I have been dealing with pudendal neuralgia for 2 years now with no relief. I have had MRIs taken that show no causes. I have tried pelvic floor therapy with no progress. So, now I am starting gabapentin. Has anyone had success with this medication for tingling in the pelvic area? I am up to 600 mg and feel no improvement.
Thank you.
Hi RoxyI am in the same position but sad to say gabapentin did nothing for me.
It seems there are so many women in the same predicament- but it doesn't make it any easier knowing that.
I hope you find some ease.
Maureen
I am considering Botox. Have you tried this? I have heard it’s very limited success.
I get Botox injections into my pelvic floor (levator ani syndrome) roughly 3mthly. I have heard a lot of women say that they did not benefit from the treatment, however, I do get a level of relief, less intensity of pain and spasms.For me Botox doesn't eradicate the issues but definitely gives me relief when in a flare.
In conjunction with Botox I see a specialist women's physio who does vaginal internal/external trigger point therapy and the combined treatmens helps a great deal.
Hope you find a treatment that works for you.
I was put on gabapentin for pudendal neuralgia and had adverse reaction to it. It did not help my pain at all. Then I got an interstim which did help a great deal for about a year or two. In the last 2 years I have had pulsed radiofrequency ablation of the nerve, it has brought my pain from 8 to 0-2. I am getting them every 6 months.
I didn't mention, I get botox injections into the pelvic floor every 3 months as well. This combo is working very well for me. I gave transvaginal mesh complications. So my whole pelvic floor is one big mess!
Hi Roxy. I can’t remember the dose I managed to get to no more than 375 I think. It made no difference at all except it made me feel very tired & could not concentrate. In the end I had a nerve block which made it worse. I’m not sure that I have pudendal neuralgia it appears it’s difficult to diagnose & not easy to treat. The pain is still ongoing just taking paracetamol & pain patches which have eased it a little The pain is in my lower bowel and they think caused by nerve damage & scar tissue. I ‘ve had some very invasive surgery. Everybody reacts different all you can do is give it a try. Good luck with it all I know how difficult it is sometimes to cope with. Kindest regards.
Have what is described in literature as P.N., to a T, but no formal diagnosis and the Canadian docs out here find my case frustrating. Suffered a spinal cord injury a year ago.. this is worst symptom from that.
Almost. The spasms in my glutes, and feet are horrible.
I am being treated by a neurologist who specializes in MS, but he has only seen me in person once. In a year. But he has referred me on to a physiatrist, and a very good neurosurgeon says there is nothing operable .. so.
MS guy just sends more meds thru his nurse practitioner.
They have prescribed a trial, titration up to 2700 mg of gabapentin!
I can hardly tolerate the so far achieved dose of 200mg, 200mg… and 2-300 mg doses divided obviously morning noon and night.
The horror stories I read about gabapentin give me serious pause, and I can’t tell if my new absent mindedness of due to the bacolofen, or the gabapentin or both.
Am on what my kind attentive GP says is the maximum dose of 80 mg bacolofen daily.
Have tried to decrease the bacolofen, but I tighten up to the extent that it is unbearable. Like how much longer can I handle this, am getting worse, can’t run a step, A Botox trial in one foot hasn’t helped…
The cows are sold, I face living in a city which I have never done since University..
Losing my quality of life, the only life I know, am trained in. All my financial security.
This is desperate.
I can only say I am terrified to go without the meds, in case I get worse.. but honestly, As the spasticity and the incredible tightness … (can hardly tolerate panties, have become extremely socially withdrawn, which a woman in my field is, anyways… even losing my decent figure due to inactivity..) have not abated.. I am getting desperate.
If anyone out there found the meds help.. please speak up.
I have followed pelvic floor physio which you can find on YouTube.. the pelvic floor physio session I did attend in person was great.. but the older woman who helped me said she didn’t think she could help, as the tension she said was being driven by nerves, so it wouldn’t last.
Have asked her to see me again, she is, this upcoming week.
Short answer, Don’t think the gabapentin is helping…but the MS doc said the high dose has had SOME good results. For rare case.
But geez.. scary to take so much. I do operate machinery still. But am being very careful.
Sorry for the long post. And the inevitable typos. Got to get out and get some work done.
I hope this helps someone else if nothing else.
My heart reaches out to you. I reduced my symptoms of RECTOCELE by taking Irene Lyon's course Smart Body Smart Mind. Check her Out on Utube.
Hi Roxy. Gabapentin has helped me, but it took about three months and gradual dose increase before I felt any benefit whatsoever. I also found I needed patience and a change of physiotherapist before the physio helped. I’ve been on Gabapentin for years now, up to 1800 mcg per day at the maximum. I’ve reduced it to 1200 mcg per day and recently I’ve started only having 800 mcg on alternate days. It doesn’t get rid of the pain, but it has helped. Fortunately, I don’t seem to have any side effects, and as, over the years, the pudendal neuralgia has reduced significantly, I’m hoping that, in time, I’ll be able to come off it altogether. I hope you find something that helps you.
Hi Roxy I started to learn about mindbody illlness and how to treat it and have managed to get rid of my pain . Have had several small relapses but in general I’m back to living my full life. I started by reading a book called unlearn your pain . Many people with PN have got better using this pain reprocessing therapy
So what else did you do apart from reading the book, Amy?
