Oh my god, iam here crying my eyes out. I can't express how much this video means to me. As I feel so alone and no one understands that my leg pain is sciatica connected to endo. 😢 Doctors just think i have pulled a muscle or sprained my leg, and it will wear off. 😢😢😢😢 I know my own body and know its not this. Thank you for making me feel understood and not alone.
You are so not alone. My 65 year old male GP was clear: endo cannot flare out towards your legs! I was so angry and felt so alone in my pain. I know my body, I know what endo does to me. I'm so tired because of the constant pain. Why do I also have to convince a medical professional that it's not just in my head. I also try hot packs and sometimes it gives relief. I feel somewhat less alone after watching this video.
Yes!! You should see my reply above!! The man I see is 1 of ppl in our country & keeps saying "well that's extremely rare".... wtf doesn't mean I don't have it!!
I had been complaining about leg pain during my period (after diagnosis & surgeries) for about 5 years-and was repeatedly told it was transferred pain, all in my head and nothing to worry about. Then, during my last surgery the Surgeon informed me that I have lesions which have grown around the nerves and arteries leading to my left leg. It is so ingrown it has attached itself directly through both nerve and arteries, my left ovary, my bowel wall, my perennial cavity wall, and through to even being stuck to my bone. He removed what he could elsewhere but due to the risks associated with working so closely with my arteries and nerves they had to leave it in. I now live with loss of sensation, pins and needles, and it affects my ability to walk on the leg properly... So yes, it's a thing! Don't let them tell you your crazy- hopefully others will catch this before it affects their ability to walk like me-as if I was listened to years ago maybe it would have been treatable..
I’m so sorry you didn’t get the care you needed. Thank you for sharing, you’ve encouraged me to advocate for myself more. After years of explaining my pain to drs finally a nurse practitioner suggested it might be endo and watching these videos I’m crying listening to symptoms and furious it took so long to get here!
Repeated episodes of sciatica led me to find out I have endometriosis when I finally figured that they always coincided with my periods. The pain is unbearable, I can't stand up, can't walk straight, can't sit, can't find a proper position to sleep, can't even sneeze without suffering an absurd amount of pain, like being hit by a thunder, you can literally feel the electricity going through your spine and leg through the sciatic nerve, it gets so bad sometimes that I can't even feel my toes... OTC medicine don't work, antiinflammatory creams barely do something... I'd rather give birth without anaesthesia every six months than have these long flare ups, it'd be less painful. 😓
@@endoemmm thank you! It got a lot better after I cut gluten, sugar and dairy out of my diet, birth control pills are very helpful as well, I hope you have found what works for you too, sciatica is no picnic.
This is how I feel too 😢 how did you get diagnosed? I’m struggling to find a doctor who believes this pain and struggle is not normal. Currently in excruciating pain and I medicine is helping to subside it. Got an another 8:07 appointment for 2 weeks later but argh. I just want to find the right doctor who can help me confirm. I’ve done all the tracking and I just know it has to be this. It makes no sense that all my blood work and ultrasound comes out perfect and they tell me I shouldn’t have pain - but I DO AND IT IS NOT FUN TO KEEP GOING BACK AND BEING TOLD PAIN IS NORMAL.
I have endometriosis and PCOS, i also have a full 8 day heavy and very painful period, ive had my period since i was 11 (Im 20) and since i started menstruation ive always had excruciating cramps, back pain, leg pain, migraines, extreme fatigue etc , i was only diagnosed at 16 though with both health conditions, its horrible and i pray for all women like me out there that eventually a cure is made for this horrible disease
holy cow, everything you’ve just talked about is everything i’m also going through. having endometriosis and pcos on top of everything you mentioned is such an exhausting feeling. it feels good to know someone else understands the feeling. i’m wishing you all the luck in your journey
Omg she just helped me to find out what’s actually happening to my body 😢 all of these doctors keep misdiagnosing me! Thank you so much for this information
I've had crazy leg pain during my periods. Upper / inner thigh pain. Yep, interesting that I came across this video. I would also get a intense pulling and period cramping in my legs.
Same here, especially my right leg, it almost feels like my nerves r being electrified down to my toes, I've started treatment for endo by getting the shot, but idk it still hurts just as much. It's funny especially since it's the early stages, anyway hopefully it gets better soon 😁
Just wondering if anyone here is interested in starting a support group? Just thinking maybe we can meet through Zoom periodically and share our experiences. Many people cannot relate to the symptoms and pain we go through because it does not always show up on the outside. I have never run a support group, but I do have a lot of experience with endometriosis and am still struggling with this issue. Reply to this message and well figure it out!
I've been having this symptom for some time now. I started heavily exercising for a few years. Besides feeling pain in my legs from my pelvic region down to my ankles and toes feel heavy like sandbags. Thank you for the video. I knew it wasn't normal to be extremely fatigued and have excessive brain fog and insomnia during my PMS. 😢.
I experience endo symptoms 24/7. For me the leg pain started after my first lap. in 2017. Currently in bed with heating pads, taking meds to try and get the pain under control. Best way I can describe it, is bone pain, from my hip area/top of buttocks that goes all the way down to my ankle. Sometimes in both legs, but on average, usually worse in my left leg. I know it's really bad when it causes me to limp around my house, affects my sleep, and a single flight of stairs might as well be Mt. Everest. And the pain often causes emotional distress, which in turn, increases the pain. Ugh, I'm so over it.
This is exactly what I’m going through and severely. I have endometriosis adenomyosis and fibroids. My stomach looks like I’m 6 months pregnant too and now on a waiting list to been see by a specialist gynaecologist. I’ve already been suffering with endometriosis 18 year with one operation, but time round I’m totally much more of a severe pain physically mentally and emotionally 😓
I have a severe case of endometriosis. I've dealt with this since the late 80's. As a kid going through this is scary. I never got it fixed til my late 30's, I am in my late 40's now and it's still a causing pain in my ssa
OMGGGGG!!!! I’m an endo-conquerer as well! This video just single-handedly answered so many questions for me! I’ve been treating myself for sciatica for about 2 years (stretching is a healer). This entire time my endo has been the main contributing factor! Wow! Thanks!
