normal except for my right Uterosacral Ligament was thickened which suggested Endo had made it's way there..... Odd that my Ultrasound suggested that my ovaries were 'fixed' but nothing on MRI. The Senior Registar (who I saw) said that it doesn't mean that there isn't any endo anywhere else, just that it's possibly mild and not picked up on MRI. So his suggeston was surgery (which I gladly accepted). I'm a little apprehensive as I've heard that recovery from Uterosacral ligament surgery can be painful becuase of all the nerves there... as yet I've not had neurological symptoms so I hope this does't happen. I wonder if anyone knows whether I'd have to have a bowel prep before and have to stay in hopsital after the surgery and can you let me know what your recovery was like? What are the chances of endo returning to that spot?... Also is it true that having endo on this ligament causes bowel symptoms?

Sorry.... so many questions... I've had a lap before but they only removed endo from womb and bowel wall so this is all new to me.

Thanks everyone! xx

5 Replies

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  • Hi, that's good that they are investigating everything properly, and you will now have a laparoscopy to find out exactly what is going on and be treated.

    In what way do you mean / why are you concerned about Neurological symptoms?

    Having endo in pouch of douglas can cause bowel issues, but so can adenomyosis and several other conditions too.

    You may have to do a bowel prep depending on your case and preference of your surgeon, some do enemas instead.

    How long you will be kept in usually depends on how much was done during surgery, and how well your recovery from anaesthetic etc goes.

    I would find out how they surgically plan to treat it too, which is extremely important - whether they will be excising the endo or burning (ablation, diathermy). If all the endo is recognised and thoroughly excised (cut out) on the us ligaments (and elsewhere) for most women it should not recur.

  • I imagine that what you mean by neurological symptoms is referred pain from the nerves on the uterosacral ligaments that is usual with ligament endo. Typical symptoms would be pain on sex, especially deep penetration, low back and leg pain, pain with bowel movements and general stabbing pains. As you don't seem to be experiencing much pain hopefully your nerves aren't too affected.

    The uterosacral ligaments run through the Pouch of Douglas and are very close to the large intestine. Endometriosis on the uterosacral ligaments can irritate the bowels and cause cramping and gas pains. Adhesions can form between the uterosacral ligament and the bowel, irritating or even narrowing the bowels. Inflammatory toxins such as prostaglandins released by endometriosis from the uterosacral ligament can cause diarrhoea and irritable bowel symptoms. As we know a large proportion of women are mis diagnosed with IBS when they have endo, and it is endo here that is usually the culprit.

    The type of endo on the ligaments is nodular and these nodules can be detected by MRI or palpated on rectovaginal exam. As you haven't had these found it may be that you just have mild endo with adhesions causing the sudden pain you get. Once excised it is thought that nodular endo doesn't recur.

    Obviously we can't know until you have surgery but it does sound as if the nerves aren't affected and hopefully you should get a good result. I think this thickening is likely to be adhesions rather that any infiltrating nodules. I hope it goes well. x

  • Thank you both for responding... I do have gas pains, pain on opening my bowels and pain during deep penetration. I also have constipation and nausea. What I don't have is back or leg pain... All they have written on the surgery referral is remove endo... So I don't know how they plan to remove it... I'm waiting for my pre-op assessment and I also have an appointment with the specialist nurse. I will ask these questions then. Fingers crossed it doesn't come back, fed up with all of this now!

  • Hi - then you do sound to have nodular endo. Have they done a rectovaginal exam - finger up the vagina and rectum simultaneously as they would probably be able to feel any nodules? Centres do vary so be sure they intend to excise all the endo. x

  • They have only done a vaginal examination and couldn't feel anything... I fully intend to quiz them about how they will remove it... I would like to think they will cut it out. I'm at Guy's Hospital in London and believe that they are one of the best centres in London (maybe even the country)... Fingers crossed this all gets fixed before Christmas... I don't want another year ruined from being ill!

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