Hi Tammy sorry for late reply I had pain counselling with jim prussack , joined curable and read the way out by alan Gordon. I learnt the pain is stuck in your neural pathways and I learnt how to retrain them to reassure your brain you are ok and that it’s a benign sensation eventually the pain went away completely .
Hi Arny, was that about neuroplasicity ?? I have been keenly interested in this ( had right sided pudendal neuralgia for 13 years) , I have heard of that book, I am thinking of joining cureable ( a app in the u.k for neuroplasicity)
Yes that’s correct . I no longer suffer this pain thankfully I’m 8 months without PN or pelvic pain . I’m on curable but don’t need it any longer . I had pain therapy with jim Prussack ( see him on YouTube ) and achieved release from pain
Strange! I have actually 2 days ago bought that book " the way out" by Alan gordon ,can't wait to get reading and digesting it ,think I will join curable, gad pudendal neuralgia for 13 painful long years ,tried everything and anything medically Think it is time for a different outlook, after all we are ALL neuroplastic!
No one will ever be cured by going under the knife or drugged up to the eyeballs
Going to check Jim prussack videos out on youtube as well !
Been through 7 pain clinics, got properly diagnosed in Nantes,France
But as for treatment nothing has helped
Hi Roxy. I tried gabapentin back in 2006 and stayed on it for about 6 months. Got up to 300mg 3 times a day. Did get a burning vulva any time I upped the dose but that did settle and it did take away some of the nervy feeling but I get so many side effects from all these medications which in the end outstrip their benefits. What has worked for me until fairly recently for the past 12 years or so was increasing my fitness levels with a physio to improve my glutes and core, internal massage of tight muscles and the occasional tramadol if I had a flare. I’ve been reasonably pain free for the past 10 years until a recent flare has not been helped by tramadol. Can’t find anything to take its place. Can’t tolerate amitriptyline or duloxetine . Just tried the latter and I get every side effect going so come off it and not convinced it would help the PN. With lack of sleep because of pain was put on Zopiclone. Now I can’t get to sleep without so something else to address! Not got pain at night time at the moment so it’s just anxiety. This horrid complaint is a nightmare. Doing lots of pelvic release exercises and my pain levels have subsided. Doing more internal therapy as well. Wish drugs were the answer for me. Good luck
Hi Roxy, I have been on gabapentin for almost 8 years now. I had increased the dose to 3600 and it hasn't made any difference. I also take 40mg amitriptyline with the option to increase it to 50mg. I am in the process of reducing the gabapentin to zero. I have had pudendal nerve pain for more than 8 years . I had a pudendal nerve block in London a few years ago which unfortunately made me worse. I live with this horrible condition which has shut down my social life. I cannot sit on anything but my recliner! However, I have a wonderful supportive family who make me laugh and make my life worth living. I also have a 2yr old Labrador that makes me get out each day and walk even if I have to go through the pain barrier! So, a positive approach to life is essential as are good friends and family. I hope we will find some relief to this life changing condition some day soon but until then I wish you peace and the strength to get through each day.
Hi Roxy - sorry to hear you are not feeling well - everyone seems to be different with how they react to each drug. The only one that helped me was Lyric / Pregabalin. Its taken in the AM & PM -only thing that has worked for me.
Hi Roxy,Has your doctor prescribed any form of vaginal suppository? I had been suffering for almost a year with severe pain from pudendal neuralgia, norco was the only thing that would cut down the pain. I had only minimal relief from the gabapentin. I had a diagnostic block to confirm, had a bilateral ablation and still no relief, along with months of PT. A new doctor prescribed a suppository with multiple medications(muscle relaxant, NSAID, lidocaine) and within 1 week my pain was significantly reduced from an 8-9 to 0-2.
Hi Roxy - I have been going thru what you described since 2016. Initially the muscle relaxer suppository prescribed by the pelvic dr (by the way, I’m in US) was quite effective but after 5 years of use, it began to loose its effect and caused rectum irritation. I’ve had all kinds of scans done (MRI & X-ray). All the scans showed peudendal nerve, pelvic and hips were unremarkable yet the pelvic Drs keep pushing me to do nerve blocks. I am deadly afraid of nerve blocks. Too many folks reported that it did not work for them and many said their pain was worse after the block procedure. I did physio with a pelvic floor specialist for almost a year but still couldn’t get rid of the pain. I am currently on Gabapentin 300mg twice a day. Dr said to titrate up to 4 a day. I felt like a zombie with just 3 so cut it back down to 2. Have been on Gabapentin going on 3 months & cannot say I’ve noticed much improvement. Just started with a chiropractor who does manual adjustment as well as provide pulse electromagnetic field therapy and cold laser treatment. Since I’ve only seen him twice, it’s difficult to say what the outcome maybe. I am also considering stem call treatment & plasma rich platelet injections. Need to exhaust all noninvasive options. In the US, Medicare insurance would not cover any of these treatments - they consider it medically unnecessary - so we ended up taking a second mortgage on our home to cover all the costs. Never thought that after working for 40 years, my retirement would end up like that. Praying for you.
Help Needed
New here
Is Chronic Pelvic Pain a diagnosis?
At the end of my tether! - not sure what my options are now!!
