Endo pains always feels like it’s ‘in’ my... - Endometriosis UK

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Endo pains always feels like it’s ‘in’ my legs?!

Kate345 profile image
12 Replies

When I have a flare up it literally feels like it’s in my legs.. and my bowels get effected I get gasy and feel like I need to go.. even tho the endo has never grown near my bowels.

Only way I cab describe is a numb feeling in my legs

My endo was removed in April stage 4.

Had pain back and forth from the start of symptoms in June 17 till now after removal and always leg pain throughout

12 Replies
lizzyxx profile image

I get pain in my legs too but not constant, sometimes it feels worse than my pelvic pain x

Kate345 profile image
Kate345 in reply to lizzyxx

I feel the same I just went to the loo now 😂😂 and feel so much better as it’s not pressing on the nerves still feel

Horrendous and run down from the pain tho

Bee_22 profile image

I get awful pain down my legs, lower back and hips. I was diagnosed in 2015 and I had it on my bowel, so that probably explains it.

I was also told that I had adenomyosis, and because my womb’s enlarged because of it, it can have an affect on my bowels and pain etc, as well as sciatica. I went to the chiro about the sciatica and she gave me stretches etc, and it did help somewhat.

I’m sorry you’re going through this. The only thing I’ve found that helps at all is mefanamic acids and something warm, a hot water bottle or microwaveable pack. I hope you can get some relief soon x

Kate345 profile image
Kate345 in reply to Bee_22

They told me not on my bowel but all over my bladder but that I did have chronic constipation as well which would explain some more pain and the relief after going to the loo lol basically said with my chronic bladder infection endo and constipation it’s like a fire pit in there

Bee_22 profile image
Bee_22 in reply to Kate345

Oh my word, that does sound like a recipe for disaster! Have you found there are any ways to manage it?

I’ve had a really good 3 years (almost!) where the pain hasn’t bothered me so much, but for the last couple of months it’s been pretty constant. I’ve only found that heat helps. But with the heat we’ve had I just get unbearably hot instead...

Kate345 profile image
Kate345 in reply to Bee_22

Weirdly found that if I’m walking around it’s begtet than if I’m laying down? Strange I know. I’m trying between pain meds and antibiotics for my bladder and drinking enough water and eating right for everything but sometimes it’s hard

Bee_22 profile image
Bee_22 in reply to Kate345

Bless you, that sounds like a nightmare! If you ever need to speak to anyone, you can always message me whenever x

1Tia1A profile image

Hey Kate

I am so sorry that you are suffering with the leg pains as well as the endometriosis. 😔

I can identify as the endometriosis has me literally "tore up from the floor up" and I am like- totally serious. The pain in the back of my legs, swelling and heavy feeling make it difficult to walk and stand an average amount of time. Then when I finally stretch out on the bed, my legs and feet completely relax immediately. Usually my stomah is swollen as well. I also get swelling in my rectum.

I am not a doctor but, I started researching my own remedies because prescripton medicine did not help me. 100% pure castor oil reduces inflammation, increases circulation and also relaxes the muscles. I soak a small piece of gauze in the oil and insert a piece partially into my rectum and another piece partially into my vagina. I place a heating pad/ hot water bottle on my stomach and sleep like this at night. For some strange reason, I feel it working in my legs and by morning, the pain is either greatly reduced or completely gone. I have also started taking Magnesium and potassium because it works with the muscles and bones. Please check with your doctor first.

Last week, I read that laying on your back and raising your leg straight up for about 15 minutes reduces the pain. I tried it and it helps greatly. 😀

I'm still reading and trying to develop a routine that will keep me going. It's not easy. I have had endometriosis for almost 10 years. Many times I just wanted to give up because I was in so much pain. It even got to the point that I couldn't eat.. it affects the entire body and this is why you must aggressively seek the proper treatment and keep the determination. I pray that this helps my sister. 💕💖💕

Kate345 profile image
Kate345 in reply to 1Tia1A

I’ve only just had all the endo removed so on that front nothing can be done and I’m on antibiotics for my bladder iusxjust a case of trying to look after myself as much as possible I’m doing gluten free to try and help and try everything to keep my bowels regular but it’s not easy

Doggiedogmom1973 profile image

hey, you sound like me. I can get terribly sore legs (which feel like they're on 'fire' at there worst), and bowl probs. the gyne dr says i could possibly have endo deeply infiltrating into my uterosacral ligaments. I did some research, and sure enough, if endo is on these ligaments....it matched my pain of sore legs/bowl problems. Hope this helps.


Kate345 profile image
Kate345 in reply to Doggiedogmom1973

It’s so difficult to know what’s happening as the nurse said the constipation on its own might cause more pain than the endo she says when they looked inside it was pretty full and would cause pain. It’s like 3 things all in the pelvis causing issues

E-JSmith profile image

Hi there,

I haven't had my lap yet to determine endo, but I experience all the symptoms you're discussing.

I'll be keeping you in my prayers, I know it is so painful!

Might I suggest these stretches, they've helped me tremendously to alleviate pains in legs, hips and lower back healthline.com/health/back-...

Also, may I suggest (if you're not already doing so), MagPhos tissue salt tablets (your local natural store should have them) - if you're allergic to lactose there are a ton of herbs you can use to help balance hormones and help to reduce inflammation. I've been using them and they've helped in extending the length between my periods (used to have them every 14 days and now thank God the longest break I've received is 20 days apart!).

If you're interested please feel free to message me : )

Blessings to you!


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