Endometriosis UK

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Severe hip leg and back pain

Lower left back and hip pain worse when due and on, last night I had same pain but worse on left and right hip, all across my back, front of both thighs, all they way to anckle in left leg and half way on right leg with lower left heavy feeling in tummy and extreme fatigue, been same all day today and tonight and I'm watching clock for the time to take more meds, I was diagnosed with endo 18 years ago but never suffered like this, anyone else have this

15 Replies

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Hi Ctjboom I used to have that pain when i used to have my periods at the age of 13 and this went on for a very long time, infact when i turned 17 they told me i had endo and they put my on a high dose of the pill, but this did nothing, so if i can remember they said that i had endo everywhere on my bowels and bladder. They did a scan and this confirmed it. I am now nearly 54 and my periods have stopped nearly 11 years ago and two years ago i had an operation to remove adhesions and scar tissue from my bowel and remaining ovary on the left side. So reading all about your pain and fatigue to me, is suggesting that you go back to your doctor or gynaecologist and ask if they could give you a scan to see if it has spread to these and other organs. My Best Wishes to You. x

Thank you for your reply, I went for a scan in May and it showed a tilted womb, my so called doctor recommended bc back to back but I don't want to take that coz of side effects and high risk of blood clots which run in my family, she said ok well ill book u in for another lap IF YOU WANT! I want to be told what would be best not if I want this pain I'm suffering now is the worst I've ever had I just want to cry xx

Hi Ctjboom,

I just replied to a slightly similar thread that's a bit old.

healthunlocked.com/endometr...

I have the hip and front of leg pain but fortunately no back pain. I believe it is caused by an endo cyst on my right ovary which is also stuck to my bowel. I think it is pulling me out of alignment. My next step is to see a new endo specialist (old one was rubbish) and also see my osteopath again.

Sounds like you have a disengaged GP but at least they are not blocking you from getting a diagnosis. Endo is a very complex condition which is why there are gynaes who specialise in it. You need to see one of these and nit a general gynae unless you are confident that the general gynae is really good and very experienced. Choose an endo specialist on the bsge website bsge.org.uk/ec-BSGE-accredi... Then tell your GP who to refer to. You have the right to choose on the nhs.

You are right not to take the pill given family history. The pill is only wallpapering over the problem and won't necessarily give you any relief. Best to find out what the diagnosis is first before throwing pills at the problem in my opinion.

Good luck.

I too have been experiencing severe pain in my hips, legs, and back. I too have endo sticking my bowel and uterus together. They found this when I had my last lap, but said they couldn't touch it as there was no bowel surgeon on hand. I believe the pain I am getting is related to my endo, but my GP says not, but what you had said about pulling you out of alignment makes sense. Have you had this confirmed since?

Hope you managed to get a better response from the new specialist.

Take carexxxx

Hi Tina,

Yes, the new specialist was brilliant, a lovely woman and also a very skilled surgeon. I had endometrioma, fibroids, adheshions and rectovaginal endo removed in a fairly long op 3 years ago. Following this the pain in leg, back and hip reduced considerably. It did return about a year after but i went to a cranio sacral therapist for just one session and it completely disappeared by the end of just one session.

We hold a lot of stress, tension and trauma in the pelvic area and this includes muscles and connective tissue such as the psoas muscle which connects the lower back to the legs. When this contracts, all manner of problems arise. I found that osteopathy really helped too. She discovered, prior to my op that I was very out of alignment. However, after the op she could see the difference which coincided with the reduction in pain. Doctors seldom connect the dots. EVERYTHING is related. I don't need it confirmed by anyone. I know my own body.

The pelvic area is a busy space with a lot of different organs and very little space left. If something grows there it will inevitably put pressure on organs and connective tissue and even press on nerves causing pain.

Hope you find your way through this soon.

Thank you. I think I need to push a bit harder or find a different GP. You have given me some things to think about.

All the best.x

I'm waiting for my lap (3 weeks time) and the leg pain is definitely the one I can't cope with. Can just about manage the hip and back pain but the leg is a killer, I'm 34 and feel like a 94 yr old dragging my leg around and having to lift my leg into the bed

Oh I no exactly what you are feeling I'm 42 feeling 100 this is no life I'm so down with it all good luck with your lap, is it your first? Are they burning it or cutting it away? Xx

Yes it's my 1st lap, 5cm chocolate cyst to be removed, endo to be removed and scar tissue sorted out - I actually can't wait as weird as it sounds about an operation! ! I don't know if its being burned or cut?!

As the weeks go on, the pain gets worse and it really does affect the mood - up and down like a yoyo!

It's not weird I hope they are cutting it out for you then you can get your life back, good luck and please let me know how you get on x

Thank you and yes I will let you know. Hope you get sorted soon too x

Xxxx

Hy girls,

My name is Lavinia, I am 34 and i have been diagnosed with endo 8 years ago but I had the pain for at least 15. I had 2 lap. and they removed the cysts and also a part of my bowel because I had cysts on it as well and for 3-4 months it was ok but after the pain came back and now its worse then ever .

Now my right foot bothers me , and in the last days my left foot started as well, not to mention the fatigue and the back pain.

i went for a scan but its the same like last time, it didnt spread.

At the moment i am trying all kinds of naturist treatments maybe something will work ...eventually .

HI,

I also have severe hip and leg pain, and numb leg too, I have been using a walking stick for the last 2 months as it keeps getting worse, I'm only 32! My thinking it that something - adhesions maybe, is putting pressure on the nerve in the hip which is causing the pain and nimbness? waiting on my first lap so hopefully that may help figure it out. Will update if I get any answers.

Sending best wishes!

Hmm interesting.... Thats like what I get when I'm due, and mood swings too