Hi, I have been diagnosed with endo and also chronic pelvic pain and neuropathic pain. I am struggling to manage all of these as they all need different treatments. I am starting to understand the different elements of my pain following referral to a pain consultant.
He prescribed pregablin which gave me migraines so I had to stop. I tried amatriptaline a while ago and the side effects weren't great on that one either.
The nerve pain I have is my genito-femoral nerve and also I think my pudental nerve.
Has anyone found any other treatments that are good for nerve pain?
Thanks.
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Eggcustard
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I`ve been there with chronic pelvic pain (tho not with endo) and it`s certainly no joke to have to cope with. I was lucky with pregabalin and didn`t have too many side effects but the best pain relief of all for pudendal nerve pain is ice. I take tramadol too for break-through pain but ice is the most effective.
Frozen peas wrapped in a tea towel, a sports ice pack....you get the idea!
Hi, thanks for the reply, I will try this. I have been told it genito femoral nerve and don't think it is PNE. There seems to be no info for this, if you look up neuropathic pain it's usually pain from shingles etc that people get when they are older. I too take tramadol but it may be affecting my blood pressure so need to find an alternative, I think I will try amatriptaline again, thanks for your help. X
An anti seizure drug like gabapentin and an anti depressant is a good combination for nerve pain but given that you can't have gabapentin (me neither) you can still try the anti depressant. I take cymbalta.
Apart from Joy's 'ice advice' not sitting and pacing activities can help too.
Hi, thanks for replying, I have been told I have genito femoral nerves in and don't think it is PNE. There seems to be no information around for this as if you look up neuropathic pain it's usually for shingles etc and things related to much older people. I will try ice, and will be having another try at amatriptaline as soon as possible. Thanks for the help, it seems the endo is the least of my problems and it's the nerve pain that isn't going anywhere x
Hi, thanks for the reply, I would think this is quite a logical conclusion too! However, I haveh ad 3 laparoscopies and am no further forward. I decided to find an endo specialist and paid privately to see him and he had now gone off sick!! Going round in circles again. I think the problem now is that because it has been there for so long regardless of the cause it is unlikely to go away. I would still like to know the cause though as it would be easier to accept a life of pain if I at least knew where it came from and could explain it to other people. Thanks again I'm sure I will posting a few more questions as this forum seems more relevant to me now than the endo forum.
Sorry - bit of a late reply - I was on amtriptyline which helped with my pain but the side effects were too much - so pain specialist gave me notriptyline to try instead. I've been on notriptyline for 3 months now and it helps with the pain & for me tiredness has been only side effect so far. Maybe worth a try. Good luck x
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