Thank you for posting this! For 6 months I've been trying to find women that talk about leg pain and endometriosis because it's my newest symptom that got bad really fast, shooting into my feet. It's chronic now and never goes away, just varies in degrees and locations of pain. Most women talk about the painful periods, but not many talk about the leg pain or even chronic pelvic pain that never goes away. Do you also have bad lower back pain? And where did they find your endo, if you don't mind me asking?
So sorry to hear that it's a symptom for you too, Abbey! It can be really challenging at times when it comes out of nowhere. I have had bad lower back pain during endo flare-ups. I find that a heating pack or even a small thumb massage can help reduce some tension in the back! Do you try something different - always open to hear how others deal with their endo pain :)
Magnesium has been a big help for me. My husband gives it to me every night religiously and it does help with the leg pain and pressure I get at night.
Thank you for your video. It is very helpful to find others who are experiencing the same pain. I am 53 and have been dealing with endo since I was a teenager. I can say the only period in my life where I did not suffer badly was while I was having children. In my late thirties, the extreme symptoms returned, and two weeks out of the month and I suffered terribly. Now that I am going through peri-menopause the pain is worse and I am sitting here crying because of the pain in my hip, buttock, and nerve. And......for years I have been through a bunch of doctors that don't know what I am talking about and the solution is just to put me on birth control which I always stop because it makes the symptoms even worse. You get to a point where you give up on doctors and just do what you can to cope. Endometriosis is an ailment that can make you crazy so it is sad but comforting to know that there are others that know exactly what I am feeling.
So so hard, but know that you’re not alone in the journey. It can be really hard and challenging at times - but your voice and advocacy for change will make the world a better place for those after us coming up the ladder with endometriosis ❤️
Gosh. This is my story word for word. At least I’m not alone. The pain is insane. I wish I could have had 10 babies to stop the pain in my child bearing years…..
Thanks for connecting the dots between sciatica and endometriosis. I did some sciatica stretches and it helped a bit. I also got a sciatica chair cushion and it helps too. Hoping everyone finds relief and things that help manage this.
So do I. I have to be sedentary and use a power wheelchair in order to keep the pain at a manageable level, but it accumulates the more I move about. It feels like my leg is being wrenched off my body like a turkey leg at Thanksgiving. Hurts to my right knee & up under my right shoulder blade. It's horrific. I have to use oxycodone when it flares just to keep from writhing and hollering in pain.
I have neuropathy (damaged nerves)… all of a sudden about a year now my neuropathy pain is unbearable when I’m menstrual. Google brought me here. So for the pain- laying on my stomach helps (sometimes with a pillow under my pelvis) Stretching out my legs… occasionally kicking… crossing my feet and stretching. Also the less meat I eat, the less pain I’m in. Will go vegan 🌱 Thank you for this video 🙏🏿❤️
I am positive that I have sciatic pain associated with my endometriosis, the pain is always there on the first day of my period. It helps me to stretch, in a sitting position have your ankle on your knee. Also taking fish oil reduces inflammation, I would have some every day in general, but especially around when you start your cycle. I think its also triggered by ovulation. If you have heavy periods and brain fog cause by endo I would look into taking an iron supplement and drinking raspberry leaf tea.
Discovering the link between leg pain and endometriosis is what finally pushed me to get an appt with an endo specialist. I have my appt tomorrow afternoon. I am nervous but hopeful to start getting some answers and next steps. 🙏🏼
This video is quite helpful! I recently started having heavier and longer periods, with leg pain. Turns out I have Adenomyosis. I was quite educated about endometriosis, but had never heard of Adenomyosis. Its a cousin of Endometriosis and has similar symptoms. Hoping to get it under control before its too bad. Sending you love from India
Thank you so much ❤️ for this video. You have just confirmed that I am not crazy.. I'm literally typing this in bed, leg pain and abdominal pain. 😢 Sending you love from south africa 🌍
Thank you so much for this video. As now I know I am not alone. Excruciating pain, heavy bleeding feels like I am in a blood pool. And there it was the doctor telling me not to over exaggerate... Got diagnosed last month. I know how it feels..
My dr thinks I have this and this could definitely explain my leg pains I complain about often and never knew why I had it. Mine is more than just on my periods though but worse while on it.
Thank you so much for sharing this. After 6.5 years of this exact pain, stage 4 endo, a lap & 2 excisions I still have this very pain all the time. It’s frankly devastating as I can’t walk properly . My initial flare was so similar to what you described, thank you for making me feel less alone. My endo surgeon has been amazing but I think that there is still some impacting the nerves. Does sciatic endo pain mean a possible spinal op? Sending love & thanks for the massage tips 🙏❤️
Its such a painful exhausting desease...really takes over life as gets worse,feels like such little support ,where I live it's now a 3year wait to see a endometriosis specialist, feels like it's really not recognised as a series condition and with it effecting fertility possible for so many which is believed to be so important ,how has this disease gone om so long with so little spoke about ir
Agreed - I feel like there should be more awareness around endometriosis (as well as resources and funding to support those living with the disease). Know that you're not alone in your experience :)
So glad you made a video about that... you're right it's definitely hardly ever discussed ... I have it almost daily now and sleeping is so difficult 😢 not just during flare ups unfortunately. Hoping surgery will help alleviate some of it 🙏 ❤ thank you for the tips
I have this exact pains during my periods. I use a heating pad on my pelvis and I put medicated pain relief patches from the drug store on the part of my legs that hurt the most. I wrap my thighs sometimes with heat pads from CVS if needed. I also decrease my caffeine no coffee sadly those few days I have bad cramps. I drink carrot juice mostly and green juice and water to stay hydrated. I lay in bed and just sometimes put pillows around me to help stay comfortable. Hope this helps someone.
