Adenomyosis and leg/hip/sciatic pain

[Worzel]

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

[Dear86]

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?

Xxx

[moonwish9 in reply to Dear86]

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

[Tinaavery in reply to Dear86]

I know this post is from 4 years ago .I have been diagnosed with adenomyosis 7 months ago and I have back pain heavy heavy bleeding a d terrible ciatica. ....from reading your post got me thinking the main reason my ciatica is so bad is from pressure from my belly .but I do have 3 slip disc so I'm still not sure what was causing it but afyer 10 years of suffering with ciatica I was finally sent to have nerve blocks dine and I'm happy to say it has helped now if they can fix my uterine and cyst on my overies I will be as good as new lol all though the pain pain sucks to.....so how are you feeling now? Have you found any relief if so I'd love to hear about it.

[Dear86 in reply to Tinaavery]

I went through a lot of pain and was going to have my left ovary removed but ended up needing ivf. I got pregnant and after leaving the office for maternity leave, my pain has not been as bad daily. I think sitting at my desk 40 hours a week was just unhealthy and putting too much pressure on my abdomen. X

[Bachoo]

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

[flossyk]

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

[Worzel]

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

[borderali]

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

[Bachoo in reply to borderali]

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.

[afiAra in reply to Bachoo]

Hello dear

I m experiencing same . Where did u do the operation and how do you feel after the operation. How long are you going to be on Zoladex .

[crystalbell in reply to borderali]

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

[Impatient in reply to crystalbell]

Oh yes it can..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.

[crystalbell in reply to Impatient]

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

Won't be having second one!

[borderali in reply to crystalbell]

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

[crystalbell in reply to borderali]

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

[afiAra in reply to crystalbell]

I agree perfectly with you . Most sickness and adverse diseases are caused by Drs errors . They will never admit cause if laws .

My experience is when I have tried 3 times with Ivf all failed however have 5 frozen embroys and my lining thickened. I was referred to a quack dr . He made me get infection unknowingly over a year after hysteroscopy . Then I got adenomyosis . I kept telling them I think there’s infection going on . They gave no ears to me till I went to A& E with stomach pain . Again they prescribed laxative then after a blood test it cane out as infection. I m horried

[jayneeb3]

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

[Margo45]

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

[ilovemykids]

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

[endoagony]

....."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

endopaedia.info/subtype17.html

Lots of other info on this site too.

Take care

[Meajg]

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.

[mommy2twinsene]

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?

[mommy2twinsene in reply to mommy2twinsene]

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

[evergreengirl]

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!

[lefty2016 in reply to evergreengirl]

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.

[DoubleJay]

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 ?

[katymarie]

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?

[EndoHubby in reply to katymarie]

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

[Woman53]

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,

[Kaitgray in reply to Woman53]

I could cry, my symptoms are almost identical to yours! I know this is 4 years late but finding your comment is making me pushing my doctors to actually take me seriously!

[Lalalollipop]

Hello! I was so pleased to find this thread (but not pleased to know so many other people are going through it)... I have hideous sciatic pain (some days I can't walk, and haven't slept more than a few hours at a time for longer than I can recall), and after a whole lot of MRIs, CTs and x-rays my GP has decided that by a process of elimination it has to be related to Adenomyosis. Having tried all the alternatives, including a terrible experience with Mirena IUD (I only had it in 6 weeks and have NEVER been the same), I'm on the waiting list for a hysterectomy.

I'm terrified that I'll have the surgery and it won't make the sciatic pain disappear, but the worse the adeno gets the worse the sciatic gets, so it has to be related right? Has anyone here had a hysterectomy under similar circumstances and had the back pain/sciatica go away? I also have the rectal pressure too.

I know this thread is a few years old, so I hope all (or at least most) of the previous posters are healthy and pain-free

[RPosie in reply to Lalalollipop]

Hi, I have been scouring the web for weeks, to see if anyone experiencing the same pain, I have had all adeno symptoms, but the one I am now finding debilitating is hip pain, which shoots down to my foot, I'm having an mri next week and on a six month waiting list for a hysterectomy, but the pain is never gone, I keep doubting what it is.... I feel the same as you scared that the pain will never go.... sorry to hear you are in pain, but has helped to see I'm not the only one who is experiencing this. I hope you're having a better day today x

[Lalalollipop in reply to RPosie]

Sorry to hear that RPosie - but yes, it is reassuring, isn't it, to know if others are going through it then it's a good chance that it's part of the fabulous adeno package! The hip and leg pain is the worst, and yep, it doesn't ever go away now. Hope you get some relief soon, and good luck with the MRI.

I'm on a six month list too, and just hoping I haven't trashed my liver with painkillers by then. Here's to us feeling like normal, functioning humans again by christmas! x

[Cat247 in reply to RPosie]

I'm in exactly the same situation! I had severe endo removed in 2014. I was pain free for a few months after recovery but then problems started creeping back. Luckily I managed to get pregnant but after my baby was born in Aug 2015 I've had the awful lower back/pelvic/hip/leg pain again. I thought endo was back as suffered this pain before but had lap march this year to be told no endo back but my ovaries are stuck down to pelvic wall with adhesions and my womb is larger than a usual one so chance of adenomyosis too. I actually wasn't going to get a follow up but I pushed for one and luckily I did else I wouldn't have known ovaries were still stuck and about poss adenomyosis. Problem I have now is they're saying there's no way my adehesions and adenomyosis would cause the sciatic type pain I'm getting!! I could scream as I can't see what else it could be! Waiting on a date for an MRI at the minute as they want to check for things like slipped discs! So frustrating as I know it's not that. I also get awful sharp stabbing pains in my ovaries and literally feel pulling and dragging pains from front through to lower back. My GP agrees the adhesions are causing the pain so going to have MRI and then look for a new consultant. I just really need to find someone who believes ovarian adhesions and adenomyosis can cause sciatic type pain. I had to fight for 5 years for endo diagnosis now I feel like I'm back to square one with all this! Off to pain clinic on 4th July, not had a good experience there in the past but will give it another go. So good to find others suffer with this pain too so I'm not alone. If anyone has a similar experience and has had success from anything please let me know!!xx

