Does anyone have/heard of/can share their experience/pain with Uterosacral Ligaments please.

[Amb43]

I may have some Endo on my Uterosacral Ligaments, just looking for as much info as possible PLEASE. My pain in my lower back is incessant, getting worse, stronger and has been there every day for 6 months. xx

[worth71]

I have endo there, it's all over my ovaries and stuck them to something else, it's all over my pelvis, my bowel and bladder and pouch of Douglas, I get a lot of lower back pain, and then my left lower back and pelvis is really bad, and it goes down my left leg too, but i think thats cos there is so much endo on the left side, mine has been quite bad for about five years now, they didn't remove any endo at my lap as said too extensive - have they said where else your endo is, did they remove any for you? All that helps me is hot water bottles on my lower back, sometimes I can walk or do gentle exercise too with the help of pain killers xx

[jojo777]

Hi there, I had endo in my right uterosacral ligament (constant pain-i know what you mean). To remove the endo from such place you need a very experienced endo gynae that he will perform excision and not laser. It is possible to remove all of it from there (as they did to me).

Endo there does not cause infertility (unless you have somewhere else too), but the pain is severe as the ligament area is full of nerves.

The tricky part is that when they remove the endo from there, sometimes have to cut a small part of the ligament too. The body replaces this part though with post-op scar tissue that it is not so flexible as the original ligament is (it is originally as flexible membrane). Therefore, it might continue giving pain signals as it stretches a lot either with movement etc or hormonal changes. My gynae showed me even pics of before and after cases.

This is the reason why I'm still in neurological pain (still the nerves are irritated and react from scar tissue) when actually I'm endo free.... x

If you are in London area, there is a brilliant endo centre and doctor that you could see regarding this x

[Amb43 in reply to jojo777]

Hi Jojo, we meet again!! I have been told that I have Endo on uterosacral ligaments on both sides, but, despite lots of tests on my back, they are still going down the road that there is something wrong with my back and not the Endo that is giving me lower back pain, nagging, dragging, dull, constant pain like period pain/labour pain. I am so sorry you have been through this incessant pain too, and all the tests, but was relieved to see the uterosacral ligaments can be excised (by a specialist) as the Senior Gynae Registrar I saw says it can only be lasered. On the other hand, although being Endo symptom free, you are still suffering with pain, which you now know is nuerological. What further help is there for you with this pain? How have things been left with you?

A Specialist Endo Centre has just opened near me, and after seeing the Head Gynae in a couple of weeks time (who I was promised I would see the other day) I may well ask to be referred there.

Hoping you are not in too much discomfort today, the sun is shining beautifully here, well, at least I can see it from my bedroom window Take good care xxx

[jojo777 in reply to Amb43]

Hi there, I'm seeing an osteopath, he works from the head/neck/shoulder area unblocking and releasing nerves that goes down to the pelvis. I have seen him 3 times so far and I can already see some progress. hooray! lol

I also have done acupuncture, but aggravated the pain even more, I was unlucky as I was too sensitive for it and the therapist didnt adjust it properly too. So, I'm going to stick with the osteopath and later on I'll start swimming too, to help the the lower back nerves too.

I do hope you get sorted too and good luck with the appointment xx

[Fernanda1 in reply to jojo777]

I know this is an old post, but was wondering if you can still give me the name of the endo specialist in London?

Thanks!!

[Hidden in reply to jojo777]

Hullo!

I am in London and would love these contacts, I'm due for surgery in the coming weeks but have just uncovered a discharge letter from 2011 which described uterosacral ligament endo which was lasered, not excised; and the same symptoms have become increasingly consistent in the past year. I'd love to get a second opinion, or really just anyone who can give me some advice on where to go and what to ask. My support network is based on the other side of the world!!

Swell regards,

Gretchen

[Bledie]

Hi, I also have endo on my uterosacral ligaments, I have severe back pain when I have my period and I also have pain that radiates down my right leg. I thought it was because of the endo on my right ovary but could be because of the endo on the ligaments. I have been taking extra strong omega 3 (there is a penny sale in holland and barrett I just bought some today) and somebody recommended primrose oil and I've started taking that as well. I have noticed a decrease in pain after upping my omega 3 intake.

Have you asked for another lap?

Hope this helps. I know how hard it is to be in constant pain. Take care xxx

[Amb43]

Hi Bledie, so sorry you are suffering with this pain too, but glad that you have found the omega 3 is helping. How have things been left with you, are they offering you any treatment? Unfortunately my pain is every day and has been so for the last 6 months and I am almost bed-ridden and on a cocktail of meds including Morphine. I have mentioned above in my message to Jojo that an Endo Specialist Centre has opened near me (hoooooorrrray!!!!) and I am definitely going to ask to be referred there as I am just not confident that things were thorough during my first lap. ALso, they will be able to do carry out much more specialised surgery which is obviously needed where these ligaments are involved. Wishing you a pain free as possible day, and would love to hear what is next on the agenda for you. xxx

[pinkestpink]

i had...have? two spots on both of my uterosacral ligaments, they were burned 1/2012 and I am going back for surgery in a week or so, hoping for better results this time. My pain is mostly in my lower back and it is awful! i have pain in my pelvis as well, it shoots all the way from my back to my front... not so much fun. i use Motrin, from my gyn and it is very helpful and my heating pad is my best friend for my back pain.

[Kfern]

I had endo removed from these areas unfortunately the surgery of course was successful !! However I suffer from ongoing back pain that has never improved I use heat and painkillers 😁

[Dangermouse381]

If anyone is still here i' d love some advice. I am day 5 post excision and had it removed from pod, both ligaments, bladder, ovaries.

My lower back pain seems to be getting worse. I'm not too sure i this is normal?

No matter how I sit lie or stand the pain doesn't ease. Pls tell me this gets better . I'm really starting to worry about nerve damage x

[Lillil]

I have this suspected too. Please could any of you tell me if you get pain in your hip or groin too? I have a pain lower than my ovaries that radiates to my hip then shoots down the front of my thigh and branches out over the knee.

I also have severe lower back pain.

Ive started pregabalin which has really helped.

One gynae thinks its not endo repated, another thinks it is. I don’t know what to dox