I had pain in the leg top though when I was delivering my kids and when I had surgery taking my uterus out I had the same place. I have had endometriosis for over 30 years.
I experienced excuciating upper/inner thigh pain starting 17 years ago. So bad it drops me to my knees. I also had and continue to have bleeding and spotting almost every single day. I was in the military when it first happened. They thought I had a hernia. That was negative. I did PT for an "inflamed tendon". Did nothing. Put me on Motrin, did nothing. Then flexeril. Nothing. Then injections into the crease where your upper thigh meets your groin. That did nothing. Finally, they decided it had to be my tendon, being too short, and the only thing to do was an iliopsoas tendon release surgery. Which means no more functioning tendon in my upper thigh. Pain never left. I am physically maimed from that surgery. My hips will never sit evenly, I have a huge ugly scar, and limited mobility now and it was 100% uneccesary! Now I am almost positive that pain is from endometriosis, which after years and years and years of complaining about, was finally diagnosed. I am in constant pain, every day. And not one doctor seems to care.
I get terrible leg pain starting from my groin to my knees and in my glutes. I sleep with a heat pack and a memory form leg pillow, the pain of my legs touching is excruciating. My pain has certainly become worse as I’ve gotten older.
So sorry to hear that you get terrible leg pain as well. Sleeping with a heat pack sounds heavenly. I always have a pillow propped in between my knees while I sleep to reduce pressure on my lower back - which sometimes helps! Thinking of you as you find pain management methods that work for you and your body.
Have you been operated before for endometriosis? I had a consultation with possover/neuropelvioloog last year and he said sciatic nerve is progressive and has to get operated on. I have neuropathy literally every second of the day, in left leg (horrible sharp pain left foot, burning feeling in calf, rightness, pain backside leg, sometimes numbness) do you have also these complications?
I had bilateral thigh pain on my period for years when i was younger!! Still have debilitating pain and all of the other symptoms almost for 20 years and all the doctors I've seen dismissed me by saying it was normal and i had just bad lack getting very painful periods.. finally i got diagnosed with endo a couple of months ego and waiting for my surgery because they found a hemorrhagic cyst(i think its called, English is not my native language) and i qm afraid for what they are going to find in my stomach after all those years of untreated endo...
My right hip and leg has horrible shooting pain every time I have my period.😞 It will last 3-7 days. So I’m stuck in bed with my heating pad. When it gets even worse my husband will have to put me in a hot bath. Sometimes I will also put ice packs on my lower back and butt/hip
So sorry to hear that you have similar leg pain during your period. Lasting 7 days can be so tricky! Ice packs are so helpful along with the heat - I often mix and match both as well. Hope you're well and that the pain subsides
@@endoemmm Thank you! I’m so glad I randomly searched this and found your channel. I didn’t know it was actually a thing. But I hate other girls go through the same thing. It’s awful. Hopefully today will be my last day in bed for a while 💜
@@endoemmm Thanks! So far today is better. I’m still limping around a bit. Lol But the pain is tolerable. So I’m trying to catch up on house chores. I get so behind the week I’m down. But it does really make you appreciate the good days
Of course it's from Endo! Feeling like knives are shooting from my hips down to my feet during my period 😢 Shouldn't be surprised anymore after finding out my bloody nose every period was from Endo. too. Madness. Thanks for the tips! Thank you for the video.
My pain starts in my lower spine, my right buttock, different parts of my thigh in knee and the top of my foot! The pain on my back and buttocks is more of a sharp pain but anyway on my leg is more of a hot burning tightening but i do get sharp pain throughout the day. The burning tightening pain is the all day.
Oh my gosh I thought it was just me! I turned 28 and suddenly started having leg pain and everyone says its muscle cramps. But literally runs down to my toes from my pelvic area! Keeps me kneeling for half an hour at a time cause sitting down just exercebates the pain. Sometimes feels like my own body is punishing me 😢
I usually get a left hip pain that spreads to the lower back and both legs(Thighs knees ) this is a recent phenomenon for me. Its very uncomfortable. I have to take pain killer. I have endo cysts in ovaries.
This is exactly what my leg pain is like too. Left hip, wraps around to my back and shoots down my left leg so bad and also my right but not as sharp it’s so crazy how debilitating this disease is to your WHOLE body.
@@daeryanpadgett3247 I was avoiding surgery. But I realised I'd be better off after cyst removal. I came to know I had adhesion caused by endo too. So now I'm cyst free, no adhesions, for at least sometime.. but people say endometriosis returns after you stop your hormone medication. This disease is very problematic.
I get this horrible leg pain that comes from my pelvis, it's like a growing pain type of ache. Not sure if it's related to my endo or not. I have stage 4 abdominal endo. Colon, pouch of Douglas and uterine ligaments all have lesions.
Interesting. I sometimes get burning hip pain (feels like the hot poker nerve pain I get my shoulders for something else but more burny and less pokey) that radiates down my upper thighs on my period on one side, both sides, and sometimes no pain at all. At it's worst it went down to the sole of my foot and licked it lihe fire (once). Normally my periods aren't super painful. The leg pain is usually bearable and I take nothing for it. I did have two weird instances in the past though. Once time it was stabbing cramping pain in my stomach near my diaphragm like a band of something was cramping all my insides and made me nauseous. Another was cramps so bad and in an area that I thought I had a stomach flu. Hours later I was suprised with my period. Both resolved within 24 hours like my leg cramps do. I don't have any if the other classic signs of endo either. My pain tolerance is probably considered high (my husband gets worried because I have burnt myself really bad and not reacted more than once). I haven't thought much of it until now. We're going to see a fertility specialist soon after trying for years. This could be one of my issues.
