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Pudendal Nerve Entrapment/Neuropathy/Damage
Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.
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What dosage of Topamax do you take? How long have you been taking it? Any side effects? Thanks
Last June I had a lamenectomy in my L5 disc due to a stubborn staff infection. I have been dealing with intense back pain from that. In the last few weeks I have started having pain in my tailbone and pelvic region. It has increased in intensity really fast. I have had to up my gabapentin (which gives very little relief but it's all I have.) I have alot of anxiety that there is very little the doctors can do about. When I have reported my back pain to them they say "they are very sorry". Not very reassuring! I'm going to a pain clinic tomorrow and I hope they can offer some help.
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2 ReactionsThat sounds very difficult. I know what you mean re meds that don't help much. I take that one too.
Stronger meds are worrisome though it does cross my mind. I wonder if your getting any tests for inflammation? Spreading pain is sometimes because of that. Pelvic, groin area pain is no picnic either. I feel for ya.
How'd the pain clinic appointment go?
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1 ReactionSorry I cannot remember the dosage - it was years ago. I do know that I had to stop it in 2 weeks because the side effects were brutal. Luckily, my pudendal nerve damage was helped in that 2 weeks.
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1 ReactionI joined this group in order to find info for my mom who’s had PNE and the release surgery several years ago.
@mikaylar
I have never heard of this drug before. I will make a note of it.
@1mepnurse I have had severe sitting pain but still no clear diagnosis for the last 7 months,m. 38year old mom of 3 and previously marathon runner until this came on rather acutely last summer. It has been an awful 7 months and quite isolating. Not sure it’s pudendal neuralgia but severe sitting pain and pelvic floor PT has been suspicious although pain interventionalist was less convinced. I’d love to hear your history and experience and anything that has worked. It has been so very hard. I come and go with motivation but feel for my family who has been on this long unrelenting road with me:(
@kwbethune how did she do with this and where was it done?
@dprodriguez she did really well, but if we’d found information on this earlier, she would have a more successful outcome with less ongoing issues. She dealt with the severe pain, seen several different type physicians of which none knew anything about pudendal neuropathy, for a little over two years. But she does have less pain, takes tramadol for that, and is more functional than prior to the surgery. She had the surgery in Houston TX.
@kwbethune menu remember her surgeon’s name? Did you travel out of state? It is so hard to find someone knowledgeable on any nerve related conditions besides “neuropathy” and even then, options aren’t great. Thanks for the info!