Endometriosis UK
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Pain in legs, anyone else?

Well it's roughly 6 days before my period is due and the stabbing/shooting pain in my right leg has started. Does anyone else suffer with pain in the legs? x

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Ohhhh yes 😩😩 I get pain in both legs before and during my period, honestly sometimes it’s so hard to even get a shower because my legs feel really heavy like there just going to go from under me 😩 I can only describe it as a dull aching pain 😂😂 hope this helps x

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Does it feel like really bad growing pains? I can only compare it to that as I remember the pain from years ago aha x

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😂😂 yeah it is am terrible at explaining pain haha x

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I am too I can only imagine me trying to explain it when I'm at my appointment they'll think I'm nuts aha x

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Try putting a couple of pillows under your knees when your lying down sometimes eases the pain for me and am sure they’ve heard worse hahaha x

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I do that for my stomach as it hurts more when I lie down, the joys aha x

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Yep I certainly do, until now I’ve had it mostly a pulled muscle type of pain at the tops of my thighs and the sides however I recently started experiencing more shooting type pains. Just curious are you on the coil? I wondered if it was maybe related to that!x

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No I'm not on the coil as I have a bicornuate uterus so I can't have one, sometimes the pain can feel more like cramp in my legs but most of the time it's shooting pain x

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I got told at my last clinic appointment that they thought the endometriosis had somehow made my nerves hypersensitive, maybe something to do with that? I’ve seen a few posts about leg pain I’m sure you’ll get lots of replies about it. Funny how one thing can affect so many other bits of you!x

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I haven't been diagnosed with endometriosis I'm waiting for my first specialist appointment in 2 weeks after years of complaining to my gp, currently laid in bed after trying to sleep for nearly 3 hours but the pain isn't letting me. The joys hey x

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Hi jennabird... just a question as I'm under investigation for endometriosis due to leg and pelvic, groin and tummy pain😏 and have been offered the coil which i was told would help my pain... but my left thigh has been going numb on and off for the past 6-8 weeks accompanied by a weird sensation... I'm wondering if i should decide to have the coil could it effect my legs more?

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Hello! I thought I replied to this but apparently not - oops!! I’m not sure that it would affect it more as such although I did feel like I had a lot more pain initially but it settled down after a couple of months. I still get pains my stomach is awful but on the whole I’d say it’s better. It’s one of those things though that each person could react differently, I always think try anything they say because if it works even a little then it’s some sort of relief. I was kind of sold the coil as a miracle and it’s certainly not that but it’s made periods a lot lighter and only lasts a day or two so that’s something positive!!

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I have had extreme leg and pelvic pains for around 10 months now. On a good day it feels like bad growing pains. Deep hot burning dragging pain. Sometimes feels like its in my knee. Most of time in my groin and upper thighs. From ovulation right through to after my period. Not been diagnosed yet waiting for lap in next 2 weeks x

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Sounds like mine, do you also get a similar but more deeper pain around your bum? I get this before and during my period x

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I have pain in my right thigh at the top for about 4 days before my period. The docter said its a symptom that goes with endometriosis. Get it when I'm ovulating too.

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Yeah I do too but I don't get it as bad when I'm ovulating it's worse just before and during my period

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Yes its the same for me. Docter at the hospital gave me the mini pill to help all the symptoms etc but i havnt started yet. That was about 4 months ago!!! X

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I've been on and off the pill for years and it never worked for me, same with all the other tablets I tried x

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That is very normal you can also have it with back pain and othet symptoms as long as you do not have any numbing in the legs then you shouldn't worry! Also during the pain try yoga it helps the muscles and can relax your body.see your gp if it get's any worse.

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I couldn't do yoga as even when I stretch in certain positions I get awful pulling pains

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Absolutely! The pain in my groin on both sides was so bad i struggled to drive my car cause it hurt every time i lifted my foot up to use the clutch😬I have a 5cm cyst on my right ovary which I’m currently under the consultant for and wondered if that had anything to do with it?

I feel your pain.😢

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I'm curious as to why it happens too, I've started keeping a pain diary for when I see the specialist and I'm actually shocked the amount of different types I've experienced just today alone. The joys of being due my period in 5 days aha x

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I get lots of different pains too! The pain used to be really severe in my back but now it’s all over the place, back, stomach, groin, legs. I feel like I need a full MOT most days😂xx

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Same here especially the week before and during my period it's a nightmare! xx

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I get shooting pains down my left leg from my groin into my knee and then during my period my thighs ache and throb deeply. My pelvic pain is mainly left sided and it can’t be coincidence that I get left leg pain too, I get a numbness on and off too, yet oddly nothing showed up in the MRI, I thought it might show some nerve damage. I’ve given up playing symptom or side effect with this bloody disease and try not be be too phased when something else pops up one day and never really goes away. I do hear a lot of us Endo ladies complain of leg pain, yet get fobbed off with the oh no that’s not related, gynae explanation. 🤦🏻‍♀️ X

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Have you had lap to diagnose endo? x

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Having one in May, been diagnosed by symptoms only at the moment x

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Feels like you're just constantly waiting around doesn't it x

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Always, one test after another with no clear answers. Fed up of being poked and prodded I’ve had 18 months of it now. Have you had a lap? X

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Is that 18 months since you saw the endo specialist? No I'm having my first specialist appointment in 2 weeks after complaining to my gp for years I decided to see a different doctor who actually listened to me and referred me to an endo specialist x

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Your right !! I get really bad pain shooting down my right leg most days and the gynaecologist told me exactly the same "oh that's not a symptom or anything to do with it" it's a joke , especially when you hear so many woman say they get this also who have endo !

