Neuropathic pain linked to endo? - Endometriosis UK

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Neuropathic pain linked to endo?

singingelephant profile image
19 Replies

Hi there,

So, I had a telephone appointment with my gynae on Friday and he said that it sounds like my pain is neuropathic, something to do with my nerves. He’s prescribe me a low dose (10mg) of amitriptyline to take every evening. Has anyone else had this? Does it help? Do you need them daily?

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singingelephant
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19 Replies
AllthatGlitters profile image
AllthatGlitters

Hi I have tried amatryptalyne which was for my fibromyalgia and it didn’t work, never heard of it being given for gynaecology problems. The only thing that helps me is tramadol x

singingelephant profile image
singingelephant in reply toAllthatGlitters

Oh really? Sorry to hear it didn’t help. I think the gynae wanted to try me on it until he’s able to investigate further x

AllthatGlitters profile image
AllthatGlitters in reply tosingingelephant

Everyone is different so it may work for you, worth a try. I am now on nortryptaline which helps me much better for some reason x

singingelephant profile image
singingelephant in reply toAllthatGlitters

Yeah, that’s true. Oh that’s interesting, do you know if its a low dosage?

AllthatGlitters profile image
AllthatGlitters in reply tosingingelephant

I take 2 tablets and sure it’s 20mg altogether but I believe I could take 5 tablets per day x

singingelephant profile image
singingelephant in reply toAllthatGlitters

Oh that’s good x

Tinkerbell16 profile image
Tinkerbell16

Yes I am prescribed amitriptyline for nerve damage in my pelvic, left hip area, after several surgeries, last one hysterectomy with endometriosis removed. I can now sleep at night, whereas previously getting up 3/4 times a night sine my early 20's. Give it a try hopefully it will help you, good luck x

singingelephant profile image
singingelephant in reply toTinkerbell16

Thank you, I’m please to hear it helps. I often wake up with pelvic / hip pain too, thank you ☺️X

Jasmin24 profile image
Jasmin24

HiI take Amitriptyline, 50mg as I get alot of pain in my pelvis, legs, lower back. As well as depression.

It definitely helps me sleep.

Some days I have to up the dose for a couple of weeks.

Some days the Amitriptyline makes me anxious and restless, but everyone is different.

See how you go, if it doesn't suit you, there are other neuropathic relief available.

singingelephant profile image
singingelephant in reply toJasmin24

Thank you for your message. I’m glad it helps you for the most part☺️.

Aino26 profile image
Aino26

Hi, I'm on Amitriptyline and started on 10mg. I take it at 7pm. I'm now on 20mg and thinking I need to go up to 30mg. It did work really well initially and I my 'electical' type of pains are still reduced but not completely. I was getting what felt like being electrocuted pain under my collar bone and now it's less shocking. I would say it's worth a try but it's unlikely to eradicate pain but could at least reduce it x

singingelephant profile image
singingelephant in reply toAino26

Thank you for your message. I’ve been advised to take it at 6pm, but some days I’m not even home from work that early😂

Aino26 profile image
Aino26 in reply tosingingelephant

I think it's different for everyone but when I started taking it, I was asleep 3 hours later which is why I take it at 7pm 🤣 I'm used to it now. See how it goes and do what works for you x

singingelephant profile image
singingelephant in reply toAino26

Oh really. My gynae said it may make me feel a little groggy the next day. I’m usually asleep by 10 most nights hah!

Aino26 profile image
Aino26 in reply tosingingelephant

I'm groggy anyway in the morning 🤣 not a morning person at all. I was told people find it makes them really groggy but I've been no more than usual once I got used to it. It took a couple of weeks I think to get used to it x

singingelephant profile image
singingelephant in reply toAino26

Hahaha! I love it! It’s not been too bad, not hugely noticed a difference yet!

Aino26 profile image
Aino26 in reply tosingingelephant

Hopefully you'll see a difference in a few weeks x

singingelephant profile image
singingelephant in reply toAino26

Thank you🤞🏻X

hiya, I see you wrote this post 2 years ago…did you ever get any answers????? I haven’t had a diagnosis of (typical) endometriosis, but I have a calcified fibroid squashing my bladder. Always had very very painful periods but in the past two years I’ve started getting hip pain, leg pain, extreme backache and weakness, numbness in my entire body, buttocks and legs and feet, pain right up to my ribs, horrendous headaches, mouth ulcers, gut problems and problems with needing to wee all the time (that one is hardly surprising)- I keep being told there is nothing wrong with me 😬😬😬😬😬 did you ever get to the route cause of your neuropathic pain?? Sometimes my legs are so numb I don’t ant to leave the house because I feel like id be walking funny and I can’t feel my feet the floor 😭😭😭

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