Hi everyone. I've had Pudendal Nueralgia for 3 years now, tried everything under the sun. Had nerve ablation and blocks last November that made it worse. Peripheral Nerve Disease too so generally in a ton of pain. Take co-codamol daily and have been putting of taking Gabapentin or Pre Gabalin due to the horror stories I've read on various forums. Anyone out there with nerve pain or Pudendal Nueralgia that has any experience with these drugs good or bad, I'd love to hear it.
Thanks in advance
Jodie
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Jobie18
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I use Pregabalin for chronic pain during the night but not day. This drug enables sleep (3 x 200mg is maximum) as well as negating pain. Taking it during the night means negative effects like dizziness are not an issue. Hope this helps a little
I take 150mg Pregablin twice a day. Gabapentin did not help but Pregablin helps
with burning pain. This is a drug you have to start slowly and I think a lot of doctors just automatically put people on 300 mg at night 300 mg in the morning.
This is too much. I believe I started off at 75 mg at night for a week and then took 75 mg in the morning and night and it finally made it up to 300 mg a day. This doesn’t help with spasms and it really doesn’t help with sitting any longer. I have had my condition for 12 years and just get generalities as to what is wrong with me I take tramadol 50, duloxetine, 60 mg, Robaxin 500 mg and still have problems sitting. I take one point milligram at night of lorazepam just to go to sleep. Whatever I have I just deal with the best I can because I have no other choice. I have had the stimulator put in and I’ve had my coccyx removed and still have problems. If you do try pregabalin, please start slowly rocky 68.
As someone who suffers from Diabetic Neuropathy affecting both my legs, feet , toes and hands I have over the last 13 years tried via my doctor and the consultant Neurologist many different types of pain relief.
On the question you ask here about taking Gabapentin or even worse Pregabalin you have already said it yourself saying you have heard the horror stories.
Honestly I’m happy to expand more but please avoid this route.
Taking these medications 💊 would do exactly as you have heard - make you into a Zombie!
Honestly please don’t- I wasn’t even able to find my daughters house through confusion and ended up just sitting in a chair staring out the window.
I spoke to my Consultant Neurologist last week on my check up and they no longer prescribe them, although some doctors still do.
I've had undiagnosed pelvic pain for nearly 44myears now. All tests came up negative and I'm told I'm really healthy.... I'm just crippled with pain! So they say it's a mental emotional thing so I'm seeing a psychologist who says I'm storing emotional pain in my pelvic area. Not sure the source yet but getting there. Could also be sexual guilt from a childhood thing. Who knows!! I wish I did as its really getting me down. I'm travelling to Sth Africa to stay with my daughter for 3 months and the plane trip is going to be a huge challenge! The only thing that has worked for me is legal cannibus. The strongest drugs dont touch the pain! Come back!
Hi,I to suffer from pudendal neuralgia as well as bowel issues and I have been using Pregablin for 9 months now but only on a very low dose (75mg twice a day). I haven't had any side effects from it. I do sleep at night but I have not had any dizziness. I am also on Mirtazapine.
I was afraid to go on it too and never wanted to, but due to the pain, in the end, I agreed to give it a go. I don't like being on the drug, but sometimes you just have to try these drugs to see if they help. I presume the doctors will be monitoring you?
It is still prescribed here in Australia so I am not sure where it is not prescribed any more. I also tried Gabapentin but didn't like that. Everyone reacts differently to medications. There is not one size fits all.
I guess we only ever hear of the negatives as that is what the media love to portray. How many people are going to report that it has really helped them and if they did, the media wouldn't want to know about it anyway.
I absolutely hate taking drugs but sometimes when you get desperate what alternative are there.
I am hoping in due course to get off it but fir the moment I will persist. I am not sure whether the low dose I am taking is doing much to be honest but am reticent to put it up any higher.
Don't know whether this helps or not.
Take care. Pudendal Neuralgia is a shocking condition and a lot of people don't understand it.
I have found a wonderful pelvic floor physio as well as an osteopath.
I have had 3 nerve blocks and botox into the puborectalis muscle and coccygeus muscle. I found the botox helped but, of course, all of these treatments are only a temporary solution.
I’ve been using Pregabalin for 4 yrs no for PN and I can’t do without it. I take 150mg twice a day. I did not want to live with the pain I was in so Pregabalin gave me my life back. I still can’t sit without a donut cushion but generally function well, walk very well but cannot cycle anymore. For me the Pregabalin works with no side effects. It may do the same for you so just try it. It takes a few weeks to reduce the pain. Best wishes.
Hi jobie, I suffer from pelvic pain also, I’ve bought the book, headache in the pelvis( very interesting). I’m on Duluxetine and keeping upping the dose as nothing has worked so far, so I top it up with codine. Some days are ok, but then it comes back with a vengeance and lowers my mood massively. I tried Gabapentine and didn’t like the affects.. Apparently it is linked with stress and trauma and I try to relax my body my body and mind as much as possible. I’m on the sick from a very physical/ mentally tiring job after 23 years!! Duluxetine has less side affects, but doesn’t obliterate the pain totally. Good luck and best wishes.