[Parque67 in reply to Lalalollipop]

Hi hun I too have suffered with this for some time now had 18 months of non stop bleeding large clots on a daily basis became severely anaemic . Had novasure ablation in December 2016 felt great until I was due for my period in January and I was in agony my stomach blew up ..only slight blood loss but i felt like I needed to push like in labour to relieve the pain stomach hardened when I walked .. I have been in agony ever since had slight blood loss but feel the ablation worsens the adenomyosis ..my stomach is still huge and body swollen with fluid ..I'm literally crying almost every day with pain and pressure in pelvis back and stomach I look 7 months preggo...pain in leg knee and foot it's a dull ache that is there constantly but can worsen if I'm constipated hurts me just to lift my leg out of the car !!! Horrendous 😱...I feel so old but good news is that I am scheduled for hysterectomy next Thursday 15th 😁..it seems like a long time wen your suffering like this but I'm certain it will cure all my ills..cannot cope any more with this pain and swollen body ..I will post back to you all on here when I'm out of my op ...and pain free 😂😂😂 my sympathy with you all who have this condition ...nothing helps but hysterectomy by the way so I feel trying anything else is just prolonging your agony ..take care and hope you have some relief soon xx

[Dawn1970 in reply to Parque67]

You sound like me. I have had pretty much the exact same thing happen. I got my period on Christmas Eve 2012, lasted for a week. I started again on January 6, 2013 and bleed until my surgery November 14, 2013. Was severely anemic, headaches daily and fatigue but little or no pain. Went to several doctors and tried various treatments. At one point I was taking 3 birth control pills a day to control the bleeding but it made absolutely no difference. In fact, I think it made the bleeding worse. I had a lap and for about 6-9 months felt great. Then one month I had a period ( well not much bleeding, haven't had much at all since the surgery in fact) but the pain was awful. Went back to my doctor and he said the pain was probably from scar tissue from the surgery but gave me nothing for pain. The heaviness in my legs is incredible and on top of that, my job requires me to stand for 40 hours a week. I pretty much have to lift my legs in and out of the car and the pain in my back is so deep, feeling like a burning poker being twisted inside my tummy. Last few periods the pain has increased and even made me stomache sick it was so intense. Went back to my doctor a few days ago and he wants to insert an IUD. This is not covered by my insurance so I would have to pay out of pocket almost $500. And it is not guaranteed to work. I have heard horror stories about people having IUD's and in my gut, I really don't think it is the solution. I want a hysterectomy but he doesn't want to do it so I have decided to go back to my family doctor and explain the situation to him and hopefully get a second opinion reading your post made me realize I am not crazy and all these things are related.

[Parque67]

Can I also add that I could sleep all day..and have to motivate myself to go out as I'm depressed..lethargic..and feel sick but sometimes ravenous when I just need to eat...I am always sweating too ..and hair has been thinning and my nails breaking ..I'm taking iron tabs but still anaemic ...and my boobs r sore cannot bend and if I try to excercise and lift my legs towards my head it feels like I have a baby in there ..does anyone else feel like this? I also bruise easily and suffer severe heartburn and tonsil stones and pressure in my ears ...I'm just a mess really but all bloods etc were clear but cannot c my left ovary and have the adenomyosis .. so many symptoms to this disease as it affects your hormones and as your womb is enlarged makes your body think ur pregnant !! Needless to say I will be coming back in my next life as a Male 😂

[JackieBo in reply to Parque67]

It's like you described a day in my life anymore. The sweating/hot flashes are so annoying and the fatigue is no joke.

I had to stay off work yesterday because I had such severe stomach pains and today I still had to stay home because I feel so exhausted from yesterday, not to mention the residual soreness from yesterday's higher pain level. It's so frustrating. 🤕

[Parque67 in reply to JackieBo]

There are so many symptoms associated with this awful disease I don't even think the professionals are aware of them all ...it takes us sufferers telling each other our symptoms that helps us realise how many symptoms this disease has..I feel for you as I am the same and every time we ovulate the condition deteriorates ...I am actually looking forward to my hysterectomy just to know this huge weight in my stomach will be gone I've never been so big in my life all around my mid section ..my waist has dissappeared 😱 hope you feel better soon hun and IL keep you updated on the outcome of my op 👍 take care xx

[Sarahw76]

Hi. I had endo 17years ago they sorted it and gave me injections I was okay for a few years. I have been suffering for years with my bowels, diarrhoea swollen stomach excruciating pains and was told ibs so I tried Every thing but no to avail! These past few years I've had stabbing pains in my legs they bolt stiff and my back ache so badly it's getting me down I'm not a soft person but its awful I also have heavy periods clots I sweat badly I'm exhausted. So finally I had a lap as thought it was endo returning but when he got in there I had deep adhesions (adhesiyosis) so these were cut, also I had the marina coil inserted. Basically I'm 8 days recover and today my bowels were worse than ever and my legs stiff with pain and locked any one give me advice I feel so fed up I can't go on like this! I'm 41 work and have 3 children it stops my life at times