Endo nerve pain - suggestions welcome - Endometriosis UK

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Endo nerve pain - suggestions welcome

TennisAM profile image
10 Replies

Hello

Has anyone been prescribed a painkiller or anything else that's helped with endo nerve pain?

I take Etoricoxib for pain and that works pretty well but I have bowel involvement and I believe that the endo is causing nerve issues, this pain isn't covered by the Etoricoxib.

I'm not interested in amytriptline as an option.

Has anyone found anything natural that reduces endo nerve pain?

Thank you

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TennisAM profile image
TennisAM
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10 Replies
MyStar86 profile image
MyStar86

Hi, I can’t help except say that I suffer the same thing!!! And also don’t have anything to help it the doctors don’t know what to use and it drives me mad prickling and burning I have terrible bowel side of things too. Have you tried gabapentin or pregablin neither worked for me but they are both nerve pain meds. Are you on the pill? I found different contraceptive pills make it worse but still struggling to find the right combination. Let me know if you do find anything and hopefully some one will reply with some better advice. Take care and good luck I feel your pain. Just waiting for my second surgery to remove endo.

TennisAM profile image
TennisAM in reply to MyStar86

Thanks for your reply. Sorry to hear nothing has worked. It can feel desperate can't it. I'm on the pill (femodene) but it doesn't help at all to reduce pain. Tried so many that I've given up searching for one that works. I get too many side effects. Have you tried a tens machine? I need to get one. I haven't been offered those meds but I have seen them and felt they had a long list of side effects. Not sure I want those side effects to cover up the pain. Will get in touch if I find something that works. I'm waiting for surgery too (been on gynae list for 13 months already and 6 months on bowel specialist's list). Hope you get your op date soon xx

MyStar86 profile image
MyStar86 in reply to TennisAM

All pain meds come with side effects gabapentin just didn’t affect me at all but pregablin made me feel like it messed with my head so I didn’t take that. It depends where your pain is re the tens machine…..I get the nerve pain in my guts where my insides feel like they have been rubbed with deep heat so a tens machine wouldn’t work for me on that but the tens can be good for back pain etc. I am seeing my nice gynaecologist on Monday where he was doing to ask the anaesthetists for some different nerve pain meds as I can’t take anything with serotonin interactions which is what they usually use for nerve pain so I will let you know if he finds anything for me. I’m seeing the bowel surgeon on Thursday so I will see what he says re surgery then hopefully won’t be too long to wait as thankfully I have private insurance that’s the only way I’ve moved so fast from diagnosis. Unlike my gastro side which is nhs I waited a year to see him then haven’t heard from him since over 3 months without even a clinic letter :( not good as I’m confused what’s causing me all the issues but my guts drive me mad then the endo issues on top I just get confused.

I was on femodette when I developed the endo. Just starting the progesterone only pill this week to hopefully stop the bleeding as it is never ending goes on for months :(

I will let you know if I find anything for the nerve side and good luck looking after yourself whilst waiting for the doctors.

Take care xx

TennisAM profile image
TennisAM in reply to MyStar86

Hey, did you get any useful info from the anaesthetist for your bowel pain?

MyStar86 profile image
MyStar86 in reply to TennisAM

No he forgot to ask for 8 weeks and then when he did all the anaesthetist offered was pre surgery CBT!!!! No joke I was/am livid going to try and see a pain management specialist separately otherwise I’m left with nothing :( how are you doing?

TennisAM profile image
TennisAM in reply to MyStar86

That's so frustrating and infuriating! I do hate how they think CBT is the cure for all pain. It's so ignorant and uneducated. So sorry they've done this. I'm still having the bowel pain, no sign of an op date and no useful painkiller suggested.

Not sure where you live but I've been referred to a pain medicine specialist whose meant to be great for endo pain so if you're near London then happy to send you a message with his name. Tbh not sure you need to live nearby as I'm sure they do telephone calls/video.

MyStar86 profile image
MyStar86 in reply to TennisAM

I know CBT is a load of crap as nerve pain is still real physical pain so talking about it doesn’t take it away!!!!

That sounds amazing, I am in Dorset so it’s not that far too London :) please send me the information because I am definitely interested I’ve had enough of being told I have neuropathic pain but no real help for it. They just use different serotonin drugs which do not help me and make me feel worse 😡. I heard calcium channel blockers can help but without q specialist my gp couldn’t prescribe it so researching doesn’t really help me.

Thank you again and I hope it goes well with the specialist I look forward to your message and I will look into it as London is easily assessable for me xx

TennisAM profile image
TennisAM in reply to MyStar86

I've sent you a message xx

MyStar86 profile image
MyStar86

Hi, I just remembered on the natural side that magnesium can be helpful for nerve pain but depends what your bowel issues are as they can help with going if you have constipation (I can’t take it as mine is the opposite) also B vitamins also help with nerve pain and a lot of people with endo and gastric issues are deficient in B12 so worth a thought. I always take the viridian brand of vitamins as they are pure supplements no nasties added. Might help you a little in a natural way. Good luck xx

TennisAM profile image
TennisAM in reply to MyStar86

Thank you for the message above and this one too. I am lucky I don't have any side effects from Etoricoxib, but agree there's normally side effects from all of them. Will ask my GP about the ones above.

I take magnesium glycinate for the least effect on my bowel. I actually haven't noticed a reduction in pain tbh but I think it's useful for pms and other things.

I take b vitamins too. Last b12 test was fine so I'm a little baffled. The pain feels insurmountable.

Thanks for the offer, would love to hear what the anaesthetists says.

If i come up with anything I'll reply too. Take care xx

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