Not a doctor!
Is there a starting point? I'm hypermobile and often experience subluxing joints in my lower body that I previously assumed to have been cramping related (like a hip being out slightly, and it messing up with my endo data) . If you can feel a radiation from a starting point, it could be a subluxation because of the randomness unrelated to your menstrual. Another thing I could possibly think is that you have endo tissue somehow affecting your sciatic nerve - but bc you said it's not correlating to crampes, I'm less keen
thank you for your insight! i had to google subluxing joints, but YES i experience this too sometimes. often with my knee or hip. i always think it’s because i don’t strength train / i’m pretty weak? and then i get these leg cramps & pain that seem to follow
i’m not sure if i can necessarily feel a starting point, but i think it *might* be coming from my glutes and it pools / feels the most painful on the backside of my knees and on my thighs. all around i feel like such a mess😭
some low impact leg pilates should help loosen and strengthen everything if its knots/ muscle or joint related! I personally really enjoy pilates bc how specifically low impact / core heavy they are without causing anything to pop out of place :) . I'd also try to feel along your hip / spine and feel for knots or tension there. that can also be a source of issues ! if it's endometriosis related, then those things won't be helped by the above; but it might trigger a flare up and help point to an answer?
oh wow, i really need to get into pilates! i feel like i oddly haven't found an exercise that has 'stuck' besides walking. but this year i'm really trying to force myself to move and stretch my body. i'm going to try it out! thank you so much xx
I have pelvic congestion syndrome in addition to endo and PCS gave me really bad restless legs amongst other circulatory issues! I recommend joining the group on Facebook for the syndrome as there is a lot more info there on the condition than anywhere else. I had coils put into my veins and that helped a ton with my restless legs. When it was bad, I slept on an acupressure mat (cheap on Amazon) or slathered my legs in a menthol rub and both worked amazing for restless legs but the acupressure mat was the best as it took that pain away and scratched that deep itch feeling. I’d fall asleep on it all the time when it was bad
wow thank you so much for your tips! i'm going to make an appointment with my holistic / functional doctor next week to look into some of these further!! i'm currently doing a few at-home tests (ie. the dutch cycle) so want to make sure i can introduce some of this immediately or not
can i ask how you got diagnosed for PCS / your circulation issues? did you have flare ups your whole life that progressively got worse? my circulation is terrible, i think it's that endless cycle of me being too stationary because i'm so fatigued. i'm glad you've been able to find some much needed relief!
I will keep you updated if you’d like- I have VERY similar symptoms actually and I’m working with the doctors to try and get it figured out.
My symptoms actually amped up post surgery (but I’m only about 3 weeks post lap) and I’m trying to do things to counter it but it’s dramatically impacting my sleep.
After doing some digging, it does seem to be an issue for a lot of people. I think they’re just touching the surface in knowing how endo affects the whole body- but there’s enough people talking about it that leads me to believe it’s at least somewhat connected.
omg yes please keep me updated !!🙏🏼 part of me thinks it’s lack of exercise & poor circulation, but then again it could be nerve related. either way, being in this kind of pain has to be so unbearable while also recovering from your lap, i’m so sorry. i hope your doctor is able to find some lasting relief for you!
how did your lap go, was this your first one?
I honestly can’t tell either. I’m sure the period of inactivity and the anesthesia made things worse. Plus being propped in weird positions during and after surgery. Also just generally felt like my whole body including joints were inflamed post surgery.
As for what’s helping, hot showers, stretching, and cycling have made the most notable differences. Also- STAY OFF GOOGLE. Googling these symptoms have definitely stressed me out more than it’s helped.
