Does anyone else out there have problems with walking and extreme pain in leg? Mine started straight after a lap where I could walk

[Tinkerjack1912]

Now I still have bad days and pain every day, they suggest it could be the endo which could have spread, I just wondered if anyone else has similar ?

[Hidden]

Hi

YES I do! It comes and goes, and only on my left side. The pain is deep in my groin but radiates to the top of my leg, then radiates down to the just above the knee. It's an intense stinging, throbbing and quite sickening pain and at times makes my leg actually GIVE WAY!!!

And when I have, it makes me limp, cannot walk normally.

How does it actually feel for you? Do you have it right at the top, inside of the leg, groin like area too?

[Hidden in reply to Hidden]

After my second lap, that pain and limping disappeared for nearly a year but it's creeping back again, not as severe though.

I believe mine was caused by two things:

1. A very swollen and twisted left tube which was attached to my bowel and peritoneal lining.

2. I had a very large peritoneal post inclusion cyst on left side wall.

When these were both cut out, the pain simply disappeared. This is why I am worried that i am getting the similar sensations again. I so need a scan. Sounds like you may do too? It's not normal to limp as young girls.

[Scooteeder in reply to Hidden]

OMG! This sounds JUST like me! I can utterly identify with that sort of pain. I have pain in the left side of my groin, on the inner top of my thigh, just by the pubic bone area. It feels sort of "deep inside" and is a throbbing, gnawing pain. A constant dull ache is there that can feel quite sickening at times. However, it's also made worse by changing position. If I'm sitting, I also get a feeling of pressure that can affect my bladder, as well as tingly "pins and needles" in my left buttock. It's worst when in bed at night. I am very uncomfortable lying on my back, as it feels like something is pulling in my groin. If I turn on my right, its a heavy and tingly sensation. If I turn on my left, it feels like my left leg has gone numb/fallen asleep!

I can feel it NOW, which is what lead me to spotting, and responding to your post! Weird thing is, I've just HAD another lap (on Monday), so surely the sensation should be gone?

[Scooteeder in reply to Scooteeder]

By the way... I can't sit down and keep my legs still. The sensation is so annoying (especially the fuzzy, pins & needles thing) that I have to constantly twitch and fidget my left leg!

[Tinkerjack1912 in reply to Scooteeder]

Hi really does sound similar doesn't it. Drives me crazy I can lay on my right side ok but my left hurts when I lay in it. When it's at it's worse I hate being round anyone coz I'm scared they will touch it / bump into me. My whole lives been affected I've had more tests than can be imagined.

[Hidden in reply to Scooteeder]

OMG right back at ya! Seriously. Your description sounds exactly like mine but actually sums it up better for me. To be honest though, that pain diminished following my surgery last year, in which the surgeon removed my left hydrosalpinx, twisted, adhered tube along with the really massive Peritoneal Post Inclusion Cyst. I believe this caused the pain, pressure and limping. You know, it actually felt like someone was pumping up a balloon inside of me, creating continual pressure which felt like it should burst to relieve things. It was nauseating.

It's gradually creeping back this last few weeks, which is why I am being refered for an MRI (although that's mainly because I still have quite bad bowel symptoms recently).

I don't get the pins and needles, but sleeping, or should I say trying to sleep, is even worse. I actually find it worse sleeping on my sides, as I can only really fall asleep on my side. I have the left sided pressure now, which I don't understand, the tube has been removed and so has the cyst. Dreading what they find in the scans. I'm so BORED of my own story. I was out and about today, paid loads to get into Blenheim Palace grounds for a walk but turned back after about hour. I used to be able to walk ALL day. Can't now, and its making me fat which I hate as I was always the skinny girl (which I actually hated as I was too skinny, couldn't put on weight). MOAN. I wouldn't worry about being a larger girl if I was healthy shape, size doesn't worry me, but for me all my fat is around my middle and I can just see it's not healthy. Plus, I really struggle with clothing in the day, as everything hurts around my waist. Even PJs hurt my tummy at night. I went out and bought size 14 nightwear yesterday, I was always an 8-10, now a 10-12. You know, sorry to say this, I cannot even wear knickers when I have bad period pain. I just wrap myself up in my massive nightie and dressing gown. All very well but then my legs get cold. This is all because my tummy swells so much, from pure inflammation. And I eat pretty well 80% of the time.

Anyway, sorry went into rant about ME ME ME as per.. but I think this pain of yours will dull down and quieten over the weeks. Do you know what they did operatively? I think you should call surgeons PA tomorrow, see if the notes are ready. May help you understand and to relax.

So many similarities between us, with our last ops, GA reaction, pain, bladder pressure, cats.. lol..

I really hope this helps you feel less along with it. Oddly, knowing someone as that same groin left leg pain makes me feel less alone with it.

xx

[Tinkerjack1912 in reply to Hidden]

Hi mine started after my second op back in 2003 I had my endo lazered off it tends to attach my left vary to the uterus wall, my last op was in 2010 where my consultant cleared the endo from there again but told me after that I had endo on my rectum and he would operate as the risks out weighed the problem at the moment. I've been very lucky as in between then and now I have had two beautiful babies but I know the endo is back again.

[Hidden in reply to Tinkerjack1912]

It's so so lovely to hear you managed to have 2 babies, I love to hear of people with endo being able to have children. Brings me hope.