I am curious about leg pain in endometriosis. I think i do have it bu not consistent so i won't associate it with endo. I am not yet diagnosed with endo yet but my OB is suspecting that i have rectal endo. Waiting for my appointment. My legs like burning at times, is that the kind of leg pain with endo?
So all this time i have these endo😥 all symptoms that u mention i had experienced them all untill now😢😢😢😢 very painful for my everyday life. After waking up in the morning i have no energy having back pain and pelvic pain sometimes i have ibs diarhea then my buttocks hurt also down to my right thigh and and lower legs... and much worst on my period..... 😢😢😢😢😢😢
I have it so badly that I've been getting nerve blocks every 5wks (steriods). You Explained how I get My pain & every time Every Freaking Time....Rolling eyes-- I'm told No that's not possible. $$##@@%@×× I'm also an advocate since 2002 & have co-run the Ottawa Ontario Support Group since 2007. Connected to the hospital here & the surgeon. In all of This time-- I've never heard of the symptoms of Leg Endometriosis!! Seriously I go in every few months now (now I get a process where they meld the nerves every 5-6 months). & that is the only way I'm able to walk. Every single time though-- he asks where's the pain? I tell him & he proceeds with but but that's not possible! I always relaite with why are you arguing with me?? Seriously. Rolling eyes 🙄. I'm the person with this.
Thank you for your video... Am also having same symptoms. Today I told doctor about pelvic pain and leg pain.. Doctor told how much do you have pain, made fun I think so..
I dont know if i have it. But my legs hurt my head hurts and its so heavyy i feel awfully depressed , i feel so much sadness and angry i dont want to eat i feel nausea and disgusting. So tireed. Cant sleep well 3 days on this hell and 2 to go i just want to cry and sleep 8:07
Great question! I typically have a flare-up of excruciating pain during my period as well as outside of my period when I take on extreme exercises (like running long distances or taking on an intense spin class). Everyone’s different, but that’s what I experience!
Wait so does endo just never go away 🥲I think I might have endometriosis. I definitely have something wrong with my uterus. Just now my cramps have just been all down my legs and I can’t move or even walk to get ibuprofen. It lasted like 30 minutes. Im begging my mom to take me to a gynecologist but she keeps pushing it off and forgetting. I told my dad about my pain and he completely just said nah you’re normal and saying he understood my pain. Im 18 but idk about insurance and how to schedule and appointment. Cant even drive.
You're obviously looking for answers seeing as you're here. I suggest you do extensive research and document your symptoms, time of the month etc etc etc. Educate yourself and then approach your mom, family members, maybe an aunt? gp or gynaecologist... good luck ❤
So sorry to hear you're experiencing pain and discomfort to the point where it's impacting your ability to grab pain management. I first and foremost want you to know that you're not alone in the pain you're experiencing. 1 in 10 have endo, and the pain you have could be related to other illnesses / concerns (i.e. PCOS, adenomyosis, etc.) - so it's important to have a chat with your family doctor to raise your concerns and ask some questions about next steps (which typically should be a referral to a specialist to investigate). You're the one living with the pain - and you know your body best - so if something doesn't feel right, it's important to advocate for answers. SO proud of you and I know how difficult the beginning portion of a journey can be. You are not alone.
I’ve had bad bladder and labor like pain around my period for over 10 years. Sometimes I have heavy periods and sometimes only spotting periods. I’m now bleeding heavy 12 days before my period I also have sciatica pain in butt hip area and my lower back hurts so bad. I’m hoping it’s endo and not cancer 🥲
Oh my god, iam here crying my eyes out. I can't express how much this video means to me. As I feel so alone and no one understands that my leg pain is sciatica connected to endo. 😢 Doctors just think i have pulled a muscle or sprained my leg, and it will wear off. 😢😢😢😢 I know my own body and know its not this. Thank you for making me feel understood and not alone.
You are so not alone. My 65 year old male GP was clear: endo cannot flare out towards your legs! I was so angry and felt so alone in my pain. I know my body, I know what endo does to me. I'm so tired because of the constant pain. Why do I also have to convince a medical professional that it's not just in my head. I also try hot packs and sometimes it gives relief. I feel somewhat less alone after watching this video.
Yes!! You should see my reply above!! The man I see is 1 of ppl in our country & keeps saying "well that's extremely rare".... wtf doesn't mean I don't have it!!
Same feeling 😢 everyday experiencing leg pain
I had been complaining about leg pain during my period (after diagnosis & surgeries) for about 5 years-and was repeatedly told it was transferred pain, all in my head and nothing to worry about. Then, during my last surgery the Surgeon informed me that I have lesions which have grown around the nerves and arteries leading to my left leg. It is so ingrown it has attached itself directly through both nerve and arteries, my left ovary, my bowel wall, my perennial cavity wall, and through to even being stuck to my bone. He removed what he could elsewhere but due to the risks associated with working so closely with my arteries and nerves they had to leave it in. I now live with loss of sensation, pins and needles, and it affects my ability to walk on the leg properly... So yes, it's a thing! Don't let them tell you your crazy- hopefully others will catch this before it affects their ability to walk like me-as if I was listened to years ago maybe it would have been treatable..
oh my goodness!
I’m so sorry you didn’t get the care you needed. Thank you for sharing, you’ve encouraged me to advocate for myself more. After years of explaining my pain to drs finally a nurse practitioner suggested it might be endo and watching these videos I’m crying listening to symptoms and furious it took so long to get here!
The pain in my legs feels like what I had when in labor both times. Cramping down to my knees. It's how I know my cycle is starting soon.