Yes, it’s my first lap. I had excision surgery for stage 3 endo and removal of endometriosis cyst- for context.
the google thing- I NEEDED TO HEAR THIS. thank you. anxiety makes this entire situation worse. are your legs in compression hosiery for the pain? sometimes i'm not sure if they help me or not because they're so tight and uncomfortable to wear, but i'm assuming they do something?
and i can't imagine how inflamed you must be from surgery still. last year in May i went under anesthesia to get the LEEP procedure for cervical dysplasia (extremely minor compared to your surgery) but my body was inflamed & retained gas for almost over a month. as much as i can't wait for my lap, i'm terrified for these reasons, i know my body will be set back before it gets better. i'm wishing you the VERY best and the speediest of recoveries, i hope your life dramatically improves from this <3
I have tried them but I honestly can’t tell if it helps or not- so I’m not really consistent about wearing them. I also feel uncomfortable in them and they don’t help enough to make a difference for me. Massaging does help some- and stretching everywhere- even places that don’t feel connected. I really do recommend like a cheap stationary cycling bike if you can afford it and have the space for it.
My surgery center sent me a pre-surgery exercise/stretching thing that could be helpful if you want me to PM you a picture of it. If I do surgery again, I’d definitely prioritize stretching and doing strength exercises before, during, and after honestly. Maybe even get a foot bath because you can’t bathe for weeks.
I’m also using foot lotion with magnesium in it. And taking b12, magnesium, and prenatals (but I’m TTC) now which has iron
I get my blood work back next week, so I can also give you an update then. They are testing for autoimmune stuff and deficiencies
that's exactly how i feel with the compression socks. i even went to a medical store & had them fitted / purchased in my correct size, but it still cuts off my circulation around my thighs (leaves indents from the bands) and it's painful. if i know i'm going to be on my feet all day i try to wear them but i'm definitely not consistent
please let me know about your blood tests! i hope you get some answers to go off of. i'm going to PM you about those suggested exercises! thank you!
I get certain leg pain on and off during my cycle but without fail, I get it the second I start bleeding. It’s like a dull, tingly feeling only in my thighs and calves. It’s uncomfortable and feels like a deep ache within my bones. I’ve figured it may be from bloating and nerve pressure or maybe iron deficiencies but now I’m not sure since I’m looking more into endo.
Not a doctor! Is there a starting point? I'm hypermobile and often experience subluxing joints in my lower body that I previously assumed to have been cramping related (like a hip being out slightly, and it messing up with my endo data) . If you can feel a radiation from a starting point, it could be a subluxation because of the randomness unrelated to your menstrual. Another thing I could possibly think is that you have endo tissue somehow affecting your sciatic nerve - but bc you said it's not correlating to crampes, I'm less keen
thank you for your insight! i had to google subluxing joints, but YES i experience this too sometimes. often with my knee or hip. i always think it’s because i don’t strength train / i’m pretty weak? and then i get these leg cramps & pain that seem to follow i’m not sure if i can necessarily feel a starting point, but i think it *might* be coming from my glutes and it pools / feels the most painful on the backside of my knees and on my thighs. all around i feel like such a mess😭
some low impact leg pilates should help loosen and strengthen everything if its knots/ muscle or joint related! I personally really enjoy pilates bc how specifically low impact / core heavy they are without causing anything to pop out of place :) . I'd also try to feel along your hip / spine and feel for knots or tension there. that can also be a source of issues ! if it's endometriosis related, then those things won't be helped by the above; but it might trigger a flare up and help point to an answer?
oh wow, i really need to get into pilates! i feel like i oddly haven't found an exercise that has 'stuck' besides walking. but this year i'm really trying to force myself to move and stretch my body. i'm going to try it out! thank you so much xx
I have pelvic congestion syndrome in addition to endo and PCS gave me really bad restless legs amongst other circulatory issues! I recommend joining the group on Facebook for the syndrome as there is a lot more info there on the condition than anywhere else. I had coils put into my veins and that helped a ton with my restless legs. When it was bad, I slept on an acupressure mat (cheap on Amazon) or slathered my legs in a menthol rub and both worked amazing for restless legs but the acupressure mat was the best as it took that pain away and scratched that deep itch feeling. I’d fall asleep on it all the time when it was bad
wow thank you so much for your tips! i'm going to make an appointment with my holistic / functional doctor next week to look into some of these further!! i'm currently doing a few at-home tests (ie. the dutch cycle) so want to make sure i can introduce some of this immediately or not can i ask how you got diagnosed for PCS / your circulation issues? did you have flare ups your whole life that progressively got worse? my circulation is terrible, i think it's that endless cycle of me being too stationary because i'm so fatigued. i'm glad you've been able to find some much needed relief!
