Agonising leg pain, AGAIN..: So yet again I... - Endometriosis UK

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Agonising leg pain, AGAIN..

lizzyxx profile image
11 Replies

So yet again I can't sleep due to leg pain, I'm exhausted all day long but when I get into bed it's always some kind of pain keeping me awake. Feels like my left leg is burning, like a deep ache. Anyone have any ideas what could ease leg pain? Also I am curious as to why I get it as I don't have a clue! Thanks ladies x

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lizzyxx profile image
lizzyxx
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11 Replies
Netti451 profile image
Netti451

This is the pain i have had and they just found endo on ligaments behind my womb. Affects sciatic nerves and creates those pains. My legs also twitch a lot and occassionally get sudden sharpe shooting pains. Sometimes i get same pains in arms and hands. Had endo removed on tuesday but had same pains last night. Heard pains can stick around for a while sometimes.

lizzyxx profile image
lizzyxx in reply to Netti451

Thanks for your reply, I don't get pains in my arms but I do in my right shoulder just before and during my period. I haven't been diagnosed with endo though, I have my first appointment on thursday x

Netti451 profile image
Netti451 in reply to lizzyxx

Make sure you take a pain diary with you x

lizzyxx profile image
lizzyxx in reply to Netti451

I only started one 2 weeks ago when I was referred but I will be taking it with me, I suppose 3 weeks is better than nothing x

Netti451 profile image
Netti451 in reply to lizzyxx

In that case write a script of what you would tell someone meeting them for first time if you were to describe your pain. Also you can access pain descriptors from 1-10 on google which is good to helo you articulate pain. I used to get anxious,overwhelmed and tongue tied, a lot of drs have a terrible bedside manner and before you know it everything goes out of your head. I learned the hard way its best to prepare. I once had a dr only a few weeks ago shake his head as i was describing my pain and told me he had never heard of those symptoms with endo. Made me feel crazy. A month later i had official diagnosis via laparoscopy from different dr. Advocate for yourself- you know your body and you know if something isnt right.

Know what day of your cyle you are on. The type of bleeding you have. How long they last on average. Be able to describe your pain,when it happens, patterns and triggers and how much medication you have to take.

Annimay43 profile image
Annimay43

Hi have u ever been tested for or been told u cld have restless leg syndrome? Ive had it for years mainly bottom parts of legs. Some nights they on fire and pain uncomfy and cant sleep x

lizzyxx profile image
lizzyxx in reply to Annimay43

I only get the pain just before, during and just after my period. There's about 10 days in my cycle where I don't get that much pain in my legs, just a few twinges x

Annimay43 profile image
Annimay43 in reply to lizzyxx

Have u spoke to Dr about it? I no my RLS becomes worse when bout to take period. Im actually on now today and pains in legs bad. Wondering is it part of Endo as im still waiting for proper diagnoises from Gyane x

lizzyxx profile image
lizzyxx in reply to Annimay43

I have seen a few ladies with confirmed endo say they also get pains in their legs so it's possible x

Annimay43 profile image
Annimay43 in reply to lizzyxx

Ive just started to get leg pains at top of thighs to and pelvis pain. Just wish they wld tell me. X

Kristinalouise profile image
Kristinalouise

I get leg pain I think it is because I have a cyst that rests on a nerve, Ive had some removed which alleviated a lot but i think has grown back - I am seeing my consultant again in a week hoping for another lap to remove kx

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