Repeated episodes of sciatica led me to find out I have endometriosis when I finally figured that they always coincided with my periods. The pain is unbearable, I can't stand up, can't walk straight, can't sit, can't find a proper position to sleep, can't even sneeze without suffering an absurd amount of pain, like being hit by a thunder, you can literally feel the electricity going through your spine and leg through the sciatic nerve, it gets so bad sometimes that I can't even feel my toes... OTC medicine don't work, antiinflammatory creams barely do something... I'd rather give birth without anaesthesia every six months than have these long flare ups, it'd be less painful. 😓
So sorry to hear you experience the same leg pain / sciatic pain. Thinking of you!
@@endoemmm thank you! It got a lot better after I cut gluten, sugar and dairy out of my diet, birth control pills are very helpful as well, I hope you have found what works for you too, sciatica is no picnic.
This is how I feel too 😢 how did you get diagnosed? I’m struggling to find a doctor who believes this pain and struggle is not normal. Currently in excruciating pain and I medicine is helping to subside it. Got an another 8:07 appointment for 2 weeks later but argh. I just want to find the right doctor who can help me confirm. I’ve done all the tracking and I just know it has to be this. It makes no sense that all my blood work and ultrasound comes out perfect and they tell me I shouldn’t have pain - but I DO AND IT IS NOT FUN TO KEEP GOING BACK AND BEING TOLD PAIN IS NORMAL.
I use magnesium butter on my legs and feet and it is so helpful.
I have endometriosis and PCOS, i also have a full 8 day heavy and very painful period, ive had my period since i was 11 (Im 20) and since i started menstruation ive always had excruciating cramps, back pain, leg pain, migraines, extreme fatigue etc , i was only diagnosed at 16 though with both health conditions, its horrible and i pray for all women like me out there that eventually a cure is made for this horrible disease
holy cow, everything you’ve just talked about is everything i’m also going through. having endometriosis and pcos on top of everything you mentioned is such an exhausting feeling. it feels good to know someone else understands the feeling. i’m wishing you all the luck in your journey
@@n3ssac hey girl, same too you! ❤️
Omg she just helped me to find out what’s actually happening to my body 😢 all of these doctors keep misdiagnosing me! Thank you so much for this information
I've had crazy leg pain during my periods. Upper / inner thigh pain. Yep, interesting that I came across this video. I would also get a intense pulling and period cramping in my legs.
Mine was similar! That pulling sensation was definitely present!
Same here, especially my right leg, it almost feels like my nerves r being electrified down to my toes, I've started treatment for endo by getting the shot, but idk it still hurts just as much. It's funny especially since it's the early stages, anyway hopefully it gets better soon 😁
Just wondering if anyone here is interested in starting a support group? Just thinking maybe we can meet through Zoom periodically and share our experiences. Many people cannot relate to the symptoms and pain we go through because it does not always show up on the outside. I have never run a support group, but I do have a lot of experience with endometriosis and am still struggling with this issue. Reply to this message and well figure it out!
yes please
Yes!!!
Yes please…
Much needed. Pls
Good idea
I've been having this symptom for some time now. I started heavily exercising for a few years. Besides feeling pain in my legs from my pelvic region down to my ankles and toes feel heavy like sandbags. Thank you for the video. I knew it wasn't normal to be extremely fatigued and have excessive brain fog and insomnia during my PMS. 😢.
Oh wao ! My legs have been in pain. Specifically my calves. Wao. No one would have put this together. Thank you.
I’ve had leg pain for years. Recently diagnosed w endometriosis. I had no idea!
Such a hidden symptom!
I experience endo symptoms 24/7. For me the leg pain started after my first lap. in 2017. Currently in bed with heating pads, taking meds to try and get the pain under control.
Best way I can describe it, is bone pain, from my hip area/top of buttocks that goes all the way down to my ankle. Sometimes in both legs, but on average, usually worse in my left leg.
I know it's really bad when it causes me to limp around my house, affects my sleep, and a single flight of stairs might as well be Mt. Everest.
And the pain often causes emotional distress, which in turn, increases the pain.
Ugh, I'm so over it.
This is exactly what I’m going through and severely. I have endometriosis adenomyosis and fibroids. My stomach looks like I’m 6 months pregnant too and now on a waiting list to been see by a specialist gynaecologist. I’ve already been suffering with endometriosis 18 year with one operation, but time round I’m totally much more of a severe pain physically mentally and emotionally 😓
U
I have a severe case of endometriosis. I've dealt with this since the late 80's. As a kid going through this is scary. I never got it fixed til my late 30's, I am in my late 40's now and it's still a causing pain in my ssa
OMGGGGG!!!! I’m an endo-conquerer as well! This video just single-handedly answered so many questions for me! I’ve been treating myself for sciatica for about 2 years (stretching is a healer). This entire time my endo has been the main contributing factor! Wow! Thanks!
Thank you for posting this! For 6 months I've been trying to find women that talk about leg pain and endometriosis because it's my newest symptom that got bad really fast, shooting into my feet. It's chronic now and never goes away, just varies in degrees and locations of pain. Most women talk about the painful periods, but not many talk about the leg pain or even chronic pelvic pain that never goes away. Do you also have bad lower back pain? And where did they find your endo, if you don't mind me asking?
So sorry to hear that it's a symptom for you too, Abbey! It can be really challenging at times when it comes out of nowhere. I have had bad lower back pain during endo flare-ups. I find that a heating pack or even a small thumb massage can help reduce some tension in the back! Do you try something different - always open to hear how others deal with their endo pain :)
I go through this with my right leg. It is excruciating 😣.
@@melinagomez3788 So sorry you experience the same!
Magnesium has been a big help for me. My husband gives it to me every night religiously and it does help with the leg pain and pressure I get at night.
Thanks, I'm gonna try it.
