Pain in legs with endo: Does anyone else... - Endometriosis UK

Endometriosis UK

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Pain in legs with endo

Catlife123
Catlife123

Does anyone else suffer from pain in legs with endo? Almost like numbness/pins and needles at the same time as a throbbing pain? I had a lap 3 weeks ago so not sure why this is still happening

10 Replies
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Be gentle and kind to yourself. You only had surgery 3 weeks ago. It can take months (6-9) for the inflammation on the inside to come down. Just because your incisions are healed doesn’t mean your insides are. Depending on how advanced your disease was will also impact this. I had pretty severe neuropathy (from Endo and concussion). The neuropathy got a ton better after my surgery. Probably took a good 6-8 weeks to notice any difference (but I also have 17 chronic conditions).

Was your surgery performed by general gyn or an Endo specific specialist? Did they do ablation or excision? A lot of general gyn don’t have any idea on how to properly treat and remove this disease. If they used ablation they basically just take the leaves off the weed and leave the roots so it just grows back super quickly. Excision they actually remove the whole implant and it’s generally done by burning (using special ultrasound waves).

Don’t over do it right now. Take it as easy as you can and rest as much as you can. All going well you should start to feel some relief soon.

Hi, thank you for your reply. It was performed by an endo specialist and I had excision of endo from ovaries and womb. I think I keep comparing to my last lap which was ablation, I felt better after a week. This time round is so much worse. I was starting to feel better last week now I’ve gone back over, I could have been doing too much? Thank you x

One thing we totally forget is they also have to cut through a lot of layers of muscle to get into where they need and then they also excised a lot of areas. With the ablation it was likely easier because they just removed the top of the implant. But this time they removed all of it which was likely much deeper.

My biggest advice to anyone is to always listen to your body. It will tell you when you’ve over done it. Do like 50% of what you normally do for a week and see if you feel a bit better. 💕

Thank you 😘 x

Sorry to jump on your feed. I'm new to this group and looking for advice...I've had pain numbness down my legs getting worse for the last few years and doctors can't seem to figure out why. Was that a symptom of your endo? Hope you feel better soon x x

Catlife123
Catlife123 in reply to mee454

Hi, yes I always get pain and numbness, sometimes it feels like pins and needles other times it’s actually painful like a throbbing sensation, it can also go into your back. It’s usually worse around the time of ovulation and your period. But it can also be caused by other things such as poor circulation. Do you have any other symptoms? Thank you x

mee454
mee454 in reply to Catlife123

Thanks so much for replying! After my son was born 3.5 years ago when my period came back it wouldn't stop. I bled for 7Months. I was taking the mini pill and had to get the coil to stop the bleeding. I just woke up one night i-with pain in my right hip...a few weeks before period came back after having my son. The pain has changed from pain like a cramp to really searing pain like my skin is burning. To numbness and tingling. Went from my right hip down my leg and is now in both on legs and lower back.

Noodle1984
Noodle1984 in reply to mee454

You may want to also get checked for adenomyosis. It’s endos evil twin sister. It grows in the uterus muscle lining causing a bulky uterus and you to bleed super heavy. The only cure for it is a hysterectomy. But a hysterectomy is not a cure for Endo.

I have bad neuropathy from a car accident (severe concussion) and I didn’t realize the Endo was also playing such a large part. After my surgery in February about half my neuropathy disappeared.

I have a small list of things that I suggest to all new members who are struggling. I can share it if you’re interested. 💕

mee454
mee454 in reply to Noodle1984

I'm still having all sorts of investigations I feels like I've had every test! My periods weren't heavy just lasting a long time...thanks So much for your input really appreciate it!

Hidden
Hidden

Not just you at all - my endo/bleed pain always radiates down my legs. As others have said, it takes a lot longer to fully heal than they indicate

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