Deep Infiltrated Endometriosis in the Sac... - Endometriosis UK

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Deep Infiltrated Endometriosis in the Sacral ligaments Causing pain in the Hip/leg and lower back.

JOANNA901 profile image

Can I ask if anyone has a surgery in the U.K. that’s assisted pain on the right hip/right side of leg running down the side of the leg and sometimes to the foot, tight lower back pain also when needing to move your bowels. After a lot of reading and feeling of my body I have come across a lot of nodules on my groin area and my lower back , this has led me to believe it’s coming from deep infiltrated endometriosis on my uterosacral ligaments as it seems I have all the symptoms. I have now began to feel shoulder ‘ scapula pain which I feel is a result of nerves being pinched. I had a full hysterectomy and I can only assume that some endometriosis has been left. I had stage 4 endometriosis and severe adenomoyisis so I know it was pretty advanced. I had ovaries stuck down and covered in endometriosis and my bowel was stuck to my uterus , this has all been separated and I have no longer anymore pain in my stomach which is amazing but my hip pain etc feels so painful and I’d love to know positive outcomes and surgeons in the U.K. that have helped with this type of issue. Thanks so much ...

7 Replies

Could this be unrelated? It could be sciatica if its your back pain running down your leg to your foot.

Well sciatica typically runs down the back of the leg not the side and it started and flared when I ovulated originally so I know it’s cycle related and I had a lot of damage on the right side of my uterus and now with the nodules I can feel it Matches to a lot of testimonials on deep infiltrated endometriosis on the sacral ligaments , a lot of people with endometriosis are having the same issue..are you ? Plus the foot is only now and then , I think nerves are being pressed causing this sensation in the foot...

Hi Joanna901

I haven’t had any surgery but you have just described all the pain and discomfort I get each month despite having a mirena coil fitted. Up to two weeks before my period my left hip seizes up, with pain stiffness and discomfort radiating down my leg. I too am now noticing shoulder aches and pains on my left. They told me at the scan they couldn’t see any endo but I did have adeno.

I thought I was going crazy but I think I need to get back to my consultant. The mirena has eased the blood loss and pain of my periods but still suffering with all the other stuff.

Endo can be very hard to find and some may have been missed. I really hope you get something sorted.

This is exactly the same pain that I get! Also just started getting shoulder tip pain too. I had a laparoscopy 3 years ago and Endo was found on my uterosacral ligaments, some was removed and I did get about 6 months of drastically reduced pain but it gradually started to come back to the point that I now get all the same symptoms you’ve described. I can’t be much help in terms of a positive outcome, I’m currently waiting on a referral to a BSGE centre but thanks for sharing, always comforting to hear that other people with known Endo have these symptoms. Hope you are able to get some help quickly!

It’s just so painful isn’t it ! Have you felt and pressed down on your groin area and lower back and hip and felt little or somewhat large nodules ? I am so positive I have nodula endometriosis and it’s defiantly affected my back as it Matches with what happens when the sacral ligaments have been infiltrated by the deep endometriosis, have a press around those areas and see what you find, every night I’ve been intent on finding out what this is and after being fobbed off so many times I am taking matters into my own hands... I know this is related to all my endometriosis, it was severe and it doesn’t surprise me as the surgeon when he operated on me for my hysterectomy said it was a mess. I can’t live like this as I am only 44 and if it’s this painful now then I’m so worried what it will be like in 20 years, I’ve found a surgeon who specialises in this and his name is Doctor Mann, he has clinics in the midlands and he has a team of specialists that work on all areas that endometriosis can spread to ie the colon, chest etc because it does spread there ! I have bowel issues because of this so I will have an MRI and go from there ... I think the sooner this is dealt with the better as each month it relaxes more blood into these areas outside Normal areas of the uterus and damages organs around the areas, if only I knew I would have done this years ago to stop it getting to this mess..

Juls1971 profile image
Juls1971 in reply to JOANNA901

Hi Joanna

Our journeys sound very similar. I had a hysterectomy 3 years ago for deep infiltrating endo on my ligaments and adenomyosis. My pain virtually disappeared and I was good for about 3 months then felt similar pain but certainly not as bad as the previous 20 years of suffering. I am in Scotland and regret not being referred to an endo specialist as I don’t believe my ligaments were operated on. I don’t particularly relish more surgery (4 ops in 10 years due to endo) so have been trying to manage with diet changes and more exercise. I feel pain in my groin when I sit for too long as it hard to straighten up so not sure is this is the ligaments. Completely agree with you in wishing I had more knowledge of this earlier on in my life. I’m 49 so like you, have a fair bit of life left in me and intend on living it to the full. Wishing you well with next steps x

What a battle this is Juls , honestly it’s so draining , I can’t believe it’s taken so long to understand what’s happening and this is me going to the top clinics and top specialist in our country for this all to be missed ! I’ve done so much reading and researching with what I know to try and figure out what is wrong with me !! Well I don’t blame you for not wanting any more ops ! I just know this is to painful and restrictive for me to live with , I ended up having 14 IVF’s and miscarriages along the way hence the hysterectomy as I couldn’t cope with the pain , so in the end we went down the surrogate route and I’m proud to say we have just been blessed with twins so I need to be on top of my game😀😀 ! I’m worried even in a few months I will be so restricted as I can’t bend at the moment and pull my right leg when I change so it’s pretty restricted in what I can do so if I can get my mobility then I’ll be so happy ! I do yoga, I intermittent fast 5/6 days a week and I take lots of good stuff Including turmeric in every shake I have with pro bioitics ! I’m a veggie , I lost nearly 30 pounds this year to take any additional stress of my joints so I can only do what I can do and this must be my next route as I have no other , if it wasn’t for all these forums and websites I wouldn’t have a clue to what’s happened to me as no one else seems to !! Even the specialist ! It’s just unbelievable... anyway as my husband says you have to be your own doctor and don’t give up ! Life’s to precious to be living in pain especially when there are people out there who can actually do something about it !!

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