Gabapentin advice please ladies - Endometriosis UK

Endometriosis UK

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Gabapentin advice please ladies

emm27 profile image
3 Replies

Hey warriors, I hope you're all having a good day. I was hoping for some of your experiences of Gabapentin. For context - 2 laps in the last 2years,last one to excise recto vaginal endo. Apparently they removed all endo and it won't return for decades ! ! Currently waiting for scan results but ultimately my gynae has released me back to the GP. I still have endo type pain and I'm taking Desogestrel back to back,Naproxen and have just started Gabapentin (2 tablets today,3 tomorrow). Has anyone found it to help relieve pain or had any side effects ?? Feeling very let down and fobbed off by gynae 🙁

Thanks in advance xx

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emm27 profile image
emm27
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CryBaby91 profile image
CryBaby91

My gosh, was your surgery done by a specialist? A specialist should know that 2 in 5 women have recurring endometriosis within 5 years of surgery! And moderate to severe endo needs a specialist.

I was on it years ago and never had any issues tbh! Sorry I can't say more. Hopefully some other peeps can! Xx

emm27 profile image
emm27 in reply to CryBaby91

He is a general gynae, although the hospital have a specialist endo nurse , who I've spoken to 4 times in 2 years. I'm really annoyed to be honest and wish I had said to him at the time that I'm clued up due to this site, and I know it can return sooner. Feel like complaining or something. I'm only on day 2 of the Gabapentin, can't say I'm noticing less pain, but I do feel quite trippy !!A month trial and then possibly Decapeptyl. I had to have it before the last surgery, menopause for Xmas yay.

Thanks for replying, I hope you're endo is not too bad. Keep fighting endo warrior xx

CryBaby91 profile image
CryBaby91 in reply to emm27

Gosh, specialist endo nurse is good but not great if you don't have a proper specialist surgeon too! Is there a proper decent endo specialist centre in your reach? For example in my case I originally went to my local hospital, they were general gynae too, but because they failed to help me (and my symptoms were severe) I managed to get a second opinion. I got to choose where I wanted to go, so I paid for a private appointment with the endo specialist I researched about from a city over :) he agreed I needed a lap and said he would write to my GP to request to see me on his NHS list. So when I asked to be referred I had his backing, which helped MASSIVELY. Obviously not everyone can pay private, I used a credit card tbh. But it got me in front of him, helped me get the referral to him, and now I have a fantastic gynae and nurse with a multidisciplinary team in the background too. Worth thinking about!

Yes I would 100% speak to PALS because they shouldn't be just leaving you and discharging you back to your GP, endo doesn't always respond to surgery and he should know that. He should of at the very least asked you how you felt before doing it! Even if a complaint isn't made PALS could help open a dialogue and get your feelings across about your aftercare. Which you deserve to be able to express!

Oh man, maybe they will help within a few days? Are you at max dosage? I wouldn't leave it more than 1 week because you shouldn't be left to suffer in pain, so if they don't work they either need to adjust the dose or rethink the meds.

Oh no :( merry menopause lol. If it helps I'll likely be in the same boat! I'm going to have my third gonapeptyl injection next week, the hot flushes have been murder in this heat! I've no idea what they plan to do when it gets to a year though, apparently it shouldn't be done long term so I'm not sure what the plan is when my periods have to return! My endo is fairly calm currently (whispering very quietly so not to let the endo hear me lol) because of the recent surgery and injections. But it's definitely making its presence known some days! Wish it would sod off if im honest lol Keep fighting too love! xxx

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