Leg pain : My first time posting here... - Endometriosis UK

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Leg pain

princesszelda profile image
11 Replies

My first time posting here, lovely to find somewhere for support! I have recently been diagnosed with endo (August 2019) after a laparoscopy and also had ablation. I had severe right leg pain and right abdominal pain presurgery, but immediately afterwards it seemed to get a lot better. The surgeon told me after that the leg pain couldn't be related to the endo, even though it was the same side as majority of my pain and was the top of my thigh. It was so bad I struggled to walk. Over the last few weeks, the pain has started again. It isn't as bad as before surgery, but it's definitely getting worse along with the right abdo pain. Just want to know if anyone else has leg pain that is due to endo, or leg pain and told it couldn't be endo? I don't know how to manage it and it's keeping me up at night, and I'm struggling at work again. Any advice or similar experiences would be helpful

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princesszelda profile image
princesszelda
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11 Replies
princesszelda profile image
princesszelda

Well, I only got told where it was right after the surgery by the surgeon, and I was still very sleepy and out of it from the anaesthetic. I got told it was stage 2, but other than the discharge note just says endometriosis found and ablated. My surgical follow up isn't until January :(

Charts profile image
Charts in reply to princesszelda

I had a laparoscopy 2 weeks ago and I got pain in my palms, sole's of feet, and legs. My left leg keeps giving way as well. I was also wondering if it could be related to endo as well.

Pinkprincess22 profile image
Pinkprincess22

Not sure if this will be of any help but I had a lap 4 weeks ago to remove endo and an extra large fibroid and I was getting pain in my right leg and found it painful to lift it or get into the car.

When I told my consultant about it on my 3 check up he said that there are muscles that are linked to the hip and pelvis where my endo was (right hand side) and that it was due to what they had done as they are linked.

X

Dragonfly03 profile image
Dragonfly03

Hi

Iam very very new to all this after a hard journey to even get this far. But I too suffered with terrible left leg pains going into thigh, groin & shooting down my leg as well as left sided pain. 2 weeks ago tomorrow I had surgery to remove a large endometrioma, my left ovary & Fallopian tube. She also told me it’s on my bowel & stomach 😢 The left leg pain was there post op disappeared but has come back already. I contacted surgeon saying I was still in pain & having these leg pains & she is booking me a ultrasound scan next week.

StefaniaJW profile image
StefaniaJW

You need another surgery, this time get it done right and not superficially as the first one.

You need to get advanced excision surgery with a highly skilled and very experienced endometriosis excision surgeon. Ablation will get you nowhere and will not help much with endometriosis. Only trust advanced excision surgeons. [This post has been edited in line with Endometriosis UK's code of conduct].

princesszelda profile image
princesszelda in reply to StefaniaJW

They won't refer me to a BSGE because I apparently don't fit the criteria so I'm a bit stuck :( defo cannot afford private!

StefaniaJW profile image
StefaniaJW in reply to princesszelda

You need to tell your GP you need specialised help and persuade them to refer you to the surgeon you pick (preferably a highly skilled and experienced endometriosis excision surgeon). This is the best possible option out there for endometriosis.

Tracylou1304 profile image
Tracylou1304 in reply to StefaniaJW

Could you give me some names please

StefaniaJW profile image
StefaniaJW in reply to Tracylou1304

This post was removed in line with Endometriosis UK's code of conduct

BrightLights88 profile image
BrightLights88

Hi I too suffer from left thigh pain and was mild before the lap but now a lot worse. My surgeon and physician said it is sciatica nerve pain as the pain is also caused on my lower back and bowel area. He had referred me for a MRI to see which nerve.

I had my 3 months follow up last week and was given the all clear for endo. I had stage 4, and not had any flare up or endo pain since lap. My surgery was done by bsge centre surgeon which I referred myself through my gp. I found it easy to see a male doctor who was more undrdtsnfong with the pain I was going through to refer me to the hospital of my choice.

BarbieGirl123 profile image
BarbieGirl123

I definitely suffer with Leg pain from my endo to the point it makes me feel sick and cry.

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