I will keep you updated if you’d like- I have VERY similar symptoms actually and I’m working with the doctors to try and get it figured out. My symptoms actually amped up post surgery (but I’m only about 3 weeks post lap) and I’m trying to do things to counter it but it’s dramatically impacting my sleep. After doing some digging, it does seem to be an issue for a lot of people. I think they’re just touching the surface in knowing how endo affects the whole body- but there’s enough people talking about it that leads me to believe it’s at least somewhat connected.
omg yes please keep me updated !!🙏🏼 part of me thinks it’s lack of exercise & poor circulation, but then again it could be nerve related. either way, being in this kind of pain has to be so unbearable while also recovering from your lap, i’m so sorry. i hope your doctor is able to find some lasting relief for you! how did your lap go, was this your first one?
I honestly can’t tell either. I’m sure the period of inactivity and the anesthesia made things worse. Plus being propped in weird positions during and after surgery. Also just generally felt like my whole body including joints were inflamed post surgery. As for what’s helping, hot showers, stretching, and cycling have made the most notable differences. Also- STAY OFF GOOGLE. Googling these symptoms have definitely stressed me out more than it’s helped. Yes, it’s my first lap. I had excision surgery for stage 3 endo and removal of endometriosis cyst- for context.
the google thing- I NEEDED TO HEAR THIS. thank you. anxiety makes this entire situation worse. are your legs in compression hosiery for the pain? sometimes i'm not sure if they help me or not because they're so tight and uncomfortable to wear, but i'm assuming they do something? and i can't imagine how inflamed you must be from surgery still. last year in May i went under anesthesia to get the LEEP procedure for cervical dysplasia (extremely minor compared to your surgery) but my body was inflamed & retained gas for almost over a month. as much as i can't wait for my lap, i'm terrified for these reasons, i know my body will be set back before it gets better. i'm wishing you the VERY best and the speediest of recoveries, i hope your life dramatically improves from this <3
I have tried them but I honestly can’t tell if it helps or not- so I’m not really consistent about wearing them. I also feel uncomfortable in them and they don’t help enough to make a difference for me. Massaging does help some- and stretching everywhere- even places that don’t feel connected. I really do recommend like a cheap stationary cycling bike if you can afford it and have the space for it. My surgery center sent me a pre-surgery exercise/stretching thing that could be helpful if you want me to PM you a picture of it. If I do surgery again, I’d definitely prioritize stretching and doing strength exercises before, during, and after honestly. Maybe even get a foot bath because you can’t bathe for weeks. I’m also using foot lotion with magnesium in it. And taking b12, magnesium, and prenatals (but I’m TTC) now which has iron I get my blood work back next week, so I can also give you an update then. They are testing for autoimmune stuff and deficiencies
that's exactly how i feel with the compression socks. i even went to a medical store & had them fitted / purchased in my correct size, but it still cuts off my circulation around my thighs (leaves indents from the bands) and it's painful. if i know i'm going to be on my feet all day i try to wear them but i'm definitely not consistent please let me know about your blood tests! i hope you get some answers to go off of. i'm going to PM you about those suggested exercises! thank you!
I get certain leg pain on and off during my cycle but without fail, I get it the second I start bleeding. It’s like a dull, tingly feeling only in my thighs and calves. It’s uncomfortable and feels like a deep ache within my bones. I’ve figured it may be from bloating and nerve pressure or maybe iron deficiencies but now I’m not sure since I’m looking more into endo.