Thankyou, I'll make a note of the Dulexetine incase the Pregablin doesn't work. Thanks very much and I truly wish you all the best. Its not easy dealing with this condition that's for sure especially when the medical world has no idea of hiw to truly treat this condition.Jodie x
good morning..I to suffer with p/n for about 7 years over the years I’ve tried all of the above drugs including Gapapentin I had reactions to over 8 different medications 💊..I stoped all drugs and procedures with the medical field..I went to a chiropractor who specializes in women’s health care found an herbalist read the book by Amy Stein “Healing Pelvic Pain” and the dvd yoga by Dustine Miller “Your Pace Yoga” 🧘♀️ I also meditate I take valerian root and hops up to 3 times a day …I Am No doctor..I can only speak for my self and my personal journey..the drugs made me worse the more the doctors tried to help me the worse I felt…it has been a long process however I feel so much better then I did while working with the medical field..I will never be the way I was before the p/n but have accepted that what I never knew I could do is amazing…I found again for myself that my body did not respond well to the medical treatment…and when I accepted that I would not be as I was I started to heal..I can now sit for over 2 hours I am able to walk further and live a normal life..I hope this helps you..take care
Hi.Thankyou so much for you response, I think we had a brief chat a couple of years ago and I got the book and a tincture if hops 🤢Holy cow that stuff is gross and I'm pretty good with being able to stomach weird stuff but my goodness! I've just ordered some valerian capsules so I'll give that a go for sure and maybe once I've tried that add the hops in but definately in capsule form next time🤣. I'll try them for a week or so before I try the pregabalin but im truly at the point where I can't function now the pain is so bad so we'll see. So pleased to hear you're at a better place and you've found a natural way to cope with it all. Does the valerian make you sleepy if you're taking it 3 times a day? I don't want to be zonked out. And can I ask what your pelvic chiropractor does? I've seen so many chiros and osteos and they've never been any help sometimes I feel my tail bone needs adjusting but they never want to go there, they just crack my back and send me on my way!
Also have you or anyone else reading this who has PNE ever been told you have a virus in nervous system, the nuerologist said his guess was this was the case with me.
I have never been told of a virus I take 2 valerian root and 2 hops up to 3 times Daily ..no I do not get tired from it ..it eats the pain try to find an herbalist the book was very helpful..have you seen a pelvic pain dr…not a pain dr a dr that the deals exclusively in pain in the pelvic area I think this is the difference in dr.’s I saw dr Marvel in Annapolis MD and got the correct diagnosis then found my herbalist…again you may have to do some researching on the web for yur area..this is how I started to feel better I found the dr.’s we’re not familiar with pelvic pain you need a specialist in that field ..I felt like a dart board with the dr.s they would keep trying and nothing stuck they put me thru hell…good luck I wish you all health
Sorry it has taken me this long to get back to you….i use the valerianroot by Now Brand 500 mg capsuals I take 2 (total of 1000mg) with 2 hops flower capsules by natures way 620 mg (total of 1240 total) up to 3 times a day approx 5 to 6 hours apart..I am now on an as needed basis..I like this treatment due to no side effects I know people that took narcotics such as oxycodone with horriable addiction problems ..I do not know a dr that would prescribe that drug…I just wasn’t able to take any meds without the side effects..I hope this helps please keep me posted
Thankyou so much, ok I'll give that a ago. I've been taking 2000mg of the valerian in the morning which is fine but it does make me sleepy a few hours later so i'll half the dose and see how that goes. I'll try the hops too. I just did a little bit of reading up and it seems the Valerian ups your GABA neurotransmitter which potentially could be good for pain management rather than Gabapentin and Pregabalin, especially if you can do it in a more natural way. I'll try anything at this point😂🙏
I haven't used those drugs, so ignore this if it's not relevant. Just wanted to say I had bad genital/pudendal pain earlier this year, only on one side, for about a month. I went to a local chiropractor for pinchy lower back pain (on the other side) that I never thought was related, and after one treatment, ALL the pain was gone. It seems twisted posture, built up over years, was hurting the ilio-inguinal and genito-urinary nerves. Just my experience, in case you haven't tried something like that yet.
Hi there- Sorry to hear that you’re suffering. I haven’t been diagnosed with PN, but I have shooting pain that feels like nerve pain, and chronic pelvic pain due to what a surgeon thinks is endometriosis (I’m having surgery for this in June). Just wanted to chime in on the medications, as I used Gabapentin at one point and Pregabalin at another. I didn’t like the side effects…the main one being weight gain and feeling really bloated all of the time (on top of feeling pretty “out of it.”) But maybe they just affected me differently. When I got off of these meds, I still had pain, but felt better overall. I now take Duolextine and Oxycodone every day to manage the pain, and I don’t have the side effects that the other meds caused. But I don’t want to be on these long-term, of course. Anyway, I hope this helps, and hope you feel better soon!
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