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Endometriosis UK
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A new type of pain?

At night I'm getting a new lower back pain and a unpleasant zingy tingly sensitive type sensation in my limbs running down to my elbows and legs. Do I need to be worried, is it some codeine side effects, sciatica or something else altogether? Does anybody else get this or know what may be the cause? It's driving me crazy.

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Hi Starry,

Yes I get this, does it feel like you are being electrocuted from the inside out (spasms) I have been getting these for months and they are really horrible, my doctor has put me on Baclofen to control them, it's the Endometriosis causing it and the lower back pain, I find putting a load of pillows under your legs so they are raised really helps, also when you get a chance speak to your go about getting some antispasmodics to help (Baclofen) hope this helps xx

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Thanks Nikki. I sleep with one pillow but it's probably too thin. Perhaps the op has triggered a nerve? I am completely Endo free since my op 4 weeks ago.

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I get this too and had my op 3 1/2 weeks ago. I read it's the nerve endings healing and it triggers electric shock type pains down my legs. Xx

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Thats it exactly I end up jerking but don't know why. Thanks Judan that would make sense, it's not me going potty then. Have you found anything that dampens the sensation. It's giving me awful insomnia.

How is your recovery going?

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No not found anything that helps helps it. I just end up walking around the house to see if that helps. I still have my surgical stockings on for another 3 weeks. I had a total hysterectomy with ovaries and cervix removed and stage 4 endo excision. Ovaries were kissing with a chocolate cyst on the left and simple cyst on right, and they were stuck to uterus which was stuck to bowel and back.

I'm doing well recovery wise, shooting pains and gas pains, but nothing compared to pre op pain.

Still get tired mid afternoon but part of that is down to boredom!

How are you doing? X

I had

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Wow that is the full monty of surgeries! Thinking of you. XX

I was stage 4 too. I had excision of RV module and extensive adhesions attaching bowel to vagina. I had the closest bowel shave possible and still avoid a resection and unexpectedly lost 4 cm2 of my vagina as the nodule was bigger and deeper than expected. I also had Endo removed from bladder and peritoneum.

My recovery is slow going, perhaps due to being readmitted for a week with viral meningitis and losing 9lbs just 3 days after surgery.

My main symptom was chronic fatigue and Dyspareunia so it's too soon to tell for me. My bladder is better though.

Yes like you fatigue strikes after lunch.

I'm also finding I have to pace around with the nerve pain too. Hopefully it is a phase and will pass soon!

Take care X

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Oh no, no wonder you can't sleep. It's hard coming to terms with it all isn't it. Your body will need extra time to recover after all it's been through.

Not sure how much weight I have lost but at least I can now see my feet! was so bloated I was wearing loose clothes every day.

When is your follow up appointment? Xx

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Weight loss was bad for me as it made me underweight and I'm struggling to put it back on ironically, they had to keep me on a drip in hospital for a week even after lumbar punctures ruled out bacterial meningitis. I think that all set my recovery back a bit.

I see nurse physio on 31st August and Surgeon early September.

Yes the nerve thing mainly happens at night and 4 hours sleep a day isn't enough! I guess I need to ramp up painkillers more that I have been.

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I found I felt a lot better when I stopped the painkillers. I only take them now for either bad gas pains or the horrible fuzzy banging headaches I now get after I have a hot flush.

I find it hard to go to sleep at night now, feel anxious for no reason. Managed to go out by myself for the time on Tuesday, saw a friend for lunch then popped into a shop for half hour just so I could have a walk around. Got home and slept for 2 hours, was so exhausted.

Are you still having a sleep during the day? Xx

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Yes, and I am having the same thing with anxiety particularly at night.

I'm sleeping so badly I am sleeping in the day which probably makes it harder to sleep at night. Catch 22.

I hate the painkillers and had stopped as it's a focus for my anxiety but I'm getting very desperate for a decent night sleep.

Tried to take the dog for a second walk this afternoon to build up strength but felt so tired I didn't make more than 100 metres. Frustrating to be feeling so week still.

Thinking of you. It's not easy is it!

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no, its not easy, its so frustrating. Like you I'm usually at work so find it hard not working, and not getting out and about on my own.

You're probably weaker with the lack of sleep too. Have you had your iron levels checked? Mine dropped (again) day before my op, and every day afterwards, until I was borderline needing a transfusion. Consultant put me on 200mg x3 daily of iron, which I'm still on - that can make you very tired too. Last time i was that anaemic i had trouble sleeping, focusing, and restless legs, so if you haven't had it checked, it might be something to consider?

Here for chat whenever you need to xx

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Thanks Judan, X I may well do that. The days are long slow and lonely.

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Well I'm here for you, just give me a shout xx

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I had similar discomfort pre and post operation. Especially the first three months after the operation. I found sciatica like pain very uncomfortable and even driving for 10mins can be hard work. However, it gradually got better. Now 1 year later it only aches a bit a few days every month.

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Thanks Stella. I was worried it was the meds but seems not. 3 months... Thats a long time. How on earth did you cope with it for so long?? 3 months of insomnia is a scary thought.

I'm having my first driving attempt at the weekend, so it is with hubby about, nervous tbh.

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I think it maybe due to scarring. I also have my bowel shaved etc. Maybe it is close to the nerve supply. I had more aches and general discomfort all the way to the right foot and right ring finger. I went to physiotherapist for months thought it was muscular or trapped nerve. But it is actually endometriosis/ operation pain. Hopefully your pain will ease over time. Just a warning first period post operation is very very bad. Take painkillers well in advance.

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I had that last week. :( It was grim but not as agonising as the 3 lumbar punctures or post op BM treatment I had in hospital. Did remind me to think seriously about progesterone pill again though.

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