Thank you for your video. It is very helpful to find others who are experiencing the same pain. I am 53 and have been dealing with endo since I was a teenager. I can say the only period in my life where I did not suffer badly was while I was having children. In my late thirties, the extreme symptoms returned, and two weeks out of the month and I suffered terribly. Now that I am going through peri-menopause the pain is worse and I am sitting here crying because of the pain in my hip, buttock, and nerve. And......for years I have been through a bunch of doctors that don't know what I am talking about and the solution is just to put me on birth control which I always stop because it makes the symptoms even worse. You get to a point where you give up on doctors and just do what you can to cope. Endometriosis is an ailment that can make you crazy so it is sad but comforting to know that there are others that know exactly what I am feeling.
So so hard, but know that you’re not alone in the journey. It can be really hard and challenging at times - but your voice and advocacy for change will make the world a better place for those after us coming up the ladder with endometriosis ❤️
Gosh. This is my story word for word. At least I’m not alone. The pain is insane. I wish I could have had 10 babies to stop the pain in my child bearing years…..
Thanks for connecting the dots between sciatica and endometriosis. I did some sciatica stretches and it helped a bit. I also got a sciatica chair cushion and it helps too. Hoping everyone finds relief and things that help manage this.
I have leg pain even when I don’t have period
So do I. I have to be sedentary and use a power wheelchair in order to keep the pain at a manageable level, but it accumulates the more I move about. It feels like my leg is being wrenched off my body like a turkey leg at Thanksgiving. Hurts to my right knee & up under my right shoulder blade. It's horrific. I have to use oxycodone when it flares just to keep from writhing and hollering in pain.
That might be just regular sciatica nerve damage!
I have neuropathy (damaged nerves)… all of a sudden about a year now my neuropathy pain is unbearable when I’m menstrual.
Google brought me here.
So for the pain- laying on my stomach helps (sometimes with a pillow under my pelvis)
Stretching out my legs… occasionally kicking… crossing my feet and stretching.
Also the less meat I eat, the less pain I’m in. Will go vegan 🌱
Thank you for this video 🙏🏿❤️
I am positive that I have sciatic pain associated with my endometriosis, the pain is always there on the first day of my period. It helps me to stretch, in a sitting position have your ankle on your knee. Also taking fish oil reduces inflammation, I would have some every day in general, but especially around when you start your cycle. I think its also triggered by ovulation. If you have heavy periods and brain fog cause by endo I would look into taking an iron supplement and drinking raspberry leaf tea.
Discovering the link between leg pain and endometriosis is what finally pushed me to get an appt with an endo specialist. I have my appt tomorrow afternoon. I am nervous but hopeful to start getting some answers and next steps. 🙏🏼
Hiii... What your doctor suggested do cnfrm me
Thanks Angel 🙏🏻💙 all the best for your endo journey!!
I start feeling leg pains only now .. at 42 😢 sending you all good and healing vibes ❤️🩹
This video is quite helpful! I recently started having heavier and longer periods, with leg pain. Turns out I have Adenomyosis. I was quite educated about endometriosis, but had never heard of Adenomyosis. Its a cousin of Endometriosis and has similar symptoms. Hoping to get it under control before its too bad. Sending you love from India
Please suggest me how to reduce this pain ....how r u now??
Thank you so much ❤️ for this video. You have just confirmed that I am not crazy..
I'm literally typing this in bed, leg pain and abdominal pain. 😢
Sending you love from south africa 🌍
Thank you so much for this video. As now I know I am not alone. Excruciating pain, heavy bleeding feels like I am in a blood pool. And there it was the doctor telling me not to over exaggerate... Got diagnosed last month. I know how it feels..
My dr thinks I have this and this could definitely explain my leg pains I complain about often and never knew why I had it. Mine is more than just on my periods though but worse while on it.
Diagnosed in the 90's. You name it I have had it. Literally everywhere in my body. Re leg pain. It's from my lumbar/sciatic endo
Thank you so much for sharing this. After 6.5 years of this exact pain, stage 4 endo, a lap & 2 excisions I still have this very pain all the time. It’s frankly devastating as I can’t walk properly . My initial flare was so similar to what you described, thank you for making me feel less alone. My endo surgeon has been amazing but I think that there is still some impacting the nerves. Does sciatic endo pain mean a possible spinal op? Sending love & thanks for the massage tips 🙏❤️
Its such a painful exhausting desease...really takes over life as gets worse,feels like such little support ,where I live it's now a 3year wait to see a endometriosis specialist, feels like it's really not recognised as a series condition and with it effecting fertility possible for so many which is believed to be so important ,how has this disease gone om so long with so little spoke about ir
Agreed - I feel like there should be more awareness around endometriosis (as well as resources and funding to support those living with the disease). Know that you're not alone in your experience :)
Because it only effects women that's why.
So glad you made a video about that... you're right it's definitely hardly ever discussed ... I have it almost daily now and sleeping is so difficult 😢 not just during flare ups unfortunately. Hoping surgery will help alleviate some of it 🙏 ❤ thank you for the tips
This is exactly me for my left leg. Waiting for a pelvic MRI and it’s soooo tough.
I have this exact pains during my periods. I use a heating pad on my pelvis and I put medicated pain relief patches from the drug store on the part of my legs that hurt the most. I wrap my thighs sometimes with heat pads from CVS if needed. I also decrease my caffeine no coffee sadly those few days I have bad cramps. I drink carrot juice mostly and green juice and water to stay hydrated. I lay in bed and just sometimes put pillows around me to help stay comfortable. Hope this helps someone.
I had pain in the leg top though when I was delivering my kids and when I had surgery taking my uterus out I had the same place. I have had endometriosis for over 30 years.
