Adenomyosis and leg/hip/sciatic pain

Hi, I have endometriosis but have only got an active patch in the muscle wall of abdomen (also had another patch removed from abdo wall 6 months ago) I had a lap last week and was told I possibly have adenomyosis. I have various symptoms - all horrid, however I have really painful/heavy thighs and legs, hip and sciatic pain. Does anyone know why adenomyosis causes this? Is it because the womb might be swollen and enlarged and pressing on nerves? I've only seen one website that mentions leg pain associated with adenomyosis the rest don't mention it, so I wondered what everyone's experiences/thoughts were. Thanks in advance. Hope you're not too uncomfortable tonight x

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25 Replies

  • Hi there

    I have endo and adenomyosis and more than the pains associated with endo, my biggest pain is lower left back pain and sciatica that shoots all te way to my foot. I've seen back specialists and there is nothing mechanically wrong with my spine. I know for sure this pain is associated to endo and adhesions. The only time I had relief is post lap when my ovary has been mobilised and adhesions removed. The sciatica stops then. Is your uterus retroverted?


  • Hello,

    I really empathis with your situation. I have devolped vasular problems & fluid gathering in my legs / feet following a laporoscopy that went *very* wrong & left me in extreme daily pain and has transcended into a Vascular issue because my former G.P's kept saying "we'll just leave it & see what happens..." ditto the Endo Gyne I was under (*but did not do the op) at the same hospital that left me in this situation.

    (Additionally I was left needing my umbilicus repositioned, have a damaged bowl , a *mass* which improbably scar tissue pressing on my bowl & have in extreme daily pain for nearly 2 years)

    I've been forced to find my own help via a very good Osteopath who combines actupunture as I am still awaiting a NHS Vasuclar ref after seeing a private Consutant who basically just too my money, said he'd put me on his NHS clinic list very quickly, made me pay a *friend* of his to write a private ref to the hospital which got rejected twice.

    I finally got a NHS ref to the same Consultant but ended up STILL having to go through the PALS dept to see him - when I saw him he was unbelievably vile & threatening to me so I now need to find a decent consultant as my Podiatrist & Osteopath say that I’m in need of proper tests & scans.

    Hope you get your issue resolved soon as leg pain is debilitating & inconvienient..

    PM if you want the contact details of my Osteopath, she is a lovely lady who would help you as much as possible.

    Best wishes x

  • I have leg pain with my endo, I guess it does that sometimes

  • Hi everyone,

    I also get hideous sciatic pain, and lower back pain with it, it was better after my lap for a bit, but it's something that never really goes away.

    I think it's something to do with the adhesions from my left ovary and internal walls, according to my Dr, but who really knows.

    (I am trying really hard not to cross my legs as this can make it worse!)

    Painkillers, hot baths and heat pads are all methods I have tried, my chiropractor helps too, but nothing really seems to make it go away.

    Er...that's neither cheery or helpful, sorry!

    Hope you all have a good pain free, (or minimal pain at least), day.x

  • Thanks everyone for your replies, it is really comforting knowing other people experience similar problems. Wishing you all well today x

  • I only started getting this when I was put on zoldex.

  • Before my op I use to get leg pain on my left side, because my bowel was attached to my uterus on that side of my body. However after the op the doc put me on zoladex and I get pains in both hands and legs. Its the zoladex I believe, it just makes you feel sick with these body aches. Well at least that is how I feel while I am on it.

  • Hi, do you mean you're getting sciatic pain since starting zoladex? I have become crippled with back pain since 6days after implant. Its been 2 weeks now and I can barely walk to the bathroom! How are you doing now? My dr says zoladex couldn't cause this. But I know it has. Hope you are better now :-)

  • Oh yes it can cause really painful limbs, pain in bones, veins muscles etc rendering you bed bound. There are lots of ladies that have reported it just on this forum alone, never mind all the other webs that patients report their side effects.

  • Thanks for that. Nice ti know I'm not alone.

    Won't be having second one!

  • Yeah it was the second injection with me, throughout the whole treatment I have been like an old woman!! The pain is the type u just can't get away from no matter how you sit liedown stand what ever, I described it as an ill fitting bra you can always feel it, when your having a bad day that's when the bra starts digging in!!!! Lol, I had my last injection on the 16th Sept, still in pain and I have come on today already!!!!!!!!!! Oh hum good luck with your treatment it coukd be different for u remember. X

  • Hi, wouldn't it help if the doc's admitted this! So far I've been told it's not a side effect and they have never had a complaint like it. Makesme feel llike I'm going crazy! This is just via the secretary. Not even worth of the Dr's time! How can wr trust them when they don't even understand the drugs they prescribe? Hope you're feeling better now. X

  • I have had this too and was told it sounded like sciatica, when I had my lap my bowel was attached to my uterus on the right hand sign, which is where I experienced the most pain. I h had my right ovary and tube, I had a cyst only 4cm on the ovary, removed but still experience the same pain and am back to the consultant a year later. I was only pain free for 2 month x

  • Hi Hun, hope you are relatively pain free at mo. I have the same problem and am writing this from bed! I would like to know more if you come across any answers as have come to a standstill. I have tried a acupuncture (which normally helps) and remedial massage but I'm stuck at mo. awaiting hysterectomy (which I don't want to do but feel no other options). Good luck. Sarah x

  • Hi, I've recently had my 5th lap, however I still get really bad hip pain, both sides. However my right groin, thigh, hip and leg are particularly worse. My right leg gets that bad I have to limp, I also find before my leg pain gets at it worse I have really bad cold sweating but feel really hot with it. I'm not on Zoldex. I find the pain worse mainly when I wake up. I want to go back to work so bad! I just wanted you to know your not on your own xx

  • ....."When the uterus hurts, it can radiate pain to the lower back, up to the belly-button and down the front of the legs." ........ taken from

    Lots of other info on this site too.