My bowel issues can't really be ignored anymore. It's just tiring me out to be honest. How old were you when you conceived, if you don't mind my asking? I think you are alot younger than me, lol :-). I've left it all rather too late for conception side of things, sadly.

[Tinkerjack1912 in reply to Hidden]

I had my first at 34 and my second at 35 after years of believing I wouldn't be able to have any.

[Scooteeder in reply to Tinkerjack1912]

Wish that had been me! I had Endo symptoms as far back as 2002, when I was only 31. The stupid Doctors didn't get round to finally diagnosing me correctly until 2011, by which time I was 40 (and too old for IVF). Don't you just LOVE the "postcode lottery" in healthcare! ( NOT!).

[Tinkerjack1912 in reply to Scooteeder]

I'm sorry to hear that, I was very lucky to get diagnosed so quickly, not that it felt that ay at the time.m

[Pesto]

My endo has come with leg pain for most of the time its been causing me trouble. It's been worse in the last 6 months, and in that time sometimes I get spotted limping. It's the only outward sign that I'm in pain that has ever really been spotted. I love hillwalking, but there are limits to what I can do.... I get to a point where I have to stop because of the pain. Its mostly been in my right leg, and that was where most of my endo was originally found (uterus/tube were adhered to my right abdominal wall) .... however I've just had another lap and although I've only spoken briefly to the consultant so far I got the impression that it was more active on the left side this time. I suppose this is why they say where the pain is isn't related to where the end is active always. I wonder if maybe I'm just always going to be prone to pain on the right due to the old damage/scarring.

I have a walking pole that I take on hikes that makes a massive difference to how far I can get. When we were coming down from Snowdon the leg pain was bad and my boyfriend gave me his pole two and having both sticks was great to get through the pain. I'm far too embarrassed to consider this outside of being clearly on a walk though!

I'm sorry you're getting this so badly . I wish "they" had better answers that correlate with what we know of our bodies!

[Pesto]

YellowRose I've had that "giving way" thing too when it's bad. Usually on the days where I end up leaving work due to the pain.

Makes such a difference to hear someone else say what I feel .... Don't feel quite so bonkers. Sometimes I feel like I'm having to make my own rules up and it stresses me out!

[Hidden in reply to Pesto]

Exactly. Well I had to resign from a good career due to endo. I was always pretty fit, and liked, still like, walking, but some days it's too difficult. I sed to be angle long distance runner too, loved dancing...all that's stopped. I just can't do it.

[Tinkerjack1912]

Thanks ladies it's so nice to hear I'm not the only one even though I wouldn't wish this on anyone. Mine is in my left leg pain starts at the top but my whole leg feels tender to the point where I hate anyone going near me, i hate being around groups of people and can't walk long distances I also get a swing (I guess) if I over do things which is visible and sometimes I can hardly walk for days. It's affected my daily life I can not do a Job that entails long periods of standing, I can't go bowling with my children and if I go swimming I'm in agony afterwards. I just wish it would all go away.

[Tinkerjack1912]

My endo is generally on my left side and attaches my ovary to the uterus wall, I also have endo on my rectum diagnosed in 2010 and my gyne didn't want to remove it as the risk of damage was too high.

[Hidden]

You definitely are not alone Tinkerjack. May be worth getting another scan? I am planning to but putting it off because i cannot face it right now

[Tinkerjack1912 in reply to Hidden]

Thankyou

[pattyboo1234]

yes me hun ive had painfull periods since i was a teenager ..... so the doctor put me on the pill at fourteen , just recently in the past 2 months ive seen a change in my bowel movements plus im in pain all over my body too especially my pelvic and top of my abdomen area and my legs feel as though they are like lead weights plus i feel tired and run down too and some days the pain is unbearable ive been to the hospital 8 times in the past month but because this deasise mimics i b s thats what they are treating me for but sine reading this web site i definatley know it,s this problem too

[Hidden]

Yes I do too. I get shooting pain down my right leg and in my pelvis and groin. This often makes me walk with a limp. I cN not turn my right knee to the right without it causing sharp shooting pains in my pelvis.

The pain is so intense it stops me in my tracks. I was someone who enjoyed long walks with my dogs. But now after about 30 mins of walking the pain kicks in and I have to stop. Sometimes the pain is there from the start.

I am also suffering from "heavy legs" ATM. Not sure if this is Endo related though?

Miserable isn't it?

[Tinkerjack1912 in reply to Hidden]

When I lay on my back I can't raise my left leg as high or as easy as my right and it feels like a dead weight. I have had every test under the sun and never been diagnosed just suggestions made, think I may go back to my gp and mention it for the millionth time. Thanks all. X

[bomberkl]

yes - I get a throbbing from my hip down my thigh, across my bum cheek and right down my legs especially on my left side. Its worse in the week before my period and gets so bad that I cant walk properly sometimes - in fact Ive been sent home from work today as I was hobbling around! x

[Tinkerjack1912]

Thanks all for replying i am def going back to my doctor as I think this is enough proof it's linked. That's the problem with gp they have a wide range of knowledge but only when we get referred do we get a better understanding.

[natashaz]

I have bad leg pain. Dull deep aches. I got this before my lap and at its worst i had to pick my legs up with my hands and get them moving before i could get out of bed as they had no strength. After my lap my legs were virtually pain free My consultant told me that my endo was on my back pelvic wall which is where a lot of nerves are situated which is what was causing the pain in my legs. Just over a year on the pain is starting again.