I experienced excuciating upper/inner thigh pain starting 17 years ago. So bad it drops me to my knees. I also had and continue to have bleeding and spotting almost every single day. I was in the military when it first happened. They thought I had a hernia. That was negative. I did PT for an "inflamed tendon". Did nothing. Put me on Motrin, did nothing. Then flexeril. Nothing. Then injections into the crease where your upper thigh meets your groin. That did nothing. Finally, they decided it had to be my tendon, being too short, and the only thing to do was an iliopsoas tendon release surgery. Which means no more functioning tendon in my upper thigh. Pain never left. I am physically maimed from that surgery. My hips will never sit evenly, I have a huge ugly scar, and limited mobility now and it was 100% uneccesary! Now I am almost positive that pain is from endometriosis, which after years and years and years of complaining about, was finally diagnosed. I am in constant pain, every day. And not one doctor seems to care.
I get terrible leg pain starting from my groin to my knees and in my glutes. I sleep with a heat pack and a memory form leg pillow, the pain of my legs touching is excruciating.
My pain has certainly become worse as I’ve gotten older.
So sorry to hear that you get terrible leg pain as well. Sleeping with a heat pack sounds heavenly. I always have a pillow propped in between my knees while I sleep to reduce pressure on my lower back - which sometimes helps! Thinking of you as you find pain management methods that work for you and your body.
Have you been operated before for endometriosis? I had a consultation with possover/neuropelvioloog last year and he said sciatic nerve is progressive and has to get operated on. I have neuropathy literally every second of the day, in left leg (horrible sharp pain left foot, burning feeling in calf, rightness, pain backside leg, sometimes numbness) do you have also these complications?
I had bilateral thigh pain on my period for years when i was younger!! Still have debilitating pain and all of the other symptoms almost for 20 years and all the doctors I've seen dismissed me by saying it was normal and i had just bad lack getting very painful periods.. finally i got diagnosed with endo a couple of months ego and waiting for my surgery because they found a hemorrhagic cyst(i think its called, English is not my native language) and i qm afraid for what they are going to find in my stomach after all those years of untreated endo...
thank you for all your informative videos! i am learning a lot from you 💗
Aw thanks so much! Truly means a lot to me. If there is anything that you'd like me to talk about on this channel, let me know!
My right hip and leg has horrible shooting pain every time I have my period.😞 It will last 3-7 days. So I’m stuck in bed with my heating pad. When it gets even worse my husband will have to put me in a hot bath.
Sometimes I will also put ice packs on my lower back and butt/hip
So sorry to hear that you have similar leg pain during your period. Lasting 7 days can be so tricky! Ice packs are so helpful along with the heat - I often mix and match both as well. Hope you're well and that the pain subsides
@@endoemmm Thank you! I’m so glad I randomly searched this and found your channel. I didn’t know it was actually a thing. But I hate other girls go through the same thing. It’s awful.
Hopefully today will be my last day in bed for a while 💜
@@carris2scents57 Aw so happy to have you here! Hoping the pain subsided and that you have a great day! Do something for yourself today :)
@@endoemmm Thanks! So far today is better. I’m still limping around a bit. Lol But the pain is tolerable. So I’m trying to catch up on house chores. I get so behind the week I’m down.
But it does really make you appreciate the good days
my right hip and my right shoulder pain cyclically get really bad.
My goodness. I have sudden leg pain and a massive tummy
All my pain is on my left lower abdomen and inner upper left thigh
How can we even work and support ourselves with this flare up. Many people don't understand smh
This is very helpful. Thank you very much,
I’m happy you found it helpful!
I experience bi-lateral thigh pain every cycle
Of course it's from Endo! Feeling like knives are shooting from my hips down to my feet during my period 😢 Shouldn't be surprised anymore after finding out my bloody nose every period was from Endo. too. Madness.
Thanks for the tips! Thank you for the video.
The leg pain led to my diagnosis😢
Why does having Endometriosis flare ups ache so much ??
My pain starts in my lower spine, my right buttock, different parts of my thigh in knee and the top of my foot! The pain on my back and buttocks is more of a sharp pain but anyway on my leg is more of a hot burning tightening but i do get sharp pain throughout the day. The burning tightening pain is the all day.
Thanks for suggesting this video. I now know I probably have sciatic endo
My leg dose go from under me when pain flars like sciatica and definitely get heaviness from pelvis down like a tyre around me
I have leg Pain with Endometriosis & i mange with pain meds and birth control
Oh my gosh I thought it was just me! I turned 28 and suddenly started having leg pain and everyone says its muscle cramps. But literally runs down to my toes from my pelvic area! Keeps me kneeling for half an hour at a time cause sitting down just exercebates the pain. Sometimes feels like my own body is punishing me 😢
I usually get a left hip pain that spreads to the lower back and both legs(Thighs knees ) this is a recent phenomenon for me. Its very uncomfortable. I have to take pain killer.
I have endo cysts in ovaries.
This is exactly what my leg pain is like too. Left hip, wraps around to my back and shoots down my left leg so bad and also my right but not as sharp it’s so crazy how debilitating this disease is to your WHOLE body.
@@daeryanpadgett3247 I was avoiding surgery. But I realised I'd be better off after cyst removal. I came to know I had adhesion caused by endo too. So now I'm cyst free, no adhesions, for at least sometime.. but people say endometriosis returns after you stop your hormone medication. This disease is very problematic.
I get this horrible leg pain that comes from my pelvis, it's like a growing pain type of ache. Not sure if it's related to my endo or not. I have stage 4 abdominal endo. Colon, pouch of Douglas and uterine ligaments all have lesions.
Interesting. I sometimes get burning hip pain (feels like the hot poker nerve pain I get my shoulders for something else but more burny and less pokey) that radiates down my upper thighs on my period on one side, both sides, and sometimes no pain at all. At it's worst it went down to the sole of my foot and licked it lihe fire (once).
Normally my periods aren't super painful. The leg pain is usually bearable and I take nothing for it. I did have two weird instances in the past though. Once time it was stabbing cramping pain in my stomach near my diaphragm like a band of something was cramping all my insides and made me nauseous. Another was cramps so bad and in an area that I thought I had a stomach flu. Hours later I was suprised with my period. Both resolved within 24 hours like my leg cramps do.
