Amitriptyline! Treatment for nerve damage.Anyone had this for nerve damage?

[K2023]

Hi,

Just come back from my first consultation since MTD surgery for deep infiltrating Endo and mass around ureters.Bowel ,bladder worked on and total hysterectomy .The consultant had warned me of nerve damage , by my symptoms that I explained to him today he said it is nerve damage and accept it as the new normal .He examined me and due to my explanation of burning pain and previous years of chronic inflammation in vulva area he has given me Amitriptyline and eostrogen cream for vulvadynia.Has anyone had any experiences with this ? I’m scared to take it but feel desperate for something to ease the discomfort left over from surgery and now this vulvadynia .

Any advice would be really appreciated.Also he has firmly said no to HRT he did say this before but when I questioned him today he said not unless you want the mass to grow back ,has anyone been told no to Hrt ,the mass was benign so makes it more confusing as to why ,I’m 48 years old but I was not in menopause before the surgery .

[Palomino13]

hello K2023

Sorry to hear you are not feeling good. I was also prescribed the Amitriptyline for pain with the NHS. It’s a drug that’s also used for depression. I couldn’t believe they prescribed it to me like it was nothing even through it clearly changes your serotonin levels and there are many side effects.

I did not end up taking it as the risks of taking it out weighed the benefits. The NHS seem to prescribe the cheapest drugs on the market. I was advised by a private surgeon that there are many other drugs available. I’d say if you are nervous get a second opinion with a private specialist.

Best wishes x

[K2023 in reply to Palomino13]

Hi, thank you for replying.I spent hours reading reviews and I’m definitely leaning into not taking it,I even asked him and the pharmacist if it will mess with my serotonin and when he said about the affects dizzy foggy, I said that won’t work for me as I drive kids to school across town to different schools and he said you’ll be fine 🤯 err think not .why do they do it to us ,just fob us off with anything .

[Palomino13 in reply to K2023]

The NHS is on its knees. They don’t act in your best interest as there’s no money.

I’d rather deal with physical pain than awfull effects of feeling depressed. I can’t believe that they would use this as an option. It’s terrifying.

Look in to accupuncture. It can be excellent for pain and it’s natural. You know your own body and mind x

[EndoJaz]

Hi, I am taking both of those meds, the amitripyline is meant to help with pain and sleep and the cream as I had a bladder prolapse after my hysterectomy. I’ve had the prolapse repaired but still take the cream. I’m 48. I still get lots of pain due to bowel endo so I take low dose codeine when bad as high dose makes me sick and also naproxen too. I find taking the amitripyline 2 hours before bed helps with sleep although my sleep is terrible. I have my ovaries left in so wasn’t thrown into menopause but have joint pains and insomnia so reckon I am. Maybe ask GP for advice, the balance app is also informative. Hope u have a good day x

[K2023 in reply to EndoJaz]

Hi, thank you,it seems like there isn’t much benefit to it..I’ve been in menopause 3 months induced before surgery and 3 months surgical.I’ve had joint pains terribly in hand and right foot ,I didn’t realise how quickly it affects the body ,I would definitely get your hormones checked to see if you are so you can start multivitamins to help joints .It’s another thing they keep us inthe dark about .Hope you have a nice day too.x

[EndoJaz in reply to K2023]

Yeah I’ve had surgery for tennis elbow last year and now my opposite shoulder has started hurting cos of overuse when elbow repairing. I have started taking organic moringa powder as it’s meant to be hormone balancing. Worth a try isnt it x

[Moon_maiden]

I’ve found Duloxitine better for nerve pain than Amitriptyline. It’s also the only med like these that’s officially been approved and tested for pain. It’s more expensive so GPs get a bit reluctant to prescribe.

[K2023 in reply to Moon_maiden]

does it give the same side affects ,I just can’t get my head around it being an antidepressant,I know it’s an old version but surely we don’t have to have our minds altered to be out of pain ,I haven’t took any yet .I will look into Duloxitine,thanks for the heads up on it

[Moon_maiden in reply to K2023]

There’s no evidence that Amitriptyline helps with pain, some people find it does, I didn’t particularly and gave it a good go. I think Duloxitine works differently and has proven in research to help.

If you want to avoid opiates there is also Nefopam as a painkiller

[K2023 in reply to Moon_maiden]

Thank you I will definitely look into both, it’s unbelievable to think 3/12 months after surgery and I’m told nerve pain will be my new normal .Thank you for your reply ,hope you are doing ok.xx

[Moon_maiden in reply to K2023]

Although I’m going for any investigation I can to try and get a different conclusion I might have to accept the same.

Do you get nausea as well? I take Metoclopramide for that. I also take Oramorph and use Diclofenac sometimes.

[K2023]

diclofenac I used for several years , I found it an effective pain anti inflammatory relief ,for what I had at that time . Oramorph makes me sick , I have a sensitivity to morphine based drugs . Yes nausea was a big part of my symptoms it’s calming down since surgery but some days it hits again , I was never given any treatment for that , to be honest these last two years have been my worst experience for care and appropriate treatments . I had my first surgery for endo at 17 I’m 48 now and in my honest opinion we’ve gone back over on how we are treated and cared for .