    Take care

  • Hi worzel, i noticed your post is 4 months old. I hope you are doing better. First off I have had identical symptoms as yours for about4 years. Gradually increased over the years. I thought my body was changing& was diagnosed with arthritis. Lol. The pain in legs hips lower back & pressure & cramps in uterus got so bad. I went to ER. I had a sonar. I was diagnosed 6 months ago with a uterine fibroid almost 10 cm. 5 months ago i had larprascopy to remove it. After surgery i was told my uterus was 5x the normal size.. I thought it was from the fibroid. At my 6 wk post op check up. I told the Dr Im still having debilitating pain. He said its from the Adenomyosis. I said whats that he said thickening of uterus & swelling. I said from surgery? He said no you had this Just found it during surgery. So he waited to tell me. Ive done many searches on the pain symptoms. No Md or research sites say anything about these symptoms. However I have read many testamonayls such as your post. Many women complain of these pains. Dragging thigh pain hip & back pain. Ive been told by 4 Dr.'s it has nothing to do with Adeno. Im convinced they are wrong. I also have what appears to be a bakers cyst behind knee. Its painful. A few posts Ive read women stated this also. Fatigue, headaches , kidney,joint pain anxiety & depression seem to be common too. I do believe a lot of the leg hip & back pain could be from enlarged uterus pressing on nerves leading to those areas. Problem is Ive read people who have had hysterectomies still have pain. Which leads me to believe the nerves have permanent damage. This is scary. Dr's don't seem to know enough. We don't really know how bad Adenomyosis is & what its doing to our body's.

  • I was just searching for the answers and came across your post. I have all of the symptoms of adenomyosis and just told by OBAMA that she thinks I have it. I finally went to her because my period was lasting 2 weeks with break thru heavy bleeding and bad cramping. But my biggest problem has been the sciatic pain. It will start in my hips and then as move into my lower back. It has been debilitating and only comes when I ovulate and before and during my period. I brought it up to my ON and she blew it off as if it is not related. I knew nothing about adenomysis at the time but now after doing research what you said only makes sense. If it can cause constipation and push in your bladder then why can't it push on a nerve and cause the sciatic pain. I was just w o needing of you found any answers?

  • That was supposed to say OBGYN sorry darn auto correct.

  • Hi all -

    I was just diagnosed with adenomyosis, fibroids, and multiple ovarian/fallopian tube cysts. Other than the heavy bleeding, I'd rate my low back, hip and leg pain as the worst symptom by far!! For me, the pain is nonstop. All month long, my low back hurts and there's a constant ache in my legs from the back of my thighs all the way into my calves. It is most definitely is getting worse with each passing month, and is particulary worse at ovulation and menstration times. It also seems to be so much worse at night, waking me up at least a half dozen times per night. What I wouldn't give for just ONE night of uninterrupted sleep! Does anyone else have nighttime back/hip/leg pain? Also, thanks for sharing your posts! Like others here, I feel like there's not much info on adenomyosis, so having the benefit of your posts has really helped me feel that I'm not going crazy!

  • I have adenomyosis and have horibble back and hip pain. I have had three MRIs and there is some slight tissue damage and now I have a herniated disc. But each MRI mentions how enlarged my uterus is. How can a trained radiologist not be able to connect the dots!

    I have the bleeding under control using Prometrium but the enlarged uterus has not gone away. I am 54 and trying to hold off on a hysterectomy. But I am so tired of the chronic pain.

  • I was recently diagnosed with endometreosis. Have not undergone surgery yet. I have had sciatic pain for well over a years the past couple weeks I've started having pain in my right leg and hip as well, and excruciating foot pain. Very painful to walk. Has anyone else experienced pain like this ?

  • Hi. I am having a lap to see if I suffer with endo or adeno. I have cramps but along with that mainly have pain down the leg and thigh also like sciatica pain. I have heard this can be down to tissue etc resting on your nerve causing the pain. Do you also have a full heavy feeling in your pelvis and around your back?

  • Hi Katy

    My wife has the same story she has been feeling full and heavy for a month now . she describes it as a dull pain .

    The ultrasounds did not find anything Except a myrometrial cyst so we are going to have an MRI and laproscopy

    I know this reply is 8 months late . Did you get any answers

  • Was diagnosed after my GP saw the size of my abdomen and swollen body . He sent me to private clinic had the Mirena reomived that my gyno insisted would help! Five years of pain back abdomen and in the rectum in addition to the extremely heavy bleeding every 28 days. Gyno told me to suck it up!! Getting old etc. Waiting for ablation after harassing gyno and losing quality of life, I can only say to keep insisting something is wrong and push for tests. My legs constantly elevated because of throbbing and swelling. I use to run daily . The pain in the rectum and abdomen is too much so just lots of twisting gently on yoga mat! I want my life back,

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