I don't have any if the other classic signs of endo either.
My pain tolerance is probably considered high (my husband gets worried because I have burnt myself really bad and not reacted more than once). I haven't thought much of it until now.
We're going to see a fertility specialist soon after trying for years. This could be one of my issues.
I am 59 now, have endometriosis stage 4, so abnormal tired, for 20 years and indeed almost every dag leg pain etc.........etc..........
I am curious about leg pain in endometriosis. I think i do have it bu not consistent so i won't associate it with endo. I am not yet diagnosed with endo yet but my OB is suspecting that i have rectal endo. Waiting for my appointment. My legs like burning at times, is that the kind of leg pain with endo?
My leg pain happens with lower tummy inflammation. When inflammation decreased, pain also go away..
So all this time i have these endo😥 all symptoms that u mention i had experienced them all untill now😢😢😢😢 very painful for my everyday life. After waking up in the morning i have no energy having back pain and pelvic pain sometimes i have ibs diarhea then my buttocks hurt also down to my right thigh and and lower legs... and much worst on my period..... 😢😢😢😢😢😢
I have it so badly that I've been getting nerve blocks every 5wks (steriods). You Explained how I get My pain & every time Every Freaking Time....Rolling eyes-- I'm told No that's not possible. $$##@@%@×× I'm also an advocate since 2002 & have co-run the Ottawa Ontario Support Group since 2007. Connected to the hospital here & the surgeon. In all of This time-- I've never heard of the symptoms of Leg Endometriosis!! Seriously I go in every few months now (now I get a process where they meld the nerves every 5-6 months). & that is the only way I'm able to walk. Every single time though-- he asks where's the pain? I tell him & he proceeds with but but that's not possible! I always relaite with why are you arguing with me?? Seriously. Rolling eyes 🙄. I'm the person with this.
Thank you for your video... Am also having same symptoms. Today I told doctor about pelvic pain and leg pain.. Doctor told how much do you have pain, made fun I think so..
How does having leg and jornt pain triveea in the nerves in the leg?? How do you relieve leg jornt pain??
I only get leg pain. I don’t get bad cramps, no back aches.. left leg pain a couple days before my cycle and 2 days during my cycle. Is that normal?
Hello M. How are you doing I have a question) how does leg pain get so sore by a woman with endometriosis?
I dont know if i have it. But my legs hurt my head hurts and its so heavyy i feel awfully depressed , i feel so much sadness and angry i dont want to eat i feel nausea and disgusting. So tireed. Cant sleep well
3 days on this hell and 2 to go i just want to cry and sleep 8:07
Do you experience 24/7 pain with endo?
I do..
It’s so related 😢 I want to know how to treat this.I’m still 21 year
When you say flare up, do u flare up when u r on your period? Or is just random?
Great question! I typically have a flare-up of excruciating pain during my period as well as outside of my period when I take on extreme exercises (like running long distances or taking on an intense spin class). Everyone’s different, but that’s what I experience!
Mine is random😂
Do you ever have fore arm pain?
I personally don't!
@@endoemmm thanks for replying! I just got diagnosed stage 3 but also have other issues trying to figure out.
I have endometriosis and yes personally I do get severe fore arm pain in addition to the leg pain.
Omg same 😮sometimes I get chest pain that goes down to my forearm.
I was diagnosed with endo and i feel joint pain on my knees and elbows😢
My doc suggested me to get pregnant.... !! She said that the leg pain will be gone post pregnancy..... I am not very sure wht to do .. :(
See another doctor. This one lives in 1900. Pregnancy is NOT a cure for endometriosis.
Dose anyone else’s cause leg paralysis for days :( and pain ! Mine dose and I’m so scared
🙏🏼
❤ Electric blanket = giant heatpad ❤
❤️
Child post help me omg ❤thank you for u video .
Wait so does endo just never go away 🥲I think I might have endometriosis. I definitely have something wrong with my uterus. Just now my cramps have just been all down my legs and I can’t move or even walk to get ibuprofen. It lasted like 30 minutes. Im begging my mom to take me to a gynecologist but she keeps pushing it off and forgetting. I told my dad about my pain and he completely just said nah you’re normal and saying he understood my pain. Im 18 but idk about insurance and how to schedule and appointment. Cant even drive.
@@sweetiepie7831 does endometriosis also cause uterine prolapse? Or does it just create pressure down there in general?
You're obviously looking for answers seeing as you're here. I suggest you do extensive research and document your symptoms, time of the month etc etc etc. Educate yourself and then approach your mom, family members, maybe an aunt? gp or gynaecologist... good luck ❤
So sorry to hear you're experiencing pain and discomfort to the point where it's impacting your ability to grab pain management. I first and foremost want you to know that you're not alone in the pain you're experiencing. 1 in 10 have endo, and the pain you have could be related to other illnesses / concerns (i.e. PCOS, adenomyosis, etc.) - so it's important to have a chat with your family doctor to raise your concerns and ask some questions about next steps (which typically should be a referral to a specialist to investigate). You're the one living with the pain - and you know your body best - so if something doesn't feel right, it's important to advocate for answers. SO proud of you and I know how difficult the beginning portion of a journey can be. You are not alone.
I’ve had bad bladder and labor like pain around my period for over 10 years. Sometimes I have heavy periods and sometimes only spotting periods. I’m now bleeding heavy 12 days before my period I also have sciatica pain in butt hip area and my lower back hurts so bad. I’m hoping it’s endo and not cancer 🥲
I have chronic aching , inflammation & heaviness from my spine to tip of my toe 🥹I give up
Always good to talk to your doctor about these pains / discomfort 🤍
It literally feels like I am giving birth with my leg pain
Its so excruciating 🥲