I have severe leg pain that worsens at different times in my cycle (usually menstruation an ovulation ) but I cannot seem to find much information on whether or not this could be a symptom of endometriosis. I have seen it mentioned briefly but as it is not a ‘classic symptom’ I’m struggling to get any useful info.
I do have painful periods, pain during/after sex and a few other symptoms associated with endo but these are not the ones affecting my day to day life. The leg pain in excruciating and stops me from even sitting comfortably never mind sleeping. I have seen numerous physios and pain management specialists over the past few years but have not been given a diagnosis or explanation for the pain and what causes it/how to manage it.
The pain feels as though it’s radiating from my pelvic region down my thighs. It is not specific to one leg and can start in one and move to another or it can flare up in both legs at the same time. Sitting/lying still for long periods does seem to make it worse (recently had Covid and resting in bed seemed to make it so much worse). It can range from a full muscle ache to a severe ache and shard stabbing pains in certain areas.
I am really struggling to find information relating to leg pain and doctors do not seem to be able to help me. Is it worth pursuing the endo route? Has anyone else has similar symptoms?
Any advice/help on this would be so appreciated.
Thank you!
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anniemilan
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Hi! You poor thing - the symptoms of this illness truly are horrific. I don’t know if it’s related, but I used to get really bad nerve pain from my sciatic nerve, down through my hips and my right leg. It turned out that I had a lesion of endo pressing on the nerve which was causing the pain. What sort of pain is it? My leg used to almost feel numb, tingly. It’s a weird pain - I can’t explain it! Keep on to the doctors - you know your body and when there’s something not right x
Thanks so much for replying! It’s really hard to describe. I’ve had tingling feelings at times but it’s more like a muscle ache. Imagine the feeling when you have a tough gym workout and your legs ache the day after. It’s like that but worse and resting makes it worse rather than helping. Thanks so much for your help x
I’m one of the health unlocked moderators for Endo UK. Thanks for posting, so sorry to hear you’re having such a sore time. Yes leg pain can by a symptom of endo and I appreciate how uncomfortable and sore it is. Sleeping with a body pillow is something I found really useful along with heat patches or hot water bottles. Sitting wise, I know a lot of people find using a lumbar support type pillow helps alleviate some of the pain. It might be worth keeping a pain and symptoms diary too, it often helps identify patterns or trigger and you can take it to your health profession to help them understand what your are going through. Endo UK have a great template, I have attached the link below for you. I don’t know what area you live in but there are a lot of Endo UK support groups across the UK and many sufferers find them a great resource to pick up hints and tips on how to manage these types of things, and it’s good to know you’re not alone, and chat with others going through similar issues. I’ve also attached a link on where you can find your local group. Hope that helps.
The pain and symptom diary is definitely something I need to do. I record dates and times of my pain but something more in depth would probably be useful. I am slowly working out sitting and lying positions that do help lessen the pain, hot water bottles and ibruprofen are a god send but unfortunately don’t get rid of it completely. I spend hours on end in hot baths as that seems to help too.
Thanks so much for the link, I will definitely take a look!
Hiya, so sorry to hear you are in so much pain Just wanted to share with you that I recently have started to get this pain you are describing on my right leg. On top of the usual big sciatica flare ups and I can understand is not an easy think to deal with. I went to see a podiatrist and it was not surprised when he pinpointed the root cause of the pain in my hips and pelvic area. i am 36 and have stage 4 endo and adeno all over my pelvic area. 2 things he reccomend me 1) Hip opening exercises 2) shoes with a lot of support to help with walking etc. I thought I will share but I hear you, the never ending pain and aches are something else.
Thanks so much for sharing. I’m so sorry you have it too, awful isn’t it. I used to think I was being a wimp but since having a baby I’ve come to realise I would rather be in early labour! Not even kidding. It’s unbearable as you cannot even sit comfortably and there’s no break.
Hi, I have the same problems most have described and yourself. I'm stage 4 had my 3rd lap in April for excision on pelvic wall and bowel, felt great for a couple of months but my hip and back pain has got worse, all month. I was told it could be possible nerve damage and am taking Naproxen daily and either codeine or tramadol, again usually daily, I've also got a long thin hot water bottle ( like 2 foot long ) !!The endo nurse I speak to isn't very helpful and just tells me to speak to my GP, who again isn't very helpful, so I'm keeping control of what I take and when. Strongly recommend keeping a pain diary and I also write down every tablet I take and what time, it helps me try and anticipate pain, and is great at showing the professionals I'm not addicted.
Aww I’m so sorry, that sounds absolutely awful. There really isn’t enough help for endo sufferers is there. It’s an awful, awful condition! Thanks so much for your help, I will definitely be on the lookout for a bigger hot water bottle. I couldn’t be without one when I have a flare up it’s like my safety blanket.
Hey 😊 I think I sound a bit similar to you… my leg pain was really noticeable when I stopped taking the pill 2 years ago but I didn’t really think much of it but now it’s so regular I know when to expect it. It usually starts at the end of my period and flares up around the middle of my cycle when I am ovulating. It usually dies off a few days later then sometimes comes again a few days before my period starts. I always remember having “growing pains” when I was younger but maybe it was actually this. I don’t have a diagnosis of Endo… I’ve spoke to my GP and she referred me for an ultrasound scan as she felt it might be a cyst - this came back all clear. I mentioned Endometriosis to her but she said seems I don’t have painful periods she didn’t think it was that but I’ve read that’s not always the case. Basically the only symptom I have is leg pain and lower back pain which flares up at the same time. Sometimes mine feels like a dull ache whereas other times it’s shooting pains down my left leg, it’s always my left side and goes all the way to my foot sometimes. I feel you though and the leg pain is horrible 😖
Mine is exactly like this, it just took me so long to realise there was a pattern to it as I was told to look out for things I was doing that could trigger it. Nobody ever told me it could be gynae related and now it’s so obvious!! I’ve had cysts in the past that come and go and have even had one surgically removed. I wasn’t listened to about those either, I just kept being told it was period pain. It makes my blood boil as I have a high pain tolerance and health professionals should know better than to be so patronising.
Im sorry you’re suffering and I hope you get some answers and some support.
Leg pain is my main symptom. It isn't constant it comes in waves at the start of my period. It feels like a knife being turned in the lower left of my pelvis and then radiates down my leg to the knee. It hurts like hell.
Awww I’m sorry to hear this. It’s so reassuring to know that I’m not going mad though and there could be a cause to my pain. So sick of being fobbed off. Thank you for your response, it’s really helpful. I hope you're doing okay.
I suffer from the same symptoms as you but I have pain that radiates down to my right leg only I have been suffering since 2019 I did have my lap sugery to diagnose endometriosis was told all my symptoms relate to endo I have so much pain on my periods I can’t explain how severe it can I do understand your pain think u need to fight more with docters to he heard because they will just keep saying you have bad periods
Ps lap sugery result showed no endometriosis no cyst no one can explain why I’m having this yesterday i was in so much pain I was literally in bed could not move
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