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Exactly, surely it can't be a coincidence? So many people with the same symptom

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18 months since my gp suggested endometriosis, I waited 9 months to get my gynaecologist referral and whilst waiting for that I had scans, blood tests, internals, an endoscopy and a colonoscopy, various appointments with a gastroenterologist, it has been never ending, my Gp, gastroenterologist and gynaecologist have all said Endometriosis given my symptoms so now I am at the final stage of a lap. My gastroenterologist said to look at all the tests as a process of elimination and the more things we eliminate the more likely endometriosis becomes. He’s the best doctor I’ve seen throughout this whole process, given some have tried to fob me off, I wish he was my gynaecologist instead. Good luck with your process and feel free to ask me any questions. Here’s to potentially pain free days and answers ahead xx

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I also have a gastroenterologist as I have blood in my bowel movements (tmi sorry aha) and they thought it could be ulcerative colitis but that was ruled out. Fingers crossed for us both xx

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I pass menstual blood through my rectum whilst opening my bowels during my period 😩😩 this is what led them to definitely think endometriosis after my colonoscopy was clear. they wanted to do another colonoscopy whilst on my period but I refused as I found it quite painful and I get a lot of rectal pain on my period. My gastroenterologist said he’d expect to find endo cells inside my bowel whilst on my period so wasn’t too alarmed by my symptoms anyway Xx

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Oh I know how you feel they gave me two 6 months apart and they had to give me extra sedation as I couldn't cope it was excruciating. I get shooting pains and pressure in my bum when I try to go to the toilet on my period to the point it made me pass out, not nice is it xx

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Ahhhh I get that pressure feeling too. The shooting pains are the worst, stops you dead in your tracks. Ahh the joys of womanhood 😩 xx

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Do you also get stabbing pains in your vagina? It doesn't happen often but when it does it takes my breathe away xx

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Omg yes, It feels like someone is stabbing a sword or poker up there , I don’t get it often either thank goodness, last time I had it I was in tesco’s and it came out of nowhere, I stopped dead and had to grip my boyfriends arm and wait for it to pass xx

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Mine only lasts a few seconds but wow it hurts like hell doesn't it xx

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I think the cervix shooting pains and rectum shooting pains are probably the worst but easy to forget in the magnitude of symptoms as they only last a few seconds. It’s crazy we have identical symptoms. Nice to know we aren’t alone In this minefield xx

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My bum aches too like a deep burn before and during my period, like my actual cheeks to the point I rub my bum and look like a complete nutter 😂 I'm certainly glad I found this website doesn't make me feel like I must exaggerate my symptoms as I have so many aha xx

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It definitely is a process of elimination!!!I hope you can get some answers I am now going through the process again finding out have crohns ,endometriosis,fybromalgia,wasn't till all my lady bits taken out they figured next diagnosis.just got keep fighting till you get the right diagnosis .hugs x

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Ahhhh I’m sorry that’s a lot to deal with, I hope they are easing your pain and symptoms now they know what you have. They suspected celiac with me as my mum has it but have happily ruled it out now.

All the best for you Hun xx

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Thankyou hun good to hear that you don't have celiac disease must be hard for your mum to live with.yes endometriosis has done a lot off damage not been able to eat for 7 years oh the joy of these diseases they only figuring out now I have evacuatory dysfunction,anismus,slow transit from endometriosis from the fact our pelvc floor compensates by making out pelvic floor contract the wrong way only taken them 20 +years figure it out .and a stoma bag which didn' t work.

So if you lady's want me answer anything feel free to ask I don' want you all feeling like they can' figure what' wrong hugs to all x

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Hat off to you, what an incredibly strong lady you are xx

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No I just want try help others now so they don't get delayed on diagnosis xxx hugs to you

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That sounds like a nightmare hope they sort it out quickly for you x

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I have pain in my groin and thighs as well x

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Have you had a lap? x

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Yeah I had one last year in July which removed a moderate amount of endo x

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Did they explain why you get the pain in your legs? x

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There isn’t really an explanation for pain when it comes to endo.. endo causes pain and they don’t really know the big explanation to why others feel it in difffent places. I get horrendous leg pain and they just said yeah endo could hvd effected the nerves or it’s where you feel pain in your legs but the pain is actually elsewhere unfortunately one of those things but it makes sense in a way as hips, legs, stomach, pelvic etc are all connected with nerves and tissue.

I used to freak out with the leg pain and wasn’t sure if it was constipation or endo my nurse said it looked like both when they did the lap both causing issues

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I had my lap in june and was told my leg pain is caused by the endo on my ligaments

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I had non on my ligaments but leg pain was the first symptom I ever had. It’s scary because you can have a tiny bit of endo and be in agony and have loads and feel nothing the disease makes no sense

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No not really but they did say that it could be due to damaged nerves because of the endo. X

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Oh lovely aha x

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Sorry I have just read your above posts and I too have the coil I wonder if this could be connected? 🤔

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I don't have the coil hun x

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Oh sorry x

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